8 weeks post ATG- please advise

[Rentzi]

Hello. We are 8 weeks out from my husband's treatment with ATG and cyclosporine at Mayo Clinic in Rochester. He has finished his last dose of prednisone last Friday (10 mg). On Monday his platelet count was 21 after a Friday count of 16. We were quite hopeful that he had made his own, but it seems to be a lab mistake as today (Wednesday) it was 11. Actually all his labs were down today and we are discouraged. His white count is at a 2 week low at 2.0. His hemoglobin was 7.7, platelets 11, and ANC 742 down from 1067 last week. I think I have read here that after prednisone there is a drop and hopefully we will go up. He was taken off levaquin and flucanozole. Only on cyclosporine, Prilosec, aclovir, and a blood pressure medicine. Our hematologist is wondering if Mayo is planning on changing his meds as he likes to see some progress by 8 weeks. We go back to Mayo on Nov. 10. and will be meeting with a hematologist and a thoracic surgeon as there is still the issue of the thymoma. Our hematologist brought up promacta. Do you think it's too early to switch meds up? Any advice you can give would be greatly appreciated.

[triumphe64]

Maybe tapering the prednisone a little slower would help.

[Hopeful]

Hi Rentzi,

This is the hard part...waiting. Many people are still transfusion dependent at 8 weeks. So do not panic! A response at 3 months is considered early. 6-9 months is more typical. For some people, it is even longer. Also, keep in mind that a response does not necessarily mean near normal counts. The first thing to hope for is transfusion independence.

Prednisone does falsely elevate the ANC. Look for the real increases now that he is off of it.

Good luck!

[KMac]

Hi Rentzi,

My counts were significantly worse than your husband's 8 weeks out, and now 31 months out last week they were Hgb 15, Plt 180, ANC 1140. I did see a drop after removal of the prednisone as well. It can be an extremely slow process to get better.

I noticed you mentioned Levaquin. After about 2 months on that, I started getting pains in the tendons by my ankle. I had read that is a potentially serious side effect, mentioned that to a nurse at a checkup, and they switched me to a different med immediately, basically saying "I'm very glad you told us, as that could be a sign of a side effect of Levaquin which could lead to serious tendon damage".

So it is very important to watch out for adverse side effects and report symptoms.

[Rentzi]

Well, cbc today shows further decrease in white blood count, down to 1.9, ANC 608. WBC has been falling steadily over the last week and a half. Last Friday was his last dose of prednisone. I would imagine if his ANC drops further he will have to go back on Levaquin and Flucanozole. Today his platelets were up to 14 after being 11 on Wednesday. Is that normal for them to rise and drop like this? This is our first experience where we have seen rises in platelets on his own without a transfusion. What can I do as a caregiver to help keep his spirits up? I have noticed how these drops are causing him to be discouraged. I keep telling him that several of you experienced the drops after prednisone too. If you could tell me what you as patients needed from your significant others, I would greatly appreciate it. I adore this man and it's hard to see him struggling so.

[Chirley]

Platelet counts can be very dependant on the degree of hydration. If you are well hydrated the blood is more dilute and the platelet count can appear a little lower whereas if you have had less to drink or the IV fluid has been reduced the blood can be a little more concentrated and the platelet count can seem a little higher. Minor fluctuations can be false. You need to check trends or major unexplainable variations in results.

Prednisone withdrawal definitely causes reduction in neutrophil counts and is a perfectly normal and expected reaction.

[KMac]

Hi Rentzi,

I think seeing a rise in platelets over 2 days is a good sign. A very small rise in platelets after about 8 weeks was my first small sign that I was responding to treatment (besides when on the prednisone).

On the prednisone, my ANC rose from 0 to 600, and then very quickly began to plummet back towards 0 once the prednisone was removed. Even 6+ months after treatment my ANC would regularly fall below 300. So when I see the ANC numbers your husband has, even after the drop off post-prednisone, they sound pretty good to me.

My doctor was considering doing a second ATG at 6 months, and they I finally started getting much better.

I know the NIH studies have that 3 month response marker, and when I was still transfusion dependent at 3 months, I was very depressed and figured I'd failed treatment. But I hear anecdotally so many other stories of slow ATG responses, that ultimately are good responses all the same.

Your husband is very fortunate to have you there as a caring advocate. As to what he may need to help raise his spirits, your love and care for him might be doing that already - but it is such a slow and miserable process waiting to get better, wondering if it will work, that I think patients are almost bound to become distressed.

When I felt distressed, it was sometimes helpful to see stories of aplastic anemia survivors who had regained their health. Here is one about a woman post-ATG who was healthy enough to walk across the entire country to raise awareness of aplastic anemia:

http://madisoncourier.com/print.asp?...bSectionID=253

But of course the ATG may not ultimately work. When I thought about that and felt distressed, I found it would help some to see stories about aplastic anemia transplant survivors. Here is an especially inspiring one:

http://www.youtube.com/watch?v=Z_PtIRRo_ao

...there are many other success stories out there as well. Both of the stories above are of people who only got better slowly, and had to fight to get their health back, and still they succeeded at that goal.

[Hopeful]

Hi Rentzi,

When I was platelet dependent, my platelets only went down. I didn't see the normal rise and falls that I see nowadays. I know that everyone is different, but I think a 3k rise in his platelets at this stage is a very good sign

Stay positive!

[Rentzi]

So, 10 weeks out and heading back to Rochester in a week. Rory has not needed platelets for almost two weeks. Platelets jump up and down around the 20 mark. What count hovers around 1.5-2 and ANC 600 to 1100. Red blood transfusion once a week to 9 days. Nothing seems to be going up, just hovering around the same. I guess the platelets are a good sign... just want to see more improvements.... I don't know if they will be more aggressive with the thymoma. Are we ok?

[Rentzi]

We are officially three months out after ATG. His last labs were WBC 2.6, Hemaglobin- 8.7, Platelets 30, and ANC 1404. I am pleased with these counts and I think it is a good sign. He hasn't had a transfusion of any sort for 20 days. The issue at hand now is the thymoma. We are scheduled to return to Mayo Clinic in January for a PET scan to see if the growth is "hot". But my understanding is that even if it is not cancerous it can still send faulty information to the immune system and attack the marrow. Our local hematologist would like to get it out now. Mayo wants to wait until platelets are consistently over 50 before considering surgery. Should I be reaching out to other physicians for any insight. The reality is that the doctors we have been seeing do not know. I have scoured the internet and have found several articles where thymoma is indicated with AA. Would love to hear your advice. Thank you.

[curlygirl]

Those counts do look like a good sign! I can see both sides of the coin - removing the thymoma now in the hopes that it won't spread and could help with recovering, and waiting until your husband has 50k platelets because it will limit platelet transfusions so that he hopefully won't develop antibodies to donated platelets (in case he needs them again later.) I think any tumor can cause faulty info to the immune system like you say or, on the flip side, having a tumor means there is a dysfunction in the immune system to begin with. This is going to sound completely goofy but my son has had two plantars warts for 3 years, prior to having AA. When he was on Acyclovir just after ATG for a week (for a virus), the warts started going away nicely, then they took him off of it they came back. Oddly while on acyclovir his red blood cell morphology showed up as normal on his CDC and reverted to abnormal when he went off of it. They are stubborn things, I've tried attacking them for the last year - we've used the salicylic acid pads, freezing them off, Vicks even (since my older's son wart went away with Vick's). It sounds completely silly but what are warts? They're benign tumors. And what do tumors do? They hijack your red blood cells through angiogenisis to feed blood into the tumor, and also highjack platelets and mononuclear lymphocytes and cause them to aggregate around the tumor to keep it alive. The main reason I'm typing all this is to explain that I've read alot about it recently and found this fascinating article among many: "Platelets: Guardians of Tumor Vasculature: http://cancerres.aacrjournals.org/co...9/14/5623.long. An interesting line I caught in it was, "Clinical and experimental evidence indicates that platelets play a role in the spread of cancer. Both thrombocytopenia and antiplatelet treatments reduce the number of experimental metastases." Which makes me wonder if AA is the body reacting (in a highly over-reactive way) to what it sees as a cancer or tumor, in an effort to shut down the process that is feeding it. So, enough with the philosophizing :-p, but I do think your hypothesis about the tumor causing faulty info to the immune system is correct, and that there's good reason to believe that removing the thymoma will help. However, your husbands results to ATG look very encouraging so far, so waiting for 50k platelets looks like it is in the realm of close possibility!

BTW my son hit 34k platelets about 8 weeks out from ATG It took him a few months more to go over 50K. We're 1 yr and 4 mo out and he is hovering around 100k platelets (he hit 140k once but they went back down).