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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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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@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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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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@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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@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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@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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@shels93

Ironically I just reached out to my husband’s team to ask about a new “rash” on his face and neck, more like small bumps and not too red (he is ~Day +190 from BMT for MDS). He has not needed transfusions for the past 2-1/2 weeks but hemoglobin is at 6.9 so they ordered 2 units of blood for today. I sent pics in to the NP and she said bumps are not related to low hemoglobin and recommended using hydrocortisone which he started last night. Too soon to tell if if made a difference or not. Bear in mind each case is obviously different but I wanted to share nonetheless. Definitely contact your care team and send pics; good luck💜.

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Hi @shels93 It’s good to see you pop up again. The last time we spoke was last year, I think…your husband was just going through chemo for MDs and now I see he has had his SCT.

At about the same timeframe as your husband’s, I developed the same little rash on my face and neck area. I was worried it was GvHD but was reassured that it wasn’t. The hydrocortisone ointment worked well. Disappeared and never returned. There are other ointments too if that doesn’t work. Tacrolimus ointment is very helpful. It’s by prescription only.

How is your husband doing after his transplant? I see he’s needing some transfusions. Is it just his hemoglobin that’s down?

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@shels93

Ironically I just reached out to my husband’s team to ask about a new “rash” on his face and neck, more like small bumps and not too red (he is ~Day +190 from BMT for MDS). He has not needed transfusions for the past 2-1/2 weeks but hemoglobin is at 6.9 so they ordered 2 units of blood for today. I sent pics in to the NP and she said bumps are not related to low hemoglobin and recommended using hydrocortisone which he started last night. Too soon to tell if if made a difference or not. Bear in mind each case is obviously different but I wanted to share nonetheless. Definitely contact your care team and send pics; good luck💜.

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Aww Thank you for thinking of me. I really appreciate the feedback.
I am at the beginning of this and on watch and wait no treatment needed.
I have had the redness on face and neck only twice and it goes away in a day. Looks like a sunburn.
Healing thoughts for your husband and don’t forget to take care of yourself as well!!! I can relate I was a caregiver for my father last year with throat cancer. He is all clear, Thank God🙏🏻

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@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>

Jump to this post

Ironically I just reached out to my husband’s team to ask about a new “rash” on his face and neck, more like small bumps and not too red (he is ~Day +190 from BMT for MDS). He has not needed transfusions for the past 2-1/2 weeks but hemoglobin is at 6.9 so they ordered 2 units of blood for today. I sent pics in to the NP and she said bumps are not related to low hemoglobin and recommended using hydrocortisone which he started last night. Too soon to tell if if made a difference or not. Bear in mind each case is obviously different but I wanted to share nonetheless. Definitely contact your care team and send pics; good luck💜.

REPLY
@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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Definitely, if you have had a bone marrow transplant you need to at least take a picture of what you are worried about. A rash is the first question the doctors ask at each visit. My husband had a rash on his scalp which was nothing but the rash that came up on his arms was graph vs host disease. Serious stuff so if in doubt always take pictures and report it. You are your best advocate. Take care.

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