Restarting Vidaza with PICC Line

[Owen Maguire]

Diagnosed MDS 2012. Watch and Wait until 2015. Put on self inject Eprex (E Potine Alfa) to keep Hemoglobin up in 2015. Finally Vidaza in 2017. 2 needles in stomach for 7 Days; 21 days off and repeat. Was doing pretty well, Only 1 blood transfusion and that was low iron. Put on iron pills and Hemoglobin rose, not to anywhere normal level but blood transfusion not needed. In Aug 2023 stomach needle marks not healing and went to Inqovi. For over a year tried various doses but could not get on trac and had 2 blood transfusions. Am having a PICC inserted tomorrow and Onc/Hem is increasing level of Vidaza. Had known about Port but not about PICC. Have been reading up and am hoping for best. I have A Fib and had a Heart Tavi (Aortic Valve) replacement 2 years ago and see Heart Specialist yearly who says heart in good shape. Friends say I don’t look anywhere my age (85) and my main symptom is I am tired all the time . Before going on inqovi I could slowly walk 3 km’s. Would appreciate any comments on use of PICC. I have been on Amazon and purchased a waterproof sleeve which is used for showers with PICC and also 2 monogrammed PICC coverings. I get my treatments at the Cancer/Chemo Centre in High River Hospital, Alberta, Canada which is a subsidiary of the Tom Baker Cancer Hospital in Calgary and the Nurses in particular are like extended family. ,My wife who was an Operating Room Nurse for over 30 years as we had over 12 transfers across Canada for my job, has Alzheimers Disease and is in care and does not know who I am, was my medical expert so I am looking for a users perspective on the PICC Line.

[Heinz]

Hi Owen,
I’m sorry I can’t comment on the use of PICC.
In the meantime, have you started a new Vidaza therapy with increased dosage?
How are you doing with that? What level has Vidaza been increased to and how are the blood levels responding? I am very interested in your development. As I have already described here in the forum, I had to look for an alternative after 25 cycles of Vidaza when the effect waned. I’ll keep my fingers crossed that your return to Vidaza is successful. If you are not satisfied, I will be happy to share my experience with you. All the best.
Heinz

[Beatrice Newcomb]

I had a PICC in 2018 for over a year with absolutely no problems. I have one now (since April) with no problems. So much better than having sticks. I have moderate/high MDS and have HLA matched platelets weekly and sometimes unmatched too. Blood transfusions are down from 2X a week to about once every two weeks. Have taken 5 rounds of Inqovi with plummeting numbers in WBC, RBC, hmg , Hmk and platelets. Damned If I take Inqovi and damned if I don’t.

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