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Side effects

Denise3
Posts: 14
Joined: Aug 2008

I had a transplant 9 months ago, after chemo and radiation failed for Hodgkins in my neck and behind my chest wall. My thyroid is fried, and I am always tired. I have had no hearing loss but my nose is as good as a dogs(at least that's what my husband says) I can smell things others cannot. Also my memory, and concentration is really bad. I used to love; I mean really love chocolate and now it makes me sick. I can't eat bread cause it gets stuck in my throat and I start to choke until I can cough it up or someone hits me on the back to dislodge it. So no sandwiches. As well as lately I have had this excrutiating headache for 2 weeks with no relief. Am I just a hypocondriac or are any of these common for anyone else?

ldot123's picture
ldot123
Posts: 276
Joined: Apr 2008

Hi Denise,

I had Hodgkins 20 years ago. It took me quite a while to feel completely normal (whatever that is) I would say about 2 years. It was not all really bad during that time mind you. I did seem to pick any virus that was going around. Hang in there, it gets better.

Cheers, Lance

Pnktopaz10
Posts: 56
Joined: Oct 2008

HI Denise3
I am recovering from lymphoma that was in my neck. I had chemo and 25 sessions of radiation. My last session was October 31. I too have similar symptoms. Food smelled wonderful (as did the outdoors and clean laundry etc) but I cannot eat chocolate yet ( and I do love it so) nor can I eat bread or anything with tomato in it. My concentration is getting better but my memory stinks... I am telling you this to let you know that you are normal (at least cancer normal ). When I approached my dr about the same symptoms that you listed she told me that it takes time and for some people a lot longer then for others. I do get rather frustrated not being able to eat the Christmas cookies or have spaghetti but I just keep thinking that at least the cancer is gone! That gets me through a lot. The one thing I don't know is about your headache. Have you told your doctor?

Take Care and if you would like to e mail me my e mail address is lincem@aol.com. I am always willing to listen.

Have a Merry Christmas and a fine 2009!!

Pat

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I had NHL diagnosed 20 years ago and on recurrance 18 years ago had an autologus bone marrow transplant. I am considered cured by my docs now but have had many side effects that only now are being recognized as treatment related - most notably heart damage from one of my early chemo drugs - adriamycin. Since my time though it is possible that there is more monitoring of some of these drugs now so that this has become less of an issue - in adriamycin use at least - I haven't looked into the difference between my treatments so long ago for bone marrow transplants and how they are done today, so keep that in mind too. Also being more recognized as an aftereffect of cancer treatments, some treatments I mean, are tiredness, 'chemo brain' as we call problems with our memories and other mental functions. There is a list of different possible aftereffects but many are blown off by doctors as being age related issues and not the result of treatments and then of course every other reason under the sun, except due to treatment - some no doubt are because of other medical issues. Thing is that it is hard to know why, for sure, that we have these aftereffects but as far as those related to treatment (and the disease itself)you can be sure that some of your effects are probably related to treatment. Your gut feelings are your best allies in how far to look for reasons why you feel the way you do and experience symptoms as you do, so don't give up looking for the true reasons and seek out those docs who trust in what you report. Cancer Survivors who were diagnosed when they were children were our trail blazers in reporting symptoms from treatments and of course since they were still growing when they were hit with mega chemo and radiation it was clearer that the effects were due to the treatments so that opened the eyes of many docs. Then when we who were diagnosed as adults came along with long survivorship times after treatments, and started reporting after effects, we weren't believed in the beginning but due to the younger survivors who reported similar symptoms years before the docs started paying attention to us more and more. The treatments have gotten so much better over the years that we are simply living longer so it makes more sense than ever before that after a certain time has passed we will see aftereffects, or even earlier, of harsh treatments years before. Hang in there and trust your gut and report to your oncologist or family doctor and sooner or later you will find your answers, hopefully. It can be a great struggle to be believed but we are making headway. All the best, Blueroses.

dpomroy's picture
dpomroy
Posts: 137
Joined: Dec 2000

Hang in there. It's just not fair to feel this crummy through the holiday season, is it?!?! I had a transplant 7 years ago after my Hodgkins came back. I felt like such a mess. My hair fell out, I lost 30 pounds so my boobs shrank and my butt fell off, my thyroid died, I went into instant chemically induced menopause, my skin was so dry I figured it would all flake off until there was none left. I still have an incredible sense of smell, my husband calls me his labrador retreiver. Yes, chocolate makes me sick too. I am now allergic to shellfish. I still occasionally get strange headaches, no pain, but with a flashy kind of aura.

You are not a hypochondriac. Your body has been through hell! It took a while for you to get this sick. It will take just as long to rid your body of all the poisons, and come back from all that it has endured. What helped me was to think of my body as belonging to somebody else, somebody I needed to take care of, to be patient with, to nurture. I find that I'm much less hard on others than I am on myself. I expected myself to bounce back much more quickly than I did; but if had been a dear friend that had been this ill, I would have understood that it takes time and been cheering her on for every little accomplishment.

You can do this. Keep reaching out. You are not alone.

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