Anyone experience a change in chimerisium

[Heather8773]

We got a call his cimerisiums have gone down
It was 100% donor in one that now 95% donor 5% him
The other was 92% donor 8% him now it's 70% donor 20% him
Has anyone experienced this!!!!!

[KMac]

Hi Heather,

There is a someone in my support group who is 2+ years post transplant for SAA, doing very well, yet somehow retained a great deal of his own cells for a long time. If I recall correctly, 1 year post-transplant he was less than 50% donor in his chimerism, yet his counts were normal and GvHD was minor.

[Heather8773]

Thank you that's good to hear!!!

[Heather8773]

Well today we got the news his Cimerism is now (after lowering prograf)
Back to 100% in one and the other is up to 81% donor! Yaaaay! I'm happy lowering the Prograf is working!

[DebS]

Heather,

That is such great news!!! What a life we all have--on the edge with these numbers 24/7!

Prayers and good thoughts coming your way. You guys are closing in on Day +100 like we are.

Hope things are going well. We are still dealing with stomach issues and weight loss. I am going to seek answers again on our visit tomorrow.

Deb

[Heather8773]

Thx Deb! I was thinking about Doug being close to 100+ earlier today when we were talking to the Dr about Ron's (pw) being jan 18th! So exciting.
-on the edge w these numbers 24/7*** isn't that the truth! I've never been a big fan of math or numbers before all this! But now they seem to be the majority of my reading! But Im so thankful to be reading good numbers!
Prayers and good thoughts yalls way! I hope his stomach does better soon. Sometimes things bother Ron where all of a sudden he will wake up w stomach issues (vomit or diarreah) in the middle of the night and he will scratch whatever he ate off the list for awhile.
Is Doug taking magnesium?

[mausmish]

Wonderful news, Heather!

[Heather8773]

Thank you!

[Whizbang]

Great news Heather...!

[Heather8773]

Thanks! So happy!

[dfantle]

So happy Ron's chimerism is back up. Yay!

[dfantle]

Originally Posted by DebS

Heather,

We are still dealing with stomach issues and weight loss. I am going to seek answers again on our visit tomorrow.

Deb

Deb, so sorry to hear Doug is continuing to have stomach issues. I've been there & it will definitely improve. Do his Dr's think his issues may be caused by his medications? One of my meds, MMF (cellcept), caused me a lot of stomach pain & nausea before I switched to Myfortic (a coated version). It was almost instant relief once I switched over.

Best wishes

[Heather8773]

Thx Dena! Are you so happy to be approaching 8 months?! We're so excited 100 is right around the corner!!!!! Did it seem to come quickly looking back now? I told Ron tonight " how exciting 100 days! Now just do it 2 and a half times and a year will have passed!" he laughed a happy laugh

[dfantle]

Originally Posted by Heather8773

Thx Dena! Are you so happy to be approaching 8 months?! We're so excited 100 is right around the corner!!!!! Did it seem to come quickly looking back now? I told Ron tonight " how exciting 100 days! Now just do it 2 and a half times and a year will have passed!" he laughed a happy laugh

Heather, I'm 3 weeks shy of my 1 year & its hard to believe I'm so close. . I'm definitely excited & also a bit nervous. The 1 year bone marrow biopsy in 2 weeks from tomorrow and the results should be great, based in all my lab results, but its the unknown factor that's hanging out there.

(The 5/13 date is when my team assured me the transplant was successful & I no longer had SAA)

There's definitely a point where the time seems to go by fast. You & Ron will be there before you know it.

[Heather8773]

Now I see lol! Well even better! So exciting! Your results will be great! But the waiting for that conformation is nerve racking
You will have to post on the 1 year day so we can wish you a happy re birthday!!!

[DebS]

Dena,

Thanks for the tip about coated version of cellcept. I will ask today.

Doug was put back in the hospital on Thursday to try to get to the answer on the stomach issues. They do think it is GVHD of the gut. He had tests yesterday and we will get results in 3-5 days. They will not keep him that long, however. He will be coming home today or tomorrow.

I couldn't believe how much better he looked after getting 24 hours of fluids! His blood numbers are really good. Hg 16, Plts 159. So that part of it is fine. Now the stomach.

We are closing in on 100 days this next Thurs. I would at least like for him to feel good about it! It has been a miserable week for him.

But, we march on!

Best of luck to you. I love how positive and helpful you are in your posts

Deb

[dfantle]

Deb, wishing you & Doug well & hoping they release him soon.

Apparently Myfortic works exactly the same as MMF, but dissolves a bit lower in the gut so doesn't typically irritate the stomach so much. MMF gave me so much pain, I was in agony from it until I switched.

I only found out about Myfortic by chance from a friend who suggested i ask about switching to it because perhaps the MMF was causing my pain.

Once I asked about switching, I was told Myfortic isn't covered by all insurance companies for adult patients as its more expensive. I had to push for my nurse to confirm if it was covered & luckily it was. (though I would have been willing to pay for it out of pocket). I truly felt an immediate difference the day I switched.

Doug's numbers look great, especially his HGB. 16 is amazing for just under 100 days!

[DebS]

Thanks, Dena.

I asked the doctor about the Myfortin today. She said that they like to stay with the same cellcept. Whatever the hell that means!!

Anyway, they switched him to Sirolimus today. They said that it would be easier on the gut. Also added more steroids and nutrition. He probably will be released on Tuesday.

I am so tired. I am not complaining but I feel sometimes that I am doing the work of 5 people. I know all caregivers feel this way. I also know that sometimes I try to be superwoman. Long ago, Neil wisely advised that the superwoman thing can only be kept up for a short time.

I think I need to take a breath and a break

Deb

[dfantle]

Deb, I can only imagine how difficult your role as caregiver must be. If Doug has moments during the day when he's feeling even slightly up to it, encouraging him to get up, move around, fix himself breakfast or lunch...would be really good for both of you, may help you find time for yourself & help avoid burnout.

I wonder if it might be helpful for you if someone on his team suggests this to Doug, perhaps a nurse or social worker?

I'm pretty independent and preferred to cook my own dinner as I knew what I'd eat and didn't want to subject my hubby to my last minute appetite changes. But I'll admit for breakfast & lunch, I really appreciated letting my hubby get these for me and sometimes relied on him when i pribably didnt need to instead of doing it myself. When he returned to work after 3 months & I had to get these myself every day, I figured out ways to take care of these on my own, even if I was really tired.

I'm so sorry the Dr wasn't more accepting with the Myfortic. My transplant docs were the most experienced transplant docs at my clinic and top researchers & although I had to push for it, they confirmed there was no difference between the two. But perhaps Doug's Doc is more comfortable with Cellcept. Does he take Omeprozle (Prilosec) to help his stomach issues? This also helped me some.

Best,

[DebS]

Dena,

They switched him to Sirolimus yesterday so the cellcept is just a memory I guess.

Doug is VERY independent. In fact at times I think too much so. He fixes his own breakfast, lunch, and sometimes dinner. But lately that has been oatmeal and soup! But at the hospital he will not let me touch his IV pole even to plug it in! He bathes himself and even helps me fold clothes after I do laundry. Exercising has never been a problem for him. So I am not concerned there. Even today at the hospital, we took a half an hour walk.

I am and have always been concerned about his food and liquid intake. I drink gallons of water a day and always have. So for me to see him just sipping at a glass of water drives me crazy! I am constantly asking him if he wants something to drink. He is constantly saying, "No thank you." And so it goes.

I just got home from the hospital. They will probably be keeping him there until at least Tuesday. It is pretty much confirmed that he has GVHD of the gut. So they are treating him for that.

Thanks for your help.

Deb