No central reporting of long term chemo side effects

[Mel47]

The most stunning/shocking aspect of being a breast cancer chemotherapy survivor with long term side effects from the chemo treatments, is the reality that there isn't anyone keeping/reporting these side effects.(to my knowledge).
Why don't oncologists, drug makers, or some medical group develop a central reporting of these long term side effects in an effort to gain valuable knowledge from patients who are living longer than ever before, post chemotherapy? Armed with this information, wouldn't it show if drugs need to be developed to give at the time of chemotherapy to offset the effects of some of these long term side effects?

It feels like the "dark ages" to not have a clearer understanding of how many perople are suffering these long term side effects.

[Marylou_II]

Unfortunately no one cares what side effects we may have or how painful they can be. If you could post what drugs were in your chemo, what side effects you are suffering and how long you have had them perhaps someone knows some Alternative Medicine Treatments.

I also got chemo twice a week during 7 months honestly I did not have nausea, vomits and others while on chemo so that I don't know much about except for how I kept them from getting to me and according to my oncs I was quite smart with controling those. After the treatments I had pretty bad side effects but got over them with Alternative Treatments, this was 7 months ago and I am doing fine without side effects,

For your information side effects can be present until about 10+ years after chemo and/or radiotherapy thus you might as well do somethign about it. Get in touch with the Cleveland Clinic, I have read somewhere in this site that they have a program for long term side effects perhaps they can help you.

Regards.  

[Cleveland Clinic]

Dear Mel47, In the United States – MedWatch is the Food & Drug Administrations centralized reporting system for adverse events.  This system was founded in 1993.  An adverse event is any undesireable experience associated with the use of a medical product.  The MedWatch system collects reports of adverse reactions and quality problems, primarily with drugs and medical devices.  This is a voluntary reporting system and can be used by healthcare professionals, consumers and patients through a single, one-page reporting form.  

The MedWatch system is intended to detect safety hazard signals for medical products. If a signal is detected, the FDA can issue medical product safety alerts or order product recalls, withdrawals, or labeling changes to protect the public health. Important safety information is disseminated to the medical community and the general public via the MedWatch web site[http://www.fda.gov/Safety/MedWatch/default.htm].

There has been increasing discussion and study of long term effects of cancer therapies including studies of what can be done at the time of treatment to decrease some of these effects.