Looking for help in Colorado

[rar]

I was recently diagnosed with MDS. I am 73 YO male. Last July my PCP said my blood counts were abnormal and sent me to a hematologist. He did a bone marrow biopsy and said there were some small anomalies and I had a pre-pre MDS and most likely would never need treatment. In Feb. I went for a 6 month check-up. Cell counts were down and he wanted to start Vidaza. I was on plavix and Lipitor and was advised to stop 2 weeks ago. Numbers have slightly improved. Could either of those two drugs cause problems?

Component (Standard Range) 7/16/13 3/10/14 3/19/14
HEMOGLOBIN (14.0-18.0 G/DL) 14.2 11.1 10.9
PLATELET COUNT (150-400 10) 257 91 109
RED BLOOD CELL (4.76-6.09 10) 4.64 3.54 3.62
WHITE BLOOD CELL (4.0-11.1 10) 2.4 1.2 1.6

I went for a second opinion to Colorado University in Denver. He was unhappy with the past biopsy report and is repeating it. Not happy with treatment regimen. Wants to get new report before doing anything. I get the impression his clinic is not interested in treating me.

My brother-in-law is a retired hematologist and recommended the Seattle Cancer Clinic. The Mayo Clinic in Phoenix looks like another good choice.

Any suggestions on how serious this looks and where should I be seeking advice. In the past my experience with doctors has resulted in conflicting advice. I hope this does not sound too negative.

Thanks

Ray

[DanL]

RAR,

it is hard to find the right doctor. you would do well with either mayo or the hutch up in seattle.

I have been very happy with CBCI here in Denver and recently received a bone marrow transplant from them. I am now 24 days from the transplant.

A lot of these doctors have been researches and have worked at the Hutch as doctors or interns.

As for the seriousness, falling blood counts in that progression don't look very good, but could be associated with other drug interactions. Best thing to do is get the second opinion with biopsy as needed to determine if what you have is MDS or some other bone marrow issue that is simpler, such as a vitamin deficiency.

[rar]

Thanks Dan. I have an appointment at CBCI with Dr. Nash in 2 weeks. I intend to keep trying various opinions until I get a consensus that seems reasonable.

My D was low even on 1000IU so I upped it to 2000IU. B6 was low so I started 100 mg. B12 and Folate were mid-range. One doctor said supplement, another said no. I will have copper levels checked soon. Any others need checking. At present only prescription med is thyroid replacement.

Transplant seems like the only cure. I have 6 siblings so there may be a match. The doctor at CU seemed negative on them for me. I am 73 and in good health, good weight, exercise regularly.

I am interested in your experiences with a transplant.

Ray

[DanL]

RAR,

I am not really the best at discussing vitamin and mineral deficiencies since my diagnosis was pretty clear, but being low on B6 and D could be causal or the result of another process from what i understand.

CBCI does transplants I think until age 75 or 80, depending on your overall health. I think the world of the transplant staff, the nursing staff, and the overall hospital staff at PSL. They were beyond fantastic and exceeded my relatively high expectations at every step of the way.

Transplant is not an easy path, and I am only out of the hospital for 4 days, but it is the only known cure, and I am 40 years old, so needed to take this opportunity at this time.

CBCI also has access to a number of clinical trials that may be of interest. The docs tend to work as a team on bigger issues which is nice.

[KMac]

Ray,

Like Dan, I too am a patient at CBCI/PSL. And like Dan, I think the world of them.

Very glad to hear you will be seeing Dr. Nash. He is my doctor as well. I've never met a doctor I am more fond of. He lives and breathes hematology.

And as Dan says, many of the doctors at CBCI have worked extensively at Fred Hutchinson in Seattle, including Dr. Nash.

My gut feeling is, we can stay home here in Colorado, and receive as fine and comprehensive care at CBCI as we would receive anywhere.

As Dan says, there may be clinical trials at CBCI you would be eligible for. And on the chance there was a trial for which you need to go elsewhere, I'm confident they'd do what they can to help you get there.

I am sorry to hear of your experience at CU Denver, it is a rotten thing to come away from a medical institution with the impression they do not wish to treat you. From my limited but not completely uninformed understanding, I have reason to believe CBCI/PSL is a far superior location for treating blood disorders. For one thing, while I do not have the statistics handy, I believe the latest 1-year post BMT survival statistics were significantly higher at CBCI/PSL than they were at CU Denver. Also, I've met another 73 year old man with MDS who was doing well after transplant at CBCI/PSL. So I do not think your age would stop them from considering a transplant for you. Further, CBCI/PSL has over a half dozen hematologists on their transplant team, whereas if I'm not mistaken CU Denver only has a couple.

I wish you the best in your fight against MDS.

[Whizbang]

Ray,

In 2011, CBCI did twice as many BMT/SCT's as CU did (around 500 compared to around 250)...

CBCI had a 1 year survival rate of 70% (according to bethematch.com) compared to 57% for CU...

Here's the link for US Transplant Centers:
http://bethematch.org/For-Patients-a...57&p_src=state

[DanL]

ALong the BMT path, CBCI has done very well with MDS in the past several years, and was recently ranked against 20 other institutions in its volume of BMTs, and they ranked #2 out of those (but number one was a children's hospital, so not really the same class).

Not to beat the horse dead, but they are a fine group.

[Cheryl C]

I understand the 3-year post-transplant survival rate is the really important one to check. Do you know those statistics?

[Peachy]

Hello rar - We also live in Colorado and have appointment with CBCI in Denver tomorrow, as we are considering a SCT. My husband just turned 69. He was diagnosed with MDS in 2012. Unfortunately it turned to AML with 35% blasts in December 2013. He is now home, blasts reduced to 2% with induction chemo.

My best thought is have a doctor you trust with your best interests in mind. One that will answer all your questions without hesitation and give you all the facts. MDS is a roller coaster. This site is very helpful and at times gives you more information than you can take in all at once, but that's a good thing. I also suggest that you take someone with you to your appointments as we all hear different things. My husband calls me the scribe, as I write everything down so we make sure to remember all topics covered.

CherylC - thanks for the link to the Dana Farber report. It is close to what the doctor told us. Statistics are only a representation of what can/has happened. But since my husband almost didn't survive the induction chemo the stats weigh heavily on our mind.

DanL - I have followed your posts and am happy to hear what a great facility CBCI has and their care. We will be discussing the pros/cons for my hubby tomorrow and then make our decision.

Peachy

[rar]

6 months my blasts were 0%. I heard back on my recent biopsy. He says I have RAEB-2 with 10 to 15% blasts. Doctor want to start a clinical trail chemo within a week. He says my only hope is a transplant probably in a few months if I can drive the MDS into remission. Survival rates for the Denver hospital seem to be as good as any. Any advice?

Other results: The assay generated an indeterminate result in the bone marrow specimen. This finding means JAK2 allele burden is below the assay lower limit of detection but still generated amplification with JAK2 V617F specific primers

No molecular evidence for the FLT3 gene mutations (ITD and D835) is detectable by PCR-based assays in this specimen.

Ray

[DanL]

RAR,

was that the VIDAZA + Pracinostat trial they were considering for you? The Jak2 is interesting, but if it is not a high burden, probably not PMF.

[rar]

>was that the VIDAZA + Pracinostat trial they were considering for you?

It is a trail of Vidaza plus leualidomide or vorinostat.

I tested negative for FLT3 CRBPA IDH1, below assay for JAK2, and positive for IDH2. Does that mean anything?

[DanL]

RAR,

Both of those trials have had response rates of over 70% if I recall properly. Here are some articles on them:

http://www.mdsbeacon.com/resources/m...h2013/abs/386/

http://www.ncbi.nlm.nih.gov/pubmed/22915641

The good news behind the trials is that you are not the first in the study, and these studies are maturing, meaning that they know what to look for as far as complications, delays, and adjustments.

I am not as familiar with all of the individual mutational testing, but there are some references in the articles about mutations that are not favorable to response.