Choosing no meds; only transfusions

[Mary Roth]

Has anyone else chosen do not try medication for MDS del 5q? I am wondering if just getting transfusions when needed will significantly lower my life expectancy as opposed to trying medications. I would like to not prolong my life. But I don’t want to suffer.

[Jimmy Greenhut]

Mary, may I ask how old you are? How many transfusions are you currently getting a month? How long have you had 5Q? You will increase your Ferritin “iron” which taxes your organs. What does the Dr think of your thoughts? I’ve tried all the drugs out there for RS-T. doing a trial now which is the last drug in the current pipeline. 4yrs I’ve had this. It gave me a PVC with the heart due to low HB. Now getting 4-6 pints a month. If I hadn’t or refused these drugs I might be 6ft under @62. Nasty fatigue etc… with this disease. It’s up to you. Best of Luck with your decision.

Jimmy

[Jack Allen]

Hi Mary,

I have tried most if not all of the drugs associated with red cell MDS.
Almost all of them had little if any side effects, but to be honest most didn’t do much for me.
The exceptions where Revlimid, which is in pill form and helped for about 18 months. The other was Vidaza. It was very painful and I wouldn’t wish it on anyone eventhough I endured it for over 2 years.
I have been transfusion dependent for 17 years now. Up to about 1.5 bags/ week now.
The higher you can maintain your counts the better. Use an Iron chelator to offset the Iron you get from transusions. A positive attitute and iron management and you can go a long time on transfusions.

[Mary Roth]

I appreciate your replies. I am 66. I took Revlimid 5 mg daily for three months and it wasn’t showing any help with my blood counts. The hematologinst wanted me to say on it for 2 more months. If it hadn’t helped by then, increase it to 10 mg or get into a clinical trial. But, suddenly, I got an itchy rash on my back. It may have been the pills, or, the Moderna shot I’d gotten. Who Knows?, but, I chose to stop the pills. I’ve had three transfusions. The last two were a month apart.

I am a retired nurse and have seen lots of suffering. I sort of think I’d rahter die and get it over with as opposed to trying all medications, experiencing side effects, and then dying later after I have more and more old age pains. I’m not trying to sound morbid or depressed. And, I think it probably takes more courage to refuse medications (only taking transfusions). I just wondered it anyone else shares this thinking?

Your input, Jack, about not many side effects and the painful Vidaza, and the amount of time you’ve been living on transfusions, was interesting.

That brings to mind one of my questions. Would “transfusions only” shorten the duration af the disease? That’s something I’ll plan to ask my hematologist. My goal is not tp prolong my life.

Anyway, I appreciate any responses!

[Katherine Quesada]

Hello I’m caretakerfor my mom. She refused oral chemo treatment. She is 82 years old and never had any serious health issues up until this. She probably had it a long time as shes started sleeping a lot and losing weight. In July of 2021 I took her kicking and complaining to get a physical and the rest is history. Started out with transfusions every 2 to 3 weeks in the beginning of like september and now bi-weekly. She gets weekly pro-crit shots. She has had two bouts with cellulitus infections and the last infection they could not figure where it came from. She been in the hospital twice for infections and once treated at home with antibiotics. She was officially diagnosed in January’s 2022 with MDS 5QMinus. I am scared to accept and continue to pray for an extension of her expiration date so to speak. I love my mom and it’s hard to watch her struggle and deteriorate. She has bone pain and we just try and keep her comfortable.

Today after being home from hospital two weeks it appears as though her infection is returning. She’s had low grade fevers since yesterday. It like she just needs to stay on antibiotics to stay healthy. I believe she’s getting closer to the end. Her blood cts were decent best they’ve been but yet she’s exhausted.

We got 3 opinions and all suggested same treatment. Even with chemo her life would be extended 2 or 3 months. I am so sad, thought she’d live into her 90’s at least. She was exposed to radiation in New Mexico growing up in the 40’s and 50’s there. She also used round up a lot and she kept it in her washroom? You know we try to find a reason for these things as if it will help soften the blow? Prayers to all of you. Prayers for miracle healing!

[Robin Smith]

Jack, just wanted to take a minute and thank you for your posts. Encouragement from any corner, including doctors, is so hard to come by with this diagnosis, but I always, always feel better and encouraged after reading your comments. Keep fighting Jack!.. you are a true inspiration. And again thank you.. so often we throw comments into the void and have no idea the positive impact we may have on others. I want you to know.

[Jack Allen]

I truly believe that the best medicine is a positive attitude.
I always think of something I really want to do tomorrow.

[Author]

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