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I have no idea what to expect

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

Viewing 6 posts - 1 through 6 (of 6 total)
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    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?

    Kathy Stermer

    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

    Cliff Potenza

    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.


    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.

    Gerry Donnelly

    Thank God he has a son like you…..


    Thank you Gerry.

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