1. < Blood Cancers & Disorders

Living with MDS

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?

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momz | @momz | Oct 24, 2023
In reply to @colleenyoung "Brenda, I moved your recent post to your existing discussion about living with MDS (myelodysplastic syndromes)...." + (show)
@colleenyoung

Brenda, I moved your recent post to your existing discussion about living with MDS (myelodysplastic syndromes). You're asking great questions. I'm tagging members @lorieafoote @smetzing @jrwilli1 @nbadry @rrivory @honeymae who can share their experience with treatments and what tests or symptom changes led to their needing a change in treatment or how long they've been on watch and wait.

I'm sure you've read this already, but just in case, here is info from Mayo Clinic about diagnostic testing and treatment https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980

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Thank You so very much for doing that!!!!

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jrwilli1 | @jrwilli1 | Nov 12, 2023
In reply to @jrwilli1 "His being up so many times yea probably due to old man prostrate but currently on..." + (show)
@jrwilli1

His being up so many times yea probably due to old man prostrate but currently on urea sodium packets to help increase his sodium and these cause him to go more. Hopefully won’t have to take these forever. Just 4 x last night. 👏🏻

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He is doing very well now. The confusion from the infection is subsiding and the sodium is leveling out but he continues to go several times during the night. But he is able to walk around our block now without his walker. So I hope we are on a steady coarse now. Will continue to limit our interactions outside of family but will mask up and go see family.

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2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Nov 13, 2023
In reply to @jrwilli1 "He is doing very well now. The confusion from the infection is subsiding and the sodium..." + (show)
@jrwilli1

He is doing very well now. The confusion from the infection is subsiding and the sodium is leveling out but he continues to go several times during the night. But he is able to walk around our block now without his walker. So I hope we are on a steady coarse now. Will continue to limit our interactions outside of family but will mask up and go see family.

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Good morning, @jrwilli1 This is really encouraging news about your husband! ☺️ I’m so happy to hear he’s doing much better now! That has to be an enormous relief for both of you. Those daily walks will do wonders for his stamina and to help gain strength! Hah, tell him not to show off too much without that walker, but I know that feeling of freedom when you get to ditch those wheels. Congratulations are in order.
Yep, masking definitely helps and you’re doing all the right things to keep you and your husband safe. You know what you’ve both gone through to get him to this point. ☺️
I have to forgo some larger events where there are a lot of people, but we still get together with family and friends. Masking up is the key. It’s just the way it is and no one in our family or circle of friends balks at the idea of my wearing a mask.
Have a Happy Thanksgiving! And give your husband a High Five from me. 🦃

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 13, 2023
In reply to @jrwilli1 "He is doing very well now. The confusion from the infection is subsiding and the sodium..." + (show)
@jrwilli1

He is doing very well now. The confusion from the infection is subsiding and the sodium is leveling out but he continues to go several times during the night. But he is able to walk around our block now without his walker. So I hope we are on a steady coarse now. Will continue to limit our interactions outside of family but will mask up and go see family.

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Hello @jrwilli1,

I would like to join Lori, @loribmt, in congratulating you on your husband's progress. How wonderful! That is great that his sodium is leveling out and the confusion from the infection is subsiding.

Enjoy your holiday visits with your family.

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jrwilli1 | @jrwilli1 | Nov 13, 2023

I can’t say enough about being able to vent and get insights from you guys. I am thankful for this connection. Thanks

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momz | @momz | Nov 13, 2023

I as well am glad to hear of your husband doing better!!
I send warm hugs and blessings for all here!! I am so Thankful for each of you who share your stories and help bring comfort to me and understanding when I reach out. As we all approach the Holidays however we choose to celebrate and find joy in the small moments, know how you make a difference by sharing!!
Forever Thankful Brenda😊

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Mentor
Lori, Volunteer Mentor | @loribmt | May 14 9:41am
In reply to @smetzing "He will be having another BMB in November. He seems to tire more easily lately. i..." + (show)
@smetzing

He will be having another BMB in November. He seems to tire more easily lately. i hate this hes stable wait and see. might be looking at seeing another oncologist. I told him how im working on getting his numbers up, he said you are wasting your time. told him i was making him protein shakes, and supplements but he didnt seem interested. his numbers are looking better. platelets up from 28k to 48k. and wbc and rbc up some too. ill take whatever wins at this point in time. we met with transplant team in August. after we heard how long a process it is and how long we would basically have to live about 50 miles from home for could be six months, he just doesnt want to do that. if we were younger, yes, but im 67 and he just turned 70. at our ages its like, how much longer are we going to live anyways, and do we want to spend a significant important part being away from our home and family and doing what we enjoy. i just dont know, MDS just hit us so outta left field. ill post keep you updated. i joined the group on one of those long sleepless nite and had forgot about it till i seen my email today. thank you for your concern.

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Good morning. I just wanted to check in with you to see how your husband is doing with his MDS. Any news on his condition? Is he a candidate for a stem cell transpant?

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kathy115 | @kathy115 | May 17 5:49am
In reply to @momz "Hi just wondering if anyone with MDS has experienced rash on face and neck. I have..." + (show)
@momz

<p>Hi just wondering if anyone with MDS has experienced rash on face and neck. I have had this recently in the last few weeks a couple times. Is it a sign of progression and should I call my oncologist? Anyone relate?<br />Thank You Brenda</p>

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Yes, my husband has MDS and he has had a rash on his face, neck, back, chest, arms and a bit on his inner thighs. He was treated with Prednisone for a week and it cleared up but when he stopped it came back. He is now on a steroidal cream and it is helping but it is also clearing up and returning. We are trying to figure out the cause. I’m wondering if it is from Luspatercept (sp) which his hematologist wants him to try again which he was taking before he went into the hospital for a UTI and blood infection. It also causes shortness of breath and severe fatigue. Is your husband’s rash itchy?

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dabls6 | @dabls6 | Oct 29 5:49pm

I had to wait two years before I started treatment. My hemoglobin dropped to 10. Started reblozyl injections every 3 weeks. It helps produce red blood cells. I have had success with this treatment for my MDS. Good luck

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dancouclanel4 | @dancouclanel4 | Nov 11 2:04pm
In reply to @rrivory "Hi - One thing I learned early on is that there is no "normal" for MDS...." + (show)
@rrivory

Hi - One thing I learned early on is that there is no "normal" for MDS. I am 64 and I too am on watch and wait since 2020 (but 2nd and 3rd opinions said it's been since 2017). I am low in all 3 blood lines, and, thankfully, have no symptoms. I get checked every 3 months, unless something is lower than it usually is for me, in which case I will have a check after 2 months. I try not to dwell on the what-ifs, but will usually get a little anxious on my check-up days. I'm trying to exercise and eat healthy foods so I can be in the best health when/if my SCT comes along.

Treatment will vary depending on your symptoms, and on what numbers are off and by how much. Sometimes it's transfusions, sometimes medications to bring up cell counts. Again - there is no "normal". It's a crazy disease!!

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I agree with this prognosis....my MDS is in remission of AML with no blasts. After 8 cycles of treatment of viadza and ventoclex my blood #s have stayed positive for WBC and ANC with slight challenges with platelets. Hemoglobin has progressed slowly to 12.5....which has been wonderful. No transfusions since July 11 this year. I have 5 mutations. Best to all on their journey.

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