Day 110
 

Things here are going good. My day 100 BMB showed my cellularity had dropped to only 5 percent (from 30 at my previous one post transplant). My counts had also plummeted down for awhile. So needless to say we were worried that we would have to do a stem cell boast as my bone marrow showed 95 percent donor and my blood showed 100 percent donor. Thank goodness my counts are starting to rebound (although my last set was a little lower)...so we are cautiously optimistic that things will improve. They are weaning me off the Prograf in order to see if that was suppressing my marrow from producing cells too. I get my labs again tomorrow and pray they are higher or at the very least the same! I also meet with my dr so we will see what he says. The biggest things for me is they can't keep my Magnesium up. I get 4 grams iv every day and it is always low every day regardless. The doctor states as I get off the Prograf it will get better but have yet to see that. I also have burning in my feet that was being controlled by Lyrica but for some reason it has come back so now I am using a topical cream in addition to the Lyrica. I still take the Budesonide for gut GVHD but have no symptoms of it. Also I have Bursitis in my shoulder that is painful but because my platelets are so low (from the drop) they can't really do anything about it except pain medications. The doctor says as soon as the platelets come up I will get a steroid injection. I really honestly can't complain and just can't believe that I had a transplant a little over 100 days ago.

Hi, Laura.

Sounds like you're pretty much on track. I had the same magnesium and burning feet problems until my Prograf was substantially reduced. I can even remember my feet burning most while standing in a lukewarm shower! Expect those symptoms to go away and your counts to go up as the dosage goes down.

Regards,
Ruth

Hi Ruth,

Thanks for the post.

Yeah the weird thing is my feet burning is worse now that we are decreasing the Prograf? My main dose was 2 mg in the am and 1.5 mg in the pm (if I remember correctly...geeze I can't even think of it right now). Right now I am at 1 mg in the am and 1 mg in the pm. You would think it would be getting better along with the Magnesium but no such luck yet.

But honestly, I really can't complain as things could be worse than burning feet and Mag problems!

Laura

I'm not familiar with prograf, but when I was on cyclosporin it made my hands and feet burn and be REALLY sensitive but that went away almost immediately when the cyclo was stopped. I feel for you with the magnesium drips - I hate that stuff! It always makes me SO hot!

Hi Laura,

I am happy about your 110 day counts.I am at day 85 and my counts change everyweek.Last week my plt was 115,today is 88.I understand that this changings are part of these days.I don't know when will our counts stabil at safe zone.

I am still waiting for those counts to recover. They did come up for a few lab draws but now they seem to be dropping again. I try to tell myself look at the trend not the day to day lab work.

I have been battling this headache for almost two weeks. The intensity changes day to day. Anyone have any thoughts as to what this could be from? We are at a loss.

Laura

Hi Laura,

How is it going?Any news?

Headache
 

Laura,

I know this is way in left field, but, I was wondering if you're being treated with Acyclovir or something to prevent Shingles? The reason I'm asking is, although my friend did not have MDS, she had shingles in her head, and it still causes intense headaches... she had some rash on her face & head, but, when the rash went away, she still has a headache frequently.

I just wanted to ask if that had been considered at all, especially with low immunity during the transplant and the possibility of shingles.

I will keep you in my prayers.
Cindy

+131
 

Tserdogan (sorry I don't know what your real name is),
I just got back from the doctor today. My labs have plateaued. WBC mid 2 range, Plts 70s, HGB has been dropping (dropped 1 point in a week), ANC 1000-1300.

The doctor said they see patients where their counts plateau like this and he is satisfied with where my counts are now. I am just frustrated because right after transplant my counts were basically normal and now I am back to worrying about "low" counts again.

Tonight is my last dose of Prograf and he is hoping once I get off the Prograf my counts will increase. Today is day +131.

I also have major issues with low Potassium and Magnesium. I receive 4 grams iv daily of Magnesium and 100 meq of Potassium daily. He hopes that this will get better too once I am off the Prograf.

I was started on a BP medication and since then my headaches are pretty much nonexistent. They are blaming my high BP on the headaches.

Cindy, thanks for the information!! I will tuck that away for future reference.

Laura

P.S.
 

Cindy,
I forgot to mention that yes, I am taking Acyclovir twice a day to prevent Shingles, etc.
Laura

Hi Laura,

Yesterday i went my doctor.My counts are decrease for 20 days.my counts are like yours except my hemoglobin.i still transfuse red blood.My doctor said to me if your donor cell is ok(last donor cell score %99),no need to frustrate.He also said to me, may be viral infections and medications role decrease your counts and two years need to get your counts to be normal.
Patience is our medical:)

Serkan,

Hi laura. I had BP related headaches, too, for a while and they were absolutely excruciating so I really feel for you. They attributed my raised BP directly to the cyclosporin, and lo, as soon as I came off the cyclo a month or so ago my BP. Returned to normal and I didn't need the BP medication anymore.

(2 weeks later and I've still got those hives though,argh! I'm hoping the skin biopsy result comes back today so they can start treating them!)

Day +134 counts!!! (Yesterday)

WBC 3.2
HGB 12.1
PLT 91
ANC 1150

I am so happy to see them increase finally!!!
I just can't wait for the day for when my counts are nice and high like they were right after transplant!

Laura

Hi Laura,

I am very happy about your counts.Go Laura.:)

Day 141
 

I know I shouldn't complain, but I can't help but worry about my labs. I don't understand why they aren't increasing faster and I don't get why my ANC is starting to consistently drop again (990 today). I worry it is going to keep dropping or that this will be my new normal. I guess 990 is better than 200 where I was before transplant. It is just disappointing because I had such wonderful counts right after transplant. Where did they go?

Laura

Laura,

Are there any decreasing about red blood and plt?May be viral infection or medicals?What is your doctor saying?

You have been so helpful to me in your posts. I am by nature a do it now type of person and this journey with AA requires so much patience. Even when I try not to think about those labs, the concern about what they will be lurks just below the surface. I think your big picture looks great and you are in my thoughts .... peace and relief from worry are what I wish for you!

The last three labs my platelets have been 91, 88, 89, so they are staying about the same. But they are up from the 50s of where they used to be during the last time my counts all dropped off. (At that time my ANC dropped to where I needed to get Neupogen.) My HGB is 11.4 from 12.1 but this has been pretty steady in the 11 range. The doctors say they see this sometimes after transplant and they don't seem worried or concerned at this point. I guess I will just have to see what the trend is.

Thanks Jez!

Laura

My opinion the doctors want to find optimal medical ratios.İf the labs change they decrease or raise some medicals for me.İt is like matematics.So patience is needed at least one year for us labs stability.

Day +160
 

Bummer news today...I have dropped to 70 percent donor cells down from 100 percent. That probably explains the labs. I see my main doctor on Monday and can't wait to have a discussion with him on this. But I talked to another BMT staff today about it and she told me different thoughts on what could happen. Request more cells from the donor, wait and see, etc. So I have to wait to see what my main doctor says. I just had scope with biopsies and it still shows gut GVHD and waiting for CMV to come back.

Laura

Stay strong and don't give up... our mantra ... It is so hard to face the ups and downs... I know another "up" is just around the corner for you! Keep us posted re: your doctors' take on it all..

JEZ

Oh I'm sorry to hear that laura! What a drag after you'd been doing so well. But try not to let it get to you, after all, you might just need that boost from the donor to get everything moving again.

Hang in there, and try to remember all the good things you're thankful for today. Counting up the good stuff always helps me to focus on the positive even when things seem bleak. I wish I could give you a big hug!

Day +173
 

Sorry to leave everyone hanging. I don't have any news yet. My counts are the same (PLTs in the 70s, ANC bounces but latest was around 1100, HGB 10 range) so the doctor is encouraged they aren't dropping. He is testing my CD3 and CD33 chimerism. If the CD3 (T cells) is low, he might ask the donor for more cells. Hopefully will get the results back this week! The waiting is crazy.

Laura

Fingers crossed it's good news, Laura!

I merely found out today that it might take upwards of two weeks for my lung biopsy results to come back, as fungus takes forever to grow in the lab... :/

The waiting is the worse!!!!

I just found out I have zero donor T cells and 100 my own T-cells...will wait and see what the dr says later today...bummer.

Laura