Living with MDS (Myelodyplastic Syndromes)

Posted by momz @momz, Sep 4, 2023

I finally got my answer to what I have and trying to wrap my mind around it.
I am an ovarian cancer survivor of 20 years and have MDS for the last 7
Currently on watch and hate to even say wait!! What is the longest someone has had with no treatments? And what was the reason for treatment when it was needed?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

jacklyn | @jacklyn | 9 hours ago

In reply to @loribmt "Oh my goodness, your mom is 106 years young?? That’s amazing. I hope she’s still doing..." + (show)

@loribmt

Oh my goodness, your mom is 106 years young?? That’s amazing. I hope she’s still doing well and that you have some help with the caregiving duties now. It’s not easy being a caregiver and it does certainly take its toll on the body. I went through that with my mom, though she only lived to 88.

Not sure whom to write to here so husband and wife 😁With your appreciable drop in hemoglobin your doctor has you taking Retacrit injections to help promote your blood cell production. I know you’re both reluctant to start the Vidaza because it’s termed a chemotherapy. But the medication is designed to help the bone marrow produce more healthy and normal functioning cells. By treating the MDS, it can help increase blood cell counts, reduce the risk of infection, reduce the amount of blood transfusions needed, decrease the risk of bleeding, and to help prevent MDS from transforming to AML.

Yes, there can be side effects such as a temporary drop in all of the blood numbers the first week or so after the injection, along with fatigue. But by eliminating the cancerous cells in the marrow, this allows for healthy blood cells to regenerate. It’s not meant to be a cure but it be helpful in reducing some of the symptoms of MDS.

Having gone through intensive chemotherapy and a bone marrow transplant, I truly appreciate your hesitancy to start a chemotherapy drug. But chemo can be a life saver. To do nothing is to, well, do nothing…allowing for cancer cells to continue to proliferate.

To your husband: you sound very much like my husband, spread sheets and a notebook in hand with a list of questions! It’s great to be prepared and it does help to have the questions written down with the limited time we have with our clinicians. Easier to stay on task!

This is such a personal decision for both of you to make. So I think the visit with the hematologist next week will be really beneficial to address your concerns. Will you let me know what you decide?

Jump to this post

I have been diagnosed with MDS 2016. Now I have been diagnosed with CMML. 3 yrs ago. I have taken hydroxyurea for an increase in my white cell count. They were up to 70. And the hydyoxyurea brought them
Down to normal. Last week I had another bone marrow byopsy last week because my white cell count went up
Again to 75. Also my spleen is very enlarged so
I have had nausea. I am 77 and have problems with digesting. My worry is recently l have had itching. It started with a few hives but now it’s like I itch all over especially at night. I read it could be Puritis and there is no cure for that. I am hoping the hydroxurea will shrink my spleen and lower my white cell count and take away the itching. I take 1000mg if hydroxy a day Monday to Friday and 500mg on the weekend. On my second week where she upted the dosage. Is there anyone else who
Has suffered with this itching.

miketllc3 | @miketllc3 | 8 hours ago

In reply to @jeffreykassover1 "Thank you! I'm on my 5th round of Vidaza, with some positive results and some mixed..." + (show)

It took a few months for the vidaza to kick in….you will be fine…good health to you. My labs began to stay in the normal ranges.
Mike

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