Twilight

I am so happy to hear that your brother is finally home! I will continue to include him in my daily prayers.

Please keep us posted.

Karen

I had two visits a week to the clinic for a couple of months after I got out of the hospital and the did do a biopsy at about day 60 if I remember right, but that may have been because of the clinical trial I was on. And I had another when I thought I had relapsed. It will be blood work and them monitoring for graft vs. host disease and managing that. I never had to have any more transfusions after the transplant. The main things I paid attention to as far as the blood work was my WBC, Hemoglobin, and Platelet count. But no need for him or you to watch them, that's what his medical team is there for. If they are not concerned there is no reason to be concerned. As most everyone on here will tell you, watching and worrying about the moving target for his blood counts will only lead to grief and anguish.
Praying for a easy and quick recovery.

DaveJ

Karen
You and your entire family are in my prayers also.

Dave,
I will try to keep my OCD under control. It is hard not to worry and obsess even though intellectually I know it makes no sense. Surely the lesson of this journey is that we really are not in control!

Twilight -- the main thing that will happen in a relapse is that the blasts will get high. I asked my onc how they can tell that from just blood tests since they did not want to do another. She said that it would make the other numbers (wbc, rbc, platelets, etc.). vary considerably from what has been my normal (which, by the way, is low platelets and huge diameter red blood cells) ... so the blood numbers per se are not the true indicators as much as their comparison with the past history. Then, when something dramatic is indicated, they will go to a BMB to confirm the blast count (as a percentage of totally blood cells) and do some other diagnostics to try to get a fix on what the mutation is that is causing the problem.

Thanks for keeping us up on progress. All seems to be progressing quite well. I was chemo only (going on five years), so cannot talk about transplant, but many others here can and will help. And we are all praying for your brother as well -- take care -- dave

Twilight,

Praising God for your Brother's positive progress. Praying for continued healing.

Julie

Hi Twilight,

Like DaveJ, Sal went to clinic twice a week. Blood tests were taken for CBC, tacrolimus levels, magnesium, CMV, etc. Lots of questions were always asked about any possible signs of GvHD: gastric discomfort, skin issues/rashes, etc. They would examine Sal's skin, check his mouth and throat, etc.

Basically, they will monitor your brother's recovery, checking labs to determine whether more/less tacrolimus/cyclosporin is needed, checking blood counts for recovery, watching for signs of GvHD. Once out of the hospital, Sal never required any blood products at clinic, but he did get a bolus of saline when he was a bit dehydrated. It's important to drink a lot of water.

Sal did not have a BMB until it was getting close to Day 90. He had a sibling donor, so chimerism was pretty much assured, and his counts had been steady.

I'm so glad your brother is home!!

Monique

Twilight,

The most important thing now for your brother is exercise and nutrition. He should eat anything that he likes and is permitted to eat. Exercise will strengthen him quickly. Don't worry about the future BMBs. They are to assess his recovery and they are reassuring.

Very happy!

Cliff

He'll feel so much better at home. We did clinic 3x per week for first 30 now are doing 2x. Had a bmb at day 30 to check for chimerism and marrow status. All came back good!!!!! Has another bmb at day 90, this is all standard at our hospital.
Counts fluctuate, as we've recently learned do trust what the doctors tell you, when you go 3x / week you're gonna see all sorts of ups and downs. They will watch WBC, ANC, hemoglobin and platelets. Also liver function magnesium and Prograft levels are monitored.
Tonys never needed platelets or blood products but kept the Hickman port in to get magnesium IV . They are planning to take it out next week if all looks good w his mag. He's switched to oral "mag Ox" and is treating it w out the diarreah side effect so far.
Exercise & diet and rest are his main priorities now

I'm with Cliff on the exercise, the fatigue seems to be the most prevalent complaint for everyone post transplant. I may have went somewhat overboard but made sure I got in my bike rides every day. I started slow and quickly progressed and am now to the point where I can do 3 hour rides and put down some really hard efforts. I have NO fatigue whatsoever. I feel great. I am one week away from being 8 months post transplant. It is hard at 1st but the payoff couldn't be greater. and if it is some form of exercise that he enjoys, all the better. The nutrition part of it I haven't done as well at. Just don't enjoy food like I used to which Is probably a good thing really. My NP told me eat whatever I want and as often as possible. Ice Cream still tastes good to me so I eat that everyday. Try salads with meat added, they are easy to eat and taste good. My latest issue with eating is dry mouth from the gvhd. never occurred to me that not making adequate salvia could effect your ability to eat the way it does. Sorry for the long rant, I am praying for you family and a quick and easy recovery.
davej

Everyone, this helps a lot. I assume chimerism is something positive here. His donor was his sister so if what Monique says is right, he should do well in this area?

Thanks to all and prayers --
Twilight

Twilight, your brother is in my prayers through his 100 days. Prayers for health, peace and comfort for all!

Lora

it is positive but it may take a while to achieve 100% donor cells. it took me 6 months because of the meds I had to take for the gvhd. and my donor was my brother. I am told that most hit 100% donor within 3 months,
davej

Thanks Dave. That seems reassuring. Hope all is and continues well for you.

Another good report with this weeks visit. Numbers good and lots of donor cells in peripheral blood. No leukemia cells found. Docs pleased so far. Fingers crossed. We are at day 47 with BMT at day 100.
Thank you God and to everyone for support and prayers.
Best wishes to all battling this and to those supporting those battling this awful disease.