Very worried about MDS. I am extremely anxious and feel very alone.

Hi @gemmalouwho It’s been several months since you posted this discussion with your concerns about having MDS. You’ve received so many encouraging, lovely messages from other members who have experience with MDS or other blood conditions but I haven’t seen any replies from you. I just wanted to make sure you’ve seen them.

Worry just robs us of so much precious time. I hope that you’re following up with your doctor to get some definitive answers about the changes in your blood work. White blood counts can fluctuate with underlying infections, viral infections, autoimmune conditions, from medications, etc., and not necessarily related to a blood cancer situation.
Have you had any recent updated labs? Are you working with a hematologist?

Lindak123, I don’t know anything about MDS, but I do know that stress causes physical damage! We can’t change tomorrow, so why worry yourself to death about it? Your quality of life is suffering because of worrying about something unknown.
Don’t let worry rob your precious children of their mother. It’s simply not worth it. Attitude is everything! Teach your children to be emotionally strong and take one day at a time!

@katgob

I read your note and wonder how you are doing today?

I am 63 and told I might need a transplant (not sure why my Dr said that). I had one bone marrow biopsy but it wasn’t done correctly so I am waiting to get a second scheduled. I have Essential Thrombocytopenia but from some of the Dr’s comments I think there is still more to be revealed.

I hope you are doing really well post transplant.

@kaydee26 I love your post!
I have often told my friends and employees, “the day worry will change something I’ll be the first to sit with you to worry”.
It takes practice but I think most of us can find distractions and should. That’s not to say I don’t worry but I consciously give it a time limit and make myself do whatever I can to stop because nothing good comes from it.

For me worry = stress.
I did a search and the results from AI wrote those of us with cancer have the potential to have our cancer metastasize from stress alone. Meditation, quiet walks or even beautiful music are my “go to’s” when I feel overwhelmed. Working so far as my AML is in deep remission!

Here's an update of my disease, it's been 2 years and 3 months since my diagnosis. Prior to diagnosis I was anemic for 7 years. I have undergone 9 rounds of chemo but was told 6 rounds is the norm. EPO injections continue each week however they stopped working a year ago. Currently I have become transfusion dependent, on Wednesday I received my 26th unit of blood. Two months ago I received my first infusion of Rytello, it's supposed to be given every 28 days however it wiped out the white cells and the neutrophils preventing a follow up dose. I continue to get transfusions weekly while we wait for the other numbers to rebound. Every week I count my blessings that I get a chair in Oncology and I'm very grateful to the people that donate their blood. Trying to keep a positive mental attitude for my family and friends.

@mmkennedy
I meant to wrote last night and send but i did not and my post disappeared.
What i will say today, is if i did not have super short hair, neuropathy in some fingers, I would not believe i had MDS and a transplant.
I looked up what you have, and it is excessive platelets. Blood is crazy. I had been a platelet donor at the Red Cross for 25 years. Continuing decreasing white cells and platelets after my treatment ended was concerning. I had gone through breast cancer and was happy my year after chemo was here and I could donate again!!! So, in September, I finally got my referral i wanted. My Medical oncologist had gone to another hospital after my treatment and as soon as my last pill ended, my NP from that oncologist left work as she decided to stay home, we with her baby. I suddenly had a new medical team in July of 2023. Yikes!!
I had had a blood clot in my thigh, so i reached out to that office. I got calls from scheduling and on the3rd try, a nurse that got me an appointment with a hematologist specializing in MDS. I got an appointment the next week, a BMB was scheduled the next week and by early Oct I was diagnosed with MDS. The result of the BMB was in my portal and i reviewed it and saw "unremarkable". I knew that meant "Nothing Found!!
But I am not a doctor. When i met with the doctor soon after, he read the report with me. Low-med MDS. He said i could watch and wait.
I thought about it. I had a TP53 mutation, 5 Q deletion and Brca2. The Dr said if there were 6 Kathy's, and none took any treatment, 3 would dead within a few years and the other three within 5 years.
With all of that, i said let's do the BMT. He said he would add me to the Bone Marrow Registry. I had 6 matches within the month and my final perfect donor at the start of the year.
I would hope that you ask the Dr what they feel would be best. With the 2nd BMB, the bloods truth would be apparent. They will have suggestions. Please keep us posted on what you are told.