Newly Dx w/Hi risk MDS

[sbk007]

Hi all, I am 54 went for my annual physical on 2/5/13 & got a call next day my cell lines were low. RBC,WBC platelets. Hemoglobin was @ 11.3. Confirmed 2weeks later when 2nd blood test showed hemo was now 10.8, WBC returnedto normal but platelets still low. 50k I think. Went to hemotologist 2 weeks later wbc fine but globin 8 ish. Bone marrow biopsy came back w/MDS bad chromosome 7. No treatment, 15 months prognosis.
Sent to Cornell/weil met w/ hematoligist who was unusually upbeat. His plan treat w/ clinical trial sgi 110, then stem trasplant, and your done. Turns out the clinical trial is to test theMTD of sgi 110(astxdotcom). Reading about dacogen & other treatments for hi risk bad chrome 7 I am seeing only 16 % repond, and I cant find how long it actually extends the onset of death or ALM. Tommorow I meet with a stem cell specialist @ cornell/wweil. With the prognosis so dire why risk treatment other than the stem cell trans? Is it a good idea to get a second marrow biopsy done by another lab this one was sent out by the hematologist not the cornell/weil hemotologist? Id feel beteer knowing 2 labs found the same thing. The specialist @ cornell/weil says no the report was done well... Im leaning towards no treatment as I cant find anything that suggests that any of these things work for hi risk bad 7 chromosomes. Im also wondering why no 2nd biopsy to confirm the 1st one. Way I figure it the odds of a 54 yr old getting MDS of this type are well in the stratosphere so how could a second biopsy be so far fetched? TIA.

[Bhutt]

I have the same dx what are your blasts. I'm waiting to see about a stem cell transplant.My sister is a perfect match. Do you have any brothers or sisters that can test for a match.
Good luck
Blair

[sbk007]

Originally Posted by Bhutt

I have the same dx what are your blasts. I'm waiting to see about a stem cell transplant.My sister is a perfect match. Do you have any brothers or sisters that can test for a match.
Good luck
Blair

dunno the xact #..Have no Sibs,or family for that matter. Question is does one get a second BMB done by another hemotolist and analyzed and prepared by a different lab and patholigist?

[Bhutt]

They will find a non related donor. I'm sure if they do a transplant they will do another BMB before they get started to see what treatment will work best. I'm still waiting to see transplant Dr. I was dx on feb/12/13 hoping to get in by end of April. You need to keep a positive outlook change your user name to Cured.

Keep your head up
Blair

[sbk007]

Originally Posted by Bhutt

They will find a non related donor. I'm sure if they do a transplant they will do another BMB before they get started to see what treatment will work best. I'm still waiting to see transplant Dr. I was dx on feb/12/13 hoping to get in by end of April. You need to keep a positive outlook change your user name to Cured.

Keep your head up
Blair

... I buried my dad on12/27/2012, and before that it was a year chasing him in and out of the hospital, before that my mom died in 2010 of alzheimers that too took alot of work and my sis died in 2007. Now, 2 months after I bury my dad Its my turn.... Sorry I have no positive attitudes, hope, etc. just realism and fromwhat I read regardless of what the top notch specialists say, the odds of getting thru this r low for my case.

[Bhutt]

Im sorry to hear about your loses.I'm 57 and I have missing 7 as well and I know I will beat it with a transplant. So why shouldn't you have the same results.

I know it's not a nice dx but ower only hope is to fight & think positive if you think your going to lose you will.

Blair

[sbk007]

Perfect matches from a Sib is what u want for hi sucess rate. I am happy for u. Hi probability it will go well. Cornell/Weil is supposed to be top notch, if u got mds its the place to go (google gail roboz). Anyway I have c7 but its busted so what is the point of going thru dacogen treatment, or a clinical trial if there is no real benefit other than me being thhe youngest in the trial.
Theres big incentive to get me in that study,age and first time treatmment, but there are no results of the p trial and there are only 3 participants @ cornell the youngest 10 years older than me. Im not seeing any benefit from the treatments hes telling me to get while waiting for a donar. There are so few people in our age group w/ this to measure if it works any different than the elderly.

[Bhutt]

How do you feel? So far I have no symptoms only for a routine blood work I still would not know I even have mds. I'm from Canada so i will have transplant done here.Are you on a donor list? You can get a perfect match with a non related donor.

Blair

[sbk007]

Originally Posted by Bhutt

How do you feel? So far I have no symptoms only for a routine blood work I still would not know I even have mds. I'm from Canada so i will have transplant done here.Are you on a donor list? You can get a perfect match with a non related donor.

Blair

Had 1 transfusion already. Sometimes I feel fine sometmes just not right.
I didnt feel any real differnce till my hemoglobinfell to 8 or so. I dont see many hi risk mds patients on here. Have u met any? the low risk intermmediatte crowd age group is mostly in the 70s. WhenI read about treatment experiences none are in our age group or the thread is few years old. Amm I wasting my time on this site?.

[SLB]

Hi.. I was only 36 when diagnosed in Feb 2012 with high risk MDS 13% blasts. Even with 3 siblings & fairly generic (drs words) genetics there was no perfect match on registry for me. Therefore I did about 8 months of vidaza hoping for a perfect match to come along but in meantime transformed to AML. Needed two lots of induction chemo (both with risk of 10-20% not making it), was transfusion dependent every 2nd day for platelets & red a couple times a week & had SCT with 8/10 match on 6th of March (with 20-30% chance not making it) . Now I am about day +40 & white cells & platelets are in normal range. Still transfusions for red but seems I am in process of converting blood types so this is common. But so far I am still here & what choice did I have but to keep fighting even with my mismatched transplant & high mortality rates but way I looked at it the AML would of 100% killed me! Heaps of people find perfect matches on registry.

As for second opinion I would say probably a good idea. But definitely don't give up before you have even started! It is a hard road but many on this site have travelled it & lived to tell the tale. I found the info & support here invaluable, especially the comfort that you are not alone & others understand what you are going through. There are many who would love to have option of a SCT but can't due to age & co-mordities etc. I am definitely scared of the ling road ahead but I have come so far already & will find the strength to keep on fighting the good fight.. I have 2 small kids who need their mum!

Good luck & I hope you can find some motivation & not give up before you start.

[Chirley]

Hi sbk007,

I understand why you just can't feel optimistic at this point. I won't try to give you the "pep talk".

The prognosis of 15 months is if you have NO treatment. These days there are treatments which alter the life expectancy considerably.

You need to ask the haematologist what phase your trial is in. Personally, if there were other options (such as Dacogen, Vidaza or transplant) I would not enter a phase one or two trial.

If you want another BMB to confirm your diagnosis then, it should be done but its pretty definitive when they definitely found a cytogenetic abnormality (chromosome 7) on your first BMB. Do you know what your blast count is?

If your blast count is high sometimes they like to give Dacogen etc to try to bring the blasts down while also improving your Hb so you don't need as many transfusions.

If you are worried about going through the trial, chemo or transplant alone I think you will find that the treatment centres are very supportive and can put you in touch with organisations who can be there for you if or when you need them.

This is a journey that you have started on and it's going to be a big learning curve.

I wish you all the best

Chirley

[Neil Cuadra]

This study seems to be the one in question. It's only a Phase 2 trial and I think it's perfectly reasonable to ask the doctors "what's the benefit for me?". I'd worry that delaying a stem cell transplant to take SGI-110 in this dosage-testing trial might not be in your best interests because the longer you wait, the higher the chance that you'll evolve to leukemia.

A second bone marrow biopsy could give you the assurance you want that the previous lab results were valid. It could also reveal spot other chromosome problems that happen to show up in the cell sample. The question to ask yourself is what would change if the results differ in some way from the first bone marrow biopsy? If the results won't change your plans then there's no reason for the test. If they WILL help you make a decision, it makes sense.

Labs won't all produce the same analysis of a given sample, but suppose they don't spot the chromosome 7 problems. I don't think the doctors would call it spontaneous remission. Instead I think they'd conclude that the second sample just didn't happen to include those bad cells. Labs might not always spot a problem that's present, especially due to sample variations, but I doubt they could have reported bad chromosome 7s if there weren't bad chromosome 7s.

The disadvantages of another bone marrow biopsy would include the cost (maybe not covered by insurance this time) and the discomfort, and a very small risk from the procedure itself. Those don't seem like big disadvantages when you're trying to save your own life, but in my opinion the main reason for another biopsy would be to see if a treatment or transplant has had the desired effect, or if your bone marrow has changed over time.

[sbk007]

Thanks for your replies. I was wondering if dacogen, or vidaza actually extends the lifespan or onset to aml. The package insert for dacogen says no. This afternoon I have an appt w/ the stem cell dr. The sgi 110 is a phase 1/2 trial they are trying to determine the MTD for sgi 110 , I wouldnt know if I was getting 60mg or 90 mg. There is no data yet from the initial trial.
I agree in that why go w/a clinical trial when theres dacogen, and vidaza.
I have a lot of questions for him so ill ask. I dont meet with that speciaist till next week but the initial consult he recommended treatment untilfinding stem cell match. Thanks for the info. Its a lot to digest and there are quality of life issues. for example. If the initial prognosis is 15 months but the treatment takes 2 months and you get the side effects and whatever but extend life by 3 months is it worth it?.. stuff like that.
Thanks again.

[sbk007]

Originally Posted by Chirley

Hi sbk007,

The prognosis of 15 months is if you have NO treatment. These days there are treatments which alter the life expectancy considerably.

You need to ask the haematologist what phase your trial is in. Personally, if there were other options (such as Dacogen, Vidaza or transplant) I would not enter a phase one or two trial.


Chirley

The hematologist/oncologist that did the bone marrow biopsy and diagnosis, and prognosis told me there were no treatmments that he knew of other than supportive care. This is why he reffered me to Cornell/Weil.
I m w u why the trial if theres dacogen and vidaza. These r questions for him. What I m finding is there arent a lot patients in my age group with this disease so the Docs dont see it much so not a lot of info. Its all overwhelming so take it day by day and ask questions.

[DanL]

I recently had a visit with my Hematologist who has been having excellent transplant results for MDS and he said that it has become his practices standard procedure to start on Vidaza or Dacogen to reduce tumor burden on many patients to help the transplant process. He was not sure what the mechanism of action was, but there is some observational evidence suggesting that vidaza and dacogen in particular better prepare the marrow for conditioning and transplant.

There are some articles out there that refer to this mechanism as epigenetic priming.

I do recommend a second opinion when it comes to treatment options, but the finding of a missing chromosome 7 is pretty suggestive of MDS, so a second biopsy may or may not be helpful in deciding a treatment course. If you have high-risk MDS, many of the studies out there say that transplanting sooner than later is the better option - they don't specify whether pre-transplant treatment is good, bad, or indifferent though.

[sbk007]

Originally Posted by DanL

I recently had a visit with my Hematologist who has been having excellent transplant results for MDS and he said that it has become his practices standard procedure to start on Vidaza or Dacogen to reduce tumor burden on many patients to help the transplant process. He was not sure what the mechanism of action was, but there is some observational evidence suggesting that vidaza and dacogen in particular better prepare the marrow for conditioning and transplant.

There are some articles out there that refer to this mechanism as epigenetic priming.

I do recommend a second opinion when it comes to treatment options, but the finding of a missing chromosome 7 is pretty suggestive of MDS, so a second biopsy may or may not be helpful in deciding a treatment course. If you have high-risk MDS, many of the studies out there say that transplanting sooner than later is the better option - they don't specify whether pre-transplant treatment is good, bad, or indifferent though.

I met w/ the stem cell dept. head @ cornell/weill today. He said he likes treatment before transplant because remmision or any reponse yeilds better results and my blasts are 3% with one scoring method and 4 % with the other. He calls it a bridge. He prefers dacogen over vidaza only because theyve used dacogen for a long time. He said if I went to mt sinai theyd probably use vidaza because thats what they have experience with. He didnt see any urgency to rush to find a match just yet but next week they will take an extra vial of blood for hga analysis & start the match. He also said that a small group of hi risk patients are on decidibide for years but he did stress it was the minority. I asked him if it were him or his son what route he would take SGI 110 clinical or the dacogen, and he didnt hesitate to say dacogen.
Monday I meet with the hemotologist at cornell that works with this stem cell expert and take it from there. He said 15 months is wrong more like 2-2.5 years with supportive care no treatment no stem cells but who's counting...

[Neil Cuadra]

The advice you got sounds very sensible and matches what DanL described above.

[kris]

So glad to see you are getting your "head" around your disease process options. My husband was dx at age 60. He was on supportive care for years then Vidaza successfully after that stopped working he had BMT six years into MDS. The statistics are just averages. ATTITUDE is everything!!!!!! Be positive, be a winner!