Living with MDS

Kathy, we are fortunate to have two Bone Marrow Centers in our area and we were able to get everything done locally about 45 min away. He was seeing another oncologist but he wasn’t specialist and we were allowed to pick which hosp here in Indianapolis for treatment. It has been a true roller coaster but he has gotten a year that he possibly wouldn’t have had and not every one gets or has complications. We have been blessed.

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.

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.

<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>

I don't know if I would call it a rash, but a couple of times my face has had some red coloring show up. On one occasion my entire face and neck area were red. It looked like a mild sunburn. It resolved itself within a couple of days so I did not seek any medical attention.
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Also, don't know if the redness was related to my MDS, of if it was a reaction to something else.

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.

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💜.

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🙏🏻

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?