Important question about my dads transplant

[mdsSUCKS]

My dad's numbers were on the rise for the past few weeks after transplant.

white blood peaked at 4.0, but last week they dropped to a 1.3 and today they are down to a 0.3

is this normal? does this mean the transplant did not work?

[sstewart09]

Has he been getting neopogen shots? Once these are stopped, white counts will drop. Additionally shots may be given until body can catch up.

[mdsSUCKS]

Yes, he was given neupogen shots for about a week when he was in the hospital. He hasnt gotten any since he's been discharged, which was a month ago. His wbc kept going up without the shots, but suddenly they dropped in the last 2 weeks.

I should also note he's had a mild case of GVHD and he has been taking steroids, it seems ever since he started taking those steroids his numbers have dropped. Is there any way the numbers dropping are from the steroids?

[DanL]

I understand that the fluctuations in all counts are pretty wild sometimes post transplant. The low WBC is probably more a function of the GVHD as opposed to the steroids. I am assuming that you are speaking of something like prednisone.

"Corticosteroids have a profound effect on the concentration of peripheral blood leukocytes. Lymphocyte, monocyte, and basophil counts decrease in response to corticosteroid administration, while neutrophil counts increase."

Cyclosporine also has the impact of attacking lymphocytes, but not necessarily neutrophils.

Best thing to do is call the clinic and ask them your questions so that they can tell you what they think is going on and see if it is a concern or considered normal in their experience.

Another possibility is that the other immune suppressive drugs may need some adjustment.

Good luck getting to the bottom of this.

[Rasmusbja]

Hi

I had my transplant 9/30/13, and two months later i got a really nasty round of GVHD of the gut. Fortunately i responded very well to steroids, and the GVHD was under control after a week or so.

The GVHD was very frightening itself, and on top of this my blood counts just crashed. I started being transfusion dependent again, and my WBC wasn't doing very well neither.

After the treatment all numbers started climbing back up slowly again, and I am now back to normal again. So it is definitely too soon for you to say that the transplant has failed.

[Neil Cuadra]

Originally Posted by Rasmusbja

The GVHD was very frightening itself, and on top of this my blood counts just crashed. I started being transfusion dependent again, and my WBC wasn't doing very well neither.

After the treatment all numbers started climbing back up slowly again, and I am now back to normal again. So it is definitely too soon for you to say that the transplant has failed.

Like you, my wife had her counts crash at about the 2-month mark. She needed transfusions again but then her counts climbed back again. There's something about the Day 60 to Day 70 period that produces this bump in the recovery road. We weren't prepared for it at the time, but now we know that we weren't the only ones. Neither were you.

[mdsSUCKS]

thanks for the info everyone.

His doc gave him neupogen shots yesterday hoping his WBC would climb. But they actually dropped from 0.3 to 0.2 so he is now awaiting a bone marrow biopsy to see whats going on.

[Birgitta-A]

Hi mdsSUCKS,
When your dad's neutrophils are so low he could get Neupogen every day until they hopefully increase. i have got Neupogen every day several times when I had neutropenia (too low neutrophils).
Kind regards
Birgitta-A

[jhasc]

Hi
My Grand Father is suffering from This disease MDS-RAEB1 after doing Bone marrow doctor .The chemo was done ECITABINE/DECITEX(LYOPHILIZED) with this Medicine and this was given for 4 month . He Got Recovered and Both the Hemoglobin and Platelet recovered .After Completion of Medicine ,Again the bone marrow was done to test the actual condition reports shows the Positive effect .But again after 2 Month He has came to same condition and his health is deteriorating . Present his platelet is 40k and Hemo is 4. Please Advice Me what to do?? shall we do the chemo again or can we try something else? He is at age of 75
Present Platelet count on 5-3-2014
RBC:4.8
WBC:14700
Platelet:30k

[Mseth]

Originally Posted by jhasc

Hi
My Grand Father is suffering from This disease MDS-RAEB1 after doing Bone marrow doctor .The chemo was done ECITABINE/DECITEX(LYOPHILIZED) with this Medicine and this was given for 4 month . He Got Recovered and Both the Hemoglobin and Platelet recovered .After Completion of Medicine ,Again the bone marrow was done to test the actual condition reports shows the Positive effect .But again after 2 Month He has came to same condition and his health is deteriorating . Present his platelet is 40k and Hemo is 4. Please Advice Me what to do?? shall we do the chemo again or can we try something else? He is at age of 75
Present Platelet count on 5-3-2014
RBC:4.8
WBC:14700
Platelet:30k

Hello jhasc,

Sorry that your grandfather has this problem. You mention Hemo of 4 and then RBC of 4.8. RBC of 4.8 is good, but hemo of 4 is very low. If he has low hemoglobin and platelets he should be getting a transfusion with pRBC and platelet while you decide what other treatment to follow. For low WBC, injection Neupogen can be tried.
I do not have much direct knowledge but as I understand, internationally Vidaza and Decitabine are two options, but in India we have only the Decitabine option. Also, as far as I know, Decitabine is given every month, it cannot be discontinued. Did they discontinue after 4 months? Transplant is not an option at his age in India. What do the doctors suggest?
You can also start a new thread with your questions.

[mdsSUCKS]

So it looks like my dad has a virus called VRE which is attacking and suppressing his cells I guess. I'm not entirely sure.

They will be doing a second "mini" transplant next week using my brother's or my bone marrow.

Anyone ever have 2 transplants? Or info on a "mini" transplant. My biggest question is, if the first one didnt work why would this one? My whole family is very scared and worried

[mdsSUCKS]

The doctors have declared my dads first transplant a "graft failure". He will be getting his second transplant this Thursday using my brother's cells. Please keep him/us in your prayers.

Thanks everyone.

[Momhope]

MDSucks,
hope everything is well wuth your Dad, we are praying for him and your family.

[mdsSUCKS]

Dad's second transplant took place last Thursday, and things took a turn for the worse on Tuesday. He is now basically in a coma. He has an infection in his blood that the doctors are hoping anti biotics can kill.

Has anyone ever experienced a coma after transplant? Is this the end or can he snap out of it?

[Bhutt]

Sorry your dad is having a tough time. Will keep him and your family in our prayers.

Blair

[SLB]

Sorry to hear about your dad.. Not sure if this is helpful but after my second round of induction chemo, when my neutrophils were zero, I also had a blood infection that caused my blood pressure to drop to dangerously low levels. While I was never in a coma, I was very sick and was in the ICU for several days. Antibiotics eventually got the infection under control. Best of luck, hope it all turns around for your dad.

[Mseth]

Hope your Dad will be better soon!

[mdsSUCKS]

thanks for the love everyone, it makes all of this a little easier.

I'm happy to say my dad was put on dialysis to rid his body of toxins, which his kidneys were having trouble doing...and on Saturday he woke up. He is nowhere near 100% but at least he is awake. Today he is at day + 12 of his second transplant, so lets hope his numbers start coming up soon.

Again, thanks for the love and support everyone

[DanL]

That is great news that he woke up and is responding to dialysis. I will continue sending prayers yours and his way.

[sbk007]

This is great news. Those infections knock you out so maybe he wasn't in a comma just knocked out by the blood infection. Sounds like your dad is a fighter and I pray he continues to beat the piss out of the disease.

[mdsSUCKS]

My dad isnt doing too great, he has a bad case of mucusitis which is causing him extreme chest and throat pain. He hasnt been able to swallow anything by mouth. He has been bed ridden for the past 4 days and is completely weak and tired.

Today is day +21 of his second transplant and his blood counts havent moved at all. I'm starting to give up hope at this point.

I've read that HaploIdentical transplants can take longer than normal for the cells to graft. Can anyone shed some light on that? I feel like at day 21 his blood counts should show some improvement.

Thanks

[DanL]

mdsSucks

Don't give up hope. I don't know much about the haploidentical transplants. For the mucositis, I was on Fentanyl and then had oxycodone when needed so that I could eat and use the restroom as needed. Not sure if your father is on both or not.

I wish him well.

[SLB]

Sorry to hear your dad is having such a rough time. I, too was unable to eat or drink even with a fentanyl pump. They didn't hesitate to put me on TPI feeds for the days that I needed it.. As soon as my white cells started coming back the mucositus started clearing up. Sending positive vibes to your dad...

[mdsSUCKS]

Hey everyone, sad to say my dad passed away yesterday morning. Im absolutely crushed and heart broken

[Donna T]

So very sorry to hear of your Dads passing. Praying for comfort and peace for you.