Lou -- I commend you for looking at this skeptically. I was given vidaza early on as a type of palliative medication so that I could make a more graceful exit. (Before they thought I had any hope.) It is a type of chemo, but is a much lighter type of thing than the very strong chemo that eventually saved my life. I have read that it is the only effective treatment for MDS, but that even there it only works 50% of the time (which certainly is not bad).

I find it strange that they would prescribe this in your situation and I have not heard of it from anyone on this list. I would hope that if anyone has any experience at all like this that they will write. In addition, I am not an doctor of medicine ... I hope Cliff jumps in here and corrects all of my blunders, since he is.

Again, I would be skeptical because of the downsides. I know vidaza is a chemo and it does some nasty things like other chemos. I had to have blood/platelet transfusions during my first week of it, and I went neutropenic -- so it is not a harmless thing you can play around with. On the other hand, the dosage and refinements of it (my experience was over 4 years ago) might be quite a bit different now.

Let me put it this way personally -- I am chemo only, 3.5 years survivor. If someone were to offer me vidaza on the chance it might prevent a relapse and I had to make the decision, I would say forget it ... I will take my life as is right now and deal with a relapse if/when it ever happens. But that is me. If your med team sees major advantage of it, then it might be worth considering. Good luck with whatever you decide -- dave

Lou I had one week of Vidaza when I relapsed. Although it is usually used to keep MDS in check my Dr at the time thought it could work even though I was outside the range of blasts that it is approved for. My counts did initially drop but them the aml became too aggressive and I ended up having Ara C induction. It is an injection daily for a week and then I think you wait 3 weeks before the next series of injections. During that time blood transfusions are required. I think the protocol is 6 series of injections. I had no side effects other than blood counts dropping. I have never heard of it being used as a precaution as you have mentioned. Perhaps it is being suggested similar to the drug Andrea is on to keep the Flt3 in check.

From memory someone else is on it now - Suzanne maybe??

Nicole

Hi Lou,
Congratulations on 6 months post transplant that is awesome! I have started Vidaza. I had a transplant Jan 22 but my cytogenics came back with the same mutation I started with (T (3,11) ) 84 days post transplant per biopsy. I do not have the Flt3 mutation, but my cytogenic mutation is proving to be stubborn. I have enrolled in a study using Vidaza to treat post transplant relapse. I have had 2 cycles so far and starting my 3rd this upcoming Monday. I get a 30" infusion once a day for 7 days, then 3 weeks off. I have not needed any transfusions since my HCT and PLT have remained stable, yeah! However my WBC and ANC count have dropped after each treatment. They did not drop as much after the second dose which was great. I have felt tired with some nausea but I am able to do some "light duty" for work. It has not been bad, would rather not be doing it, but hopefully it will work. My bone marrow biopsy showed 97% donor cells, 3% my own, and the treatment will hopefully rid me of that 3% that are misbehaving. They will repeat another biopsy after my 3rd treatment.

So that is my experience so far. I was wondering why they were thinking Vidaza instead of a FLT3 inhibitor for you. Thanks for the update and glad to hear everything is going well, it is great to hear!

Take Care,
Suzanne

Hi Lou! Congrats on the 6month mark. I am the FLT 3 person on every thing under the sun it seems. I do not currently have active disease. I am 100% donor, however my PCR at Day 100 was positive for flt3. Essentially being seen on a molecular level so I am on sorafenib as an inhibitor and had one round of Decitabine. I am of the school of thought that does not want to hear the word relapse, so I am healthy enough to take preventive measures. The combo sorafenib and Decitabine did a number on my WBC and ANC, though I felt good. They dropped to 200 and 100, obviously putting me back in the neutropenic state. During that time, I had one fever that landed me a weekend hospital stay, I have nausea, dry mouth and hand and foot syndrome (all of which are very tolerable). Everyone needs to make their own decision and given the aggressive nature of my flt3, I bought into this plan for me. I likely will not return to my normal work setting again, so I am seeking alternatives. I ran out patient radiology facilities and the thought of catching a cold makes me crazy.
Do what makes you comfortable. I am currently looking to possibly enroll in the plexxicon3397 protocol for flt3 as a post transplant inhibitor, but I am not sure I will qualify without disease.
I am curious how you will continue your path. Trust your gut.
Be well. Peace, love and hope always,
Andrea

Lou

I have just attended a leukemia patient conference this weekend and one of the speakers was referring to Decitabine and Azacetadine (which I think Vidaza is) in relation to blocking flt3 so it would make sense that they might consider it as a preventative measure. The challenge is I think is that it only works on some patients and they don't know why that is yet. Just thought this may help in your post.

Nicole

Lou,

I am currently on a pexxicon trial for flt3 to 'bridge me to transplant'. My transplant doc did mention that she would have conditioned my flt3 with VIdaza if I had gone straight to transplant prior to my relapsing. Now this great drug (plexxicon 3397) has beaten back the mutated flt3 blasts and they are taking of putting me back on this after transplant. Regardless, my transplant doc is Memorial Sloan Kettering and she was going to give me vidaza pst transplant if that makes any difference. She also said it was much more tolerable than many other drugs. Suzanne knows best about that however.. Congrats on feeling like yourself a bit more. Take that as a major victory regardless of what you choose to do.

Ed

From what I have heard, there is o tried and true measure. My research doc has also acknowledged that much of the success has been accidental. Suzanne is on Vidaza and had had three rounds. I just finished round 2 of Decitabine with a 20% dose reduction. As long as this mutation stays away until new marrow gains full control and obliterates it, I am good with the accidental/incidental success.
Andrea

Ed:

I thought you were on the AC 220 trial. Whatever it is, it sounds like it's doing what it's supposed to do. Good luck and I'm sure it will work out.

You're at MSK, I'm at North Shore. I've heard that a lot of the treatment plans and protocols originate at MSK and are shared with the surrounding transplant centers. My doc has mentioned several times how the heads of the various NYC area centers meet regularly to share data and research. I'll bet my doc got the idea from your docs over in the city..

The fact that your doc is also considering Vidaza post transplant and Nicole's comment about the conference suggests to me that they've found something that hasn't yet been published. MSK is usually part of the latest cutting edge treatment plans, wherever in the world they happen to originate.

Stay tuned. We may be on the ground floor of a new treatment protocol. Take care.

Lou

HI every one I'm quite new here ,. was reading all your comments and will like to share my personal experienced, I was dx with aml 4 with FTL3 factor had two inductions ,2 consolidation, and a allogenic transplant I relapse after 6 months yes heard breaking I always new I neede a maintence treatment because the ftl3 is so agressive I ask my transplant doc about NEXAVAR she say they wasn't doing it at tha t time ???? didn't insist she's the doc never new if the ftl3 was gone .I BElieved that if they had given me a maintence treatment i won't had repalse I just feel it in mt heart, on may 31 i found out i relapse they gave me 2 options chemoterapy not sure wich or nexavar 800 mg a day combined with 3 treatmens of vidaza i choose some thing different this time also hear a lot of succes stories with nexavar for the ftl3, the blast on my blood was 83% and 61 on my bone marrow in aweek of taking nexavar it put the blasts at zero so they gave me the first tratment of vidaza 7 days injections it dropped all counts to nothin i need many transfusions, got me very dizzy and nausea ect,. we don't know if i'm on remission they want to wait unti i finished the second round of vidaza,. but i'm doing ok no infections so far just waiting. trust your your instinc you know your body better then any body doc are human and make mistakes , i new i had relapsed a week before they did the biopsy when i went to see the doc i told her doc i think i relapsed my counts re very different and something is wrong she she answer me no your fine some times this happend i was taking many antibiotics for two types of infections i had so she contribute to that but i still insisted , she send me to get a lung test and bring it back she told me she was sorry i was rite i had relapsed , 46% blasts on my blood . just sharing my personal experienced taking one at a time. also learning a lot from you guys this is the first time i her about plexxicon 397 need to get more information about it.

Martinez,

Sorry to hear about your AML experiences. FLT-3 is a real problem, but we have several strong and brave survivors on our website. Where are you being treated? Do your doctors speak at all about a second transplant or only about medical treatment? It is a hard road with your mutation, but fortunately there are now inhibitors available in Phase 3 trials and you should inquire about them.

One other thing. I think your insistence that something was wrong was the right thing to do. Doctors are not always right, and frequently the patient has reason to request more tests and attention. No one knows their bodies as well as a patient.

Hang in, and keep us informed about what is happening. God Bless you.

Cliff

Hi all!
I speak to the researcher at Penn regularly. It is wonderful that these docs all regularly talk to each other. I have heard them actually say, it's not a competition, we want to share everything we know with each other. The Vidaza and Decitabine protocols were accidental findings . I am obviously flt3 and my approach is as aggressive as the docs I use. I knew about Nexavar long before my transplant in January and I was a complete nudge about going on it right away. I did have one transplant doc tell me i did not need an inhibitor-i respectfully disagreed. Nexavar is cleared for use for flt3 as a post transplant inhibitor. It is very expensive ($5,000/month). I am beyond thankful that my insurance company approved its use for one year. I am currently being treated with Nexavar 800 mg daily and Decitabine though I have no sign of disease. My symptoms are miserable but manageable.There was a single molecular finding suggesting the mutation got through, so we took the approach of an all out assault until my new marrow can finish it off. My understanding is that it could take 18 months for this to happen, so using the inhibitors is the bridge.
The Decitabine appears to be working for me. dose 2 had my counts bottom out at day 9. I look at it as a regular re-boot of blood cells. Knock them down and force the new marrow to recreate constantly -at least that's the visual I use.
I am glad everyone is sharing their experiences. The side effects stink, but only because we are now outpatients and want to feel perfect. Not being in the hospital does not necessarily translate to do everything you used to do so while on this chemo, you will be fatigued, nauseas, possible big 'D' and general achiness. I try to remember, it's a better state than where I was one year ago(in ICU on a ventilator). I pray to God every night for every one of you. Hang in there all.
Peace, love and hope,
Andrea

Martinez,
Plexxicon 3397 is in a clinical trial with no end date currently. Depending on where you are being treated, you may need to go to one of the research institutions to get signed on.
I qualified for its use, but since my current treatment plan is working, we have chosen to keep Plexxicon in our back pocket if the need arises down the road.
Andrea

All,

I am so sorry I have been away. I was recently married and am trying to spend time with my wife before transplant. I am FLT3 postive and NPM-1 Positive as well.

I was put on Plexxicon 3397 which has shown great promise to get me back in remission after my re-induction after relapse relapsed again. I just had a bone marrow and I got GOOD NEWS. 1% blasts and NO SIGNS OF FLT3 mutation. I have been successfully BRIDGED to transplant coming sometime in the new few weeks.

Vidaza, Plexxicon and AC220 all have shown promise with FLT3. I believe that although FLT3 is now a difficult mutation to have, the rigorous testing of new drugs is working to our benefit. My hope is someday it will be a GOOD thing to have as they are dedicated to finding ways to treat it!

I will also note what my AMAZING doctor at Cornell Weill hospital told me that some older patients with FLT3 who had no recourse for BMT have been alive and thriving on Plexxicon 3397 alone for over 1 year! This is a major breakthrough. I will post this on a new thread as well titled FLT3.

love to all.

Ed

I'm late to this discussion but I too have been prescribed 2 cycles of vidaza shots because my 6 month bone marrow chimerism showed 11% me down from 100% donor. My TCells are,still 100% and my biopsy showed no evidence of leukemia nor biphenotypic abnormalities (I had ABL). My doctor wants to do this round because of my chimerism and because it took 2 inductions to get to remission. He sees it as being proactive. Just finished first day. Hope my counts don't bottom out...

Hi again Annie. As you can see I started this thread almost two and a half years ago. As it turned out my doctor never followed through on the Vidaza plan for me. I'm not sure why, I never asked, I was just as happy to take a pass on it. But treatment for this disease changes rapidly with all the new drugs and the maturation of clinical trials. One of the things we say often around here is trust your doctors. I'm sure this is the right path and the Vidaza will do the trick. Good luck and check back often.