New MDS diagnosis

[JanetB]

My husband, Dennis, 53, was told Monday that BMB showed refractory anemia with excess blasts. This was about 10 days after he was admitted to hospital with very low RBC, WBC and platelet counts. RBC was 6.2. After blood transfusion, he felt much better and shoulder pain he'd had for more than a year was gone. He was always healthy until now. In past few months, he has been unable to catch breath with exertion, his face was white, legs felt hollow, etc. Doc shared results of BMB without explaining it was a scary diagnosis. My husband left office thinking he was probably fine. Doc said to come back in two weeks for results of chromosomal testing and flowtometry (not sure of spelling). From what I've read online, those results are needed to determine severity of MDS and stage 1 or 2. He'd just started a new job and doesn't have health insurance for another three months. Not sure what I'm asking. Just knew nothing of MDS until now. I've been crying a lot. He continues to work (he only missed one day of work for hospital stay). Guess there's no way to know what lies ahead for us?
Thank you.

[MarianneS]

Hi:

Read your post re: husband. Do not panic. My husband is much older, his diag. was MDS RAEB 2 and had a bleak outlook. It is one year later (Vidaza treatment, too elderly for anything else) So far, so good. I hope the same for your husband.

Keep in touch.
Marianne

[sbk007]

Janet,
Sorry to hear of your husbands issues. Sorry you have to go through this.
Until the Docs have an idea of exactly what type of MDS he has they won't know how to treat him. The symptoms you describe are typical for a lot of us that suffer from anemia. The Insurance issue I can imagine is another worry. The ACA / obamacare plans allow for qualifying events but I don't know the details. That's something you'll have to research. Its encouraging to hear that he's feeling well and is able to work.
All the best,
Steve

[JanetB]

Thank you all for responding. Marianne, did the doctors actually give a number of months he would live? I've heard of that from other cancer patients. I also know from reading about Kirby that we can all defy the odds with sheer determination. My husband is one of the strongest persons I know.

[Birgitta-A]

Hi Janet,
Remember that the most used tabels for survival are from 1997. Since then we have got much better treatments. Good that you read about Kirby Stone - he was a very brave man.

The staging of MDS is quite complicated. The % of blast (immature cells) in the bone marrow is very important. Save all results and follow them.

Hope your husband will get positive news next time he meets his doctor!
Kind regards
Birgitta-A
75 yo, dx MDS Interm-1 (RCMD) 2006. Txs dependent at dx with HGB 7.0. Supportive treatment until 2010. Thalidomide 2010-13. Now taking Revlimid.

[MarianneS]

Hi Janet:

Sorry about your husband and his diagnosis.

As far as longevity prognosis is concerned, my husband's doctor never gave us any sort of projections. Just said take it slowly and see how he responds to treatment. In the beginning he had pancytopenia (all blood lines very very low. Had 8 blood transfusion in one week and in addition two platelet transfusions. The neutropenia was very bad; but we were very very careful, isolated ourselves and did not socialize until levels came up to respectful levels. Lots of hard work but of course worthwhile.

Hope your husband responds well to treatment

Marianne

[pleasant1911]

I remember how it felt when my father was diagnosed with MDS. Its feels like SHTF, and all is immediately over. Just hang in there, and best way to deal with a love one having MDS is educating yourself.

My father got prescribed Revlimid for his first medicine when he was diagnosed with MDS-MF. and it was like 10k a month drug, but there are assistance from the revlimid company pay for it. Look into ssi disability if you need it. I will be able to enroll my father into medicare next year due to his age.

God Bless

[usaf1125]

I have had MDS for 10 years.The only number I pay attention to is my CRT, that determines when I need a transfusion. I have had 387 units. They only advise I can give is don't let it rule you life, worring never cured anything.I know it can be hard but you have to ignore it. I get so tired I can't walk a hundred feet without needing to sit down, but I keep on going.DON"T LET IT GET YOU DOWN, DON"t LET IT RULE YOUR LIFE













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[Caregive]

USAF, my husband is the same age as you and was in the AF. We are not using the VA for this MDS issue. Hard to know who has the best treatment, VA or outside. We live closer to the non-VA. Also it took ages for a diagnosis. It's been a year, almost two years but I think a good doc would have known sooner than what we experienced at the VA. So that's in the past. Husband is very active till it's getting time for a tx so about three weeks. We are going camping this weekend, getting away from the work of the garden. Wish there were support groups. I asked husb's doc. He said not needed. Oh, well. I don't have the energy to form one. So this is a great second, this forum. Thanks all for posting. I pray for everyone.

[rar]

I had the choice between VA or a teaching hospital. The VA doctor told me that waiting list for transplants was so long that I would probably be dead before my number came up. The 1 year survival rate at the VA hospital is in the upper 50's, the teaching hospital is lower 70's. I had the transplant 42 days ago at the teaching hospital and am progressing nicely. Having spent time in VA hospital I can say the accommodations and friendliness of the nursing staff leave something to be desired in the VA hospital. I thought I was back in the Army.

I am thankful for the VA hospital because they found and fixed a life threatening heart condition that 10 private doctors missed over a 6 year period.

Ray

[Umaterr]

Hi, my husband was just dx with high risk MDS. He has 3% blasts, low counts on all 3, red, white and platelets and he has 17q-, which is not good. He was told that there are transplants available but the chances for a good outcome, for him, were 30%. Yikes, not sure what to do now, I am reading every ii can about MDS and would love some suggestions on which way to go with this now. Also he was told that he had about a year and one half to live. Any information you can provide would be greatly appreciated. Thank you so much.

[Birgitta-A]

Hi Umaterr,
I really don't understand how your husband can have high risk MDS when his blast cells are 3% that is a normal value. For high risk MDS the blast cells should be 5% or more. http://www.marrowforums.org/mds.html

Then it is true that MDS after treatment for another malignant disease like myeloma is more dangerous and that his chromosome aberration isn't OK.

How old is your husband and does he have other diseases that can make a SCT more complicated?
Kind regards
Birgitta-A
75 yo, dx MDS Interm-1 (RCMD) 2006, Supportive therapy until 2010. Then treated with Thalidomide with positive response until 2013. Now taking Revlimid.

[JanetB]

Oncologist confirmed this week that BMB shows that my husband, Dennis, 53, has RAEB-1, with 8.5% blasts.
Husband has received two transfusions in about three weeks but he hasn't been prescribed medication. (all his counts are very low) When we asked about Azacitidine, doctor replied it was too costly without insurance. We are uninsured. The hospital has informed us that the "catastrophic diagnosis" makes Dennis eligible for Social Security disability and Medicaid. Does anyone know if Medicaid in fact covers Azacitidine or stem cell transplants? We've been told he has a chance of a 40% cure rate with transplant. We wonder if we can really count on Medicaid to pay for what he needs.

[maggiemag]

Janet, I am so sorry to hear about your husband's new diagnosis; he has already been through so much. I don't know abut Medicaid, but you have to be on Social Security Disability for 2 years until you are eligible to go on Medicare. This is as far as I know, unless it has changed with Obamacare. I think it depends on what type of Medicare coverage one has as to whether or not they pay for the IV drugs and SCT. I would think, though, that he would be awarded SSD pretty rapidly; I only had to wait 6 weeks on my first and only attempt for severe heart failure.

Margaret

[Hopeful]

Hi Janet,

You may want to check out the clinical trials at NIH.
If you qualify for a trial, treatment is free.

http://clinicaltrials.gov/ct2/result...&Search=Search

[sbk007]

It takes 5 months from diagnosis to get your first check from SSI. I applied and I have insurance through the ACA/Obamacare. The ACA has qualifying events that might allow you to enter a plan(Most of those plans cover all this stuff). Otherwise A trip to your Medicaid office might be a good idea. I believe medicaid has to pay for the chemo if the hospital he gets it at accepts it, same goes for the SCT. It depends on the plan you get with medicaid its complicated now with the ACA how all that works but its a good idea to find out. Open enrollment for Obamacare 2015 starts in November so you might want to start with Medicaid right away. I'm pretty sure its retroactive so they'll look back to when your husband was diagnosed and pay some of that. Also, many hospitals use a sliding scale for fees.
Best to you and your Husband.