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Viewing 15 posts - 1 through 15 (of 22 total)
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  • in reply to: Life After Decitabine/Vidaza/Inqovi? #59293
    Heinz
    Participant

    Hi Amy,
    you want to know what life is like after stopping HMA therapy. I have AML and was on Vidaza for 26 months. 4 months of that with VEN in addition. After a few months the effect of the therapy diminished and a steady decline in all blood counts began. After 26 months the therapy was stopped in the hope that the body’s own hematopoiesis would recover without the myelosuppression of the drugs. Unfortunately, this effect did not occur, but the negative trend continued. Within one year I received 10 EC and 4 T-transfusions. So much for the answer to your question.
    In September of last year, I received a new therapy for 50 days, from which I still benefit today. However, the therapy only promises success if the karyotype is normal (not complex). If this is also the case for your husband, I will gladly give more details.
    Until then, I wish you and your husband all the best.
    Heinz

    in reply to: Starting my 62nd Cycle of Vidaza #57149
    Heinz
    Participant

    Hi Owen and Amy,
    wish you a happy new year 2022.
    I wanted to report on my current treatments.
    I have been taking 400mg of venetoclax daily since 12/10.
    I received my second EC transfusion on 12/22.
    In week 52 I received the 23rd Vidaza cycle.
    At the start of the injections I had the following blood values:
    WBC: 1.8, RBC: 2.9, Hgb: 10.1, PLT: 41, NEUT#: 0.7.
    Despite the Hgb value of 10.1, which was high for me, after the 4th day of treatment I was very weak, suffered from mild nausea and was unsteady on my feet.
    I don’t even like to imagine how weak I would have felt without the EC transfusion.
    I am still taking the 400mg Venetoclax every day but I expect that the dose will be either reduced or suspended if the blood results are too bad at the control on January 10.
    What do you think Amy?

    in reply to: Starting my 62nd Cycle of Vidaza #57112
    Heinz
    Participant

    Hi Owen and Amy,
    Just to avoid any misunderstandings, I really hope you don’t take my comments as know-it-all meddling. I read with great interest your experiences with the common disease and am interested in the somewhat different treatment methods. However, I am in no way interested in assessments.
    In this sense I hope for further interesting exchange.
    I wish you a happy and healthy Christmas.

    in reply to: Starting my 62nd Cycle of Vidaza #57042
    Heinz
    Participant

    Hi Owen and Amy,
    I would like to have your concern about the supposedly too high HGB value.
    Just to make sure we are talking about the same thing, you mean by “Hem” the hemoglobin value, which should be in the reference range of 13.5-17.5 g/dL in a healthy person?
    Does your current value Hem=115 actually correspond to 11.5 g/dl?
    Just for comparison, my current values are:
    HGB=7.2 g/dL, WBC= 1.3 x10³/µL, PLT=51 x10³/µL

    I will be receiving only my second EC (erythrocyte concentrate) transfusion tomorrow and I find it interesting that you are injecting yourself with Epo. The goal is probably the same in both cases but what are the advantages and disadvantages of the two procedures?

    Regarding my aza/ven therapy:
    because the platelets recovered from 22 to 51, I today increased the venetoclax dose from 200mg to the intended maximum level of 400mg.
    Then next week I will start my 23rd cycle of Vidaza.
    Getting back to Amy’s question, because of the bone marrow toxicity noted on the BMB, the number of injection days was reduced to 4 days and the break between cycles was increased from 3 weeks to 4 weeks
    and I am very relieved about that.

    in reply to: Starting my 62nd Cycle of Vidaza #56962
    Heinz
    Participant

    Hi Owen,
    I’m sorry if I’m giving unsolicited advice. You are obviously well advised. Maybe I am too critical when I question advice also for the possible economic impact. But enough of that.
    Monday is my next blood test and definitely I will need another EC transfusion because I am barely resilient at the moment.
    The following week I will start my 23rd cycle and I am skeptical about the development of my blood values. However, between my 23rd and 24th cycle the positive effect of VEN should start.
    If not, I will then probably fall into the unfavorable group explained in the article of my link to r/r AML and venetoclax.
    I will report back.
    Best regards
    Heinz

    in reply to: Starting my 62nd Cycle of Vidaza #56958
    Heinz
    Participant

    Hi Owen,
    my respect that despite your own illness you are still able to contribute to the Christmas decoration of the residence of your sick wife.
    Regarding the bruises on your stomach, I wanted to briefly share my experience. I massage my puncture sites twice a day with “evening primrose oil”. After about a week the red “pistils” have disappeared but the massage continues. More precisely, my wife massages.
    Are you aware of the oral Aza CC-486 Onureg? Maybe that would be an alternative to the subcultaneous injection for you?
    I am also familiar with the night sweats. It comes and goes without me knowing why. On the other hand, I often have cold feet, so I often wear two pairs of stockings during the day and one pair at night. But these are not our real problems, are they?
    Wish you all the best.
    Heinz

    Translated with http://www.DeepL.com/Translator (free version)

    in reply to: Starting my 62nd Cycle of Vidaza #56906
    Heinz
    Participant

    Hi Amy,
    thank you for your sympathy and interest. I would have preferred to share the link as a pm but then just so with the warning to r/r-AML patients if they really want to read the article:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7655603/

    in reply to: Starting my 62nd Cycle of Vidaza #56901
    Heinz
    Participant

    Hi Owen,
    just read a very interesting article about the reasons for the very different efficacy of ven/aza therapy in de novo and r/r AML patients.
    If you are interested in the topic, I would be happy to send you the link, preferably as a private mail.
    I am now on a venetoclax dosage of 200mg (at 400mg max) with no improvement in blood counts.

    in reply to: Starting my 62nd Cycle of Vidaza #56823
    Heinz
    Participant

    Hi Owen,
    How differently our hematologists/oncologists and we decided regarding our therapies.
    You have been on Vidaza for over five years now, although your MDS risk is still currently assessed as low/intermediate.
    I had suspected MDS since 2001 and MDS/RCMD since 2010 , IPSS score 0.5, int-1 but remained on watch and wait until late 2019 when I was diagnosed with transition to secondary AML with up to 25% blasts.
    Since then I was on Vidaza and for about 8 months my blood counts improved, then it steadily wore off.
    Now, for the 22nd cycle Vidaza has been combined with Venetoclax, slowly increasing VEN from 50mg to 400mg in a weekly rhythm to reduce the risk of TLS syndrome.
    I feel fine so far and will be happy to report back to you how the therapy is progressing.
    All the best for you.
    Heinz

    in reply to: Starting my 62nd Cycle of Vidaza #56736
    Heinz
    Participant

    Hi Owen,
    I received an RBC concentrate infusion in the meantime and it immediately reduced my shortness of breath.
    Next Monday I will start the Vidaza-Venetoclax combination therapy if my blood values are not too bad. Am already very curious to see if they have deteriorated further.
    From the Aza-VEN therapy I hope that it works at all, that the side effects remain manageable and that it remains effective for a long time. The main concern is how it will affect the already poor platelets and neutrophils. We will see and I will report back.
    Best regards
    Heinz

    • This reply was modified 1 year, 10 months ago by Heinz.
    in reply to: Starting my 62nd Cycle of Vidaza #56400
    Heinz
    Participant

    Hi Owen,
    Your interest in the latest AML therapies is admirable.
    In fact, there are some therapy approaches that give some hope. The CAR-T cell therapy is certainly one of them, but the adaptation to AML still causes some difficulties, the long term effect will hopefully be increased and the costs can hopefully be reduced.
    There are also promising developments in targeted therapies for some gene mutations.
    What about you, have mutations been detected in your case? In my case, only one DDX41 mutation was detected, but none that could be targeted.
    So let’s continue to hope.
    Heinz

    in reply to: Starting my 62nd Cycle of Vidaza #55905
    Heinz
    Participant

    Hi Owen,
    thank you for the link. At the moment I am psychologically stable and I hope it stays that way. If it changes, I will gladly make use of your recommendation.
    You surely know the PubMed portal https://pubmed.ncbi.nlm.nih.gov/
    For me it is a valuable source of information for all AML related questions.
    Take care.
    Heinz

    in reply to: Starting my 62nd Cycle of Vidaza #55842
    Heinz
    Participant

    Hi Owen,
    yesterday’s control measurement after the 21st Vidaza cycle showed miserable values with Hb=7.0 and
    platelets=25 x10³.
    As a consequence, a blood transfusion is now due for the first time and the therapy will be changed from Vidaza-Mono to Vidaza-Combi with Venetoclax.
    The bad Hb value was no longer a surprise, because I have become noticeably more short of breath and felt very weak directly after the 21st therapy.
    So now a new stage begins and it will probably be uncomfortable, to put it kindly.
    Please keep your fingers crossed.
    Heinz

    in reply to: Starting my 62nd Cycle of Vidaza #55836
    Heinz
    Participant

    Hi Owen,
    what do you think about dose reduction?
    After my last bone marrow puncture, the poor blood counts were attributed to toxic bone marrow damage, the Vidaza injections were reduced to 4 days after previously increasing the therapy break from 21 days to 28 days. Since there has been no visible recovery of the blood values to date, I am thinking about approaching the hematologist for a further reduction to 3 days of injections.
    Since the European Medicines Agency (EMA) stipulates a dose reduction to 1/3 in case of worsening blood values, this should be ok. What do you think?

    in reply to: Starting my 62nd Cycle of Vidaza #55724
    Heinz
    Participant

    Happy birthday to you, Maguire, wishing you all the best.
    I am very much impressed about the 62 Vidaza cycles. That is quite encourraging to me, I am at 21 cycles right now and my platlets are already down to arround 60 to begin of therapy and arround 20 15 days later.
    I am quite worried abaout that and wonder if and how there is a way to slow this downturn down. Do you have an advice?

Viewing 15 posts - 1 through 15 (of 22 total)

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