Feb. 18
February 18, 2010 at 2:10 PM | Posted in Treatment Journal | 3 CommentsFinally, some good news to report. I’m actually feeling better the past couple of days. I have a little bit of energy. I have slept completely though the night the past two nights. My bowel problems have improved so that I’m not afraid to eat. Still not perfect digestion, but MUCH better than a week ago. And, I can start to taste certain foods on the rear part of my tongue now. Taste food!!! That’s something I haven’t done in a while.
My hearing is still shot, but that won’t ever change, or so I’m still told. Its just maddening.
As for the cancer, I won’t have a CT scan until the end of March, so I won’t know anything until then. That will be a baseline, so I really won’t know if tumors are growing until a CT scan later in June or July. Until then, its just live on and wonder. I won’t be doing any chemo again regardless of the outcome. It is what it is, but no more poison in my body.
Now the question is, can I work and function in society with my hearing so damaged? Only time will tell. Hopefully everything else will return to something resembling normal in terms of taste, energy, and my digestive tract.
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Hi Uttc – I’ve been following your updates as your diagnosis and treatment are almost exactly the same (even the same start and end dates) as my husband’s! I’m wondering about your comment about the CT scan at the end of March. Does this mean that you won’t know if the chemo worked until then? My husband had his first post-chemo scan last Monday already, and now we are in the midst of deciding what to do next – more treatment or just surveillance for a couple of months and then re-scan.
Comment by GrayArea— February 19, 2010 #
I’ve been told by my oncologist and the “experts” that I need to wait 6 to 8 weeks following the last treatment before the CT scan in order to get an accurate picture of what the lymph nodes are doing. That’s also the protocol listed by the cancer organizations who write such things. Apparently it takes a while for the tumors or growth to completely react. Also, the chemo still in the body itself can “fool” the scan, or so I’ve read and been told. Everyone says I’ve got to wait to get a true picture. I’d ask about that, and certainly get a second opinion before doing anything other than surveillance. I assume that because you said you are deciding between the two, that the CT scan showed somethihg suspicious. It may not be accurate, so definitely get a second opinion. I’d go right to Dr. Einhorn at Indiana, or that guy at Sloan Kettering that is so highly regarded.
Even after the first scan, it is simply a baseline. Scans following the first scan, every three months, will show whether the lymph nodes are growing or not. Because of the size of my lymph nodes prior to treatment, I’m told by my oncologist and Dr. Einhorn that there WILL be some residual scar tissue whether all the cancer is killed or not. The only real way to tell about residual masses is to do a biopsy, meaning that dreaded RPLND surgery, that I’m NOT going to do. So, I will have a CT in 6 weeks, another in 3 months, another 3 months after that, and then will have an idea if anything is growing or moving. If I were 20 years old, I’d be looking at the surgery almost definitely. But at 46, and with what I’ve gone through already, It’s not an option in the near future. I need to live some more, and can’t do so while recovering from RPLND and getting more chemo that will do “who knows what” to me.
I hope your husband is doing as well as can be expected. I know one thing, that chemo non-sense is nothing but an experiment on each of us. It has messed me up for life with the hearing/balance/ringing in the ears thing. Everyone reacts differently. The next stage of treatment, which for me would be both surgery, followed by more chemo, is not really an option as I see it. That’s a one-two punch I don’t care to receive, and would likely do more damage than the cancer itself. Its kinda wierd, but right now I have no fear of the cancer itself. Its the side effects of trying to treat the cancer I’m afraid of!
Best of luck to you, and don’t be afraid to write more and keep in touch.
Comment by uttc— February 19, 2010 #
Thanks so much for the explanations – I’ll definitely discuss this with the urologist that we are seeing this Tuesday. Rick has had a really bad chemo experience too, so more of that is not an option he’s willing to consider now, either. He has one 2cm lymph node now that the doc is unsure about; that is all that the scan shows is left of the previously enlarged nodes. I’ll let you know what happens – thanks again and I hope you continue to feel better.
Comment by GrayArea— February 20, 2010 #