Re:chemobrain
Oh yes, and you mentioned organizational problems. Oh brother, do I have problems with that now! I had some before, but it is worse than ever.
~J
> > — In breastcancer2@yahoogroups.com, “unicycle012000″ wrote: > > > > Hi again Janine: I just had AM coffee—so I’m good to go, for now. I have St II B breast ca, with positive nodes, and positive hormone receptors. I had the same chemoRx as you— the 4 dose-dense AC cycles, which was supposed to be followed with the taxol, but wasn’t because I developed hand-foot syndrome by the last cycle of the AC. This was at the beginning of 2005, and the oncologists didn’t know why, all of a sudden, a few people on dose-dense were getting the hand-foot syndrome. It turns out that at the exact time that I began chemo, there was a new item that was introduced into the chemo regimen, called neulasta. The research studies on dose-dense chemo for breast cancer all used neupogen to sustain the bone marrow, which is needed if dose-dense regimens are used. But at the end of 2004 the Amgen company came out with the new drug, neulasta, which is the same as neupogen in sustaining bone marrow cells, but has the advantage of being long-lasting, and thus only requires one shot after each chemo, rather than a shot each week. When I got my chemo and developed severe anemia and horrendous side-effects my oncologist kept re-checking her dose calculations, to make sure I was getting the right amount of chemo. But she didn’t know about the problem with neulasta, because the Mayo clinic study that showed this could happen didn’t get released until 2007, when they had accumulated about 10 women who got the same reaction that I did, with the hand-foot syndrome, etc. After this study came out, I believe that oncologists around the country either went back to using neupogen once a week, or they at least would stop neulasta if patients on the dose-dense regimen got the same side-effects as me. In other words, I was a guinea pig for this drug. The bad part of this is that I could never finish the chemo regimen, because of my reaction by the end of the AC. Also, there were all sorts of subsequent side-effects that are much worse for me because I got totally overdosed with the chemo. (The neulasta acts to make the chemo long-lasting, instead of allowing the highly toxic substances to be cleared from your body within 24-48 hours. So some people, like me, are getting more than double dosed on chemo because the neulasta, in them, causes the chemo to be built up in the body, rather than to be cleared!) > > > > At any rate, I got mega-dosed, and my side-effects from all the chemo are probably much worse. I believe that I probably also have much worse chemobrain on this basis. Its hard to know if my chemobrain is only worse on that basis, or also because of genetic factors or because of other metabolic reasons that are still not understood well (like steroid metabolism). But it makes me very angry to know that the “experts” don’t know either! I believe that it is just pathetic that oncology is so archaic that we are still trying to kill cancer cells with poisons that we know will kill normal cells also. We will all look back on this time in history like this was some barbaric treatment, like bleeding people in the 17th century was. > > > > The oncology experts are sometimes very smug, and they must believe that they are doing what is best for the patient, even if it is obviously awful, because they are offering all that is available to try and extend survival. But at what cost? Like you, I am very aware that they do not have all the answers, and they do not necessarily do what is best for us in terms of “quality of life”. For many years the oncology experts in other countries have been talking about chemobrain as a major problem, in terms of quality of life. Now, most of the major oncology centers in the US have acknowledged its a problem, and many of them are embarking on studies to try and determine who is most at risk of this. So its too little, too late, for many of us. But at least its a beginning. I am personally hopeful that the unraveling of the genetics of cancer stem cells will eventually lead to specific treatments that will be able to attack specific cancer cells without attacking our normal cells. (Like herceptin does for a specific type of breast cancer, now.) > > > > In the meantime,I am trying to get back my life, as best as I can. I finally finished the tamoxifen (not quite 5 years,but only 6 months less). Because of the severe chemobrain my oncologist told me to quit it. I did get much clearer after quitting the tamoxifen (there are a lot of estrogen receptors in the brain, and they get blocked with the tamoxifen, and this does effect our ability to think clearly). I am thinking about starting the Aromasin, but have not done it yet because I wanted to see how much of the chemobrain could be improved off of all these agents, first. My oncologist admitted to me that there are a lot of studies that show the intermittent use of any-estrogen Rx. actually might be more effective than ongoing use over a number of years. So I am on a break now. If I get up the nerve to try the Aromasin I will also stop it if the chemobrain or arthritis, etc. get worse. Thats my plan for now. > > > > For the chemobrain, I am doing the 12-week computer program that is part of the Stanford study, and will be done with it in another week. I will also probably continue with this program after I am done with participating in this study, since I do think it helps exercise the brain in a way that might be enhancing my ability to hang onto memories better, at least in terms of multi-tasking, and short-term memory. I still can tell I have major deficits in this short-term type of memory, and with the frontal cortex type of organization, etc. As you can probably tell, I am not happy about this. I was willing to tolerate a lot, as side effects of the chemo and subsequent hormone therapy. But brain dysfunction is not something that I would have agreed to develop in exchange for a small increased survival benefit. I believe there are others who also must feel the same. > > > > I am also taking a prescription called focalin, which helps with the mental fatique and alertness, and perhaps to a small effect with the multi-tasking ability. (UC Davis did a chemobrain study with this drug and found it helpful; it is more expensive than using the usual ADHD drugs, like adderall, but it might be better.) I don’t know if it will work for me in the future, but for now it does seem to help me get more done in the day. > > > > I hope all this wasn’t too tedious for you to read. Please get back to me when you get a chance. I am very interested to learn about how others are dealing with this, and other, side effects. Best wishes, Anne V. > > > > P.S. About your decreased cardiac function; just about everybody gets the 5-10% decreased left ventricular ejection after the chemo with adriamycin. It is just understood that everyone gets this, but it is a small decrease and apparently isn’t usually associated with any noticeable difference in ability to function, even in terms of athletic endurance. (Maybe this would be apparent in professional athletes.) >
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