Frequent blood and platelet transfusions

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• December 15, 2020 at 10:46 am #53808
  Angela Loavenbruck

  Participant

  My husband has had MDS for many years but in January,2020, his blood and platelet counts began to worsen significantly and his fatigue increased. He began injections of Aranesp in February, but several months of infusions did not improve his counts and they continued to worsen. In June, he began monthly injections of azacitidine, and after four months of not showing improvement, supplemented the injections with ventoclax for two months. No improvement was noted and his condition worsened so the drugs were stopped after 5 months. Now he is on palliative care and is completely dependent on weekly transfusions of 1 or 2 units of red blood cells and a platelet transfusions. It is clear that his bone marrow is not making cells. He sleeps much of the day and has little energy during the time he is awake. We wonder how long this kind of dependence on transfusions can last. It is almost two months now. Has anyone had experience with long term use of transfusions. We simply do not know what to expect.

  December 15, 2020 at 9:31 pm #53813
  Tom Barlows

  Participant

  Thank you for the information, sounds like he is in a fight, sorry.

  My treatment is using Dacogin get 4 days tranfusions, 4 weeks off.

  Also, include steroid for comfort.
  Test blood weekly if hemoglobin less then 10 get a redicrit injection.

  Seems to only stabilize counts, red, White and platelets still very low.
  Platelets seem to be the biggest problem recently. I have had a couple transfusions.

  I have had 18 mos treatments so far.

  Recently applied to city of hope in Duarte,CA for 2nd opinion.

  Good luck.

  December 15, 2020 at 11:26 pm #53814
  siouxsie17

  Participant

  Hi Angela – your husband and my father seem to be in similar stages right now as my dad has also arrived at the palliative stage. He too has had MDS for years and his largest issue to start was (and is) low platelets. He was in a clinical trial group about 1.5yrs ago which was rather effective affording him more time and decent quality of life. Currently he’s at home and visits the hospital every other day for platelets and/or rbc transfusions. Not easy but he is happy to be at home and sleep in his own bed. He’s logged many days (weeks) on the haematology floor this fall when he would spike a fever. Possibly due to infection from his pic line, or his chemo, or simply due to his recently confirmed progression to AML. He is also on 10 days on of venetoclax injections. And possibly decitabine but I can’t recall if that was stopped.
  Happy to chat with you sometime if you’d like. It’s a tough journey for sure. Wishing you the best. – Sue

  December 16, 2020 at 8:35 am #53815
  Pat Lawson

  Participant

  Hi Angela & Sue – My husband was diagnosed with High Risk MDS with excess blasts in October 2018. He started a clinical trial of Vidaza and Venetoclax November 2018. He responded well and stayed in the trial until January 2020 when he quit responding. After that he tried Decitibine but had no response and a biopsy showed his blasts back up to 13%. In May he started with Palliative Care and has been receiving blood and platelet transfusions weekly since. At that time the Palliative Care doctor had said she thought he would only survive 2 months before his body would start rejecting the transfusions. We are now at 7 months and he has iron overload from all of the transfusions. He spends most of his time in bed and recently has started developing inflammation. He is 66 years old and at this point we are taking it one day at a time. I am so grateful for every minute, hour and day that I have with him. I just don’t want him to suffer. It’s so hard being so isolated because of Covid. We do let the kids and grandkids come in to visit. When it was warmer I would get him outside when friends came over but it’s too cold now. I would be happy to get together by email if you are interested. God Bless you and your families and I pray for strength for all. Stay Safe!

  December 16, 2020 at 8:46 am #53816
  Angela Loavenbruck

  Participant

  Hello to both of you – my email address is eartoday@aol.com and I would be happy to connect. My husband will have his 79th birthday on Saturday – I am planning a drive by celebration in our little neighborhood here in very cold midcoast Maine and two of my three kids will travel to be here. The venetoclax made him so ill and neither of the meds (azacitadine and venetoclax) made a bit of difference. His platelets swing from 11 to 33 depending on how close he is to the weekly transfusions, and his red blood is between 7 and 8, again depending on where he is in the week between transfusions. He has periodic brief moments of real confusion where he has trouble responding and I wonder if there are some TIA’s happening. Most of the time, he is just needing sleep – too tired to even sit up in the living room watching TV. COVID has certainly made this far more difficult.

  January 29, 2021 at 4:23 am #53980
  Hope Ruiz

  Participant

  Hi everyone,
  My grandpa (89 turns 90 next month) has been suffering from MDS since 2019. He was on Dacogen for 1 year. Dacogen didn’t seem to help towards the last months. Now he gets monthly transfusions. Every month he seems to get worse. He gets weaker by the minute. The last couple of months all he wants to do is sleep. He’s only awake for a couple of hours. On Tuesday, we saw his hematologist and he told us that there is nothing we can do for him anymore. We have to options, get him into hospice or to continue transfusions as he needs them until the disease runs it’s course. All he said he may have days, weeks,
  Months because this disease is so unpredictable. I’m beginning to think that this is the last stage of this disease. I’m cherishing every moment I have with him and thank God everyday he wakes up.

  If any of you would like to connect, please email me. Eruiz_91@icloud.com

  May God gives us strength with this journey we’re all going through.

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