HELP!!!!!!!!!!!

[kimdebernardi67]

Hi guys. I’m praying for all of you! This is Kim De Bernardi, again. I was wondering if any of you out there are 65 or older and had induction treatment for AML that has progressed from MDS or known someone that has? My dad is trying to decide between Stanford and the Vidaza/Revlimid clinical trial and going through induction chemo at UCSF. The induction is scary. They said he has a 5-10% chance of dying during induction from complications; 25% complete remission rate for people like him and another segment of people have a leukemia remission; which means he will be back to MDS again, but not leukemia. The Stanford trial is so new. They really don’t have any numbers to give us; although, he said that there was a study out of Cleveland, OH where is showed 70% response rate with MDS patients. Or he can choose treatment with Temozolomide; which is a brain cancer drug and their study has shown a 50% response rate. All of the Stanford trials have been used for MDS but not for AML except for Vidaza. They said Vidaza has been used for AML and has had a 15-20% reponse rate.

This is all so confusing and scary. I welcome any advice or opinions of these treatments so we can make a well-informed choice. Thanks so much, Kim.

[jaxem]

kim
again, the only difference between leukemia & mds is 20% blast rate. at 65, he’s not so old that he couldn’t survive an induction chemo regimen. don’t forget, once induction is complete, he needs to go through another chemo regimen (consolidation) regimen. are you stating that stanford is advising the trial rather than chemo? response rate only means that patients show "some kind" of reduction in their disease. putting toxic chemicals into patients blood streams (directly into the heart) is a scary thing. many, many patients have gone through it. are you thinking transplant because that’s the only cure?

[kimdebernardi67]

Hi, Jack. Thanks again for responding to my post. Stanford only offered the clinical trials to my dad. They seemed to think he wasn’t a candidate for induction chemo. I have a sneaking suspicion that my dad’s home oncologist had something to do with that one. Yes, I know that it is very dangerous putting that chemo directly into the bloodstream, but that seems to be the only hope of getting a complete remission. Yes, we are thinking bone marrow transplant if they can get him into a complete remission and we find a donor match. Again, I really appreciate your responses. I notice a lot of people view these posts, but not a lot respond.

How are you doing? Have you started volunteering yet? I think it is awesome that you are wanting to help others that are going through what you and your wife went through. Talk to you later, Kim.

[Cindy]

Kim,
In October of 2008, I developed AML and had the induction chemo. I had very few problems with it – a little diarrhea and a couple mouth sores. Then in January 2009 I had a mini stem cell transplant and had very little problem with it also. Research has indicated that the stem cells transplants work just as well as a BMT and it is much less invasive for the donor. If you have any further questions, I will be happy to answer them.

[jaxem]

Hi, Kim
I’m not understanding why your dad would not be a viable candidate for induction/consolidation chemo such as a MEC regimen. My wife had very little side effects trouble with it. She did develop congestive heart failure, however, not sure if she already had it or got it the same way she got MDS, chemo following breast cancer surgery (secondary cancer). Cindy’s comments above reinforce these comments. I’m not volunteering yet & am taking it a little slow to return to my wife’s treatment center. they want me to put together a newsletter for patients & caregivers.

Cindy
your comment about BMT vs SCT is correct. I think BMT’s are rarely done anymore. Good luck to you and your convalescence.

[Author]

Posts