The Use of Hydrazine Sulfate Or Other Drugs

[SASSI07855]

It is my personal opinion that after dealing with Myelo Dysplastic Syndromes (MDS) for two years that for many of us who have been diagnosed with having Myelo Dysplastic Syndromes (MDS) the normal medications that most of us use are really nothing more than a band aid. In some cases the drugs work well on a small limited number of patients. For some the drugs work sort of well for a while, but these drugs do not really fix the problems that we encounter. In about 33 percent of all MDS cases I have read about at some point MDS blossoms into full blown Leukemia. That recently happened to a friend that I met on one of these forums who had MDS for about seven years, and then all of a sudden she was diagnosed as having full blown Leukemia, and in a couple of weeks she was dead.

I was diagnosed as having Myelo Dysplastic Syndromes (MDS) in August 2014. My “variety” of (syndrome) has changed two or three times during the past two years.

I was using Vidaza until I was told that it was not working. This was after I spent three days in a local Hospital right before Thanksgiving 2015.

My Cancer Doctor switched me to Dacogen in December 2015. It seems now that this stuff is not working right. Since the middle of June 2016 my body temperature has been in a flux. My temperature goes go from 97.4 to 100.3. This is not an everyday thing but my temperature does daily get up into the high 99 range on a regular basis.

When my temperature gets close to 100 degrees I will take two Tylenol pills. Last Tuesday, July 5th, the PA that I see put me on Augmention tablets twice a day. This does not seem to make much difference in my temperature fluctuations. I also believe in, and do take some over the counter supplements as well. In recent days I have completely quit taking any supplements just to see if they somehow play a part in my temperature fluctuations. Apparently they do not!

I have read that most cancer patients, including those of us who are diagnosed as having Myelo Dysplastic Syndromes (MDS) do not die from cancer. It seems that something called cachexia, (pronounced kaˈkeksēə) that involves energy loss, malnutrition, and wasting away, as well as from opportunistic infections and organ failure that go with this weakened state that a person with a “normal” immune system can easily fight off are the causes of most deaths.

I recently read that in randomized clinical trials (a type of research study), something called hydrazine sulfate did not make tumors shrink or go away, however in some trials, hydrazine sulfate was reported to be helpful in treating anorexia and cachexia, caused by cancer.

I am posting this asking if anyone out there has any further information on the actual use of hydrazine sulfate, or for that matter any other drug(s) which may be useful. It seems that the majority of cancer doctors do not like it when we begin to ask questions outside of the box. I take the position that this is my life and if there is something there that might help this never ending MDS issue then I owe it to myself and to my family to do further research. Your thoughts and help on this would be very much appreciated.

[Cheryl C]

When I was diagnosed with MDS in 2011 my haematologist/oncologist made it very clear that the various drug treatments available for MDS may bring remission for a period of time but cannot cure. Only a BMT or SCT can hold out any hope of cure.