Living with MDS (Myelodyplastic Syndromes)

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?

Thank you! I'm on my 5th round of Vidaza, with some positive results and some mixed results, which the doctor attributes to normal fluctuations. I hope so. Your three years on Vidaza help my thinking and made me hopeful. Thank you. Maybe the Vidaza finally kicked in.

Thank you! I'm on my 5th round of Vidaza, with some positive results and some mixed results, which the doctor attributes to normal fluctuations. I hope so. Your three years on Vidaza help my thinking and made me hopeful. Thank you. Maybe the Vidaza finally kicked in.

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.

@jeffreykassover1 Jeff good to hear that you are having better results with the Vidaza. I hope you have a 3 yr success like @miketllc3. My 16mo success with Revlimid may be changing to pill form of a hypomethylating agent, decitabine. I am having a 5th BMB on July 5. I am hopeful the blasts have not increased.

Good morning, @jacklyn. Itching…I swear that can be worse than pain. Unfortunately it’s a lovely side benefit of some blood diseases…sarcasm duly noted. I had AML and got to the point where I could barely tolerate showers…before and during treatment. So you have my deepest empathy.

You’re not alone in this…though I know ‘misery loves company’ it doesn’t cure the itch! I found this discussion for you posted by @madhornet, who also has CMML and dealing with itching!
MDS-CMML-1: Anyone dealing with pruritus (itching)? https://connect.mayoclinic.org/discussion/mds-cmml-1-information/

Hopefully you’ll find some helpful information in the conversation. Did your itching become worse when your HU dosage was increased?

It started before I started the hydroxy. They say it’s exama. I do have some pimples here and there but it’s at night that I feel
It worse. My pharmacist gave me loratadine but I am
Afraid it will
Interact with my venlaflacine and clonaplazine. I fell
Last November and fractured my L1and L5 vertebrae. The worst pain imdbervwdnt through. Ended up on morphine and went to thevER three times in pain. Went through a break through depression which was the worst. Then they found water around my heart so that had to be drained. I am
Hoping the hydroxy will shrink my spleen and lower my white cells snd the itching will
Go away. Pray for me. Please. .

Oh gosh, Jacklyn. I hope the itching will get better for you. I ran your meds through an online med checker for interactions and didn’t see indications that the loratadine would interfere with your other two meds. But you should call your pharmacy to make sure.
Loratadine is an antihistamine and that may really work well for the itching! It would be worth taking to see if it brings you relief.
I know this all feels insurmountable right now with the back pain and depression. The itching alone can be incredibly intrusive on the quality of life! So I truly hope the antihistamine does the trick! Of course I’ll pray for you and will also add a huge, but gentle hug. Please let me know if the Loratadine helps you, ok?

Thank you Lori. I will do my blood work next week to see if the white cells have come down. I will talk to my oncologist about my itching. I did a bone marrow biopsy so will get the results. I hope the CMML isn’t progressing. I also
Started a new medication my oncologist put me on for my kidneys. It’s called allopurinol. It could be that too that is giving me the hives.