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.

I have no idea what to expect

Home forums Patient Message Board I have no idea what to expect

Viewing 8 posts - 1 through 8 (of 8 total)
  • Author
    Posts
  • #51343
    mlou
    Participant

    My dad was diagnosed with high risk MDS December 2019 with 5q and 7q deletions and 12% blasts. Dr said he may have 12-16 months. His HGB stays at 7.5 or lower, PLT at 12 or lower, WBC less than 1. He gets blood and platelets at least once a week sometimes twice a week. Tried Vidaza & couldn’t tolerate it. Now on Daurismo & Cytaribine injections. Just finishing 4th round of injections. Doesn’t look like it’s doing anything. He’s 75, diabetic & has fatty liver disease. Between his age, other ailments & not being able to tolerate Vidaza he is not a candidate for transplant. Oncologist mentioned maybe stopping the Daurismo & Cytaribine for a couple weeks to allow his system to reset. He has GI bleeding which comes & goes. Usually bleeding more often than not. He does not want to go into a facility & can’t make it up the steps to my home. I am his sole caregiver & go to his house multiple times a day to cook & make sure he’s taking all his meds. I just don’t know what to expect. Dr said these patients usually get an infection that they can’t fight. He’s had a few staph infections but I have been able to get him into the hospital for IV antibiotics quickly and that has worked. He is now taking antibiotics & an antiviral daily. He doesn’t really have any energy so he just sits in front of the tv all day. The only time he leaves the house is for dr appts. I’m afraid to take him anywhere else with these whole covid thing. Is this it for the rest of his life? He just exists?

    #51361
    Kathy Stermer
    Participant

    I am 62, diagnosed 2 yrs ago and after failing 2 treatments am now progressing to AML. As a retired nurse who knows the risks of transplant have declined and am doing supportive care. Have been followed by palliative care since diagnosis which has helped me and my family, am now at a point of enjoying my friends and family as my only priority, getting blood products when feeling the need. I have hospice all set up when I reach the point where I don’t want to continue even transfusions, my affairs are in order and I’m at peace that I’m ready to journey into the final stage. This disease sucks and there’s no stopping it so I have decided long ago to take control of how I want things to go from here on. I’m truly at peace with things as is and accepting and prepared for what’s to come. Ongoing discussions with my family making my wishes clear has brought me to the peaceful place. Hopefully you’ll find a good place also

    #51365
    Cliff Potenza
    Participant

    Cathy,
    Keep the faith. I am a 73 y/o male who was diagnosed with MDS in Oct. 2016. I started on Vidaza in Feb. 2017 … I do not have any underlying other health problems so I tolerated it well. It’s use eventually wore out about 6 months ago and Venetoclax was added but after 2 cycles it did not seem to do anything. My drug counts have been very low, WBC .1 – .4, Hgb 6 – 9, platelets 0-8. I stopped the venetaclax and started on Dauismo and cytarabine. My blasts have gone from 5% to 12% to 20% (AML) back down to 11% after the Venetaclax round 1 but back up to 19% after the second round which is why I was put on Cytarabine and Daurismo. I also have had unexplained fevers which usually they can’t specifically fine a reason for it but it has hospitalized me 3 times in the last 4 months. I need platelets a couple of times a weeks and blood transfusions every couple of weeks. On non-infusion days I feel good and normal. I am hoping to be able to get a BMT but I won’t know until after my next BMB.

    I don’t know who is treating your Dad but I found my local oncologist to be capable but I knew I needed specialists. I went to two “Centers of Excellence” specializing in Blood Disorders…The Moffitt Cancer center in Tampa and Sloane Kettering in NY. They both have been incredibly helpful suggesting treatments, new drugs, clinical trials etc. If you are not using specialist at “Centers of Excellence” I would certainly recommend that you find one.

    If it’s any consolation when I was first diagnosed in Oct 2016 my oncologist said 9-12 months… I’m still here almost 4 years later.

    My dad was diagnosed with high risk MDS December 2019 with 5q and 7q deletions and 12% blasts. Dr said he may have 12-16 months. His HGB stays at 7.5 or lower, PLT at 12 or lower, WBC less than 1. He gets blood and platelets at least once a week sometimes twice a week.

    #51405
    mlou
    Participant

    Update on dad, yesterday we were told he has end stage liver disease. He has been passing alot of blood with his bowel movements. Gastro dr wants to try to do a scope to band varices to try to control the bleeding. His platelets were down to 2 and HGB 6. Wants to put him on a blood pressure med that will ease the pressure coming from the liver but his BP is low at 90/42. When it rains it pours.

    #52177
    Gerry Donnelly
    Participant

    Thank God he has a son like you…..

    #52179
    mlou
    Participant

    Thank you Gerry.

    #53010
    mlou
    Participant

    update on dad. We’re at the end of our journey. Dad had a 3 week break from treatments in August & didn’t feel too bad. He was more like himself. He did 2 rounds of vidaza & venclexta. Ended up in the hospital last week with a strep infection in his blood & a sinus infection. Treatment is not working. He’s completely dependent on blood & platelet transfusions. His system is eating up the platelets faster than they can put them in. Drs all said it was time for hospice. Dad agreed he didn’t want to continue daily transfusions if they weren’t helping him feel a little better any more. He was moved from the hospital to hospice on Monday. He deteriorates a little more each day. I am very sad that we are losing him but I will be happy for him that this is over and he can be with mom once again.

    #53155
    Kathy Lynch
    Participant

    Thinking of you and your family with prayers

Viewing 8 posts - 1 through 8 (of 8 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