Newly Diagnosed with MDS

• Author
  Posts
• September 1, 2021 at 12:40 am #54897
  Lee Smith

  Participant

  I am a 55 year old male who runs 6 miles a day and lifts weights a couple of times a week. Was referred to a hematologist because of a low blood count from my PCP. He recommended a BMB but did not think my levels were critical. After the BMB he called me in for the results and said I had MDS and showed me the report, that I now know was a computer model, and said based on my numbers I am at the “very low risk stage”. Forgot what my hemoglobin and platelets were but my blast showed 0 percent and my cytogenetics were normal but he wanted to refer me to a MDS specialists. Flash forward a week and I meet with the specialist and he said based on the pathology report everything is the same as the computer model except my blast is showing greater than 5% but fewer that 20% which puts me at the intermediate stage and will need to start treatment (one of the 2 approved chemo drugs) soon. He did say his pathologist is reviewing the slides from my BMB and will get me my exact blast count later this week.

  My question is it normal for there to be that much disparity between a “computer model” and the pathology report of a BMB and if so why would a doctor use a “computer model” to consult a patient? Not blaming the hematologist because thankfully he did refer me to a specialist but that is a huge difference from going from “very low risk” to “intermediate”. Sounds trivial but as concerned as I was about being diagnosed with MDS I was relieved when I was first told I was “very low risk”. I felt I had a few years to get my affairs in order before disruptive treatment. Now it sounds like I could be starting chemo in a week or so. And the specialist said as soon as we get your blast down from the chemo he would refer me to a transplant doctor? Not ready to be 6 months to a year out of work undergoing a stem cell transplant!! Not worried about the risk involved or the hell I know I will go through. Just the disruption in life and the financial aspect.

  This is all just very scary for me. I thought I was healthy and yea I will run 6 miles tomorrow.

  September 1, 2021 at 3:27 am #54899
  Clint Holland

  Participant

  Good question, I don’t know the answer but I would certainly like to know how things proceed with you, You sound quite fit, fit enough to fight this I would hope….By the way what is PCL short for? Cheers, from Perth, Australia

  September 1, 2021 at 8:22 am #54901
  Kevin Dugan

  Participant

  Judging by your activity level your HGB is not low. What exactly is the indicator for a transplant. I would go slow as long as symptoms are minimal.

  September 1, 2021 at 8:30 am #54902
  Sue

  Participant

  Kevin,
  I think the blasts are the key to determining a transplant. In my case I went from low risk to intermediate risk group and put on the “watch and wait” list. That drove me crazy! By the time I got a second opinion, I was high risk, put on Vidaza and Venclexta for 6 months then it was time for the transplant. As the blasts get closer to 20% the concern for your MDS turning into AML is higher.

  September 1, 2021 at 8:49 am #54903
  Sue

  Participant

  Lee,
  When I was diagnosed with MDS, my hem/onc waited to have the pathology report in her hand before she would render her diagnosis. After reading the results, it was the pathologist who pretty much told her what I had and what the next step should be. Even that was iffy for me because he suggested watch and wait while I watched my blasts climb. I had my transplant August 06, 2020.

  I don’t know why computer vs biopsy would be so different but my last bmb result from pathology was 27 pages long so maybe your computer result was based off blood smears and not the actual marrow which takes longer to process. Also, it could be that the computer is only the preliminary result.

  So, even though you think the Hem/Oncs of the world would know a lot about MDS it seems a lot of them only know the basics. I’m glad you are seeing a specialist. That should help a lot.
  Keep us posted,
  Sue

  September 1, 2021 at 1:17 pm #54904
  Michael

  Participant

  Lee~

  In June of 2016 I was originally diagnosed with intermediate MDS 6% blasts. The BMB was done at a local hospital and it seemed the pathologist report was based on a computer model. Local hematologist recommended treatment with Vidaza but seemed uncertain relative to BMB report and suggested a 2nd opinion from a Center of Excellence.

  I was promptly scheduled for the 2nd BMB but in the interim received 3 doses of Vidaza. That treatment was truncated as my white blood count was too low.

  The 2nd opinion from a world renowned hematologist was low risk MDS 1% blasts. All treatment was stopped and I remain on watch and wait. I am monitored bimonthly locally and travel to the Center of Excellence twice per year. Each fall I receive a BMB and to date all have been consistent with 1% or less of blasts( thankfully).

  I have decided that all of my decisions regarding MDS will be guided by the recommendations from my hematologist at the Center of Excellence.

  I have never gotten a good explanation regarding the difference between the original BMB and the 5 subsequent BMBs at the Center of Excellence.

  Maybe your MDS specialist should have a repeat BMB instead of rehashing the original.

  Best wishes.

  September 1, 2021 at 8:02 pm #54905
  Kathleen Till

  Participant

  I was diagnosed with MDS high risk in April this year. Had Vidaza for four months then another biopsy which showed 5.8 blasts so not low enough to go ahead with my transplant in August. Strange thing is the hospital that did first biopsy said my blasts were 6-7 and the other day Moffitt told me they did their own analysis of the slides and I was at 10%.
  They put me on Vidaza 7 days again with Venclaxta for 14 days and when i got my biopsy results last week my blasts were at 0.5.
  Since then my platelets went from 34,000 to 505,000 which is now high.
  I go in on Saturday for my BMTransplant, could not risk being in remission and then it turning to AML because of my high risk. I am 73.
  Hoping all goes well. My daughter will be in my room for a month with me as they are now not allowing visitors and only a caregiver can stay. If she leaves she cannot come back in and neither can anyone else. We both have to have Covid tests tomorrow.

  Different hospitals have different ways of testing so different results which is crazy.

  Kathy

  September 1, 2021 at 8:39 pm #54906
  Sue

  Participant

  As scary as it all is it is great news! ❤️
  My transplant was done at Moffitt. You are in good hands. Vidaza and Venclexta worked wonders to knock those blasts down!
  When I went in to the hospital, they were already in covid lockdown, same like they are now. There was a recent lift of those rules, but I see they are back in place. Hubby stayed with me through the transplant; but could only stay for a total of 10 days. It was very difficult being alone but not much I could do about it.
  I’m wishing you all the best. Check in if you are up to it.
  Take good care,
  Sue
  PS – tell your daughter to ask for the blow up mattress topper. It will help. 😊

  September 1, 2021 at 11:56 pm #54907
  Kathleen Till

  Participant

  Sue,

  Thank you for the kind words and taking the time to get back to me.

  I will try and give you an update. I moved to Dunedin, Florida in 2018 from Danville CA and originally from the UK.

  Kathy

  September 2, 2021 at 12:25 am #54908
  Sue

  Participant

  Well kiddo,
  I’ve been through it so if you have any questions or just need a shoulder, let me know. Moffitt will take good care of you, ask for what you need. If you live in Dunedin will they let you go back home when released? I am north, in Ocala, so we had to find an apartment for 90 days. I was away from home for about 4 months with hubby and eventually, our furry daughter.
  I will be thinking of you and sending healing vibes. You got this!
  Sue

  September 2, 2021 at 12:32 am #54909
  Lee Smith

  Participant

  Thank you all so much for the replies. Still waiting on the final biopsy report and what the next step will be. My specialist is at a “Center of Excellence” for MDS, one of 4 “Centers of Excellence” in North Carolina where I am from. I have friends, and my wife agrees with them, who want me to get a second opinion from “The Cancer Centers of America”. The nearest one to me is 6 hours away in Atlanta. I have heard great things from people treated by them including a friend but it seems this cancer like all blood cancers the treatment is pretty much the same and I think I would prefer to be closer to home during those treatments.

  September 5, 2021 at 4:36 am #54920
  Amy Clark

  Participant

  Lee, my husband is 55 now and was a triathlete before MDS and another health issue sidelined him. We feel for you and all of the uncertainty you are facing. Husband was dx high risk 3 years ago and has been on oral decitabine (Inqovi) which is the other HMA like Vidaza. Happy to talk to you or your wife. Shoot an email to acclark0603@hotmail.com. At a minimum find out your actual blast count, your Hgb and why the doc. is not encouraging an oral HMA. You spend less time beholden to the clinic’s schedule if you are on the oral route, but maybe the doc has another reason. (I would be curious as you are young.) Many people have an adjustment period to the HMA drugs as it drops their counts more the first one or two times and you may end up needing extra care. Btw, I am also a nurse. Praying for you. Let us know if we can help.

  September 5, 2021 at 2:50 pm #54921
  Kathleen Till

  Participant

  Sue,

  How do I get to correspond with you privately. I do not mind putting my email on here, is that allowed?

  I came into Moffitt yesterday had my first 30 minute round of chemo last night. Okay at moment but know it will get worse – who knows we are all different.

  Two more nights of this chemo then this chemo again plus the stronger one.

  Let me know.

  Thanks for all your help for all of us.

  I am on the 4th floor W in Moffitt and all the doctors, nurses, techs and cleaners in here are wonderful.

  Kathy ❤️🙋‍♀️

  September 5, 2021 at 4:15 pm #54923
  Sue

  Participant

  Kathy!
  Thanks for checking in. I was thinking of you yesterday. I knew you were “moving in.”
  I must admit, I have not read the rules but if you were to post your email, I will get a message that you posted. I’ll check and when I email you, then you can always delete it.
  If we don’t connect for whatever reason, make sure you chew all the ice! I could not hold it in my mouth for long so I chewed it. I only ended up with a small amount of burning!
  Sue 🙏

  September 5, 2021 at 4:21 pm #54924
  Kathleen Till

  Participant

  Sue,

  Here is gmail and I will give you my other email later.

  gardenkt@gmail.com

  Thank you for taking the time to care. I would certainly do the same for anyone.

  Kathy

  ❤️🙋‍♀️

• Author
  Posts