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Haaa - there is a definition for everything, my breast cancer included: It is triple negative. What does it mean then? It's what I have said - no targeteed drugs to be used, lower survival rate than with the other types (approximately 1 in 4 dies of it in a few years, and if it is found spread into other organs like liver or brain, life expectancy is approximately 13 months. According to statistics, that is. I have always believed in knowing my enemy. And my life is not statistics. Against all odds I am still alive. :) )
So I have the stage-three (most aggressive) "triple negative" breast cancer, an aggressive form of the disease that disproportionally strikes younger women and Hispanic and African-Americans (and me), and is impervious to the newest treatments. Yet my tumor was found in a very early stage so that gives some hope - also it was, so it seemed, not spread yet since there was nothing in the armpit lymph nodes.If that is to proove anything. I believe it is, since I don't know about anything else.
I am studying more of it so I save the links here to have them somewhere when I have time to concentrate.
http://dailyme.com/story/2010101000000699/shedding-light-triple-negative-breast-cancer.html
http://www.baltimoresun.com/health/breastcancer/bs-hs-triple-negative-breast-cancer-20101001,0,1038153.story
http://www.aolhealth.com/condition-center/breast-cancer/awareness-month/triple-negative-breast-cancer-survivor?icid=main|main|dl3|sec1_lnk3|175568&a_dgi=aolshare_twitter
http://www.aolhealth.com/condition-center/breast-cancer/awareness-month/triple-negative-breast-cancer-survivor-2?a_dgi=aolshare_twitter
http://www.dddmag.com/news-Researchers-Image-Triple-Negative-Breast-Cancer-with-PET-42210.aspx
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=25387
http://www.congoo.com/news/addstorycomment.aspx?st=124935795&Channel_ID=22&Category_ID=262
http://www.myfoxchattanooga.com/dpp/health/Cancer-on-the-Frontlines-How-I-Beat-Triple-Negative-Breast-Cancer_09370950?utm_source=twitterfeed&utm_medium=twitter
http://www.koat.com/health/24904938/detail.html
Sunday, October 10, 2010
Saturday, October 9, 2010
Doctor consultation
I realized that it has gone 6 weeks from the surgery and it means that I may go swimming again - my daughter will be delighted because meanwhile, she has not had anyone to go to the swimming hall with. Her big sister has not been interested, and because she has diabetes, I ahve not let her go with her best friend because she has some sort of problem with lack of concentration - and if someone goes swimming she needs to keep a bit focused on how our daughter is - in case her blood sugar would sink too low and she would not realize it by herself. Usually she does but in the water not always, perhaps because of the difference of the element - it burns more sugar than normal motioning.
I was surprised on how exhausted the doctor consultation made me. Since I got ill I have not been driving such distances myself very often - the central hospital is 100 km from us. I drove to the podiatrician once and she was astonished that I did - "Wow, now I can tell everyone that I have a client who comes from 100 kms distance!" LOL - and I was to the lung policlinic, and I was alone when I first went to see the surgeon and all the other specialists before the surgery but otherwise, my wonderful husband has been driving me and coming with me and he has taken care of all the practical things... and now it was about the treatments and it is never easy - and I have a lot to be considered over an average patient due to all the other conditions that I have.
I use to prepare writing down everything I want to ask the doctor about, and everything Rikard says that he wants to know too. Here the doctors are really informative, they take time to explain things and they answer questions and explain again if one does not understand it at once. I had been studying material delivered by the cancer organization and I had been reading a few books on the subject so I knew a great deal already before - but I did not know anything about the drugs. People are most concerned about the side effects and there is plenty of material about it but not so much about the drugs themselves. Rikard found a two-year-old article from a scientific publication that listed all the drugs used and all the drugs being tested - and I had copied that one and put it in my notebook to see at one glance what the doctor was talking about. (This is just to explain how excited I was, or nervous, or whatever the word - means that I was concentrating enormously). My tumor was hormone negative, fast-growing and fast-spreading one. Not to be treated with hormones, that is. Hormones would not be effective. (A pity on one hand but on the other hand I am happy - I like to remain in my own hormones unaltered, so that they may live their own life as normally as possible). I was hoping it would turn out to be HER2-protein-positive but it turned to be immune to that protein too (no receptors found) so this precise medication cannot be used either. Then the doctor had considered that it would be a two-phase treatment: first, three doses of TAXOTERE and then three doses of CEF which contains three different medications. Neither of these were on my list and I have not yet had time to find out anything about them so I cannot tell much more. I was given a patient guide to those who receiving adjuvant treatments to breast cancer, and I was taken to see the day department where the treatment is given. It looked very cosy, only a few patients at a time and each having their own nurse, doctor available all the time - felt very safe and well organized.
But it turned out there was a problem. TAXOTERE would cause problems in breathing which is not a succeeded combination with asthma, and therefore the doctors will negotiate about its safety together and make up their minds first after consulting other specialists. Again, it would be a pity to lose the most efficient drug since the tumor is already of a difficult type to be treated. On the other hand, it would also be a pity to suffocate already from the first dose (I think this is starting to be some sort of a cancer patient joking). Additionally, something in TAXOTERE also makes it that it causes extreme foot pain - and the doctor got dubious about that too because I have fibromyalgia. - If it will not be TAXOTERE the first three times, then it will be CEF all the six times; not as effective but the next-best solution. After all, nothing our Heavenly Father would not be able to solve!
I have a lot to learn about this - that I cannot know things so much on beforehand. That I have to live one moment at a time. That I have to be prepared to leave from this earth practically any minute. Anything can go wrong, as I have learned from the drugs. - I have been driving the car for so long that leaving this earth all in a sudden is not quite a strange thought to me, it has never been. ANything can happen in the traffic. any time. Still, now it is present in another way which feels a bit more close and concrete. It is not a bad feeling, just that I am trained in planning things ahead and this kind of adjusting is strange to me. As well as focusing on myself too. Suddenly it is my schedule that goes over everything else - holidays, celebrations, everything. Suddenly it is my disease that dictates the family's plans, my employer's doings, I don't even know what everything. I am not used in it. I guess no mother or amployee is.
So - the cytostates will be given in six different doses, over about 6 months' time. After that, three or four weeks again for the body to recover, and then the radial therapy for 5 - 6 weeks. And so far, I will be on sick leave at least till the beginning of December, most likely longer. My hemoglobine has been sinking again so when it is already low to begin with, I will probably be too tired to go to work anyway.
The first treatment will be on Friday next week - the 15th, which is, funny enough, the "Wear Pink" Day as this month is Breast Cancer Awareness Month. Funny - I think I will be wearing pink that day, having at least the colour to cheer me up if it gets too tough otherwise. I don't have to drive myself, I will be paid a taxi by the social security - the doctor will write a certificate for me for that. That is such luxury! And something I am not used to, either.
Life goes on.
I was surprised on how exhausted the doctor consultation made me. Since I got ill I have not been driving such distances myself very often - the central hospital is 100 km from us. I drove to the podiatrician once and she was astonished that I did - "Wow, now I can tell everyone that I have a client who comes from 100 kms distance!" LOL - and I was to the lung policlinic, and I was alone when I first went to see the surgeon and all the other specialists before the surgery but otherwise, my wonderful husband has been driving me and coming with me and he has taken care of all the practical things... and now it was about the treatments and it is never easy - and I have a lot to be considered over an average patient due to all the other conditions that I have.
I use to prepare writing down everything I want to ask the doctor about, and everything Rikard says that he wants to know too. Here the doctors are really informative, they take time to explain things and they answer questions and explain again if one does not understand it at once. I had been studying material delivered by the cancer organization and I had been reading a few books on the subject so I knew a great deal already before - but I did not know anything about the drugs. People are most concerned about the side effects and there is plenty of material about it but not so much about the drugs themselves. Rikard found a two-year-old article from a scientific publication that listed all the drugs used and all the drugs being tested - and I had copied that one and put it in my notebook to see at one glance what the doctor was talking about. (This is just to explain how excited I was, or nervous, or whatever the word - means that I was concentrating enormously). My tumor was hormone negative, fast-growing and fast-spreading one. Not to be treated with hormones, that is. Hormones would not be effective. (A pity on one hand but on the other hand I am happy - I like to remain in my own hormones unaltered, so that they may live their own life as normally as possible). I was hoping it would turn out to be HER2-protein-positive but it turned to be immune to that protein too (no receptors found) so this precise medication cannot be used either. Then the doctor had considered that it would be a two-phase treatment: first, three doses of TAXOTERE and then three doses of CEF which contains three different medications. Neither of these were on my list and I have not yet had time to find out anything about them so I cannot tell much more. I was given a patient guide to those who receiving adjuvant treatments to breast cancer, and I was taken to see the day department where the treatment is given. It looked very cosy, only a few patients at a time and each having their own nurse, doctor available all the time - felt very safe and well organized.
But it turned out there was a problem. TAXOTERE would cause problems in breathing which is not a succeeded combination with asthma, and therefore the doctors will negotiate about its safety together and make up their minds first after consulting other specialists. Again, it would be a pity to lose the most efficient drug since the tumor is already of a difficult type to be treated. On the other hand, it would also be a pity to suffocate already from the first dose (I think this is starting to be some sort of a cancer patient joking). Additionally, something in TAXOTERE also makes it that it causes extreme foot pain - and the doctor got dubious about that too because I have fibromyalgia. - If it will not be TAXOTERE the first three times, then it will be CEF all the six times; not as effective but the next-best solution. After all, nothing our Heavenly Father would not be able to solve!
I have a lot to learn about this - that I cannot know things so much on beforehand. That I have to live one moment at a time. That I have to be prepared to leave from this earth practically any minute. Anything can go wrong, as I have learned from the drugs. - I have been driving the car for so long that leaving this earth all in a sudden is not quite a strange thought to me, it has never been. ANything can happen in the traffic. any time. Still, now it is present in another way which feels a bit more close and concrete. It is not a bad feeling, just that I am trained in planning things ahead and this kind of adjusting is strange to me. As well as focusing on myself too. Suddenly it is my schedule that goes over everything else - holidays, celebrations, everything. Suddenly it is my disease that dictates the family's plans, my employer's doings, I don't even know what everything. I am not used in it. I guess no mother or amployee is.
So - the cytostates will be given in six different doses, over about 6 months' time. After that, three or four weeks again for the body to recover, and then the radial therapy for 5 - 6 weeks. And so far, I will be on sick leave at least till the beginning of December, most likely longer. My hemoglobine has been sinking again so when it is already low to begin with, I will probably be too tired to go to work anyway.
The first treatment will be on Friday next week - the 15th, which is, funny enough, the "Wear Pink" Day as this month is Breast Cancer Awareness Month. Funny - I think I will be wearing pink that day, having at least the colour to cheer me up if it gets too tough otherwise. I don't have to drive myself, I will be paid a taxi by the social security - the doctor will write a certificate for me for that. That is such luxury! And something I am not used to, either.
Life goes on.
Tuesday, October 5, 2010
Managing the daily walk is really challenging these days when fibro makes muscles stiff - but so far it has been half an hour each day, and the weather has been really fine so I think after all I feel great about the walks - I feel that I HAVE TO go and walk to feel that it is me who is in charge of my life and doings, NOT fibro, NOT cancer...
Even a longer walk today! :)
Even a longer walk today! :)
Hair loss, cyto
In case the cytostates that I will be getting will cause me hair loss, I have thought of cutting my hair a lot shorter than it has been for 40 years, in advance. Must feel odd - and fun! :)
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