Living with MDS (Myelodyplastic Syndromes)

Aww this is such wonderful news about Rachel and it’s definitely tugging at my heart strings! Just the way you’re referring to Rachel as your sweet wife did me in! You two are a united team from the get-go. I’m so happy that surgery to remove the tumor on her spine was so successful. Oh my goodness…what an amazing surgeon to work miracles there! And to see a response in the blood numbers is a gift x 2! If that second round of numbers is good and you’re going to pop the champagne cork, please share a glass with me as we toast Rachel, her doctors and you for the happiness we all share for your sweet Rachel. She’s beautiful! Seriously, ask her the secret to looking that lovely in a hospital gown, no less! Please hug her for me! ☺️🙏💞

Hi Lori -- Thanks for asking about my sweet wife. There's a story to tell, but, overall, things are looking up, thank the good Lord. As you know, Rachel's blood counts have been dwindling for the past 18 months. She's had several transfusions and plenty of Procrit shots. What you don't know is that, for the same 18 month period, Rachel had a benign tumor inside her spine which was pressing on the spinal cord, causing lots of pain and numbness. According to most doctors, the tumor has nothing to do with the MDS and the blood numbers. Two weeks ago, an amazing "miracle worker" surgeon, Dr Kelly Gassie, removed the tumor. There was a lot of doctor clamor before the surgery because low WBC counts would certainly lead to post-operation infection. Nevertheless, Dr Gassie agreed to Rachel's wishes and removed the tumor and, after two weeks, only a faint UTI (from the foley) is present. Further, what is really wonderful, is that our first CBC after the surgery shows marked improvement in blood numbers. One hematologist said "Your bone marrow is responding to the tumor removal." I will wait for a second CBC before popping the champagne, but I sure like hemoglobin at 9.3. It has been as low as 5.2.

I am in the same boat. I was recently diagnosed with MDS with anemia. It's a waiting game. I won't see my doctor for three more months. I will have blood drawn to see what my hemoglobin is.

Oh my. 93. I say go up to the subject line on the top of the page and enter MDS. I had MDS, but i am sure none of us had the exact same symptoms.
Did your dr give blood results hence the watch and wait? A bone marrow transplant is what i had, but at 93 you would need other options.
There is a lot to read. Maybe "What is MDS"!

More will post to give you info. There is a bunch of us on connect with MDS. We are here for you.

I have been diagnosed with MDS by my Hemotologist and as I m 92 years old it is a wait and see game. The Dr. advised me there was nothing to help just monitoring. I know nothing about MDS and I am looking for information on just what to expect.

Hi @statmatics. Thought I’d drop by this morning to see how Rachel is doing. Last we spoke, she’d had a filgrastim injection for her low neutrophils. I’d mentioned taking Claritin the next time to help avoid the bone pain that’s often associated with the rapid production of the white blood cells. Has she had another injection since? Has this been helping to raise her counts?

I was recently diagnosed with MDS with anemia. I have been anemic for many years but until our blood test results were published on our patient portal I didn't know bad it was. If my hemoglobin goes below 10, I will begin injections of a hormone to help my bone marrow make healthy cells. I am on watch and waited. I hope the best for all.

On July 31, 2025 my husband and I met with my hematologist and he said he spoke with his colleague at UVA and I do not have MDS. I have CHIP (Clonal Hematopoiesis of Indeterminate Potential). It means I have the mutation (TET2) that can lead to MDS and we will just monitor my bloodwork like we have been doing. He suggested I go off my LUPUS meds that I’ve been on since 2006 for 4 months and have a bone marrow biopsy to see how that helps my blood counts and if it changes my bone marrow.
We will still go to UVA for a second opinion some time in August since I live in VA.
I am going to have my total right knee replacement surgery in September after Labor Day. I’ll have to have 2 days of Neupogen injections to boost my white blood cell counts prior to surgery. I have had critical low WBC of less than 2.0 for 19 years. I have Neutropenia too. I have Lupus SLE. I bruise easily and my arms and legs are always purple. I don’t wear shorts in public. I’ve battled with chronic fatigue all my life. I have Hypothyroidism. I battle with depression and mood disorders and PTSD. I lost four pregnancies before I had my first daughter who is 21. We have 21 yr old daughter, 19 yr old daughter, 17 year old daughter and 16 year old son with Down syndrome. I’m concerned that my local doctors aren’t taking care of me. I fight sinus infections, allergies, asthma, respiratory infections. I hope this second opinion will be beneficial. Any comments.

Thanks Lori I will. ❤️

Hey Jacklyn, If my doctor told me that she’s thinking of delaying treatment because my numbers are good, I’d say, “Yippee Skippee”. I think that’s awesome if you don’t need to start yet.
Having labs every two weeks will be enough to keep tabs on you and alert your doctor to any changes. You might need treatment in the future but for now, personally, I’d feel pretty good about the news. ☺️

So sorry your itching came back! I hope the loratadine works for you. That over-all itching is awful. And the bug bites sure didn’t do you any favors! I wonder if my trick would work for you? I get relief from mosquito bites by applying Bio-Freeze to the bites asap! I suffer from skeeter syndrome, a major reaction to mosquito bites. 🦟. The sites get huge…large egg to half a grapefruit size and itch/burn intensely. The Bio-freeze really works for me. Calms the bites down. They still swell up, even when I apply ice it the intensity is gone. Since I always have Bio-freeze on hand I haven’t tried anything else like Icy Hot. I think it’s the menthol that’s doing the job.

Well, I’m expecting you exhaled a big sigh of relief with your news! So enjoy the next few weeks, foot loose and fancy free. 😄 Thank you for sharing the news with me!