MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Did anyone get better after diagnosis?

Home forums Patient Message Board Did anyone get better after diagnosis?

Viewing 15 posts - 1 through 15 (of 20 total)
  • Author
    Posts
  • #44720
    Diane Lafontaine
    Participant

    Diagnosed Aug 2017. Received 5 blood transfusions. Last transfusion was Sept 13, 2017. Since then all blood work got better. Almost everything is back in to the normal range. Did this happen to anyone else?

    #44724
    Allan Romriell
    Participant

    Diane,
    I was diagnosed June 2017 with MDS_RARS. Platelets 75, hemoglobin 11 white count slightly low. Have had blood work done every 3 months with counts fairly stable but bouncing around a bit. In 2018 my counts were on a slight downhill slide all year with hemoglobin at 11.1, white count slightly low, platelets between 130 and 137. In October all counts were up, hemoglobin 12, white count in the mid 6’s red cells 3.91 and platelets 157. This was the best overall counts I have had since this all started. Also my bilirubin had been creeping up to high range and it dropped back to normal range. It will be interesting to see if this holds at my next appt in Feb. So, I can’t say I am getting better but in October at least I was better than I had been since diagnosis. Wishing you and all other the best, be nice if we could all just get better and stay that way.

    #44726
    Diane Lafontaine
    Participant

    Thank you Meredith and Allan for replying. I was diagnosed at MDS int-2 so I was high risk. They recommended Vidaza. I refused that treatment. I opted for no treatments except blood transfusion if/when needed. Now i have been downgraded to low risk. Hemoglobin is at 14, platelets 181, WBC 3.2 and RBC 3.99. Numbers are almost back to normal. Has anyone with MDS ever gone back to normal range blood work without a stem cell transplant? Just wondering if I was misdiagnosed.

    #44753
    Donna Clabaugh
    Participant

    Diane, is it possible to seek a second opinion?

    #44754
    Diane Lafontaine
    Participant

    I had 8 bone marrow biopsies done by 3 different specialist. Only one gave the possible MDS diagnosis. Since I have been getting better I will be requesting another biopsy in the new year.

    #44803
    Muriel Miller
    Participant

    I wonder if you had some sort of toxin in your system that cleared up with blood transfusion. It is very interesting indeed and I wish you the very best in the new year.

    #44805
    Janice Sheppard
    Participant

    My BMB states reactive process and not MDS (doesn’t meet WHO diagnostic criteria). last neutrophil count was 0.43. I would love it if the offending agent could be eliminated and recover, but they have no idea what is causing this. I’m going to Dana Farber next month for a second opinion.

    #49211
    Gareth Hare
    Participant

    Hi Diane. How are you doing?. I was diagnosed with low risk MDS 6 years ago and bloods have been relatively stable. Have tried lots of natural treatments to effect change and recently started some CBD oil. I saw your post/reply about this. Doesnt seem to be much discussion about this but sounds useful in effecting epigenetic change. After 3-4 weeks at just 1ml per day I saw a small but significant increase in all bloods so have doubled the dose. Im in New Zealand

    #49215
    Diane Lafontaine
    Participant

    I’m in Canada. I truly believe that CBD oil has brought all my numbers back to the normal range. I saw an increase almost immediately. I went from needing a blood transfusion every 4 weeks to none since Sept 6th 2017. I started the CBD oil on Sept. 13th. The hematologist has said that I am “in remission”. I did not take any chemo. Best of luck

    #49226
    Gareth Hare
    Participant

    Thanks for that Diane. Thats good to hear!! Fantastic. Maybe more people should be looking at CBD as an effective treatment. If MDS is a result of epigenetics then it means that the changes can be reversed, and its then a matter of finding treatments that work for people. So good that this has worked for you. How long did you take CBD for….just until your numbers normalised or are you still taking it?

    #49228
    Diane Lafontaine
    Participant

    Gareth, I am still taking it at this time. I might lower the dose later when all my numbers are in the normal range.

    #49293
    Kathy Lynch
    Participant

    Hi, How much and what level of CBD oil are you all using? I was diagnosed May of last year… I have been on Aranesp every other week for 2 months…4 injections… Blood tests every week… My hemoglobin has just gone back to 10. my RBC has slowly gone up to 2.72 but my WBC is staying low 2.9… just tired and achy…
    totally willing to try CBD oil!!!

    #49294
    Gareth Hare
    Participant

    I am using the highest strength available here on prescription ….Tilray 100 (100 mg/ml) Built up quickly to 1 ml per day for a month…then have doubled the dose to 2 x 1ml per day currently. Looking forward to seeing some further improvement in blood test in 2 weeks. What country are you in Kathy? Im guessing East Coast or Canada?

    #49295
    Diane Lafontaine
    Participant

    I started at 1 mg a day and now up to 25 mg a day. I will stay at this level for now. I may lower the dose in a few months and see if that makes a deference on the numbers.

    #49399
    mk thompson
    Participant

    Have been on aransep for 4 years. CBC is done every 3 to 4 weeks, depending on doctor seen at the time. HGB hangs at 9 -10. Tired and achy all the time even with the aransep. What else is out there? Am not enthused with this doc as she says, “every thing looks okay.” I go to a military hospital for this civilian doc, and she only comes to clinic sporadically as the military is short of doctors and congress will not fund more care for military…Cutting back 18,000 medical personnel this year!! Tricare has a cap on “cancer” care which this is tagged under. Suggestions???

Viewing 15 posts - 1 through 15 (of 20 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert