confused newbie

[kevin101]

Hi everyone,

I am newly diagnosed this week – I’m sure you know the story: asymptomatic, CBC at routine physical shows low platlets and WBC…

I had a BMB on Saturday, my hematologist called monday telling me it looks like RARS and that the best thing to do is watchful waiting – we set up appointments at one month intervals to keep an eye on the counts. He called back on Wednesday and says that it now look like RAEB; there are in fact blasts “at about 10%” in the marrow and some observable Auer rods. He has refered me to a transplant doc in Denver (trained at FredHutch)who believes that in my case there would be advantages to attempting a non-ablative BMT sooner rather than later (we have an appointment next week.) I don’t yet have the results of my cytogenetics.

To summarize, I’m 47, asymptomatic, no circulating blasts, HGB holding at about 14, WBC about 2.1, platlets about 60 – but have “some observable” ringed sideroblasts and 10% excess blasts in my marrow (with some Auer rods).

Has anyone dealt with these somewhat unsual results? My Hematologist thinks that if we wait the “good” numbers will fall into line with what would be expected.

Should I even consider having a BMT here in Denver or should I get my backside on a plane?

Thanks,
Kevin

[eve]

it is my opinion that this disease never goes away by itself – the best that could happen is that one of the new medications on the market helps improve some of the counts – for some it works longer than for others – for some it doesn’t help at all

the only option that could possible cure is a bmt – i think your hematologist is correct in saying that by waiting the good numbers will fall into line with what would be expected – right now your body is still strong enough to handle the rigors of a transplant -can’t tell you the best place to go for a bmt, but i am sure some other members on this forum will voice their opinions

wishing you good luck in whatever choice you make

eve

[Suzanne]

Kevin, you have a lot on your side-youth,and early detection of the disease. Sounds like you are working with medical people who have at least some knowledge of MDS. However I still would go to a center of excellence for a second opeinion before making a final decision on what path you want to follow-especialy when they are reporting an unusual reading on a diagnostic bone marrow test. If you are going to consider the transplant route any siblings should be checked for a match before you go the non related route. Check out the number and success rate of transplants for your type of disease wherever you decide to go. As far as I know a tranplant is still the best chance for a cure. The last I heard Fred Hutchenson in Seattle was still the top place in the world to have a tranplant. Good luck to you.

[Neil]

Hi Kevin,
Very sorry to learn about your dx.
Would look into a BMT or SCT at both Fred Hutchinson and M D Anderson. They seem to have the most experience with transplants on MDS patients. If you do not have any siblings or if they are not a match you might wish to contact Dr. Richard Childs at the NIH. He has done quite a bit of research on unrelated and unmatched donor transplants.
The key is the success rate on patients your age. The success rate on patients with RAEB. The success rate at the 5 year point—might be tough to find this.
Would deal in absolute numbers not percentages.
There are a ton of questions that will evolve as you proceed.
Remember all MDS patients are different. No two alike.
At your age you have some time, but as you age the odds go down. There have been some significant advances over the past year and hopefully there will be more drugs that will help. So far the drugs will sustain some patients for a while. The only cures are a BMT or SCT.
An experienced hematologist is very important! The more RAEB patients that doc has successfully treated the better!
I have been asymptomatic for almost 9 years. My counts are still declining at a relatively slow rate. A week ago my platelets were at 7,000. Reds and whites manageable. Your counts will probably never be higher than they are now. Slowing the decline is possible, but you have the advantage of youth. Gather your facts and get the very best possible advice on your options. It will take a bit of time, but patience and objectivity may pay off.

[sugarwhale]

Dear Kevin,
I agree with Suzanne–and others too, of course. You’re lucky to be young enough to consider a BMT. My advice is to be sure to go to a Center of Excellence and to get a second opinion or even a third one. Surely Denver has a Center of Excellence. If not, we have one here, and we’re only 7 hours away! Good luck, Kevin!
~~~ Janet

[Brenda P]

Sugarwhale, did you do combination therapy, or were your Vidaza, valproic acid, and thalidomide sequential treatments?

Thanks for all your help!

[kevin101]

I know I’ll be visiting this site often!
My wife and I are touched by your words and encouragement.
Thanks!
Kevin

[g-masews]

Welcome Kevin, we are in Denver too and the Rocky Mountain Cancer Center is excellent and they have doctors profiles and resumes online. Check those out,some are very experienced with MDS. We are with Kaiser so our only choice for a BMT is City of Hope in California where Kaiser contracts. Because there are things to consider when you go out of state such as cost, family, care-takers, job considerations, insurance, etc. it would benefit you to check on local cancer centers first. You are young and, therefore, BMT might be a very good option for you and, of course, better while healthy than waiting. But that still doesn’t mean you have to make a decision too quickly. We got good advice from someone at the AAMDS conference in Denver in July, when we had only been diagnosed a couple of weeks: Slow down, breathe, get informed, and breathe again. There’s time. Best of Luck.

[sugarwhale]

Dear Brenda,
I left you an email with the answer to your question, but there’s no reason everyone can’t know the answer. My mom, not I, has MDS. She took Vidaza, Thalomid and Valproic Acid, but only in sequence; not at the same time. Vidaza worked about 3 months; Thalomid worked longer. Valproic Acid never worked and, in addition, zapped the WBC which had always been OK. My mom is not helped by epo (procrit). This is because she has defective red blood cells, not simply too few of them. She HAS them, but they don’t work right. We are waiting for Revlimid and hope that will work. We are almost neighbors, if you’re in Tucson! Best wishes to you and your dad!
~~~ Janet

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