My week...

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.

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

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.

Chemo-sensitivity Results

The chemo-sensitivity results showed that of the 14 drugs we tested, only one is above 50% effective. This is not great because that one drugs happens to be one that I've already done - Docetaxel (the second set of chemo treatment that we couldn't tell if it was working).

 

On the Pachmann test, Docetaxel tested out at 75% effective - so even though it didn't seem to be reducing the size of the breast tumor it could have still been working - the Pachmann test concluded that it should "stabalize" the cancer growth. We also tested the chemo drugs that were in my first set of treatments (the ones we stopped early) and the test showed that they would have less than 10% effect  which is assumed to be "no" effect - so that test result is actually good because we felt that there was no effect at the time and that's why we stopped them early and now we know that was a good decision.

 

There were a few other drugs in the 30-40% range so they could possibly be combined with the Docetaxel for a better effect. Dr. Klimo will have to make this decision.

 

Basically, this was not the good news I was hoping for ~ a super drug that was going to 100% effective and let me get back to my perfect little life being a mom, wife and teacher!! However, it does show us which ones not to waste our time on - which actually, one of the drugs that Klimo wanted to try showed to be less that 10% so we probably won't waste our time on that one now (or any of the other typical advanced breast cancer ones that tested less than 10%).

 

Based on all of these results, Roehnisch is going to make his recommendations to Klimo and give us a written report. However, I should also add that it was very clear that Roehnisch does not have a super strong, clear opinion of what exactly would be "the" best way to proceed. When the typical treatments aren't working and the testing is showing that the cancer cells are very aggressive it is obviously difficult to attempt to advise anything with certainity, which I obviously understand.  Roehnisch also stressed the importance of trying to get into a clinical trial that is testing one of the newer drugs that is specifically targetting triple negative breast cancers. He had several suggestions so he will discuss them with Klimo and then Klimo can make the ultimate decision with how to proceed for systemic treatment.

 

In the short term, it does not change the fact that I need to have surgery and then radiation as soon after as possible. I am still waiting to hear back from Dr. Klimo so hopefully he is getting this set up to happen within the next week or two as suggested by Dr. R and the radiologist here. I am also going to look into having some kind of chemo during radiation as there are some drugs that can be combined with radiation and I'm feeling like waiting at least two months to start chemo is too long.

 

On the other hand, I did have a Zometa infusion here; it is suppose to help slow the progression of bone metastases (and even stop spreading in some cases) so that is good. It is available as a special access drug in Canada (and may be covered) so hopefully I can continue it at home; you take it once a month through IV.  It will take some time to get the "special access" granted and with Christmas and all the holidays coming up, we figured it would be good to get the first dose now as it is readily available with prescription in Germany. I read up on the clinical trials that have been done for this drug and it has been proven effective to slow down spreading and some research indicates that it may even stop spreading. I'm feeling really good about starting it so quickly because the bone metastasis is still in very early stages and I would assume that most people have much further progression by the time they start taking it.  I am also going to fill a couple prescriptions here that are for some promising naturopathic medications that are not available in Canada.

 

Diana and I are not feeling super great as we were both very hopeful that the Pachmann tests would give us a more definitive answer with what to do in the way of further systemic treatment. However, the hours of consultation that we've had with Dr. Roehnisch are invaluable, in my opinion. Not to mention the new direction of a second surgery and the urgency that has been relayed to Dr. Klimo, is definitely an important accomplishment of this trip. I should also mention, too, how incredibly grateful I am to have Diana here with me. She has kept a continuous log of everything we have discussed with the doctors here and asked all the right questions. To be honest, although Dr. Roehnisch speaks English very well, I cannot understand half the stuff he's saying due his strong accent! Diana has had little problem understanding him and her medical background has helped us enormously; even with just knowing when and what to ask for clarification. She has also kept me organized and reminded me of the many different things that I needed to be doing, people to be contacting etc. She is such a great friend and I don't in any way underestimate the hardship it has been for her to basically drop her life (including three young children) at a moments notice to come with me to Germany. Wow, I am lucky and will be forever grateful :o)

 

Munich Update...

Sorry for the delay in my blog posting. I have been waiting for the chemo-sensitivity results and have just been informed that we won't get them until Friday now. Here is what we have dealing with over the past couple days...

Yesterday we met with Dr. Roehnisch again. He had read my PET results and was concerned as to why there was a 3.5cm lymph node left behind after surgery ~ so were we!?! After reviewing the PET scan disc with a radiologist, the conclusion is that the large node is probably an early recurrence rather something left behind from surgery. This is very worrisome as it is really becoming clear just how aggressive this cancer is. Their opinion is that the three tumors in the lymph nodes and local area need to be removed as soon as possible. Surgery to remove them and then radiation to prevent local relapse should follow; chemo can wait as the lesions in the bones and liver are relatively small and not problematic at this point. (It sounds weird even to say that as I think it is ALL problematic!!) However, it can't all be done at the same time so it does need to be prioritized.  He said that there is little point to doing radiation until the tumors have been removed. Dr. Roehnisch was able to contact Dr. Klimo and he is in agreement that surgery should be the first priorty. I am now just awaiting confirmation from Dr. Klimo that surgery can happen in the upcoming week before Christmas. Dr. R has said that the surgery can be done here within the week; can't even imagine how expensive that would be!!

We also me with Dr. Drazinski yesterday. He suggested a huge naturopathic treatment plan - most of which I am already doing but did have some new, interesting information to add to my current plan. He also explained the use of local hyperthermia to support my chemotherapy and I will definitely add that to my plan when I start chemotherapy. I already have an appointment booked with Dr. Parmar at the Langley Integrated Health Centre; currently the only place in BC that has a local hyperthermia unit.

Although I feel like we've doing a lot of waiting around and it's stressful trying to make decisions when it is difficult to communicate back and forth between Munich and Vancouver, we have accomplished quite a bit in a short period of time. Besides getting the third opinion I was looking for, and a new treatment plan, I also now have a direct connection for future Pachmann testing that can only be done in Munich. The circulating tumors test will need to be continually repeated throughout treatment and even the chemo-sensitivity will probably need to be repeated at some point during chemotherapy. This connection will save us lots of time and money in the future.

Well, that's the update for now. Will post again after we receive the chemo-sensitivity results.

On another note, Munich is SO beautiful ~ especially with the snow everywhere!

We're in Munich

We arrived yesterday and met with Dr. R right away. We had a tour of his clinic and discussed the Pachmann test results. Unfortunately, the initial bloodwork did not run as many tests as we need to make informed decisions on a treatment plan. Dr. R immediately drew more blood and we are now waiting for those results. We should have those results by Thursday. I will also be meeting with the naturopathic oncologist soon. I will update as soon as we have more information.

Thank you Kelly.

Throughout my blog, I make reference to Kelly; up until now I have left out her last name because I hadn't asked her if it was ok to use her name or story and hadn't even told her I had a blog. As I was reading the "stats" on my blog and realized that over 3000 people had read it after only two weeks, it occurred to me that that I should probably mention it to Kelly and ask if was ok to use her name. She recently emailed me to let me know that it was fine to use her name and story as she wants to get out the word that they will be starting a clinical trial here in Vancouver using Prof. Pachmann's technology.


Therefore, I've decided to post the link to her website that she just recently got up and running. If you decide to check out, her story is posted on the home page. http://kellysclinic.ca/


Less than two months ago (just after my surgery) my friend Diana told me that she was talking to her friend Laura at work. Diana had been telling Laura of my breast cancer and how it seemed so aggressive and was not responding to the chemo it was suppose to. Laura suggested that we get in touch with her friend "Kelly" because she seemed to have a very similar story. To make a long story shorter, I ended up emailing Kelly, telling her about myself, explaining the connection and asking if she would be generous enough to send me her story; I'm not sure why I did that because it's not really "like" me to be so intrusive and desperate sounding but for some reason I really felt like I need to hear from this woman I had never met before.


Shortly after, Kelly sent me her story. Wow... I could not believe what I was reading. This was my story! I had goosebumps. I could have written that story; up until the point where she meets a woman who, she believes, was by "divine intervention" and heads off to Germany. I was shocked. I sent it to all my good friends and family who were following my story closely and they all felt the same.


(Please read her whole story so you know what I'm talking about.)

At the time I was reading it, I had just had surgery and was feeling exactly the same as Kelly but as I continued to read, this is the part where our stories started to differ:

"Now what? It was clear to me that surgery, radiation and tomoxifen were not enough;
I knew that I needed more systemic treatment. I felt lost, frustrated and scared. It was
at that time I believe that divine intervention connected me to a woman who had very
significant and tricky cancer. By the time the agency diagnosed her breast cancer it
had spread to her bones, lung and liver. She had been all over the US looking for other
treatment opinions and ended up at a cancer clinic in Germany with great success.
She taught me that I needed to understand my own cancer, take control of my cancer
treatment and find a treatment that would work specifically on my body. This was my
first introduction to integrated cancer treatment, individualized and targeted to my body.
I learned that no doctor has a crystal ball. They do not know if a person will react to one
treatment or another so throw out the statistics. Assume you are going to live and get on
with it and that is exactly what I did."
(copied from Kelly's website http://kellysclinic.ca/ )


After reading her story, not more than a couple months ago, my life has become, with the help of so many different things "pointing" me in this direction, including Kelly, a whirlwind of "taking control of my cancer".


Since that November 4th day when I sent the first email, our stories seem to be getting even more similar. I don't know yet if we will share a similar Germany experience, but I do know one thing and that's for sure...


I too, have had a divine intervention; and her name is Kelly Findlay.


Thank you Kelly.

Leaving this Sunday!

Ok, for those of you who want the short story, here it is...

Diana, one of my best friends since childhood, has SO amazingly, offered to travel to Germany with me. This will allow Darren to stay at home with kids so things will be as normal as possible for them. We are leaving this Sunday at 3:45 and will return the following Sunday, Dec 19th. The plan is to have my blood tested there for circulating tumor cells (CETC testing) and chemo-sensitivity testing. I will start my first chemo treatment there along with hyperthermia and then I will come back here and continue with Dr. Klimo. I will also meet with the Naturopathic Oncologist, Dr. Drazinski and have him figure out a treatment plan to take back with me. I'm looking into coordinating my chemo with a Naturopath in Vancouver who does hyperthermia.


The Full Version of the past few days...
This past Monday I had the honour of meeting Kelly, Laura and Prof. Pachmann! It was so nice to be able to put a face to the emails; and very surreal to be sitting in a room with someone I had only read about.


Laura travelled with Kelly to Germany for her treatments and is also friends with my best friend, Diana; they are nurses at the VGH Lukeimia ward. Diana was my connection to Laura and then to Kelly.


Kelly and Laura have managed to connect Prof. Pachman with the BC Cancer Agency and they will be starting clinical trials using Prof. Pachmann's technology very soon.


Prof. Pachmann was here in Vancouver for five days this past week. Kelly had arranged a number of meetings and one was a presentation by Prof. Pachmann of her technology to a number of community oncologists from the lower mainland - Dr. Klimo was one of those doctors. Kelly had sent me this information and offered an invitation to Dr. Martin (my FVCC oncologist); she even offered Dr. Martin a personal meeting with Prof. Pachmann, if she couldn't make the meeting. As far as I know, Dr. Martin did not meet with her.   


So back to Monday...Kelly and Laura had been presenting with Prof. Pachmann during the day and offered to meet with us in the evening. Diana and I arrived at Kelly's later in the evening. Kelly explained that they had talked with Dr. Klimo about me and told him that I was going to Germany. They had also spoken with Dr. Roehnisch a little bit about my case and told him that I would coming over next week. Dr. Roehnisch wanted Diana to phone him the next morning so that he could get more information about me. Then Laura, Kelly and Prof. Pachmann explained to us a little of what we could expect over in Germany. Diana and I then left and faxed off all my medical records so that Dr. R would have have them when Diana called in the morning.


The next morning my sister and I went to see Dr. Klimo. I wanted to confirm that he supported the trip to Germany and that he would be willing to continue the treatment over here. Dr. Klimo was very pleasant and assured me that yes, he will be waiting to hear back from me and Dr. Roehnisch.


Diana spoke with Dr. R in Germany and he had received the fax and explained that after reading my PET scan results felt that starting chemo asap was very important. Diana said he was very easy to talk to, very friendly and compassionate. 


Tuesday evening I booked our flight to Munich.


Today I received another call from Dr. Leung, the radiologist, and again, I had to confirm that I was refusing radiation at this time. Again, he said that he strongly recommends it but he respects my decision. (Dr. Klimo thinks I do need it, but better to get started on chemo first)


Today I also sent Dr. Martin and her nurse coordinator, Colleen, a message to let them know of my plans and tell them that I am officially switching to Dr. Klimo for my chemotherapy treatments. It was hard and I was sad because they have been so supportive and always treated me so well.


Wow! What a crazy few days!


Tomorrow I go to the dentist ~ luckily got in last minute because I'm way overdue and you can't go during chemo. On Friday I will going to a doctor/counsellor who passionately believes I can heal MYSELF! :o)
Check out her website - Awareness Heals - Dr. Nelie Johnson.


Thank you to everyone for your positive messages and well wishes. I know that I couldn't do this without that support; thank you so much for that!

Love you dad.
Nov 18, 1943 - Dec 4, 2010

Dec 3 thoughts...

We are going to Germany.

We will wait until after we talk to Dr. Klimo this Tuesday; find out if I can start the new chemo here right away - like within a week or two at latest - then I will get started on it and then go to Germany. If it's going to take a few weeks as he orginally suggested then we will leave for Germany soon; either way I want to go there for the testing and the third opinion. Kelly said to have at least $10,000. in pocket for the intial testing and week stay.

My friend Kathy has had several people offering to transfer their airmiles; that would be great. We may have to make several trips back and forth especially if the treatment they decide on in Germany is not available here.  Kathy has looked into it and they normally charge 15% to transfer airmiles but if you do it within a week (before Dec 14) and tell them, they will waive the charge. So if that's something you'd like to do, check out the link on the right.

PET Scan Results...

My PET scan results were not what we had hoped for. It showed extensive spreading to more lymph nodes in my neck and chest as well as spreading to my bones and liver.

Not good at all.

It is now officially Stage 4 Cancer and that really sucks.

Dr. Klimo delivered this news to us this morning. He started with, "It's not good", followed by at least 2 minutes of torture while he put the cd of my scan in his computer and brought up the images. It was very upsetting and really unbelievable but there it was for us to see on his computer screen; a picture of my body speckled with little grey and black dots. He went through each area and explained what we were looking at.

When Darren asked where we go from here he suggested a few drugs that are relatively new so not generally covered. After a brief time with him, he sent us on our way to go home and phone our extended health to see if these drugs were even an option - they are over $10,000 a month. The names are Avastin (Bevacizumab), Nexavar, and Stuent. He also said that he didn't think there was any point to doing radiation. I think what he meant was that waiting for 6 weeks for the radiation to be over was too long to wait to start the systemic treatment.

On the way home, I stopped at SMH to see if I could get Dr. Martin's opinion. She wasn't there but I spoke with the nurse coordinator who said that she would give the info (my scan results write up and the drugs Klimo was recommending) to the doctor and she would phone us later in the day. Within a couple hours, Dr. Martin had called and said that she felt radiation was still really important and gave me the names of the chemo drugs she could "offer" me. I later learned from a very good friend who is an oncology nurse, that the drugs Dr. Martin was speaking of are the standard drugs that everyone in my situation would get and that they are considered more "supportive care" than "treatment".

Darren also called our Extended Health and it turns out that they will cover Sutent and probably the other two drugs Klimo has recommended as long as we get a detailed letter.

When I got home I sent an email to Kelly, to let her know the news and ask her opinion about the Germany option. Within a couple of hours she had phoned and offered her opinion~ so unbelievably nice of her. She felt that going to Germany was a good idea. She gave me the names of the doctors that she had treatment with and also happen to work with Klimo; Dr. Rohnisch, is the oncologist and Dr. Drazinski is the naturopathic oncologist. They would work together and come up with a plan; ideally I could go there for a week or so, get all the tests done and have them come up with a plan that I could bring back here.

Darren then called Klimo's office to see if we could get in to talk more about the drugs; how quick I could start and if he considered it treatment or supportive care. The secretary said he would have to call us back and he would decide if an appointment was necessary. He called us back right away. He had talked with my radiologist who felt that I still needed radiation but they decided that I should start the chemo and other drugs asap to get a good start at systemic treatment and then we could stop them for a bit, do radiation and them continue with chemo and other drugs. I asked him what he thought about going to Germany; if he thought it was worth it. He said that the blood work can be done here and sent to Germany, which I already new. I asked if he thought it would be better to go there, get a plan and come back here for the treatment. I said that I want to be as aggressive as possible and do whatever I needed to get the best plan. I also asked if I could get started on the treatment he was recommending and then travel to Germany while taking the drugs to get the third opinion. He said yes, that would be possible and we could talk about it more at our next appointment on Monday or Tuesday.

So that's the plan for now... will update again we see Dr. Klimo.

PET Scan is scheduled for...

Wednesday, Dec 1st. I will walk out with the results in my hand, on a CD.

Update: November 25, 2010

I am working on writing "my story" to put on this blog but it turns out that it's going to take WAY longer than I anticipated. So for now, I will give an update on what's been happening over the past couple months and where I see things going~

On October 14, the day before my last chemo was scheduled, my oncologist decided that it wasn’t working and it looked like the tumour was growing rapidly and had spread to the skin. That was a Thursday and by Tuesday I was in for my surgery; a double mastectomy. Since then I have been recovering well. However, when I met with my doctor and received the pathology results it showed that although the surgeon was able to remove the tumour with clear margins, the tumour had almost doubled in size and spread to all (19) lymph nodes and the skin. I have been told that there is an extremely high chance of recurrence and spreading but that there is no other systemic treatment (chemo) available. Basically, I will have my radiation (to reduce local recurrence) and then just have to cross my fingers that it doesn’t spread. Obviously, this was very bad news.

Since then I have been in contact with a woman, Kelly, who was in the exact same situation as me back in 2003. She decided to pay for a PET scan at a private clinic because, even though it is the best scan for earliest detection of spreading, her doctor said it would take several months to get it done at the BC Cancer Agency. After having the scan done she found that her breast cancer had started to spread. After doing thorough research on the best cancer clinics in the world she decided to go to Germany to continue her treatment. When she came back, her doctors were shocked that her breast cancer metastasis had disappeared when it is considered “incurable”. 

In Germany they do blood tests to monitor the tumour cells circulating in your blood (CETC test) and then test that blood against various chemotherapy agents (Chemo-Sensitivity Testing) to find the best one for you. They then combine low dose chemo with hyperthermia (heats the body to make chemo more effective) and also include various naturopathic infusions to support your immune system during treatment. During your treatment, they are constantly monitoring the circulating tumour cells in your blood to determine if they should continue or alter your treatments. At this German clinic the naturopathic oncologists work together with the medical doctors/oncologist. In Canada, they are completely independent of each other and often seem to be working against each other (in my opinion) Therefore, if you want to receive treatments similar to what they do in Germany you have to do the leg work yourself; have your blood sent out to Germany, find an oncologist who is willing to treat you based on the German tests and then find a naturopathic doctor to work with you on the other stuff.

Kelly recently explained to me that the BC Cancer Agency is meeting with one of the main doctors from Germany next week and they will be starting a clinical trial, here in Vancouver based on the all these German techniques. In fact, it was Kelly who had organized this meeting, and clinical trial; she brought over her doctor, Dr. Pachmann, from Germany.  I was hoping to get into this trial and met yesterday with one of the Vancouver doctors, Dr. Klimo, who will be conducting the trial. Dr. Klimo explained that it will be several months (at least) before the clinical trial is up and running and that I can’t afford to wait for it. He suggested a PET scan immediately, before my radiation starts, and said that if I send out my blood to Germany for the circulating tumour cells test and chemo-sensitivity testing (a naturopathic clinic in Langley will do this) then he will treat me based on this. Dr. Klimo said that if I were his daughter, this is what he would tell her to do; those were the magic words for me. My oncologist works out of the Fraser Valley Cancer Clinic and is not allowed to do this – she has a standard protocol to follow that their research shows works for the majority of women with my kind of cancer and that is all they can do - basically, she will not treat based on a technology that the BC Cancer agency has not yet put their stamp of approval on. Although she was wonderfully positive and supportive during my initial diagnosis and treatments (and I feel a sort of loyalty to her), I think it's time to move on.

I will be having a PET scan done within the week to determine if there has been any spreading and to help the radiologist target my radiation to any left over cancer cells. This costs $2800. In the next while I will also be having my blood sent out for the two tests done in Germany. This costs $3000 to do through the Langley Clinic. I am hoping that the test shows a specific chemo drug that will target my cancer and (although I hate to even think of this) then I can have more chemo along with hyperthermia treatment and naturopathic infusions. The hyperthermia is even more expensive. We expect that the bill will get pretty high but will probably be cheaper than heading off to Germany! (which I still haven't ruled out :o) 

I know that none of this is a magical cure and what works for one person doesn't necessarily work for the next. However, just the feeling that I can at least do something has given me the strength to literally get out of bed to fight this and not slip into a deep, depression. Having to live in a reality where I cross my fingers to hope for the best is not where I need to be right now.

Darren and I have decided that we will do everything we can to fight this cancer and reduce the chances of it spreading. We know that it will be expensive and are willing to get into huge debt or even re-mortgage our house, if needed. This whole ordeal has been so stressful and emotionally unbearable at times.  I feel extremely lucky to have such great friends and family who have gone above and beyond to help us by organizing fundraisers for this cause. We are also so appreciative of all the friends of our friends who are supporting them both emotionally and with the fundraiser efforts.

Thank you to everyone who has sent us cards and emails with well wishes, sent flowers and gifts to cheer me up, cooked dinners, sent yummy baking, handed us cash, sent over the cleaning lady :o), given us gift cards and helped with the kids. Thank you to Darren's work for being so supportive and flexible. And thank you to all my family and friends for listening and being interested. We could not have made it this far without all of you.

• Use the links along the right hand side of this page to learn more about my treatments.
• To read more about PET scans: http://pet-ct.ca/

Upcoming Fundraiser

http://www.facebook.com/event.php?eid=176123069067924&index=1
or contact Lindsey or Kathy for more info:
Lindsey - harmanlinds@gmail.com
Kathy - Kfurlong@telus.net