transplant and hello

[tserdogan]

My name is Serkan.34 years old male.Today is 33. day after transplant.My counts good(WBC:2,9-PLT:82-hgb:9,6) but i have another problem may be you also had this problem.Nearly one month i have got cough problem and serious,controls have done,also no problem but i have got 24 hour cough.because of this i can not go to home.

[Birgitta-A]

Hi Serkan
Congratulation to the good SCT results! Can the cough depend on GVHD and be treated with drugs for GVHD like Prednisone?
Kind regards
Birgitta-A

[Ruth Cuadra]

Hello, Serkan.

Welcome to Marrowforums. You seem to have recovered your blood counts very quickly after your stem cell transplant!

It could be that your cough is a side effect of one or more of the medicines you are taking. The problem could be related to the use of immunosuppressive drugs like Cellcept (mycophenolate mofetil) or Sirolimus. I think you should ask your doctor about the possibility that your medicines are contributing to the problem.

Here are some references for your doctor on this topic. Unfortunately, the abstracts do not seem to be available online.

Mycophenolate mofetil and cough.
Elli A, Aroldi A, Montagnino G, Tarantino A, Ponticelli C.
Transplantation. 1998 Aug 15;66(3):40

Mycophenolate mofetil and cough in pediatric patients.
Fijo J, MartÃ*n Govantes J.
Nefrologia. 2000 May-Jun;20(3):297-8. Spanish.

Irritant cough and sub-febrile temperature under immunosuppression
Saner E, Vogt B, Mohaupt MG.
Praxis (Bern 1994). 2004 Feb 4;93(6):197-9.

Regards,
Ruth Cuadra

[tserdogan]

Hi Ruth and Brigitta,
good news Im going to out hospital today with my cough,
Ruth doctor said to me your opinion because check with torax is clear,maybe its allergic.

I'll give you details later,

god bless us.

[Ruth Cuadra]

Serkan, I am glad you are leaving the hospital even with your cough. Please take care of yourself and let us know how you are doing when you can.

Regards,
Ruth

[tserdogan]

Hi again,
i didn't sleep well yesterday but being out of hospital is good.I did not eat anything at hospital one month from the bmt.I eat from three days,it is hard to start eating,drinking and getting pills.do you have advices for this

[tserdogan]

Hi,
My coughs are nearly stopped.
I walk around my apartment every morning.My body balance is increasing slowly.
These days my counts are decreased to(wbc:1,8-plt:75-hmg:8,5).My doctor said to me;some of medicines decreased the blood making.For example:Valtrex and Tavanin i used to,we cut it off.Now we are waiting wednesday.We will check blood counts.I hope it will increase again.

[Ruth Cuadra]

Hi, Serkan.

How are you doing? I remember it was hard to eat after my transplant because nothing tasted very good. I didn't have much appetite but I liked things that were cold. I wasn't allowed to eat any fresh fruits or vegetables that couldn't be peeled. It was such a treat to have a salad on Day +100.

Regards,
Ruth

[tserdogan]

Hi Ruth,
Day 48 and my counts are like this.A little bit increasing wbc:2,0(1,8)-PLT:94(75)-HMG:8.0(8,5). I was VSAA till February 2009 and these counts are fantastic for me.
My blood is not increasing now and transfusion at week.
%98 donor cell.The doctor said to me we will check it every 20 day.
CMV is negative and we check it every week.
I think my counts are slowly increasing and may be this is more safe for me.

[Ruth Cuadra]

Hi, Serkan.

98% donor cells is excellent! I remember it took months for my platelets to get above 50, which was considered necessary for safety, so your 94 is amazing to me.

Regards,
Ruth

[tserdogan]

Hi Ruth,
I read your story when i was in day 0,and i felt very good.I look future optimistic.Also now when i ask you a question,you help us.Thank you for everything.

[tserdogan]

Hi,
After transplant day 60 and i still take red blood once a week,do you know when will i be red blood transfusion free?

[tserdogan]

Hi,

Day 79 and counts are like this.

Plt:118 raising
Hct:22,7 decreasing (i got one pocket blood at nearly ten days)
Hgb:7,2 decreasing
Wbc:6,0 raising
Neut:5,0 raising
Cmv:Negative

Biochemical is not perfect.Kreatin ad serum is fine.Bilrubin(1,83) and Alt(96) is a little bit high.

[Ruth Cuadra]

Hi, Serkan.

Even though your hemoglobin still on the low side, your other counts look good. How are you feeling? That's at least as important as how high your hemoglobin because everyone is different. It's not unusual to still have red blood transfusions for months after transplant. Since you are still less than 100 days out and have lots of platelets and white cells, I would say you are doing very well :)

Regards,
Ruth

[tserdogan]

Hi Ruth,

For example i took red blood today again.My donor blood A+,mine is 0+.Still i took 0+ red blood.My last donor cell ratio was 99 percent.Doctor says to me it will be nearly 90-120 days to change your blood type.i hope today was my last red bood transfusion:)
ı feel good when hemo is higher than 7,5.But standart range is 13-14.

My whites are decrease to 4 today but i know it can be...

Bye,

[Vera W]

Hi Serkan, thank you for writing me, all of this stuff just takes time. You have to take it a day at a time. My muscles are so shaky from the drugs that i fell on my deck when my legs buckled. I still have alot of fatigue but i keep moving. Hang in there Vera

[tserdogan]

Hi Vera,

Next tuesday is my 100 day bmb day.Till 15 day my plt decreased to 118.000-70.000.I will see what is going on my marrow.İ hope everything going well all for us.

Bye,

[tserdogan]

Hello again,

Things are interesting.Bmb checked and bone marrow working enough.Although my donor cell is %99 but counts are decreasing again.Plt decrease to 58,Wbc decrease to:1,9,Neut decrease to:1,2.Red blood transfusion still.Also still my blood type has not changed to donor.
No GVH and cmv.
Daily cellcept:2000 mg
Daily Sandumin Neoral:150 mg
Prednol:4 mg every other day

is there any ideas why my counts are not increasing.

[squirrellypoo]

I don't know about the counts, but if it makes you feel any better, my blood type is still my original one, too. (I'm at Day 115 today)

[Laura]

I have been having the same issues with counts dropping, increasing, dropping, plateauing, etc...my doctor says that they see this in people who have had transplant. This past Friday however my counts finally increased somewhat!!!! Just have faith...they will increase!!!

Laura

[Laura]

Side note:

I was also 95 percent donor in BM and 100 percent in the blood. But only 5 percent cellular. My doctor did a "fast" taper of the Prograf to try and get the counts to come back up. (My counts initially dropped pretty low...needed Neupogen.) It has been a very slow waiting game...waiting for them to increase.

Laura

[tserdogan]

Hi,

Thank you for replying Squirrellypoo and Laura.
My doctor changed my med dosages.
Prednol dose raised to 48 mg.
Cellcept dose decrease to 1000 mg
Sandumin Neoral same 150 mg.

We will see tuesday.What will change about counts.

Serkan,

[Laura]

I am not trying to be a downer...but when we tried dropping my Prograf, we did not see much of a change in my counts for a very long time (in my opinion). So try not to be too disappointed if there isn't a real change this next set of labs. I am really hoping they are higher though!!!

Laura

[tserdogan]

Hi Laura,

I think prednol works.My doctor thought that GVH decrease your counts and he raises to sandumin 150 to 250.Prednol dose decrease 48 to 32. Today counts Plt increase 58 to 61,Wbc raise1,9 to:4,2,Neut raise to 1,2 to 3,5.Next lab is saturday.

Serkan,

[Vera W]

Good Going!!

[Laura]

Great on the counts. I am not sure what Prednol is. But that is right, I forgot about that, GVHD can lower counts so increasing immunosuppressive can help with that. My mistake, sorry!

Laura

[tserdogan]

Thank you Vera and Laura.

Prednol is corticosteroid.
I think you are right Laura.My doctor also said that he raised to doses of 150 to 250 of Immunosuppressive.Prednol doses have to be decreased of side effects.

Serkan,

[tserdogan]

So my blood chimerism and bone marrow aspiration chimerism are both %100 donor cell.But my bone marrow biopsy shows that it only works %5.so why all my counts still down and raise enough.my doctor will give me donor lenfosit cell tomorrow.Have you any idea why my bone marrow still so low after 155 day?

[Laura]

Serkan,

I am not sure?!?! My last BMB showed me only at 5% too. It is a mystery.

So glad to hear you are 100 percent donor cells though!

What is Lefnosit?

Is that more donor cells?

Laura

[tserdogan]

Hello Laura,

My doctor gave me more donor cells but minimum dose(10 mg) last saturday to increase bm working enough.But it has risks for gvh.they will watch 2-3 months to see what is going on.

[Laura]

Yes, more donor cells has a high risk of gvhd. I will be praying you don't get any! I hope this works and your counts increase. I am assuming the cells were from your mom again?

Laura

[tserdogan]

Hl Laura,
we got more cells to my mother when transplant started six month ago and the hospital keep donor cells 2 years.i hope no need to use this cells anymore and wish bone marrow starts normally work.l also wonder what dld your doctor says to you about %5 bone marrow working

[Laura]

He didn't have much of an explanation for it either.
Laura

[tserdogan]

Hi All,

Still counts at low side.
Last thursday counts has measured and my hmg 9,4.but HCT is 17.The doctor look at me and these counts are not true.He looks diabetes and something about other organs.Some of friends of this site knew,i have complaints about leg and arm muscles last days.My muscles are so weak.I am at hospital for three days to decreased diabets level.
For three days i can not walk but i tried to walk.i take pain killer and tried to walk again at hospital room.
i can not understand diabet (type 2 diabets)how can be easily change to negative.

Serkan.

[Laura]

Serkan,
Is the diabetes from the steroids? Sorry to hear the latest.
Laura

[Vera W]

They told me that the immune suppressants can cause diabetes and I am sure that includes steroids . I was tested for it but it came back negative. I had my 5th BMB Monday and I am anxious to see the results. Almost every one of my meds say that they can cause muscle weakness. My legs are better but my stomach muscles, hips and lower back are killing me, I paid a visit to my primary care doc and we talked about pain relievers. I am allergic to all nsaids, they don't really want me to take Tylenol products, they recently gave me Oxycontin and it is a nightmare. It makes me feei like I am bouncing off the walls and the pain stays, My primary care doc gave me stronger vicadin so I only need 2 and the acetaminophen is under 1000 and 3 half muscle relaxers. It worked great I feel the best I have felt yet! But I hurt myself again , It doesn't take much. My liver enzymes are still slowly edging up. If it keeps going he said he will put me on cellcep but he is thrilled with my progress and said I was very fortunate to have GVH at the level I do and that it will help protect me from the bad cells ever coming back, my counts are pretty stable, Here is what they were last week.
WBC4.5...RBC 3.89...hemoglobin13.6...Hemocret 39.1%...Plates,,,144...nuets 2.98...lymphs ,88 ( THIS IS MY LOWEST READING) i AM USUALLY ABOUT 1.06. hOPE YOUR MUSCLES WILL GET BETTER FOR YOULove Vera

[tserdogan]

Hello,

i am still at hospital.Medications got worked they decreased prednol level daily to 32 mg to 24 mg. and fırst day they gave me many liquids to decreased anormal counts.Now four days they used insulin shots for stable to insulin counts.For two days i can walk again at hospital room, but still i dont know how can i go to home with walking.May be tomorrow i feel myself much more stronger.Pain killers got worked now.

Do you get your counts today Vera?

Laura, doctors thougt that it may be prednol.But i dont undertsand how can not it seen by me and doctors.i went hospital with car and i drove it.i am waiting at hospital 3-or 4 hours.At the end doctor said i am at coma.Thanks GOD protected me before and still protect.

[Vera W]

fhose counts were from Monday the 24th. Next test next Monday

[tserdogan]

Yes my friends,

Diabetes make muscles weak.And if my diabete counts come to normal counts,i can walk easily except stairs.Now medications start,it will come to normal.All these diabet procedure decreased my blood counts easily.i took three package of red blood.i did not get red blood for 1 month before the diabet.

My doctor decreased my prednol level 32 mg to 16 mg.i knew if my prednol level decrease under 28 mg,my plt and wbc may decrease slowly.Because of this my Hemo gave me a little bit Donor lenfosit this saturday.

We are still waiting of the changing of blood type.if it change,it may be more easy for health.May be it will effect the bone marrow working positively.Last controls my bone marrow work with % 5.

[Laura]

Serkan,
Sorry to hear the troubles you are having. Your labs are still low? Are they going to do another boost for you? Best wishes.
Laura

[tserdogan]

Laura,

Labs are still so low.Wait and see procedure start.i took donor lenfosit this saturday.

Today is my first year anniversary with SAA.i went to hospital and doctor looked my labs.He said your plt score was 2k.Time stopped at the moment for me.Now i am waiting time to start again.

[squirrellypoo]

Hi Serkan.

I know how you feel about the diagnosis anniversary - I had mine a few months ago. But even with your current hiccups, surely you're doing better now, and with a more hopeful outlook on the future than you were this time last year?

Hopefully these new cells from the donor will be just the boost you need.

[tserdogan]

Hi Melissa,

I am waiting my donor(my mom is my donor.And her stem cell is coy) to boost.I read stories and positive change start suddenly.

[tserdogan]

hi all,
is anyone know second transplant procedure?my doctor said to me you still get red blood and we will wait and see couple of months if nothing is change we have to think second transplant.this transpant is one day chemo than transplant and 15 day hospital.

[squirrellypoo]

Hi Serkan.

We haven't heard from you in a while and I was just wondering how you were doing. Has the second set of cells from your mother helped things at all?

[tserdogan]

Hi,

My last counts(21 days ago) plt:50 K,wbc:4(around).Blood transfusion is stil 3 package in a month.Still my blood group,not donor.
My hemo said we have to watch and wait.Nothing to do now.
i started to work part time.3-4 days at week.Only four hours at the office.

[squirrellypoo]

oh that's great to hear you're back at work, I found it to be such a relief to think about things that weren't about being sick. It's a lot of effort but a nice distraction.

I'm sorry to hear you're still on transfusions, but your WBC look great at least!

[tserdogan]

Hi Everyone,

Today is 300.day and Our mini transplant team knows that my blood counts are very low.Yesterday was my appointment day with my transplant doctor.
He said that at the end of 10 month your donor stem cell beat you,and your blood type is going to change with your donor blood type.My last red blood count (hemo) is 9,3.My last transfusion is at 15 april.Apx 1 month.

Sometimes i have bad feelings about not changing my blood type and low counts.But hope and believing God keep me strong.Now i feel something change at positive side...:)

[squirrellypoo]

Hi Serkan.

Thanks for checking in, I was thinking about you. Try not to think about the bad side of things or what might happen. It's really hard, I know, but sometimes you need other people to step back and point out how far you've come and how great you're doing. All you can do is take each day as it comes, and don't beat yourself up if you have a bad day. Each of us is on our own separate journey, and it's not a competition or a race.

melissa

[tserdogan]

Yes dear friends,

Last year at this moments my blood counts are very low.I remember my wbc is 0,1 and my neut. is 0,03.My plt is 5k and my hemoglobin is 5,5 before the chemo.Now my counts is not normal still but it is hopeful for me.
My plt is 80
My hemo:12,4
My wbc:2,01

Thank God for this counts.

Thank this site and mini transplant team for the support.

[squirrellypoo]

Hooray! Happy rebirthday Serkan!! I hope you can take the time to celebrate and reflect on how far you've come. :D

[Laura]

Serkan!!! Great to hear from you! Happy rebirthday!!!!!!!!! I hope you can do something great for your birthday.

Laura

[Ruth Cuadra]

Congratulations, Serkan. You are such a brave warrior to have pursued your recovery and won! Your counts look very good compared to a year ago. I hope the coming year brings you continued improvements.

Regards,
Ruth

[tserdogan]

Thank all of you,

Last tuesday i had apointment with my doctor.My last counts are very positive for me and my doctor.Nearlly 400 day has passed.

My hemo is 14.5
Plt is 100
Wbc is 3,7

But my doctor is a little bit anxious about my liver.My liver enzymes are high.He is thinking a gvh.And he wanted ultrason about my liver and gall bladder.They are clear thank God.

He added Cellcept.i have taken 1,5g daily cellcept one week.İf the enzymes are same,He may be, want biopsy.

Whatever one week later may be i can give you more info about liver enzymes.

[squirrellypoo]

Thanks for the update, Serkan - those number are great! You must be really pleased. :)

Have your doctors ruled out infections or drug reactions for your liver results? I had really high liver function tests that came out of nowhere last September, and they did everything from ultrasounds (with high-contrast dye), so many dye-assisted CT scans I lost count, plus a CT-assisted liver biopsy, and even a lung biopsy, plus months of a daily antifungal IVs after weeks of a strong IV antibiotic cocktail didn't reduce them.

They're only just approaching normal levels now, and they never did positively conclude what caused them to go so high in the first place. BUT as soon as I stopped the IV antifungal (Caspofungin), they immediately started to come down way quicker than they were before, so it may be that it was actually making things worse instead of better.

From my point of view, the ultrasounds and CT scans were painless, and the liver biopsy was just some needles being jabbed through my abdomen (so not too bad), but the lung biopsy was super painful with a full 2 weeks of pain before I could stop with the 24hr pain medication.

So it's worth asking why they automatically think it's GvH and not other things if it means you're spared some pain!

melissa

[tserdogan]

Yes Melissa,i am very pleased about counts.

i am scared about liver biopsy.i will try cellcept one week.if it solves the problem,great for me.Melissa, do you remember your liver counts.
My ALP score is 230(0-129)
ALT score is 240(41-89)

[Laura]

Hi Serkan,

It is so nice to see your counts so high. I bet that feels good?

Sorry to hear about liver. Are you on antifungals? Like Melissa (in a way) my liver enzymes sky rocketed when on a certain antifungal and dropped as soon as I was on it.

Laura

[tserdogan]

Hi Laura,

i dont use any antifungal medications.i only use sandumin 3*25 and ursofalk.
if you ask me i have fungus,i dont know i have to ask my doctor to check fungus...

[Laura]

Just wondering if you were on the med as it can cause high liver functions. But if you are not. Then not sure what is causing it?

Laura

[tserdogan]

Yes Laura,you are right.
next wednesday biochemical will show us if it is gvh or not.

[mnsnyl]

Serkan are you from Turkey?

[tserdogan]

yes,i am.istanbul.where are you from mnsnyl?

[Debbie W]

Gorgeous city, we were lucky enough to visit, but only for a day and would love to return. Continued success with your transplant.

Best regards,
Debbie

[tserdogan]

Thank you Debbie.i hope you will come again to İstanbul.One day is not enough.At least one week needed.Many places you have to see İn İstanbul....

[Debbie W]

We would love to come for a week! My sister has lived in the UK for over 20 years and Istanbul is one of, if not her favorite, city to vistit.

My husband is just starting the transplant process so we know it will be not be soon, but we would love to have a longer stay.

Wishing you continued success :)

[tserdogan]

:mad:
Hi,

i am very anxious ,My last liver enzymes are thirty times more.i will visit my transplant doctor tomorrow,and i hope i will learn what is going on my enzymes(Ast;Alt)

[Laura]

Have they checked to see if it is GVHD? I would be anxious too! I hope everything is okay. Keep us updated.

Laura

[Debbie W]

You made me google elevated liver enzymes after stem cell transplant and I came across this recent article.

I'm also curious because I had just asked about my husband's elevated Ferritin level.

Good luck and let us know what the doctor says.

http://www.hindawi.com/journals/ah/2010/345756.html

Review Article
Iron Overload in Patients Undergoing Hematopoietic Stem Cell Transplantation
Vinod Pullarkat
Department of Hematology and Hematopoietic Cell Transplantation, City of Hope Medical Center, 150 East Duarte Road, Duarte, CA 91010, USA

The following paragraph is from this section ...

"5. Iron Overload in the Post-HSCT Period"

"...Iron overload is known to contribute to the etiology of liver dysfunction chiefly manifesting as elevated transaminases, a common chronic complication occurring in 50%–72% of patients [62, 63]. Iron overload therefore can mimic exacerbation of hepatic GVHD following HSCT, leading to unnecessary continuation or intensification of immunosuppressive therapy [64]. In a study assessing the role of liver biopsy in evaluating the cause of elevated transaminases in post-HSCT patients, 33% of biopsies had evidence of iron overload and no other pathologic findings [63]. Normalization in liver enzymes has been demonstrated with phlebotomy and iron chelation therapy [64, 65]. The role of persistent iron overload in infections that occur late after HSCT, particularly in patients with chronic GVHD requires further investigation..."


:mad:
Hi,

i am very anxious ,My last liver enzymes are thirty times more.i will visit my transplant doctor tomorrow,and i hope i will learn what is going on my enzymes(Ast;Alt)

[tserdogan]

thanks Debbie for the link,i forward it to my doctor.Laura,it looks like gvh.no hepatitis b has seen.Now i am starting prednol 64 mg daily.and for only three day.if it does not work,i will stay 15 day at hospital.everyone knows prednol has got side effects and it is scaring me again

[tserdogan]

Hello again,

İ have question.What is zona.i know it is virus called herpes zoster.and i have got it five days.pain and irritation is incredible.
my doctor gave me some medications,but still they are still reproduce.
is there any advice?

if it is not recover,i turn back to hospital for iv therapy:(

[Greg H]

Hi Serkan!
I think what you describe is known in English as shingles. It is a herpes zoster flair up, often of a latent virus population that was expressed in childhood as chicken pox.

The virus lies dormant in the nerve fibers near the spine. When it deactivated. It creeps up the nerve fibers to the skin surface where it erupts in a painful rash localized to the portion of the body served by the particular nerve cluster that is affected. Immunosuppression can allow the dormant virus population to expand. The flare-up generally does have a finite lifespan of two to four weeks.

Take care!

Greg

[Neil Cuadra]

Serkan,

I'm sorry to hear that you have this infection. Herpes zoster is more commonly called shingles (http://www.ninds.nih.gov/disorders/shingles/shingles.htm), a skin condition caused by a virus. Shingles can infect anyone, but it's especially common in post-transplant patients while their immune system is suppressed. It's important to get treatment, which may be with anti-viral drugs.

You'll find more information about it if you use the word "shingles" when you search Marrowforums or other websites.

[tserdogan]

Thank both of you.Now i am searching it in shingles.
i use valtrex for five days.i suppose at least minimum one week is waiting needed.

[Laura]

We have not heard from you in awhile. How are you? How are counts? Laura

[tserdogan]

Thank you Laura.
25 months has passed from post transplant.Blood counts are very near to normal range.
Only PLt is under normal range(135.000)
Gvh at my liver.Enzymes are high.So i still use low dose prednol.

[squirrellypoo]

Hi Serkan.

That's great news about your counts! Even those platelets are looking pretty good. Thanks for checking in, I think about you often.

melissa