COVID MDS

[Marge Begley]

Does anyone know if having MDS is considered Cancer which will put those of us who have it designated as receiving the vaccine earlier then the general population.

[Kathy Stermer]

MDS is blood cancer. You should discuss with your physician getting the vaccine

[Elaine Siddons]

My husband has MDS and his oncologist said he cannot have the vaccine. It will not work. He will not be able to create antibodies. I cried when I heard this on Christmas Eve.

[Kathy Brown]

My husband has high grade MDS and his Oncologist wanted him to have the COVID vaccine because the vaccine does NOT have a live virus agent in it. We are both over 65 and got our 1st does of the Moderna vaccine 1 1/2 weeks ago and have not had even a single effect from it. Our second dose of the vaccine is scheduled.

[Kris Radermacher]

I’m the caregiver for my husband who has MDS and is currently on a clinical trial of APR-246 and Aza. Our oncologist recommended getting the vaccine but our state is not prioritizing cancer patients. How do you get the state to approve the vaccine for someone 66 and on active cancer treatment? Recommendations are also for the immediate family caregivers to get the vaccine. Our state is vaccinating by health care, nursing homes, congregate living and then oldest to youngest regardless of risk factors. This is very frustrating.

[Kathy Lynch]

Today on the Webinar one of the leading researchers for MDS Dr. Raza stated that we should defiantly get the vaccine! Sadly many oncologists do not have the up to date information on MDS because it is on the rare side and is very complicated….it is almost impossible for 2 patients to have the same variables of MDS.

[stacey]

Kathy Brown,

You mentioned you and your husband (who has high grade MDS) got your first Moderna shot around mid-January. Can you let us know when you both got the second dose and what the side effects were from the second shot for you both?

Thanks & take care,
-Stacey (5q- MDS, diagnosed 2004, 5mg Revlimid daily)

[Bob]

The care team at an MDS Center of Excellence were actively helping my friend with MDS find a place to be vaccinated. All were relieved when she received her first Moderna dose a week ago. She experienced pain at the injection site and upper arm pain. The care team told my friend that their patients typically report a low-grade fever after the second dose and recommended Tylenol if needed. Everyone is different and you should check with your doctor.

[Jimmy Greenhut]

I got the vaccine. 2nd shot was more of a sore upper arm & swollen. That was my only side effect. On Revlimid & my #’s are low.esp WBC & Neut Ab.

[stacey]

Thank you Jimmy for sharing your personal experience, it is very much appreciated. It was especially helpful to know how you reacted to the 2nd dose because you are also on the same medication as I am.
Bob – fyi – I actually did talk to one of my MDS doctors about the vaccine about a month ago. I am unsure about getting it, but I wanted to know what she thought. She said I could get it if I want, and if I decide to get it, she wouldn’t expect the vaccine to necessarily have as high an effectivity as stated. My understanding is she meant it was because they probably didn’t use any volunteers with our immune disorders for the vaccine trials. She had not yet gotten a COVID vaccine herself, as it was not mandatory for her to do so, and she was undecided as to whether or not to get one as well. So she gave me her thoughts, while at the same time trying to balance not influencing my decision either way.

[Bob]

Stacey

Everyone makes their own decisions. Not everyone with MDS has a compromised immune system, often measured by the ANC. My del-5q friend does not have a compromised immune system. This article from the University of Chicago, which makes the point that some protection is better than none, may help. https://www.uchicagomedicine.org/forefront/coronavirus-disease-covid-19/immunocompromised-patients-covid-19-vaccines

[stacey]

Bob,
Thank you for the info about compromised immune systems and for the interesting article.
Best wishes,
-Stacey

[Kathy Brown]

Stacey, my husband and I had our 2nd dose of the Moderna vaccine on the 18th of Feb. My husband had more side effects with the 2nd dose of the vaccine(no side effects with the 1st dose). I was worried that he would have severe side effects but it wasn’t too bad. He had a headache for a few days, more fatigue than with his MDS, sore arm and a little nausea for a couple days.

[stacey]

Kathy,
Thank you so much for your response. I wish you & your husband the very best.
-Stacey

[Donna]

Hi Stacey,
My husband and I both had our second Moderna shots yesterday. He is 81 and does not have MDS. Absolutely no side effects. He went about his business as usual, said his arm is a little sore. I have MD…shot stung more than the first (no big deal). I got it at 12:30 yesterday and I was find until about 1:30 today when I started having chills. I had a low grade fever (99.3). I took Tylenol and was find until about 5:30 when I started having bigger chills. Temp was 101.6. Took Tylenol again and here I am on the computer. I’ll have to see what tomorrow brings. My arm is improving as the day goes on. I have no other symptoms except the fever. I don’t like it going to 101 because I don’t consider that low-grade. Oh well. Certainly beats getting COVID.
Donna

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