[Mary Roth]

Thanks for sharing, Lisa. I’m 5q, have had 5 Covids shots, and mask most of the time. I haven’t caught it, yet. It is scary to know that covid vaccines don’t prevent covid or long covid. Best wishes!

[Mary Roth]

My platelets are low and my skin looks like an over-ripe banana! Sometimes I know I’ve bumped against something and sometimes I never know what caused the bruises. I suspect straps from heavy purse even bruised my forearm and maybe resting my elbow on the table!! Sometimes petechia appear for no reason.

[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!

[Mary Roth]

Thanks, Jack, for writing all of that. It was very interesting to me to learn that other places allow transfusions at higher hemoglobin levels.

I have taken Revlimid for 11 weeks now with no helpful benefit noticed. My doctor said to take it two more months and then if it hasn’t helped increase to 10 mg. I’m just hoping it helps by then. I wonder if it took a long time to help anyone else, and sort of curious why he chose to started at 5 mg when the literature says start at 10 mg

[Mary Roth]

Thanks for your help!!

[Mary Roth]

I had my first transfusion in Feb. when hemoglobin was 8.1 (81 here in Canada, where I live). I was surprised that it didn’t improve my tiredness. I started on Revlimid 5mg after that, and my hemoglobin is still in the 7.7-8.9 range, so can’t get another transfusion. The internal medicine doctor hinted that hemoglobin isn’t necessarily what keeps me tired; “it is the disease.” (I was wishing I could get enough blood to get my hemoglobin up to normal. Now, I hope the Revlimid will help.}

[Mary Roth]

I am 66 and was diagnosed with del 5q a year ago and started on Revlimid 5mg, daily, 6 weeks ago. I live in Canada and was accepted for an assistance program that pays for it all. Otherwise, I wouldn’t have wanted to spend our life’s savings on me. I have mild rash on ankles and got betamethasone ointment for that. My skin is drier and I have flakey patches in eyebrows and hairline; I’m puting the ointment there, too. I have a new growth on face, and have plans to get things checked. Nausea was most noticible symptom, but, not too bad and seems to be a lot less, now. I had severe pain in one hip for a bit, X-ray showed nothing and it is better now. I can’t imagine what that was! My hemoglobin went down fast in January and I had one transfusion before starting Revlimid. I dislike being so tired! My white counts are so low and my hemoglobin is just above transfusion cut-off when tested at hospital. The internal medicine doctor said a transfusion may not help with the fatigue, anyway! I was disappointed to hear that! Anyway, I’m hoping that the Revlimid will start helping my numbers, soon.

Thanks everyone for writing! I appreciate reading this. I feel sorry that we’ve sort of gotten off topic from Luke’s question. I’m not that good with computers and can’t always figure out where to read or post!

[Mary Roth]

Stacey,I am so very much interested in the length of time you have been on Revlimid. I just started on 5mg for del 5q and amazed to hear how long it has helped you!!!

[Mary Roth]

I felt like I’d lost strength in movements like pulling open a zip lock bag and removing items that required twisting between thumb and forefinger. I went to PT and got helpful exercises. But, I agree with others: have your situation checked out!

[Mary Roth]

I don’t know how to edit after I post. But, I meant to say I was diagnosed in April 2021.

[Mary Roth]

I was diagnosed with MDS (bone marrow biopsy) in April 2020. Doctors had suspected it for awhile, but, I didn’t consent to be tested, at first. Anyway, I had Pfizer in Feb. and April, and it didn’t change my every 3 month blood draws. I got my booster in Oct. shortly after a blood draw, so don’t get next draw till Jan.

[Mary Roth]

Thanks for asking that question, Joe. I,too, have very low risk MDS and really appreciated all the replies that were posted!

[Mary Roth]

I have low risk MDS. I had my third Covid shot plus a flu shot on the same day. One and a half weeks later, I cought a cold from grandchildren. First day was sore throat. I ate homemade chicken noodle soup and raw onion sandwich. The second day I had sneezing and runny nose. The third day I was over it!!! I never got rid of a cold that fast in my life!! And, it wasn’t Covid, because I had a neg. test the day before symptoms started (when visiting a nursing home).

[Mary Roth]

Thanks everyone for your helpful replies!

[Mary Roth]

Interesting topic! I am female age 65 and have had hot flashes for 15 years. I thought they should be gone by now, but maybe they are now because of MDS!

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