[Cheryl McCall]

My Hgb is between 8 and 9 and I’ve been told I’m not sick enough for blood transfusion, or participation in a clinical study. And at 68 I’m too old for a bone marrow transplant. Guess I should feel lucky the doctor bothers to see me once a month.

[Cheryl McCall]

Get anothe opinion. Or two. It’s worth the time and trouble. My HEMONC recommended Revlamid, so I went to MD Anderson in Houston. They did a whole new BMB and a raft of bloodwork. If I had taken the revlamid I would most certainly developed AML within a year or less because of the multiple blood abnormalities. On weekly Procrit injections I’ve been toddling right along.

[Cheryl McCall]

I was diagnosed with Q5- in March 2019. I’m 67 and live in Texas near Fort Worth. My oncologist wanted me to try a chemo treatment (can’t remember which one) but I declined. In June I went to MD Anderson in Houston for a second opinion and they did a complete workup. Their tests detected that I also had TP53 mutation, something that my oncologist either didn’t look for or forgot to mention. The doctor in Houston told me that the chemo would have caused the MDS to develop into leukemia.

So I’ve been getting PROCRIT shots weekly now since March and my hGb is holding steady between 9 and 10. I have very mixed feelings about my oncologist. When my hgb got to 10.2 she said the insurance won’t pay for treatments if the hgb goes above 10. And I was just starting to feel really good. But three weeks later it was back down to 9.2 so I had PROCRIT yesterday.

[Cheryl McCall]

My first symptom of MDS was severe vertigo. It lasted 2 weeks and was awful.I had several less serious episodes during the following 6 months. In March of this year I was diagnosed with MDS and began weekly PROCRIT shots. I’m still having dizziness and nausea pretty much all the time. I went down to M.D.Anderson in Houston for a second opinion and the agreed with my hemo/onco diagnosis and recommended I continue weekly treatments.

I have the Q5 minus and TP53 type of MDS which means my illness can be treated but not cured. Since I’m 67 I’m not eligible for more aggressive treatments like bone marrow transplant. Since my MDS is considered “in the early stages” they tell me I’m not sick enough to participate in a clinical study to test a new drug designed specifically for my type of MDS.

Other symptoms I’m having are extremely dry skin, tremors, failing eyesight, heart palpitations,bone pain, breathlessness, and memory loss. It’s like torture to not be able to work in my garden or travel to visit my grandchildren.

Not sure if any of this rant is any help to you. But it kinda felt good for me to get some of this stuff off my chest. So thank you very much. Cheryl

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