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Newly Diagnosed High Risk MDS

Home Demo forums Patient Message Board Newly Diagnosed High Risk MDS

Viewing 11 posts - 1 through 11 (of 11 total)
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  • #58847

    Greetings To ALL:

    The When IS NOW! So, dx’ed with Plasma Cell Myeloma Aug 2013 and had crainiotomy / radiological treatment / chemotherapy standard care of treatment. I am fortunate to reside in large metropolitian area with excellent medical facilities. While under medical monitoring/surveillance, the myeloma reemerged early 2017. Fortunately, my bone marrow biopsy showed my stem cells were suitable for autologous Stem Cell Transplant, which occurred April 2017. Been disease free until NOW! The caveat concerning ASCT was the Risk of developing Secondary Cancer

    Well , I have been dutiful in attending my medical appointments to ascertain When IS NOW! Early this year, my Hgb/Hct and Red Blood cell counts started to fall. Continuing checkups showed same decreases which led to further biochemical testing for the anemia; those results showed no biological explaination for anemia.

    Now, mid October 2022 had bone marrow biopsy performed and waited for up to 2 weeks for test results. Testing included peripheral blood smear, bone marrow smear, flow cytometric immunophenotyping, fluoroescence in situ hybridization ( FISH), cytogenetics study and most importantly – – Next Generation Sequencing for myeloid malignancies.

    So, ofcourse, my Hem/ONC provider informs me that using the IPSS-R system I score a High Risk 6. I have a complex karotype, TP53 variant (2 in fact), circulating blasts and Hgb of 8.1 g/dl.
    Well, this is why we undergo monitoring to catch disease in early stages.

    I have 2nd opinion appointments 1st and 2nd of December. One is nationally recognied BMT clinic and other is MDSF Center of Excellence partner. The treatment options all head in direction of HSCT; I am leary of using another ( matched) persons stem cells. I will state that I am a Medical Lab Scientist, so , I understand all the lab reports and diagnoses and treatment options and side effects.

    SO, a question to the membership in this Forum: Quality of Life is important for my everyday living. The treatment options all have serious side effects and making it to a successful HSCT and life afterwards may have its complications.
    Patients and Caregiver’s, what has been your experience?

    Mary Barto

    Iā€™m interested in this too. Glad you caught this early.


    UPDATE: 17Jan2023. I just completed 1st cycle of hypomethylating agent ( VIDAZA) and it is 4 days since Day 7 injection. I have exhibited slight nausea as an only side effect; prescribed nausea medicine easily handles this event. The only complaint I have has to be fatigue from the severe anemia that I previously mentioned. It frustrates me that I am limited in physical activity/mobility- attempted to walk dog and did not make 200 steps. I had to stop and lean against sign post to recover. Physician states hemoglobin/hematocrit will rise during the course of treatment. Sooner the Better.
    Anyway, We are adapting to this new normal; my wife ( caregiver) and I are soon departing to LV Nevada to continue enjoying our life. I will just be using a Scooter to enjoy our visit.

    Jean Ira

    My husband started Vidaza in June of 2022. He has been on a 5 day injection cycle followed by 3 weeks off; although because of holidays, he had only 3 treatments one month and 4 another. He was originally diagnosed in February 2020 at the intermediate level and was on watch and wait. Beginning Vidaza: RBC 3.43; HGB 8.4 and platelets 14. Last week showed RBC 4.2, HGB 14 and platelets 196. It was a gradual improvement until cycle 6 or 7 when numbers improved more. He is tired 2 days after the 5th injections, but has no other side effects. He has energy and strength to do what he wants. He’ll soon be 72.



    That is awesome.

    Best wishes.

    Robin Smith

    Jean, that is such good news!! And truly uplifting to read.. ty so much for sharing!

    Bexar, I’m thinking “adapting” is the key word for all of us here. Keep on keeping on enjoying life.. have a wonderful time in Vegas! Wishing you lots of good luck with all of it. Including Vegas šŸ™‚


    UPDATE: Well, the disease is making it difficult to Keep enjoying LIFE. The trip to Las Vegas fell thorough due to acute MDS related illness that required hospital admission. Testing found no medical illness, so, we attribute it to the MDS. I have had several of these instances since Oct 2022; most current was 15-18th Feb 2023.
    My Hem/Onc said my Hgb/Hct would increase. I have completed 2 cycles of treatment, as Jean posted- hopefully, a few more cycles will improve these numbers. FYI: I have been receiving blood when my Hgb drop below 7 g/dl.
    As far as Vidaza drug side effects- I have had ear congestion, fast heartbeat, fever, chills. They resolve themselves. So, it is just the disease doing its’ thing.
    Last, the current medical condition affecting my daily life is Hemorrhoids. My Hem/Onc said this condition is common ?? among cancer patients. I will just say it began after Vidaza treatment started.

    Kate Farrell

    Can understand that something as “benign” as hemorrhoids has a direct impact on QOL. Could it just be the result of some constipation from the Vidaza/Zofran? My husband has found he doesn’t need the Zofran but even without it, must pay a lot of attention to minimizing constipation during treatment days. The usual combos of colace, Senna, Miralax, etc Feel better!

    Amy S.

    Yes, Kate Farrell may be correct. I have been on Vidaza intravenously for a while and the doctor also gave Zofran as pre-medication to prevent nausea. I had constipation then. After he switched to subcutaneous injection without Zofran, I have no constipation. And injection is much faster than IV. In and out in 15 minutes.


    UPDATE: 14 March 2023.
    Yes to Kate / Amy concerning the constipation. The colo/rectal surgeon repaired a fissure on my sphincters’ muscle and now, the OTC laxatives’ with prune juice have resolved that issue. Hemorrhoid’s are still present, but adapting to them.
    Vidaza symptom’s have been fatigue, frequent urination and drowsiness during treatment cycle week. Much effort goes into staying hydrated with fluids.

    Quality of LIFE: my preliminary bloodwork prior to 3rd treatment cycle showed slight improvement in blood indices. Enough so that I arm twisted my wife and scheduled a solo Las Vegas trip next week. Oh Well – she was emphatic that she would not retrieve me if I take a turn for the worse on this trip.

    FYI: I read some recently released medical articles concerning new therapeutic drugs/trials in the pipeline for High Risk MDS/AML patients. Hopefully, they will garner FDA approval in the short term. Fact of the matter is High Risk MDS progresses to AML – This Happens When It Happens.


    UPDATE: 03April 2023.I had an uneventful trip to Las Vegas; yes, in my mind, returning with half my bankroll is uneventful. It was an enjoyable 3 day trip.
    So, started 5 day Vidaza treatment today and the preliminary blood work showed excellent improvement in my CBC blood indices. Hgb&Hct, Rbc’s Wbc’s and platelets are back to normal levels. The physician and I are very pleased and decided to stay the course with Vidaza.
    Quality of Life: much improved this past few weeks. More energy and no side effect symptoms.
    Most Important to Remember – Hem/Onc physician and I discussed option of continuing on to Allogenic Stem Cell Transplant. This may occur when you, the patient are stable and disease has not progressed to AML. MDS will eventually progress to AML.
    One must reflect on whether to precede to ASCT; the study’s on Overall Survival rate after ASCT are not confidence boosting.
    ANyway, wife and I have scheduled trips next 2 months and will enjoy our life. She retired from work this past Friday.

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