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 19, 2023
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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I am curious to know what signs, symptoms, or tests results appear for MDS to require treatment or transplant. Did you feel ill enough to know or did a test result show the change? Also what is the longest someone has lived on watch and wait, years or decades with MDS?
Thank You for sharing Brenda

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 20, 2023
In reply to @jrwilli1 "Kathy, I am so sorry I wrote a note and must have not hit post/ imagine..." + (show)
@jrwilli1

Kathy, I am so sorry I wrote a note and must have not hit post/ imagine that. We are fortunate enough to have two very qualified BMT hospitals in Indianapolis area so we have done all our care through one and we’re able to do transplant as an outpatient. Although after the first round of chemo he was hospitalized for 3 wks for his reaction and was told he probably wouldn’t be a good candidate. But but mr determination worked hard on PT and got himself ready. I’m not saying it hasn’t been a roller coaster of events but he is almost 8 months out and would probably do it again. He had a bout of graph vs host and now presently in hospital for CMV virus. But prior to that he was walking at least a mile or more and even riding his bike til he fell on it. So bike is out. If you have the opportunity to do local I would and use Mayo as resource. We don’t have family close but neighbors have been great. Have faith and trust your gut. Oh his cancer is in remission and donor at 100% presently.

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Hello @jrwilli1

I was thinking about you and wondering how your husband is doing with the CMV virus. I see from your post on October 9, that he was still in the hospital. Is that still the case?

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1 reply
jrwilli1 | @jrwilli1 | Oct 20, 2023
In reply to @hopeful33250 "Hello @jrwilli1 I was thinking about you and wondering how your husband is doing with the..." + (show)
@hopeful33250

Hello @jrwilli1

I was thinking about you and wondering how your husband is doing with the CMV virus. I see from your post on October 9, that he was still in the hospital. Is that still the case?

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He has been out 1 week now and slowly getting his strength back. With his sodium still being out of wack the medication makes him still get up a lot during the night so we are both exhausted. We are just taking each day as it comes. Thanks for asking.

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jps01 | @jps01 | Oct 21, 2023

Hello @jrwilli1,
I am sorry that your husband's situation is so difficullt. I can only suggest that from my brief time with MDS, it does bring nothing but uncertainty. I was diagnosed one year ago, and must admit feeling pretty discouraged, even depressed, and expecting a relatively quick "exit". I am 76. But over the past few weeks, I simply decided that I was going to live another 10 years. I am too old to get a transplant apparently, but in any event, I will keep living... So I encourage the two of you to hope for the same, and even more! I thus encourage you to follow the medial advice at this time...

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1 reply
jrwilli1 | @jrwilli1 | Oct 21, 2023
In reply to @jps01 "Hello @jrwilli1, I am sorry that your husband's situation is so difficullt. I can only suggest..." + (show)
@jps01

Hello @jrwilli1,
I am sorry that your husband's situation is so difficullt. I can only suggest that from my brief time with MDS, it does bring nothing but uncertainty. I was diagnosed one year ago, and must admit feeling pretty discouraged, even depressed, and expecting a relatively quick "exit". I am 76. But over the past few weeks, I simply decided that I was going to live another 10 years. I am too old to get a transplant apparently, but in any event, I will keep living... So I encourage the two of you to hope for the same, and even more! I thus encourage you to follow the medial advice at this time...

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Thank you for your encouragement. Well after him being up 8+ times last night I decided we were still going to drive the 2 1/2 hours to see our grandsons soccer game. Yes I’m worn out and going to sleep now to see what tonight brings. But I have to keep him hoping to do things and keep up his spirits. The grandson didn’t know we were coming and he was excited to see us. 😘

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jps01 | @jps01 | Oct 21, 2023

That is so wonderful, although it takes a lot of courage. But hopefully being close to familly will make it well worthwhile. I kid about the fact that my not abnormal 5-6 get up at nights, are a great "excercise". But being tired as you are, makes it all difficult. Enjoy the day tomorrow.

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kgerbitz | @kgerbitz | Oct 22, 2023

What causes the 5-6 times getting up at night?

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1 reply
jps01 | @jps01 | Oct 22, 2023
In reply to @kgerbitz "What causes the 5-6 times getting up at night?" + (show)
@kgerbitz

What causes the 5-6 times getting up at night?

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Probably an "old man's" prostate... I will be getting an ultrasound in elarly November.

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jrwilli1 | @jrwilli1 | Oct 24, 2023

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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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 24, 2023
In reply to @momz "I am curious to know what signs, symptoms, or tests results appear for MDS to require..." + (show)
@momz

I am curious to know what signs, symptoms, or tests results appear for MDS to require treatment or transplant. Did you feel ill enough to know or did a test result show the change? Also what is the longest someone has lived on watch and wait, years or decades with MDS?
Thank You for sharing Brenda

Jump to this post

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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