Should we be talking about long term side effects?

I came across an article that was disturbing. I know when they give you the sheet on drugs they tell you the side effects of what to expect when going through your treatment. What we don't discuss is the long term, possibly permanent side effects any of you have from the chemicals. Yes, I would choose life over a little hearing loss from Carbo. I didn't really realize it would be permanent. I think of Mary and her neuropathy and pray she doesn't have any permanent disability. Is that a possibility? When you are making your decisions when first dx. You don't really think about it or ask that question, you just want the cancer gone. Or at least I did. I went on blind faith from the onc that was recommended to me. We are so uneducated during that period, so scared. We get on the net and try and look up things, but we don't really know what we are looking for.
So I didn't know if anyone out there who has been through this more than once would like to share with us any unpleasant side effects that we should be aware of...I hope everyone did have little to none, but just wondering. Thanks, take care k

Hi Kristin,
I know it's scary to think about the long term unknown side effects but please keep in mind the drugs are still rather new and it's hard to predict what happens when the drugs are taken in large numbers for a long time after being given only to control groups for much shorter periods. And what happens to one woman may never happen to another. I suffered from plueral effusions that were so severe I am now on oxygen and no longer able to work. Thousands and thousands of women have been on this combo and did not respond the way I did. Do your research and pay attention to your body. Ask lots of questions but keep in mind this is all pretty new.
el

I agree, we have to take the bad with the good. My long term side effects haven't been too serious; I have a spot of fibrosis in my lung from radiation but I was warned about this possibility by my rad onc before I started rads. I have a tendency to develope pneumonia in that area now, so I just have to really watch myself if I get a cold or flu. Also have GERD now, which I didn't have before chemo. Not anything I can't live with.

Love, Lolly

I think about this too.......

First of all it seems like a no-brainer, if we don't do the treatment we won't kill the cancer & survive long enough to experience any possible long term side effects.

Beyond that - how does one weigh what potential side effects are "worth the risk". We won't all get the side effects, even if we do, they won't all be permanent & we won't know until we try.

The warnings that concern me the most are the ones that say the drug could cause leukemia or other kinds of cancers. I know of a couple of people who have developed leukemia after having had lots of chemo or rads for another cancer.

So, I don't think there's a clear answer, but it's yet another significant piece we need to cope with.