Saturday, December 10, 2011
Thursday, November 3, 2011
Back from Disneyland
We had a GREAT time in Disneyland. Lots and lots of walking and sore feet but it was worth it! It was a great time of year to go; the weather was great and there were hardly any lineups. We also went to Mickey's Halloween Party at Disneyland on Tuesday night. That was tons of fun. We dressed up as Harry Potter characters and the kids had a blast. I posted some pictures at the bottom of the blog. Thank you to everyone at the Surrey Courthouse for the Disneyland trip!
Back to reality...
The week before Disneyland I had my second ER visit. I had bad pain in my side and was having difficulty breathing; felt like my ribs were crushing my lungs so I couldn't take a full breath. It ended up being a kidney infection - probably made worse from chemo a few days before and not drinking enough water. For some reason water is disgusting after chemo - weird. Anyway, had a REALLY good ER doctor and I was able to go back each day for IV antibiotics to make sure I would be ok for Disneyland. My breathing was still a little restricted but it was ok for most of our travelling and walking. During all this my back has been getting a little worse - feels like it's nerves around my spine. I know that I do have cancer on my spine so I figured it was that getting worse. Since going off the Iniparib (parp) combo of chemo, my skin mets have gotten WAY worse, in a different area than before, but really bad - uncomfortable, itchy and burning - horrible. So basically, I"m assuming all the cancer is getting worse and know that I really need to get back on chemo. I had chemo schedule for the Wed after DL so I wasn't too concerned. However, on Tuesday, in the middle of the day, out of nowhere, my back started REALLY hurting - felt like nerves causing the pain and nothing would make it better. I went to the ER at Lions Gate (in case I had to stay overnight - I wanted to make sure I could still get my chemo) The Dr there was really good as well. Although, one of the first things he said was - "I was looking over your files and see you had a PET scan recently but I can't seem to find the written report?" ARGGGHHH!! SO frustrated about that. I STILL don't have that report and it's been almost a month! The BCCA is so worried about who they let have the scan because of the cost and high demand and then they don't even bother to do the report - which basically makes it a complete waste of time and money - they've paid for the scan but there are NO results, so what's the point?! ANYWAY, enough about that. They gave me stronger pain meds that helped with my back and it's actually been ok since and I haven't needed to use them. They did a CT and chest xray which showed some fluid in my lungs (which I'm not really sure what that means - is it cancer? Not sure? I was too drugged at the time to ask) that is probably causing the breathing difficulties. The er dr said that it's not too bad and I can wait to see if the chemo clears it up; if not then I will need to have it drained.
Yesterday, when I went to have chemo, Dr. Smiljanic said that he will put me back on the Gemcitibine, Cisplatin and Avastin which worked so well for me back in Dec/Jan. However, he said if it doesn't start working right away we will have to change to something else - possibly Abraxane and then my hair will fall out again :(
I hate to bitch and complain about things on here so please know that for every "one" thing I complain or vent about there are AT LEAST 20 other things that I could be complaining about; things that most people would be appalled to hear about our medical system and the things you and your family have to go through. Most of the things are just common errors legitimately caused by lack of funding, under-staffing and overworked doctors which we hear about all the time on the news. But when you are in the middle of it, you realize just how bad it is. There are SO many things, I feel like if I were to complain about them, or even mention every single thing, I would sound crazy. I'm not even going to get into the ridiculous details about the PET report but just know that for me to even mention on here, it's BAD! Most of the stuff, I just feel like there's no point in getting upset about so I don't. I originally started this blog to get out information efficiently. Back in December there was so much going on and new information on a daily basis so this was the best way to get it out- even for close family and close friends. I've had many people tell me that they are still following my blog and I can see from the blog "stats" that there are people reading it all over the world?! I suppose that is friends of friends? Most of the time these days I feel like having to update my blog is kinda a pain in the ass but mostly just because I don't really feel like I have anything interesting to write. I could probably write a pretty comical book about all the crazy cluster, gong-show screw-ups I'm enduring on a regular basis but that seems a little counter-productive?! lol
Anyway, thank you to all of you who still bother to check for updates :O) xoxoxo
Back to reality...
The week before Disneyland I had my second ER visit. I had bad pain in my side and was having difficulty breathing; felt like my ribs were crushing my lungs so I couldn't take a full breath. It ended up being a kidney infection - probably made worse from chemo a few days before and not drinking enough water. For some reason water is disgusting after chemo - weird. Anyway, had a REALLY good ER doctor and I was able to go back each day for IV antibiotics to make sure I would be ok for Disneyland. My breathing was still a little restricted but it was ok for most of our travelling and walking. During all this my back has been getting a little worse - feels like it's nerves around my spine. I know that I do have cancer on my spine so I figured it was that getting worse. Since going off the Iniparib (parp) combo of chemo, my skin mets have gotten WAY worse, in a different area than before, but really bad - uncomfortable, itchy and burning - horrible. So basically, I"m assuming all the cancer is getting worse and know that I really need to get back on chemo. I had chemo schedule for the Wed after DL so I wasn't too concerned. However, on Tuesday, in the middle of the day, out of nowhere, my back started REALLY hurting - felt like nerves causing the pain and nothing would make it better. I went to the ER at Lions Gate (in case I had to stay overnight - I wanted to make sure I could still get my chemo) The Dr there was really good as well. Although, one of the first things he said was - "I was looking over your files and see you had a PET scan recently but I can't seem to find the written report?" ARGGGHHH!! SO frustrated about that. I STILL don't have that report and it's been almost a month! The BCCA is so worried about who they let have the scan because of the cost and high demand and then they don't even bother to do the report - which basically makes it a complete waste of time and money - they've paid for the scan but there are NO results, so what's the point?! ANYWAY, enough about that. They gave me stronger pain meds that helped with my back and it's actually been ok since and I haven't needed to use them. They did a CT and chest xray which showed some fluid in my lungs (which I'm not really sure what that means - is it cancer? Not sure? I was too drugged at the time to ask) that is probably causing the breathing difficulties. The er dr said that it's not too bad and I can wait to see if the chemo clears it up; if not then I will need to have it drained.
Yesterday, when I went to have chemo, Dr. Smiljanic said that he will put me back on the Gemcitibine, Cisplatin and Avastin which worked so well for me back in Dec/Jan. However, he said if it doesn't start working right away we will have to change to something else - possibly Abraxane and then my hair will fall out again :(
I hate to bitch and complain about things on here so please know that for every "one" thing I complain or vent about there are AT LEAST 20 other things that I could be complaining about; things that most people would be appalled to hear about our medical system and the things you and your family have to go through. Most of the things are just common errors legitimately caused by lack of funding, under-staffing and overworked doctors which we hear about all the time on the news. But when you are in the middle of it, you realize just how bad it is. There are SO many things, I feel like if I were to complain about them, or even mention every single thing, I would sound crazy. I'm not even going to get into the ridiculous details about the PET report but just know that for me to even mention on here, it's BAD! Most of the stuff, I just feel like there's no point in getting upset about so I don't. I originally started this blog to get out information efficiently. Back in December there was so much going on and new information on a daily basis so this was the best way to get it out- even for close family and close friends. I've had many people tell me that they are still following my blog and I can see from the blog "stats" that there are people reading it all over the world?! I suppose that is friends of friends? Most of the time these days I feel like having to update my blog is kinda a pain in the ass but mostly just because I don't really feel like I have anything interesting to write. I could probably write a pretty comical book about all the crazy cluster, gong-show screw-ups I'm enduring on a regular basis but that seems a little counter-productive?! lol
Anyway, thank you to all of you who still bother to check for updates :O) xoxoxo
Thursday, October 20, 2011
Guest Article by Trevor Bradshaw
Remembering the Sacrifices of Breast Cancer Patients
We’re nearly two weeks into October, which is of course National Breast Cancer Month, and although I’ve seen plenty of pink (on everything from football players cleats to sunglasses) there’s hardly been any real dialogue about the serious health implications of breast cancer or information about the importance of breast exams and screening. With the lack of any real discussion surrounding breast cancer this October it’s probably pretty safe to say that National Breast Cancer Month has become a referendum of pink ribbons, sentimental fund-raising, and saucy t-shirts, when it ought to be a remembrance of the struggle that an estimated 1 in 8 women will encounter throughout their lives.
By trivializing National Breast Cancer Month, we run the risk not only of trivializing one of the deadliest, most dangerous forms of cancer- we run the risk of alienating the women who have survived it. Our focus instead should be on honoring and remembering those women who have been diagnosed, and ensuring that they receive the best care and quality of life possible.
In particular, there have been thousands of brave women who have volunteered for experimental clinical trials despite significant risks to further our understanding of cancer. Clinical trials, which are studies of new treatments and medicines conducted on actual breast cancer patients before being released to the general public, are an indispensable resource to future medical gains because they allow doctors to assess the benefits and effects of different treatments in a real-world setting. As such, when breast cancer patients volunteer for clinical trials they are further assisting in medical research and helping the thousands of women who have yet to be diagnosed. Of course, clinical trials often have a multitude of risks, including the chance of serious or unpleasant side-effects. Everyone has heard the talking points at the end of pharmaceutical commercials listing the side-effects, and it’s in clinical trials that those side effects are diagnosed. Even worse, the treatment or medicine administered in the clinical trial may ultimately prove to be ineffective.
Of course, breast cancer patients aren’t the only ones who volunteer for clinical trials- there are currently Hodgkin Lymphoma clinical trials, mesothelioma clinical trials, and many others- but for National Breast Cancer Month we ought to remember the sacrifices and struggles that millions of women have made rather than focusing on “feel-good fund-raising activities.”
Friday, October 14, 2011
Just a quick update... no PET scan results yet - LONG story. I have a report but it's the wrong report because it was compared to the wrong scan. Anyway, the results aren't looking great but I don't know when I'll get the specifics - another long, frustrating story. Regardless, Dr. Smiljanic wants to take me off the Parps because I'm having too many delays for it to work properly :( I agreed and we started on the old chemo from back in December that seemed to work so well. I started my Day 1 today, will skip my Day 8 because it would be right before Disneyland and hopefully I can get a transfusion on that day so that I will have some more energy. When we get back I will start Day 1 right away on Wed and have Day 8 on Wed as well, and then go back to Fridays. (We still haven't told the kids about DL)
I'm considering making this website a members only which would mean if you want to read you would have to sign up and then sign in or something like that - it's not that big of a deal I don't think... I just don't like the idea of this popping up when our last name is googled because Treydon is becoming a very good reader and could understand a lot of what I'm writing and also, I wouldn't want his friends having access to this information. I am assuming that any parents who are reading my blog would be very careful not to share the information with their children or talk about it when their kids are around as we are very careful with the information we share with our kids. I would be very upset if Treydon had to hear stuff about me from his friends who may have overheard their parents etc...
Oh and also, Treydon seems to be doing much better on his antibiotics and is running around being his usual self! (after missing 7 days of school!)
I'm considering making this website a members only which would mean if you want to read you would have to sign up and then sign in or something like that - it's not that big of a deal I don't think... I just don't like the idea of this popping up when our last name is googled because Treydon is becoming a very good reader and could understand a lot of what I'm writing and also, I wouldn't want his friends having access to this information. I am assuming that any parents who are reading my blog would be very careful not to share the information with their children or talk about it when their kids are around as we are very careful with the information we share with our kids. I would be very upset if Treydon had to hear stuff about me from his friends who may have overheard their parents etc...
Oh and also, Treydon seems to be doing much better on his antibiotics and is running around being his usual self! (after missing 7 days of school!)
Wednesday, October 12, 2011
update
Ok. I had to remove the "count up" because I couldn't stand the millisecond counter; that was obnoxious!
Here's my update:
Last Thursday I had a PET scan. They gave me the disc when I left as I had a chemo appointment the next day so I could give it to my doctor. I brought my laptop with me so I could check it out as soon as I was done but my damn laptap wouldn't open it! Anyway, when I got home I was able to open it; it was very difficult to read. I could clearly see that there is still cancer in multiple spots but it was very difficult to compare it to the last one. I was hoping that since I would be at the clinic all day Friday getting my chemo that the written report would come in; of course it didn't (I won't get into the mix up with that right now... maybe tomorrow if I'm in that kind of mood) I have another appointment tomorrow so I should get the results then. I'm really hoping for at least stable so I can continue on this chemo. That might sound weird to those of you who don't have experience with chemo and aggressive cancer but basically, there are a limited number of chemos to try so I'm not super eager to go plowing through them. I will update again after I get my PET results and talk to the dr about what they mean in terms of treatment.
Last Friday I was suppose to start Day 1 of my 5th Cycle but it had to be delayed AGAIN. My hemoglobin and platelets were too low so I ended up having another blood transfusion. It's getting a little stressful because we have our Disneyland trip booked for the 23rd and I want to be well enough to do all the walking but I also don't want to have to miss too many treatments. If Day 1 starts this Friday (which it better!) then I will have to skip Day 8 as that would be two days before Disneyland. Then I will just start Day 1 of my 6th cycle right when we get back. The nurses at Lions Gate Chemotherapy booking office have been super accommodating in all my scheduling requests. We haven't told the kids about Disneyland yet. Firstly, I want to make sure that I can actually go before I tell them and then, we also want it to be close to the date so they don't have to count down too many sleeps (even though that's part of the fun!) ;)
Our Thanksgiving weekend wasn't that great. Darren took Treydon into Children's Hospital on Saturday morning because he had really bad stomach pains. He had been sick since Wed evening with flu like symptoms but these stomach pains were REALLY bad. The doctor there figured it was just the flu. While they were out I was tidying the house (lots of energy from the transfusion the day before) and I started having troubles focusing. I was sitting down at the computer and I couldn't read the screen because of weird squiggly lights coming in from my peripheral vision. I called the nurses line and of course they told me to go straight to the hospital and that I should see a dr within an hour. So Treydon had just come back and now Darren had to take me to the ER. He decided we should just go to Surrey because it was closest (BAD idea and I will NEVER go back there again) We sat in a waiting room full of sick people, wearing uncomfortable masks sitting uncomfortable chairs for over 6 hours before we saw a dr. And this was even after I explained my entire history and exaggerated my low white blood counts. Then I had a brain CT because they figured it was probably brain tumors. We waited over an hour for those results (which were fine, thank god) and by the time we got out of there it had been 8 hours! At least I was feeling better and the CT came back clear. They have referred me to a neurologist but I'm hoping I just over did it with the cleaning - so clearly I can't do anymore cleaning ;) Then Sunday rolls around... Treydon is too sick to go for Thanksgiving dinner and is VERY upset he can't go so I stay home with him. At about 8pm he spikes a fever so i give him a big dose of Tylenol. Within 15min he's complaining of right side lower abdominal pain. Dr. Google tells me he has an appendicitis so I take him back to Children's. Of course, all his symptoms get better but now I'm not sure if it's the Tylenol I gave him or the stomach pain really is gone. Anyway, we wait there almost two hours and get an xray right away and the dr says it looks like he has pneumonia; it's not too bad but he prescribes antibiotics and we are on our way.
That's my update for now. I will update again in the next few days.
Here's my update:
Last Thursday I had a PET scan. They gave me the disc when I left as I had a chemo appointment the next day so I could give it to my doctor. I brought my laptop with me so I could check it out as soon as I was done but my damn laptap wouldn't open it! Anyway, when I got home I was able to open it; it was very difficult to read. I could clearly see that there is still cancer in multiple spots but it was very difficult to compare it to the last one. I was hoping that since I would be at the clinic all day Friday getting my chemo that the written report would come in; of course it didn't (I won't get into the mix up with that right now... maybe tomorrow if I'm in that kind of mood) I have another appointment tomorrow so I should get the results then. I'm really hoping for at least stable so I can continue on this chemo. That might sound weird to those of you who don't have experience with chemo and aggressive cancer but basically, there are a limited number of chemos to try so I'm not super eager to go plowing through them. I will update again after I get my PET results and talk to the dr about what they mean in terms of treatment.
Last Friday I was suppose to start Day 1 of my 5th Cycle but it had to be delayed AGAIN. My hemoglobin and platelets were too low so I ended up having another blood transfusion. It's getting a little stressful because we have our Disneyland trip booked for the 23rd and I want to be well enough to do all the walking but I also don't want to have to miss too many treatments. If Day 1 starts this Friday (which it better!) then I will have to skip Day 8 as that would be two days before Disneyland. Then I will just start Day 1 of my 6th cycle right when we get back. The nurses at Lions Gate Chemotherapy booking office have been super accommodating in all my scheduling requests. We haven't told the kids about Disneyland yet. Firstly, I want to make sure that I can actually go before I tell them and then, we also want it to be close to the date so they don't have to count down too many sleeps (even though that's part of the fun!) ;)
Our Thanksgiving weekend wasn't that great. Darren took Treydon into Children's Hospital on Saturday morning because he had really bad stomach pains. He had been sick since Wed evening with flu like symptoms but these stomach pains were REALLY bad. The doctor there figured it was just the flu. While they were out I was tidying the house (lots of energy from the transfusion the day before) and I started having troubles focusing. I was sitting down at the computer and I couldn't read the screen because of weird squiggly lights coming in from my peripheral vision. I called the nurses line and of course they told me to go straight to the hospital and that I should see a dr within an hour. So Treydon had just come back and now Darren had to take me to the ER. He decided we should just go to Surrey because it was closest (BAD idea and I will NEVER go back there again) We sat in a waiting room full of sick people, wearing uncomfortable masks sitting uncomfortable chairs for over 6 hours before we saw a dr. And this was even after I explained my entire history and exaggerated my low white blood counts. Then I had a brain CT because they figured it was probably brain tumors. We waited over an hour for those results (which were fine, thank god) and by the time we got out of there it had been 8 hours! At least I was feeling better and the CT came back clear. They have referred me to a neurologist but I'm hoping I just over did it with the cleaning - so clearly I can't do anymore cleaning ;) Then Sunday rolls around... Treydon is too sick to go for Thanksgiving dinner and is VERY upset he can't go so I stay home with him. At about 8pm he spikes a fever so i give him a big dose of Tylenol. Within 15min he's complaining of right side lower abdominal pain. Dr. Google tells me he has an appendicitis so I take him back to Children's. Of course, all his symptoms get better but now I'm not sure if it's the Tylenol I gave him or the stomach pain really is gone. Anyway, we wait there almost two hours and get an xray right away and the dr says it looks like he has pneumonia; it's not too bad but he prescribes antibiotics and we are on our way.
That's my update for now. I will update again in the next few days.
Thursday, September 29, 2011
"Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is a disease. For 65 percent of those who are diagnosed, it will be the eventual cause of death. When we ignore reality in exchange for feel-good fund-raising activities, we alienate and forsake those for whom cancer is a major cause of suffering." -Gayle Sulik, author, "Pink Ribbon Blues"
Saturday, September 24, 2011
Saturday, September 10, 2011
I've been delayed two more times since my last post. My platelets were still too low even after I had another blood transfusion. I saw Dr. Smiljanic at Lion's Gate on Tuesday and Friday. He was given permission from the Special Access people to change up the protocol schedule as needed. So I will only be going once a week from now on; I will have a Day 1 and Day 8 and I won't be starting Day 1 until next Friday. Sucks because it always seems like I can "feel" the cancer getting worse whenever I'm delayed so that's pretty stressful. But I'm trying to enjoy the extra time off feeling well.
I've recently learned that I'm not technically Stage IV. Basically, you stay the same stage as you were at diagnosis and then you add to it. So I have Stage 3 TNBC that has metastasized (which means it has spread). Doesn't really mean anything different I just thought it was interesting that I learned something new when I thought I was already an expert on the subject ;)
I think I wrote about this before but...I always have people asking me how much longer I will be doing this chemo. Basically, I will doing this chemo for as long as it works or as long as my body can tolerate it. I just talked to another woman (online) who has done 10 cycles of this chemo/parp and just got a clear pet scan. Her doctor told her to stay on it for as long as she can. When I'm in the middle of the chemotherapy weeks and feeling awful, the thought of this is overwhelming. However, when I'm feeling better on my off weeks, it is much easier to accept.
We were able to get away twice on my weeks off (off chemo) this summer. Kathy's dad let us stay at his place in Whistler for a few days and we went to Birkenhead Lake with our friends Nadine and Mike. We all had a great time at both places so that was really nice.
You probably noticed that I've added the "count-up" button since my cancer diagnosis. I saw it on someone elses blog and she is at like 1400 days so I thought it was kind of cool.... I guess someone else will have to stop it if I die; ok, that's kind of weird.... oh well, I'm keeping it anyway. LOL
I've recently learned that I'm not technically Stage IV. Basically, you stay the same stage as you were at diagnosis and then you add to it. So I have Stage 3 TNBC that has metastasized (which means it has spread). Doesn't really mean anything different I just thought it was interesting that I learned something new when I thought I was already an expert on the subject ;)
I think I wrote about this before but...I always have people asking me how much longer I will be doing this chemo. Basically, I will doing this chemo for as long as it works or as long as my body can tolerate it. I just talked to another woman (online) who has done 10 cycles of this chemo/parp and just got a clear pet scan. Her doctor told her to stay on it for as long as she can. When I'm in the middle of the chemotherapy weeks and feeling awful, the thought of this is overwhelming. However, when I'm feeling better on my off weeks, it is much easier to accept.
We were able to get away twice on my weeks off (off chemo) this summer. Kathy's dad let us stay at his place in Whistler for a few days and we went to Birkenhead Lake with our friends Nadine and Mike. We all had a great time at both places so that was really nice.
You probably noticed that I've added the "count-up" button since my cancer diagnosis. I saw it on someone elses blog and she is at like 1400 days so I thought it was kind of cool.... I guess someone else will have to stop it if I die; ok, that's kind of weird.... oh well, I'm keeping it anyway. LOL
Saturday, August 13, 2011
My last chemo was July 29. My hemoglobin was so low that they decided to give me a blood transfusion. They also got me set up to start Eprex injections. The Eprex will help my hemoglobin but it takes a few weeks to kick in so we started it the same day as the transfusion. Since then, I've been feeling great; lots of energy and no problems with breathing. So it was very surprising when I showed up yesterday to start Day 1 chemo to find out that I was going to have another delay. It seems that now my platelets are too low. Just when I thought we had it all figured out with Nuepogen for white cells and Eprex for hemoglobin... I will have to wait until Monday (which is suppose to be Day 4 treatment) to start Day 1 which now screws up my schedule again but not by too much. So instead of having treatments Friday, Mondays it will be Monday, Thursdays. The biggest problem is that it messes up everyone who has offered to drive me on Fridays. Oh well, I'm sure we'll get it figured out. Anyway, that's about all I have to report!
Thursday, July 28, 2011
My treatment last Tuesday was delayed until Friday because my blood work came back too low. By Friday it was fine and I had my treatment without any problems. This past Tuesday I had the Iniparib (Parp) alone and tomorrow I go back for my "Day 8" treatment. The doctor and nurses have said that they've put several women on this new protocol and pretty much everyone has been having issues with their bloodwork. I may have to start getting blood transfusions to help with my hemoglobin. My counts get low and I feel extremely tired and out of breath. The good news is that the spreading to my skin has been getting better by the day and I don't have too many body aches and pains. I really "feel" like this chemo is working so let's hope so!
This week our family was given an amazingly generous gift; we were given a large amount of money to spend on a family vacation. Darren and I are completely overwhelmed with gratitude; words simply cannot express how touched we are that people would want to do this for us. We would like to say a HUGE thank you to everyone at the Surrey Provincial Courts. Thank you to Davinder, Major and Guy for organizing the fundraising bbq and thank you to Craig, James and Kelly from Sicotte & Henry Law Firm for donating the food. And of course, thank you to everyone for your contributions. We are planning a Disneyland family vacation for October and we can't wait to tell the kids!
This week our family was given an amazingly generous gift; we were given a large amount of money to spend on a family vacation. Darren and I are completely overwhelmed with gratitude; words simply cannot express how touched we are that people would want to do this for us. We would like to say a HUGE thank you to everyone at the Surrey Provincial Courts. Thank you to Davinder, Major and Guy for organizing the fundraising bbq and thank you to Craig, James and Kelly from Sicotte & Henry Law Firm for donating the food. And of course, thank you to everyone for your contributions. We are planning a Disneyland family vacation for October and we can't wait to tell the kids!
Thursday, June 30, 2011
Take Two Update and Goodbye Dr. Paul Klimo :(
So we ventured back to Lions Gate Hospital yesterday morning and I had my first treatment of this new protocol. So far, doing pretty well. I managed to get in touch with some of the women who have been on this set of drugs in the clinical trial setting and they all said that they look minimal anti-nausea drugs and steroids and did fine so that's good enough for me. To be honest, although I am grateful for all the different meds we have now adays to combat the side effects of chemotherapy, sometimes it's just too much and it's actually these meds that cause some of the worse side effects. For example, Decadron is a steroid (i think) almost always give through iv before your chemotherapy starts. It's suppose to reduce the chances of an allergic reaction. However, it causes you to feel really wired and not in any sort of a good way. It's very hard to relax but you can't think straight so it's hard to get anything done; hard to even have a normal conversation. It's just a really crappy feeling and then the next morning you feel like you have a bad hang over. I always thought it was the Decadron that made me feel this way and now thanks to getting a hefty dose it by itself the other day, now I know that it is the Decadron. I am going to ask for at least half doses from now on. One of the nurses I asked yesterday said it shouldn't be a problem; especially now that I have had my first treatment without a reaction.
I've also heard from a woman on the Triple Negative Foundation discussion forums (continue to be SO helpful!) that there is a cream called Miltex that can really help with triple negative skin mets. But of course it comes form GERMANY!! Actually, I should mention that my dear friend Kathy was the first to tell me of this cream but when I first tried looking it up it seemed it was impossible to get hold of and couldn't really get any good info about it. Anyway, thanks Kath! When the name of that cream came up on the discussion forums I was able to get some more detailed info about how to go about getting it.
Today is officially Dr. Klimo's last day. I don't think it's really sunk in yet; it was just such a short time ago that he seemed to be my only hope. I really wanted to attend his retirement tea this past Friday but it was Treydon's sports day and I couldn't miss that.
I've also heard from a woman on the Triple Negative Foundation discussion forums (continue to be SO helpful!) that there is a cream called Miltex that can really help with triple negative skin mets. But of course it comes form GERMANY!! Actually, I should mention that my dear friend Kathy was the first to tell me of this cream but when I first tried looking it up it seemed it was impossible to get hold of and couldn't really get any good info about it. Anyway, thanks Kath! When the name of that cream came up on the discussion forums I was able to get some more detailed info about how to go about getting it.
Today is officially Dr. Klimo's last day. I don't think it's really sunk in yet; it was just such a short time ago that he seemed to be my only hope. I really wanted to attend his retirement tea this past Friday but it was Treydon's sports day and I couldn't miss that.
Over the past six months that I've been writing this blog I can't tell you how many people have sent me messages to tell me of their experiences with Dr. Klimo. Every single person has reassured me that I was in the best possible hands; he has saved so many lives. Even people that didn't have personal experiences with him have "heard" that he is the best. So even though I have this ridiculous, horrible, rare form of breast cancer, I truly felt that I was in the best hands. My only regret is that I didn't switch over from the Cancer Agency sooner :(
This is a very sad day for many cancer patients. I'm really going to miss waiting in the chemotherapy ward for my appointments. It was always a long wait but so much fun to watch "the Dr. Klimo" show (as I liked to call it) The way he would be going back and forth seeing more than patient at a time and then just randomly pulling people in from the waiting room; much to the frustration of the clerk trying to keep track of all the patients he needed see in that day! It was crazy but it was his way and it WORKED! Anyone who has sat in that waiting room more than once knows exactly what I'm talking about. It makes me laugh just to think of it!
I'm so sorry that I missed his retirement tea but maybe one day someone from his family will come across my little blog and can report back to him that yet, another person has been so touched by his true dedication and commitment to giving people the best damn cancer treatment available.
So here's to Dr. Klimo! May you have many, many years of good health to do whatever it is that brings you happiness. May you live the rest of your life KNOWING that you have MADE A DIFFERENCE!
I came across this article if anyone is interested to read more about him:
PS I was very surprised to learn that he will be turning 70! Wow. He doesn't look it at all.
Tuesday, June 28, 2011
Annoyed
So my appointment was at 2pm. Kathy drove me out there and then they said there wouldn’t be enough time to have it because I have to wait hour after the parp is given to make sure that I don't have a bad reaction – so annoyed. They had already hooked up my port AND given me the freakin decadron which is almost as bad as the chemo. Anyway, I’m home now, wired, can’t think straight, bad headache –all from the decadron. I have to go back tomorrow at 9:30.
I’m on the Special Access Program for Iniparib (parp) with Gemcitibine and Carboplatin. I was on Gem and Cisplatin before and everything I’ve read said Carbo is easier on you but apparently the nurses there don’t know that – they say it’s worse and I’ve got 5 didn’t anti-nausea drugs to take - ridiculous – I can’t even imagine what all the side effects of those will be.
I have to go there twice a week for treatments day Day 1 and 8 is Gem and Carbo and parp on then days 4 and 11 is just the parp. Then one week off. (three week cycles) This is the exact protocol I was looking into with the clinical trial in Seattle
I’ve been on the Triple Negative Foundation discussion forums (very informative) and it seems this does work really well for some people. One woman started in this trial last year and has been on it ever since! It cleared everything up and her dr doesn’t think she should come off until it stops working. CANNOT even IMAGINE!
oh well. I guess I just have to be thankful there is something to try.
Dr. Klimo said the idea is that you do it for a few months and if it works then you continue with just the parps. From reading what others in my situation are going through it seems if you find something that works that you don’t stop until it stops working. There are many people on the discussion boards who have tried the parps and they didn’t work. Anyway, I am really hoping that it works and FAST- having lots of body aches and pain – taking Advils round the clock and my skin mets are getting really bad and uncomfortable. These are the first "symptoms" I've ever had from my cancer and it seems to be getting worse by the day.
Monday, June 13, 2011
F%@K!!
Last week I went to see Dr. Klimo because of a rash I've had under my arm for about a month. In the past week it had become much worse and didn't look like just a "rash" anymore. Dr. Klimo said it looked like cancer and sent me off for a biopsy. I asked him to book me into the private PET scan clinic; I didn't want to be waiting any longer for the BCCA.
I had the biopsy done the next day at Lion's Gate Hospital. The surgeon who did the biopsy also said it looked like cancer.
I came home, phoned the PET clinic and they said they could get me in the next day, which was Friday. I came home Friday after the scan with the disk and looked at it on my computer.
It was really, really bad; much worse than my original scan back in December.
I saw Dr. Klimo this morning. He said the scan was "shitty". The written report confirmed that it was much worse than in December and the skin biopsy confirmed that the cancer had spread to my skin and it too, was triple negative. We are going to start on the Parp Inhibitors that just came available here. They are given through IV with both Gemcitibine and Cisplatin - the chemo drugs I just came off. I will start sometime in the next month. I will stop the Avastin and Xeoloda pills but continue with the Zometa infusions.
I had the biopsy done the next day at Lion's Gate Hospital. The surgeon who did the biopsy also said it looked like cancer.
I came home, phoned the PET clinic and they said they could get me in the next day, which was Friday. I came home Friday after the scan with the disk and looked at it on my computer.
It was really, really bad; much worse than my original scan back in December.
I saw Dr. Klimo this morning. He said the scan was "shitty". The written report confirmed that it was much worse than in December and the skin biopsy confirmed that the cancer had spread to my skin and it too, was triple negative. We are going to start on the Parp Inhibitors that just came available here. They are given through IV with both Gemcitibine and Cisplatin - the chemo drugs I just came off. I will start sometime in the next month. I will stop the Avastin and Xeoloda pills but continue with the Zometa infusions.
Friday, June 3, 2011
New Hope for the Cure
Drug combination targets aggressive triple-negative breast cancer
With currently available early-detection methods for breast cancer, many people can be treated successfully. But for the 20 percent of patients with so-called triple-negative breast cancer, the outcome is bleak. Now, however, researchers from Harvard Medical School (HMS) and Baylor College of Medicine have identified a critical molecular component to the disease, one that suggests potential therapies involving combinations of FDA-approved, readily available drugs.
“Whereas many basic discoveries have the potential to impact patients’ lives within 10, 20 or 30 years, this has the potential to impact patients’ lives within one year,” says Thomas Westbrook, formerly a postdoctoral fellow at Harvard Medical School and an assistant professor of biochemistry and molecular biology at Baylor College of Medicine since 2007.
The research was published on March 4 in the journal Cell.
Triple-negative breast cancer is an aggressive disease with few therapeutic options. Patients with such tumors can be treated only with chemotherapy. If the cancer spreads, the median survival rate is one year.
The complexity of triple-negative breast cancer renders it so difficult to treat. The disease is extremely heterogeneous, characterized by hundreds of genetic mutations. Without knowing the critical molecular switches that power this type of breast cancer, researchers have no way to develop targeted therapies.
The HMS-Baylor College of Medicine team reports that an enzyme called tyrosine phosphatase PTPN12 is knocked out in 60 percent of nearly 200 triple-negative breast cancers tested. This phosphatase belongs to a class of enzymes that keeps cell-growth pathways in check and cancer at bay.
The team identified the critical enzyme by looking in petri dishes for proteins whose absence caused normal breast cells to become cancerous.
“We were looking for genes that pushed the cells over the edge,” explains Steve Elledge, the Gregor Mendel Professor of Genetics and a professor of medicine at HMS.
One of tyrosine phosphatases’ primary jobs is to turn off another group of enzymes critical for growth called receptor tyrosine kinases. The researchers reasoned that, if they could identify the enzymes that were switched on in the absence of PTPN12, they could pinpoint critical drug targets that might be used to develop therapies for patients with triple-negative breast cancer.
To identify these proteins, the team turned to HMS Associate Professor of Cell Biology Steve Gygi. By taking a look at all proteins activated in cells lacking PTPN12, the researchers found two enzymes crucial for breast cancer’s progression, or metastasis, EGFR and HER2.
In addition, the team used biochemical methods to identify a third receptor enzyme, called PDGFR-b , that was also regulated by PTPN12.
These results collectively suggest that the improper activation of these three tyrosine kinases could be the major cause of triple-negative breast cancer.
“We’ve grabbed a molecular foothold in triple-negative breast cancer,” says Westbrook, who discovered PTPN12 as a postdoctoral fellow in Elledge’s laboratory. “We are now starting to understand the disease better. Even more important, we have a rationale for a combined drug therapy for the disease.”
Their idea: to treat the disease, turn off the trio of enzymes with drugs.
To test their strategy, the team took advantage of two drugs already being used to battle other types of cancer: laptanib (Tykerb), which turns off EGFR and HER2, and sunitinib (Sutent), which turns off PDGFR-b.
The team treated mice with triple-negative breast cancers with either sunitinib or laptanib, or both. In mice treated with sunitinib alone, tumors shrank by nearly 80 percent. But in mice treated with both drugs, tumors shrank by more than 90 percent — and life expectancy more than doubled.
These results suggest that sunitinib and laptanib (or similar drugs) together may be a promising therapy for people with triple-negative breast cancer. And because both drugs are already FDA-approved and sitting on pharmacy shelves, they can be tested immediately in these patients.
“This research underscores the relation of basic bench science to human health,” says Elledge. “If you know what’s driving the cancer, you can think about targeting that for therapy.”
The team hopes to launch a phase II trial for triple-negative breast cancer by the beginning of 2012.
Sutent was one of the drugs we did chemo-sensistivity testing on in Germany and my test came back at 60% which was the highest of all my chemo-sensitivity testing.
Drug combination targets aggressive triple-negative breast cancer
With currently available early-detection methods for breast cancer, many people can be treated successfully. But for the 20 percent of patients with so-called triple-negative breast cancer, the outcome is bleak. Now, however, researchers from Harvard Medical School (HMS) and Baylor College of Medicine have identified a critical molecular component to the disease, one that suggests potential therapies involving combinations of FDA-approved, readily available drugs.
“Whereas many basic discoveries have the potential to impact patients’ lives within 10, 20 or 30 years, this has the potential to impact patients’ lives within one year,” says Thomas Westbrook, formerly a postdoctoral fellow at Harvard Medical School and an assistant professor of biochemistry and molecular biology at Baylor College of Medicine since 2007.
The research was published on March 4 in the journal Cell.
Triple-negative breast cancer is an aggressive disease with few therapeutic options. Patients with such tumors can be treated only with chemotherapy. If the cancer spreads, the median survival rate is one year.
The complexity of triple-negative breast cancer renders it so difficult to treat. The disease is extremely heterogeneous, characterized by hundreds of genetic mutations. Without knowing the critical molecular switches that power this type of breast cancer, researchers have no way to develop targeted therapies.
The HMS-Baylor College of Medicine team reports that an enzyme called tyrosine phosphatase PTPN12 is knocked out in 60 percent of nearly 200 triple-negative breast cancers tested. This phosphatase belongs to a class of enzymes that keeps cell-growth pathways in check and cancer at bay.
The team identified the critical enzyme by looking in petri dishes for proteins whose absence caused normal breast cells to become cancerous.
“We were looking for genes that pushed the cells over the edge,” explains Steve Elledge, the Gregor Mendel Professor of Genetics and a professor of medicine at HMS.
One of tyrosine phosphatases’ primary jobs is to turn off another group of enzymes critical for growth called receptor tyrosine kinases. The researchers reasoned that, if they could identify the enzymes that were switched on in the absence of PTPN12, they could pinpoint critical drug targets that might be used to develop therapies for patients with triple-negative breast cancer.
To identify these proteins, the team turned to HMS Associate Professor of Cell Biology Steve Gygi. By taking a look at all proteins activated in cells lacking PTPN12, the researchers found two enzymes crucial for breast cancer’s progression, or metastasis, EGFR and HER2.
In addition, the team used biochemical methods to identify a third receptor enzyme, called PDGFR-b , that was also regulated by PTPN12.
These results collectively suggest that the improper activation of these three tyrosine kinases could be the major cause of triple-negative breast cancer.
“We’ve grabbed a molecular foothold in triple-negative breast cancer,” says Westbrook, who discovered PTPN12 as a postdoctoral fellow in Elledge’s laboratory. “We are now starting to understand the disease better. Even more important, we have a rationale for a combined drug therapy for the disease.”
Their idea: to treat the disease, turn off the trio of enzymes with drugs.
To test their strategy, the team took advantage of two drugs already being used to battle other types of cancer: laptanib (Tykerb), which turns off EGFR and HER2, and sunitinib (Sutent), which turns off PDGFR-b.
The team treated mice with triple-negative breast cancers with either sunitinib or laptanib, or both. In mice treated with sunitinib alone, tumors shrank by nearly 80 percent. But in mice treated with both drugs, tumors shrank by more than 90 percent — and life expectancy more than doubled.
These results suggest that sunitinib and laptanib (or similar drugs) together may be a promising therapy for people with triple-negative breast cancer. And because both drugs are already FDA-approved and sitting on pharmacy shelves, they can be tested immediately in these patients.
“This research underscores the relation of basic bench science to human health,” says Elledge. “If you know what’s driving the cancer, you can think about targeting that for therapy.”
The team hopes to launch a phase II trial for triple-negative breast cancer by the beginning of 2012.
Sutent was one of the drugs we did chemo-sensistivity testing on in Germany and my test came back at 60% which was the highest of all my chemo-sensitivity testing.
Monday, May 23, 2011
Finally, a new update.
Change of plans again. I will be continuing with the Avastin and Zometa every three weeks through the summer. The Zometa doesn't have any side effects but the Avastin has been causing really bad sinus pain and nose bleeds. I was really hoping to be done with it. More recently it has been causing extremely high blood pressure. My blood pressure has always been normal and now it's up to 195/ 115 some days! I've had to start blood pressure medication and hopefully that will bring it down. I am done the iv chemotherapy but will be starting on the low dose oral chemo called Capecitabine (Xeloda) starting this week. I will take it everyday for two weeks and then have one week off. The cyle will be repeated for the next year. Dr. Klimo said most people don't have any side effects. However, the package from the company lists many possible side effects so we'll have to see. I'm still waiting for my PET scan date. Dr. Klimo is going to try to get it done through the Cancer Agency so I won't have to pay for it. If so, it should be scheduled within the next few weeks. The PET scan results will determine if the chemo has continued to work and whether or not I will need radiation.
Dr. Klimo also informed me that the Parp Inhibitors are now available here. These were the drugs in Clinical Trials (the ones that I was looking into in Seattle). They are available here but only with Gemcitibine and Cisplatin - they have to be taken together. Dr. Klimo doesn't want to put me back on the Gem/Cis so I can't get the Parp but it is nice to know that it is available if I ever do need it. Parp Inhibititors are suppose to be especially helpful in treating Triple Negative breast cancer (my type) so if you know anyone with this rare, aggressive form of breast cancer please let them know that this is now available.
It is official. Dr. Klimo is retiring at the end of June. It's very stressful to think about but I do have another doctor whose name has come up several times during the past year. I will try to arrange a meeting with her soon and I will also be looking into to Dr. Klimo's partner, who he has been working with for the past four years.
This past week I attended a week long "Healing Retreat" through the Callanish Society. I put in an application to attend the retreat shortly after I received the good PET scan results but as it got closer to the date I was getting really anxious and wasn't sure if I wanted to go. I'm not really a "support group" type of person and hadn't really done much to support my emotional health throughout this past year. It just seemed exhausting to really deal with all the feelings and emotions and to be doing it will a group of people who all had cancer. I basically just forced myself to go. Within the first 24 hours I knew that I had made the right choice. The team of facilitators were like nothing I have ever experienced or heard about; I have never met a group of people so genuinely dedicated to what they do. The eight of us participating were all so different from each other but quickly developed bonds and friendships that would normally take years to develop. I am really proud of myself and grateful for the Callanish Society. Also, thank you to Shannon (whom I've never met) for passing along the information and helping me to get off my ass and take care of myself.
Dr. Klimo also informed me that the Parp Inhibitors are now available here. These were the drugs in Clinical Trials (the ones that I was looking into in Seattle). They are available here but only with Gemcitibine and Cisplatin - they have to be taken together. Dr. Klimo doesn't want to put me back on the Gem/Cis so I can't get the Parp but it is nice to know that it is available if I ever do need it. Parp Inhibititors are suppose to be especially helpful in treating Triple Negative breast cancer (my type) so if you know anyone with this rare, aggressive form of breast cancer please let them know that this is now available.
It is official. Dr. Klimo is retiring at the end of June. It's very stressful to think about but I do have another doctor whose name has come up several times during the past year. I will try to arrange a meeting with her soon and I will also be looking into to Dr. Klimo's partner, who he has been working with for the past four years.
This past week I attended a week long "Healing Retreat" through the Callanish Society. I put in an application to attend the retreat shortly after I received the good PET scan results but as it got closer to the date I was getting really anxious and wasn't sure if I wanted to go. I'm not really a "support group" type of person and hadn't really done much to support my emotional health throughout this past year. It just seemed exhausting to really deal with all the feelings and emotions and to be doing it will a group of people who all had cancer. I basically just forced myself to go. Within the first 24 hours I knew that I had made the right choice. The team of facilitators were like nothing I have ever experienced or heard about; I have never met a group of people so genuinely dedicated to what they do. The eight of us participating were all so different from each other but quickly developed bonds and friendships that would normally take years to develop. I am really proud of myself and grateful for the Callanish Society. Also, thank you to Shannon (whom I've never met) for passing along the information and helping me to get off my ass and take care of myself.
Wednesday, March 30, 2011
New info
I thought that after this past Monday I was only going to have one chemo left; after seeing Dr. Klimo he explained that I will need 3 more so that they can "wean" me off the three drugs. Very disappointing!! Anyway, I guess I have three more chemos left and then I will go on a pill - two weeks on, two weeks off - for how long? not sure. I'm pretty sure we are making it up as we go along ;)
I will have another PET scan after the chemo is done and that will determine if radiation is necessary. Dr. Klimo thinks that if the scan comes back clear, then there's no point in radiation ~ "what is there to radiate?". My last oncologist felt that radiation should be done just to be sure there weren't any cancer cells left behind. It's a big decision because radiation can have a lot of serious side effects: damage my heart, damage my skin, cause bad swelling in my arm that may not ever go away and could even limit movement.
Whatever, we decide to do PET scans will need to be done on a regular basis ~ probably every three months ~ to keep on top of it. I am hoping that Dr. Klimo can get every second one covered by medical.
I will have another PET scan after the chemo is done and that will determine if radiation is necessary. Dr. Klimo thinks that if the scan comes back clear, then there's no point in radiation ~ "what is there to radiate?". My last oncologist felt that radiation should be done just to be sure there weren't any cancer cells left behind. It's a big decision because radiation can have a lot of serious side effects: damage my heart, damage my skin, cause bad swelling in my arm that may not ever go away and could even limit movement.
Whatever, we decide to do PET scans will need to be done on a regular basis ~ probably every three months ~ to keep on top of it. I am hoping that Dr. Klimo can get every second one covered by medical.
Tuesday, March 22, 2011
Clinical Trial Starting Soon
In many ways, Kelly helped me to get to where I am today. Without talking with her I wouldn't have ever realized the importance in getting a PET scan; I would have went along with my oncologist and believed what the other scans had reported. If I had not had a PET so early I believe my cancer metastases would have progressed much further and would have been much more difficult to treat.
I would really appreciate it if you would check out Kelly's website. She is now working with the B.C. Cancer Agency to start a clinical trial using Professor Pachmann's Circulating Tumors Test and Chemosensitivity Testing. The clinical trial will be starting soon and is open to breast cancer patients whose cancer has metastasized. If you know anyone who might be interested in this trial please pass along her website. If you have any feedback about her website ~ what you found helpful or perhaps, unclear, I would like to pass it along to her and she would appreciate your comments.
http://kellysclinic.ca/
I would really appreciate it if you would check out Kelly's website. She is now working with the B.C. Cancer Agency to start a clinical trial using Professor Pachmann's Circulating Tumors Test and Chemosensitivity Testing. The clinical trial will be starting soon and is open to breast cancer patients whose cancer has metastasized. If you know anyone who might be interested in this trial please pass along her website. If you have any feedback about her website ~ what you found helpful or perhaps, unclear, I would like to pass it along to her and she would appreciate your comments.
http://kellysclinic.ca/
Monday, February 28, 2011
Awesome news!!
I'm writing from my blackberry while getting chemo but I had to share my amazing news My PET scan results show that all the spreading to liver and bones (and there was lots) is GONE!! There is only one small spot in my armpit that may be cancer but probably "post treatment inflammatory changes". The report starts with " There has been a dramatic, marked favorable response to therapy when compared with the previous study" Dr. Klimo was very surprised with the results - he said was better than he thought. So I will do four more chemos then continue with Avastin in a pill form (I think that's what he said - I was so happy I wasn't really paying attention)
Monday, February 21, 2011
Happy Birthday Treydon!
Seven years ago today our life changed forever... Happy Birthday Treydon! We love you!
Tuesday, February 15, 2011
Happy Birthday Matteus!
Today Matteus turns three. He's growing up so quickly and I can't believe that he is not my little baby anymore.
He is truly a gift; making me laugh everyday, even when I didn't think it was possible to laugh.
We love you Matteus!
In medical news...today I had three good pieces of news:
1) tumor markers are down and white blood cells were up
2) extend health will cover 80% of Avastin
3) I will get my PET scan done at the BCCA (for free) on the same day as my private one was scheduled (Feb 25)
He is truly a gift; making me laugh everyday, even when I didn't think it was possible to laugh.
We love you Matteus!
In medical news...today I had three good pieces of news:
1) tumor markers are down and white blood cells were up
2) extend health will cover 80% of Avastin
3) I will get my PET scan done at the BCCA (for free) on the same day as my private one was scheduled (Feb 25)
Monday, February 7, 2011
Good News!!
CT scan came back clear - hasn't spread to my brain!! Yay!!
My PET scan will probably be the 24th or 25th; it will tell us how the chemo has been working. I will have to pay for a private one again as they will not do it at the BCCA just to "monitor" treatment - so annoying!
Some bad news is that Dr. Klimo is retiring in June - very stressful :o(
But the good news is IT HASN'T SPREAD TO MY BRAIN!!
My PET scan will probably be the 24th or 25th; it will tell us how the chemo has been working. I will have to pay for a private one again as they will not do it at the BCCA just to "monitor" treatment - so annoying!
Some bad news is that Dr. Klimo is retiring in June - very stressful :o(
But the good news is IT HASN'T SPREAD TO MY BRAIN!!
Thursday, January 27, 2011
January 27th...
I've had so many people say to me that they check my blog for updates all the time so now I'm feeling the pressure to come up with some news to report!!
Well, there isn't too much to report right now ~ just having my chemo - two Fridays (oops I meant Mondays) in a row and then one week off. This chemo doesn't have the same side effects as my first rounds; hair isn't falling out, no muscle loss yet (actually, maybe that's because I DON'T HAVE ANY MUSCLES LEFT!!) nails seem to be hanging on nicely and only a few days of feeling really horrible and bound to my bed. I still have to take Neupogen injections which help my body to make new white blood cells so that I can get my next chemo and not catch one of the many bugs my children bring home. It works wonders but causes extreme bone pain after a couple of injections so I'm always trying to do the minimal amount of times; just enough to get up my cell count but not enough to start the pain (I equate the pain with bad back labour).
On Feb 1st I go in for surgery to have a port-o-cath placed in my chest. This is a little device that sits under your skin and allows for the chemo to access your body directly rather than having to get set up with an IV every time. I had one put in during my first round of chemo but had it removed during the mastectomy thinking I wouldn't need it anymore (wishful thinking). It really grosses me out because you can feel it under your skin but it doesn't interfere with daily activities and is WAY easier than having a IV. This past Monday I was poked six times before they got the vein - and these nurses are the experts! Anyway, it will be way easier once I have the port.
I haven't been able to start the local hyperthermia with Dr. Parmar yet because I have to get there on the same day as my chemo and so far I haven't been able to get there in time. My chemo always seems to take way longer than it's suppose to. Now, I've decided that I will wait to start the hyperthermia until after after my PET scan which should be in a few weeks. That way we'll have a baseline to monitor how or if it is working. It will also tell us what part of my body we should be focusing it on.
We are still waiting to hear if our extended health is going to cover the $12,400. a month cost for Avastin.
I have a good feeling that this chemotherapy is working so I am very excited and anxious to have my next PET scan. I don't have a date yet but I will update next when I find out when it will be.
Thank you again to everyone who continues to read my blog and everyone who has been donating and supporting the fundraisers. I am constantly overwhelmed with gratitude and continuously wonder what I can possibly do to repay everyone when I am better!
Well, there isn't too much to report right now ~ just having my chemo - two Fridays (oops I meant Mondays) in a row and then one week off. This chemo doesn't have the same side effects as my first rounds; hair isn't falling out, no muscle loss yet (actually, maybe that's because I DON'T HAVE ANY MUSCLES LEFT!!) nails seem to be hanging on nicely and only a few days of feeling really horrible and bound to my bed. I still have to take Neupogen injections which help my body to make new white blood cells so that I can get my next chemo and not catch one of the many bugs my children bring home. It works wonders but causes extreme bone pain after a couple of injections so I'm always trying to do the minimal amount of times; just enough to get up my cell count but not enough to start the pain (I equate the pain with bad back labour).
On Feb 1st I go in for surgery to have a port-o-cath placed in my chest. This is a little device that sits under your skin and allows for the chemo to access your body directly rather than having to get set up with an IV every time. I had one put in during my first round of chemo but had it removed during the mastectomy thinking I wouldn't need it anymore (wishful thinking). It really grosses me out because you can feel it under your skin but it doesn't interfere with daily activities and is WAY easier than having a IV. This past Monday I was poked six times before they got the vein - and these nurses are the experts! Anyway, it will be way easier once I have the port.
I haven't been able to start the local hyperthermia with Dr. Parmar yet because I have to get there on the same day as my chemo and so far I haven't been able to get there in time. My chemo always seems to take way longer than it's suppose to. Now, I've decided that I will wait to start the hyperthermia until after after my PET scan which should be in a few weeks. That way we'll have a baseline to monitor how or if it is working. It will also tell us what part of my body we should be focusing it on.
We are still waiting to hear if our extended health is going to cover the $12,400. a month cost for Avastin.
I have a good feeling that this chemotherapy is working so I am very excited and anxious to have my next PET scan. I don't have a date yet but I will update next when I find out when it will be.
Thank you again to everyone who continues to read my blog and everyone who has been donating and supporting the fundraisers. I am constantly overwhelmed with gratitude and continuously wonder what I can possibly do to repay everyone when I am better!
Thursday, January 20, 2011
Tuesday, January 18, 2011
Monday
I saw Dr. Klimo today and he is going to schedule a PET scan (to monitor the progress of my current treatments) for soon after my sixth treatemtent which is on Feb 7. He is also going to schedule a brain scan as the PET doesn't do the brain - very stressful to think about but again, it is important to catch it early if it has spread there. I wasn't able to make it to the hyperthermia appointment in Fort Langley as my chemo took way longer than we expected so I will be starting next week after my chemo. I have an appointment with my GP today so he can fill out my long term disability forms for work :o(
I also wanted to say a huge THANK YOU to my sister, Danielle for organzing the raffle and everyone who purchased tickets and helped her sell tickets. Thank you so much, all the financial support makes all this crap a little easier to endure!! Danielle has already contacted the winners but I will post the names on here soon.
I also wanted to say a huge THANK YOU to my sister, Danielle for organzing the raffle and everyone who purchased tickets and helped her sell tickets. Thank you so much, all the financial support makes all this crap a little easier to endure!! Danielle has already contacted the winners but I will post the names on here soon.
Wednesday, January 12, 2011
This past Monday Darren and I went down to Seattle to meet with one of the doctors at The Seattle Cancer Care Alliance. They are currently running two trials using chemotherapy along with Parp inhibitors. The doctor explained the trials - one is a Phase 1 using an oral parp drug so I would only have to travel to Seattle twice a month. The other is a Phase III and it would require me to be in Seattle on Day 1,4, 8 and 11 of the month long cycle. The Phase III trial is going well and they are just waiting for FDA approval. In the meantime, the trial has been opened up to Stage IV breast cancer patients for compassionate use. The trial would only cover the costs of some of the initial baseline tests and I would be responsible to pay for everything else. Basically, I just wanted to find out what the criteria would be to get accepted into the trial and how long they would be recruiting. The doctor explained that they would probably be accepting new patients for at least six months and I'm still waiting to hear back on an estimate of the cost.
I'm going to continue on the chemo drugs that Dr. Klimo has me on now. Apparently, these drugs will work quite well for a while and then the cancer becomes resistant to it so you need to switch to something else.
This Monday, I have an appointment with Dr. Klimo and then my third chemo session (on these new drugs). Immediately following my chemotherapy in N. Van I will go to Fort Langley to receive my first local hyperthermia treatment.
I'm going to continue on the chemo drugs that Dr. Klimo has me on now. Apparently, these drugs will work quite well for a while and then the cancer becomes resistant to it so you need to switch to something else.
This Monday, I have an appointment with Dr. Klimo and then my third chemo session (on these new drugs). Immediately following my chemotherapy in N. Van I will go to Fort Langley to receive my first local hyperthermia treatment.
Sunday, January 2, 2011
I just came across this clip again by Kelly Corrigan. I can remember reading this back in May, shortly after I was diagnosed and we had just come back from a short, "preplanned" vacation to Disneyland. I couldn't believe how her words were describing everything I was going through, every thought I was having....
She is a wonderful writer and speaker ~ take a few minutes to watch.
http://www.youtube.com/watch?v=SaYUdYErfB4
She is a wonderful writer and speaker ~ take a few minutes to watch.
http://www.youtube.com/watch?v=SaYUdYErfB4
Saturday, January 1, 2011
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