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I received this message this morning on our guestbook. The sender wished to remain anyonomous. Please Comment.

Hugs
Christine




I am a breast cancer patient HER2 positive, node negative. Had 6 sessions of taxotere/epirubison and went toxic on chemo. It has been a 1 1/2 years since chemo. I have permanent tissue damage, no reflexes left in feet, permanent neuropathy in toes and fingers, numbness entire side of the right breast and right back, down right arm to elbow. My question to you is why is it that NO ONE on any website chooses to share with patients the permanent damage chemo can do and the symptoms patients should be looking for instead of depending on their docs. I haven't been able to find ANYTHING on the permanent effects of chemo. I wish I had known that this could happen, I feel as though I was purposely not given enough information to make an informed decision about the treatment I chose. Had I known my qualify of life would be so ****ty and I would be working towards homelessness, I would never had accepted chemo as treatment. SHAME ON THE MEDICAL PROFESSION FOR KEEPING THIS A SECRET!!!!!!!!!!

When I started this journey and each time I have had chemo I was given a book on the chemo I was given. In it it told me what the side effects were those that were serious, common, less serious and less common. It also stated that if I had anyone of those to call the oncology department and let them know. Also that some of the side effects may be permanent but that most of the time they went away once the chemo was stopped. As far as the doctor or nurse ever telling me that any of these would alter my life that much they didn't. I was given a phone number that I could call anytime day or night and weekends. It would be intersting to hear what others have to say about this. It is too bad that this had to happen and it would be interesting to hear from others on this site. I didn't think chemo was as bad as it use to be and I think they have come a long ways. They still have a long ways to go!! Hugs, Sandy

Hi, if anything the info I get from my onc and nurses is always the doom and gloom, the worst side effect and permanent damage. If I want to know anything I just type in the question at the top of the net page and hit GO and I usually get what I want to know, something so simple as that to do a search and I get answers. I have been doing this since 1998, continual chemo and radiation and meds,NED and not NED, and I have just been told that if I didn't have treatment for the enlarged lymps in my neck which were pressing on nerves causing pain to my head and shoulder, that I would loose the use of my good arm, the lymph side shoulder was fractured 18months ago and went missed and untreated, I am waiting for a shoulder replacement not even cancer related, and if I chose not to there was the possibility that I would loose it anyway. I have gone with the treatment and after one round of Herceptin/Taxol/Carboplatin I can turn my head without pain. Like life, everything is a gamble, and I don't do this entirely for my own sake, I keep on doing it for my family, I have a 14 year old daughter and 2 grown up sons with a supporting partner, and to visualise them at my funeral is heart breaking so I choose to carry on. If and I say if, I get to a stage where it is humiliating and degrading to go on with life, then I will make other choices. Hugs Lyn