On December 24 I had my first chemotherapy treatment in almost two months; my first one at Lion's Gate instead of Surrey Memorial. My awesome friend, Kathy, came to pick me up at 7am to head off to North Vancouver - I had to have blood work done at 8 and my appointment was for 10. I know this will sound really crazy and pathetic but I had a fun day; fun to spend the day with a friend who totally knows and cares about what's going on (not sure how she keeps up with it all) and fun just to laugh and cry and know that it's ok to laugh and cry.
I guess since it was my first time there, they handed me this four page questionaire to fill out. I asked Kathy to fill it out for me because my IV was in my right hand ~ she could've pretty much filled it all out without me even being there, but I laughed so hard when one of the questions asked something like "what is the most stressfull thing in your life right now?"
She wrote, "I HAVE CANCER".
It still makes me laugh while writing about it now :o)
We talked about whether or not I should write to my kids and make them videotapes now, while I'm well enough to. I would be so sad if all of a sudden I became too sick to do this. This, I have to admit, is one of my biggest fears. It is the one thing that will make me cry every time.
When I talk to my six year old and realize how much of his life he's forgotten already and I think about how little I remember of my first six years, it scares me. We went for a walk a few weeks ago and stopped at a little park that we hadn't been to in a long time. I told him how we used to go there all the time when he was around Matteus' age. He asked me if I had cancer then. I was so surprised and I tried explaining that I've only had cancer for 8 months; it made me realize how kids really live in the present...
Chemotherapy at Lion's Gate isn't anything like chemotherapy at Surrey Memorial - had a new nurse assigned to me, they ran out of my anti-nauseau meds (perfect!), then they didn't have one of the my three chemo drugs? then she forgot I needed to pee in a cup before I could get the drug? I'm not competely sure of what all was going on but we had to wait around for quite a while and by the time we got started I realized that we were going to be there WAY longer than I had thought. Kathy had to go for Christmas eve with her family and I was suppose to go shopping and then go to my mom's for dinner. After the first two IV bags we got the nurse to crank it up and, with a littlle pain in my hand, we were out of there by 2 pm - obviously NOT the way Kathy had planned on spending her day! Of course, Kathy tells me it's "not a big deal" because that's the kind of friend she is.
I was hoping to get the prescription from Dr. Klimo for Xeloda like Dr. Parmar had talked about but when I talked to Dr. Klimo he said that I couldn't take that on top of everything else - that it would be too toxic.
I felt ok for Christmas eve and was really tired Christmas Day but I was still able to enjoy the time with my family and watch my boys open their gifts in the morning.
I've had a rough few days but I've been in touch with a place in Seattle running clinical trials with PARP inhibitors and I contacted Dr. Herzog in Germany about whole body extreme hyperthermia - would be about $10,000/week and I would need to travel there every month for one week. Dr. Parmar thinks I should start local hyperthermia on the days I have chemo - $500/body part. So rediculous. Anyway, I am going to give this new chemo a go and hopefully, I will be able to talk to Dr. Klimo about all this other stuff.
Wednesday, December 29, 2010
Thursday, December 23, 2010
Visit with Dr.Parmar
So I went to see Dr. Parmar of Langley Intergrated Health yesterday. I had been there once before in the summer and seen Dr. Gonzalis; that's where I first heard of chemo-sensitivity testing. They had suggested I start doing local hyperthermia (only available at the Langley Clinic) with my chemotherapy but when I asked Dr. Martin (my oncologist at the time) she didn't think it was a good idea. At that point, I wasn't really feeling super keen on the idea of going against what my doctor was telling me to do (not to mention it's really expensive as well).
Anyway, I went back there yesterday and met Dr. Parmar for the first time. He explained that he works with Dr. Klimo through his Lions Gate Clinic. He looked over my chemo-sensitivity results, talked with me about the recent PET scan results and suggested several things...
1) Start taking Artemisinin, which is a herb that Dr. Roehnish and Dr. Drazinski also suggested. It tested out at 35% effective on my chemo-sensitivity tests.
2) Start taking DCA; clinical trials are showing some success with this as well. However, if I start to experience neuropathy (tingling and numbness in fingers, toes etc) then I need to stop right away.
3) Start local hyperthermia but not until I can get a prescription from Dr. Klimo for Xeloda - Xeloda is a daily oral dose chemotherapy drug that I can take while I'm doing the other weekly chemotherapy. (It also tested out in the 30% range on my chemo-sensitivity results) Local hyperthermia can help with local recurrance and the spreading to the liver but not the bone.
(Dr. Parmar later called Klimo to get me the prescription so hopefully I can pick it up soon)
We also discussed the treatments available in Germany. Dr. Parmar has made several trips to Germany to visit the integrated cancer clincis over there and feels that the best treatment for me would be extreme whole body hyperthermia; this is not available in Canada or the US (as far as I can see). I've been trying to see if the Mexican clinics do it but haven't been able to get that info yet.
Dr. Parmar explained that for the metastases (spreading) that I have, the best treatment would be the extreme whole body hyperthermia. Basically, they raise your body temperative to 42 degrees and then start a low dose chemotherapy treatment. The idea is that the heat makes the cancer cells much more receptive to the chemotherapy. There is also some research showing that the high temperature itself may work to kill the cancer cells. Currently there are many clinical trials using hyperthermia taking place in North America.
I'm going to start looking into one of the clinics just outside of Frankfurt - Dr. Herzog has been doing the hyperthermia there for a long time and Dr. Parmar says that he is having very good success using it for cancer treatment.
Another thing that I haven't mentioned yet is that Dr. Roehnisch said that I really need to try to get into one of the clinical trials using PARP inhibitors - these are clinical trials that are going on right now, in Phase I, II and III and are showing really good results for triple negative breast cancer. I haven't had much time to do a lot of research on it yet but so far I haven't had any luck finding a clinical trial that is still recruiting. (Just thought I'd throw that out there in case someone knows someone who knows someone :o)
In the meantime, I will be starting chemotherapy with Dr. Klimo so I will have to travel to North Vancouver for treatment. I've been given the first two dates for my chemotherapy ~ Dec 24 and Dec 31 ~ nice way to start my Christmas and New Year ;)
Also, I've added a new page outlining the various vitamin and supplements I've been taking. It's a page link on the right hand side - if you want to check it out (just to see how completely rediculous it is)
Thank you to everyone who has been sending me messages and making donations. I feel so supported and love reading your thoughts, prayers and positive words. I wish you and your families a very Merry Christmas and a happy, healthy New Year!!
xoxoxoxo
JL
Anyway, I went back there yesterday and met Dr. Parmar for the first time. He explained that he works with Dr. Klimo through his Lions Gate Clinic. He looked over my chemo-sensitivity results, talked with me about the recent PET scan results and suggested several things...
1) Start taking Artemisinin, which is a herb that Dr. Roehnish and Dr. Drazinski also suggested. It tested out at 35% effective on my chemo-sensitivity tests.
2) Start taking DCA; clinical trials are showing some success with this as well. However, if I start to experience neuropathy (tingling and numbness in fingers, toes etc) then I need to stop right away.
3) Start local hyperthermia but not until I can get a prescription from Dr. Klimo for Xeloda - Xeloda is a daily oral dose chemotherapy drug that I can take while I'm doing the other weekly chemotherapy. (It also tested out in the 30% range on my chemo-sensitivity results) Local hyperthermia can help with local recurrance and the spreading to the liver but not the bone.
(Dr. Parmar later called Klimo to get me the prescription so hopefully I can pick it up soon)
We also discussed the treatments available in Germany. Dr. Parmar has made several trips to Germany to visit the integrated cancer clincis over there and feels that the best treatment for me would be extreme whole body hyperthermia; this is not available in Canada or the US (as far as I can see). I've been trying to see if the Mexican clinics do it but haven't been able to get that info yet.
Dr. Parmar explained that for the metastases (spreading) that I have, the best treatment would be the extreme whole body hyperthermia. Basically, they raise your body temperative to 42 degrees and then start a low dose chemotherapy treatment. The idea is that the heat makes the cancer cells much more receptive to the chemotherapy. There is also some research showing that the high temperature itself may work to kill the cancer cells. Currently there are many clinical trials using hyperthermia taking place in North America.
I'm going to start looking into one of the clinics just outside of Frankfurt - Dr. Herzog has been doing the hyperthermia there for a long time and Dr. Parmar says that he is having very good success using it for cancer treatment.
Another thing that I haven't mentioned yet is that Dr. Roehnisch said that I really need to try to get into one of the clinical trials using PARP inhibitors - these are clinical trials that are going on right now, in Phase I, II and III and are showing really good results for triple negative breast cancer. I haven't had much time to do a lot of research on it yet but so far I haven't had any luck finding a clinical trial that is still recruiting. (Just thought I'd throw that out there in case someone knows someone who knows someone :o)
In the meantime, I will be starting chemotherapy with Dr. Klimo so I will have to travel to North Vancouver for treatment. I've been given the first two dates for my chemotherapy ~ Dec 24 and Dec 31 ~ nice way to start my Christmas and New Year ;)
Also, I've added a new page outlining the various vitamin and supplements I've been taking. It's a page link on the right hand side - if you want to check it out (just to see how completely rediculous it is)
Thank you to everyone who has been sending me messages and making donations. I feel so supported and love reading your thoughts, prayers and positive words. I wish you and your families a very Merry Christmas and a happy, healthy New Year!!
xoxoxoxo
JL
Tuesday, December 21, 2010
Back from Germany...
I saw Dr. Klimo today today. He said that because of the way my first surgery had to be done there is no way that they could do another one in that same area. He believes that if the surgeon in Germany had examined me he would say the same; it would be very dangerous to do it.
So Klimo wants to start chemo asap; hopefully they can get me started sometime between xmas and new years. We are still waiting on some chemo-sensitivity testing and if any of those come back looking promising then he will use them. If not, then he is going to use a combo of drugs that he has used with success in another patient who has had the same issues as me. I spoke to the radiologist today and now that he has seen my PET scan results, agrees that I need chemo before any radiation; exact words were "we didn't realize how bad it was when we were recommending radiation first" - just what you want to hear!
Anyway, the new plan is to start the chemo, and hopefully get a hold on the spreading and then take a break for some radiation and then continue with the same or different chemo. I'm going to do every complimentary treatment there is; vitamin infusions, hyperthermia, mistletoe and all the other vitamins and herbal remedies. I will also continue to send my blood to Germany to have it tested for circulating tumor cells so that we can better monitor if the treatments are working.
So Klimo wants to start chemo asap; hopefully they can get me started sometime between xmas and new years. We are still waiting on some chemo-sensitivity testing and if any of those come back looking promising then he will use them. If not, then he is going to use a combo of drugs that he has used with success in another patient who has had the same issues as me. I spoke to the radiologist today and now that he has seen my PET scan results, agrees that I need chemo before any radiation; exact words were "we didn't realize how bad it was when we were recommending radiation first" - just what you want to hear!
Anyway, the new plan is to start the chemo, and hopefully get a hold on the spreading and then take a break for some radiation and then continue with the same or different chemo. I'm going to do every complimentary treatment there is; vitamin infusions, hyperthermia, mistletoe and all the other vitamins and herbal remedies. I will also continue to send my blood to Germany to have it tested for circulating tumor cells so that we can better monitor if the treatments are working.
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