[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.

[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)

[stacey]

Kathy,

A few days after you and your husband get the 2nd Moderna vaccine shot, can you then post what your side effects were from that second dose? Just like Kevin, I’m very interested in hearing about it too.

Thanks & best wishes,
-Stacey

[stacey]

Hi Tom,
I take the 5 mg Revlimid capsule daily with no days off. The original dose in 2004 was 10 mg, but they lowered that the same year once my counts improved, and I’ve been on that same dose ever since.
-Stacey

[stacey]

Hi,
I was diagnosed with MDS (5q- subtype) at age 34 in 2004 and am now 50.
One of the first things they did with my initial abnormal CBC was make sure it wasn’t a B12 issue. Did they check your wife’s B12 level? I assume they did, but you didn’t mention it, so I wanted to be sure.
For me, they knew it wasn’t an iron issue, so I was given a Bone Marrow Biopsy. They then tested my only brother very early on to see if he was a potential match, even before I considered whether or not to do a bone marrow transplant. They didn’t waste any time discussing options right away such as trying a clinical trial drug at the time (Revlimid, the option I chose, and still take today, because it works best for my subtype), OR a bone marrow transplant. The doctor mentioned in that conversation that if I decided on a transplant, I would need to freeze my eggs in order to have children. It was a lot to take in at a young age, and I’d imagine that’s how your wife feels. I never was sure how I even got the bone marrow disorder in the first place.
In the 16 years since diagnosis, they periodically do a comprehensive metabolic panel lab, and I’ve never had a single kidney issue and always have a normal creatnine and eGFR level. I can’t speak for certain as to whether others with MDS have had kidney issues, so I hope they respond to you in this forum if they have. What the cardiac physician mentioned about the multiple heart caths leading to the kidney issues could very well be the cause.
I’ve only had 1 or 2 Procrit shots, in the year I was first diagnosed and before my Revlimid medicine started working. They may have just switched to Retacrit due to things like shipping issues or cost. Unless Retacrit has less potential heart side effects…? I never received a Retacrit shot, so I don’t actually know anything about it. You might want to ask the next time they give her one so you know.
Please tell your wife I am thinking of her and send her my very best wishes.
Take care,
-Stacey

[stacey]

Very happy for the 3 of you who are symptom free and are doing so well! That’s terrific news!
Take care,
-Stacey

[stacey]

Marc,

I meant to also pass along to you the name of my local hematologist/oncologist as well for your mom:
Dr Christine Szarka with locations in Collegeville, PA and Paoli, PA.
She spends a lot of time with her patients, is a terrific listener and is very kind.
I think you and your mom would like her, and she could manage your mom’s care and is great at following up on bloodwork results as well.
There is a preview of Dr. Szarka on youTube that you can watch.
Best wishes to both of you. Take care,
-Stacey

[stacey]

Marc,
In the very beginning, my CBC flagged low hemoglobin, low RBC and high MCV count (MCV>100) which lead to a diagnosis of anemia. In trying to find the source, they first questioned if it could have been a B12 problem (I was only 34 then and it was more likely than MDS), so they gave me a B12 shot (in place of testing and waiting for results); they said it would be faster. It didn’t help. Then I was given a bone marrow biopsy by my local oncologist and referred to Dr. Luger for discussion of the results. This gave them more detail about the look of the cells (for example, they were large and abnormal in appearance) and also the knowledge that it was specifically caused by a defective loss in the arm of part of my 5th chromosome. The advantage to knowing that was that the doctor could zero in and recommend my treatment with a daily capsule called Revlimid which has great benefits in patients who have the specific 5q- subtype of MDS. I am still on this drug today and it allows me to live transfusion free.
In other words, the doctors will confirm your mom has MDS and identify which subtype she has and be able to make better recommendations for a treatment plan that works for that subtype based on what they see from the BMB (bone marrow biopsy).

Because I had a BMB, and I assume they could get all the additional information they needed about my RBCs from that, I never heard mention of a reticulocyte count. It can be additional information to zero in on the diagnosis. Perhaps the doctors figured out this information from the bloodwork she already had somehow, or maybe they didn’t feel they needed it. I was trying to figure out how they were so definitive it was MDS with bloodwork and no BMB.
-Stacey

[stacey]

Marc,
Where in PA are you and your mom? I highly recommend Dr. Selina Luger — she has extensive knowledge about the disease & treatments and is the doctor that was first recommended to me from another local oncologist after a possible MDS diagnosis. She is affiliated with the University of Pennsylvania in Philadelphia.
Secondly, most patients do get a bone marrow biopsy & aspiration (takes small piece of tissue and fluid to look at under a microscope) to confirm the MDS diagnosis, but perhaps they didn’t because of your mom’s age. Do you know:
1) did they rule out a low B12?
2) Also, did they look at the reticulyte count for your mom in any follow up bloodwork?
-Stacey (5q- MDS since 2004, age 50)

[stacey]

Jimmy,

I’ve been on Revlimid for 16 years (when it was not yet FDA approved), and continue to take it.
I initally started at 10 mg in 2004, but it was lowered to 5 mg after about 6-8 weeks when my blood cell counts improved, and the dose has stayed at 5 mg ever since. I take the dosage every day with no days off.

When first taking revlimid: Very itchy scalp (assuming due to old cell turnover), few very small patches of dry skin on arms and legs and dry skin on face, fatigue, constipation & stomach pain, Lower White Blood Cell count & neutrophil count (those continue to be at least slightly suppressed even after hemoglobin count improves), lower red blood cell count (until hemoglobin count improves), possible skin sensitivity to sunlight.

Now: Same symptoms as above but ALSO occasional leg cramps at night, diarrhea alternating with constipation

I am lucky that it has worked very well for me and allows me to no longer need blood transfusions.
Hopefully your doctor watches your counts very closely with frequent CBC bloodwork, because the counts tend to go down for the first 6-8 weeks before they start to go up. I know I needed RBC transfusions until the Revlimid kicked in.
I also try to drink extra water when I remember (I think Revlimid might be dehydrating) and eat oatmeal on occasion to add extra fiber into my diet. I also keep Senokot in my house and take as needed to help with the bowel issues that I find I get from the medicine.
Very best of luck,
-Stacey

[stacey]

Also meant to ask you if your husband was put on any new heart related medicines (such as blood pressure or cholesterol medication) which could be causing the tiredness.
-Stacey

[stacey]

Hi Janet,

If you haven’t yet, ask the cardiologist if any damage occurred to his heart as a result of the heart attack or if it was a very mild heart attack with no significant damage that would cause the exhaustion. Also, I would have thought a technician would have done an echocardiogram of his heart at the hospital before he left, so the cardiologist should be able to give you some details of those findings at that appointment. If his hemoglobin is still holding at normal, I wonder if he is just exhausted specifically from the stress of the heart attack.
My father, only brother and mother have all had heart attacks, so I hope you get some answers. Best wishes to you & your husband.
-Stacey

[stacey]

From the cancer.org website:
“Myelodysplastic syndromes (MDS) are conditions that can occur when the blood-forming cells in the bone marrow become abnormal. This leads to low numbers of one or more types of blood cells. MDS is considered a type of cancer.”
For example, my red blood cells are primarily affected by MDS. My hematology doctor once told me to think of my MDS red blood cells as “large and funny looking”, a description that stuck with me. You can see that in numbers on a CBC (Complete Blood Count) when the red blood cell line is affected. The MCV (Mean Corpuscular Volume, which is the size of the red blood cell) will keep increasing past normal to show the red blood cells growing abnormally bigger and bigger, leading to lower hemoglobin and less oxygen throughout the body. I believe the abnormal growth traits of these blood cells are why they refer to it as a blood cancer.
-Stacey

[stacey]

Pam,
If you type “familial MDS” in the search box on this webpage (no quotes needed), you will see a few past postings of people questioning the hereditary aspect and giving their examples about a possible inheritance in their family chain. Because of the very small numbers of occurrences, I personally don’t completely understand how experts can definitively rule out the difference between inherited MDS solely from the family gene as opposed to getting MDS from exposure to the same environmental toxin or other cause.
I was diagnosed in 2004 at age 34 with 5q- MDS. No one in my family on either side had a bone marrow disorder. I asked my (brilliant) MDS doctor back then if I would pass it along to my children when I had kids. I was told no, I wouldn’t pass it along if I had children. I now have twin 12 year old girls who are extremely healthy and show no signs of MDS. I thank God for them every day.
Take care,
-Stacey

[stacey]

Rose,

So very glad to hear you have both made it back o.k.
Best wishes,
-Stacey

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