ATG/Cyclosporine Recovery

[clairekim]

Hello,

My wife recieved her horse ATG during the Thanskgiving break 2011. Her counts were dropped way down after the ATG (PLT 2, WBC 0.3, NEUT 0.1). It's been a month now and we start see the NEUT count slowly moving up. It's been 0.1 for 3 weeks (CBC taken 3 times a week) and then went to 0.2 to 0.4 to 0.7. Her PLT count ticked up to 3 but not moving from there. She's receiving PLT transfusion every other day and red blood almost every 10 days.

Can someone tell me if the NEUT count is an indication that things are slowly recovering? Why isn't her PLT count not moving?

How often do you receive transfusions? Doctors say we need transfusion every other day, but we would like to cut down if possible.

Thank you!

[Karenish]

very early days to get too hung up on counts although we have all been there. my neuts and whites were the first to move up out of critical, but plts and hb have only just started to recover at 10 months post ATG - at first blood trans was being done as soon as I hit 7.5hb and plts when I was around 12....but now my plts have held around 26 and hb 8.5 so trans are down to no plts for over 3 weeks and blood around six weeks......hopefully these will become non existent in the next few weeks. god willing. hang on in there - plts are important as they stop internal bleeds...but hb can drop to around 8 before you start feeling a bit weak and poorly xxx

[Hawaii Bill]

Hi clairekim,

From reading others' posts and my own experience, the time is takes for a response varies from person to person. There are cases where response occurs well after 6 months post-ATG. In my own case, my need for transfusions was reduced in less than a month, but I was taking Neupogen shots every day to "reconstitute" my bone marrow (that is not a recommended practice any more, but I think it should be an option given to the patient).

Right after the ATG and before my response, my need for transfusions actually increased, especially the platelets. I think part of this is the ATG (it is notorious for this effect on platelets), and I think the other part is simply the AA - our stem cell population is vastly reduced as a result of the disease and it takes REAL time for it to recover. So even though the ATG wipes out the bad T-cells, it does NOTHING to help the bone marrow directly.

I think the general idea is that the whites will recover first, followed by the reds, then the platelets. One should not expect the counts to recover to full normal, although it does happen. My HGB count is still slightly below normal, as are my platelets.

DO keep a count of the number of transfusions. This is important later in case of iron overload.

DO make sure the blood products are irradiated.

HTH

[clairekim]

Hello Karenish and Hawaii Bill,

Thank you for your comments.

It's good to know that what we see is somewhat expected. She's also taking Neupogen shots so her WBC count has been normal for awhile. I've been tracking her NEUT count instead because of this.

She's taking lots and lots of transfusions, a point that really worries me. Does PLT transfusions also cause iron build up?

Thank you all,

[KimO]

After ATG my daughter's need for transfusions -- both platelets and RBC -- increased dramatically. We felt like we had jumped out of the frying pan and into the fire. Unfortunately we didn't know about this forum then or we could have been reassured that this was very common. She was borderline for needing another tranfusion about 5 1/2 weeks out from ATG and we decided to wait until after the weekend for the transfusion. That ended up being when her platelets actually started to increase and her reds held stable. She never had that transfusion and hasn't needed another transfusion since -- even through a scary relapse last year. I would echo what others have said that you are still VERY early in the process. It is really hard to wait, but hang in there and visit here frequently for lots of great encouragement!

[clairekim]

Hi Kim,

I am so sorry about your daughter. Hopefully she's doing fine now....

How often did she have to get transfusions after ATG? My wife is getting platelet transfusion every other day and red blood about every 10 days. After 5 and half weeks, did the transfusion frequency drop dramatically?

Thanks for your help,
David Kim

[Hawaii Bill]

Hi again,

Platelet transfusions are not the problem with iron overload. It's the red blood product that contains iron that goes right into the bloodstream without being metabolized, as is the case with iron in foods like spinach.

I think it is great that you are getting Neupogen. That will hopefully help the stem cell population recover more quickly, thus contributing to the response.

I was getting platelets almost every day post-ATG. The thing about platelets is that they only live 5 days. By the time you get the transfusion, the platelets you are getting could have only 2-3 days of life remaining. There was one morning in the hospital that my platelet count was zero!!!

I did not know about this site post-ATG, and it was VERY depressing to see my need for platelets go from once a week to nearly every day after the ATG; but reading others' experiences tells me that what I went through was entirely normal.

[clairekim]

HI Bill,

Indeed the Neupogen is helping with WBC. Our neutrophil count went to 0.1 after ATG. Stayed there for about 3 weeks. All of sudden, it jumped to 0.2 to 0.4 to 0.7. Today, it read 1.5! Her WBC count is 5.7.

Our platelet went down to 1 during ATG. Post ATG, it stayed at 2. From a week ago, it went to 3. Today it was 4. Doctor says they are all the same number unless it goes to at least teens, but we are thinking it's a positive trend!

I know it takes months before we could be transfusion independent... but we can't seem to ignore these numbers... it's a real tough battle.

Also, our doctor is saying transplant is needed for her... why? why can't we stay with ATG and see if it helps? Is ti becasue my wife is still considered young? She's 35 but looks like a college kid because she's so petite.

Good luck to all! We will prevail!

[KimO]

Hi David,

My daughter is doing well, thanks for asking. Her counts are low normal and she was able to graduate from college last spring. She is on a very very slow taper of the cyclosporine.

Regarding your question, Shauna was getting platelets 2-3 times per week after ATG where she had only had two platelet transfusions in total before ATG. Once her platelets started increasing, her counts rose quickly enough that she did not need another transfusion. However, the lowest her platelets ever got was 6 so it sounds like your wife is more severe in that regard. Maybe the severity of her platelet count is contributing to the doctors suggesting transplant? Although it is way too early to say whether ATG has worked or not for her, it is common for doctors to begin a search for a match for transplant concurrently with the ATG treatment. I know that's what happened for Shauna and although none of her three siblings were a match, doctors were able to identify that she had more than one unrelated match about the time she began ATG. It was nice to know that there were options while we were waiting to see if ATG would work.