Phlebotomies/Chelation/Counts during AA remission

[Ryan Jay]

Hey everyone! Long time no see!

I am doing fine and going on four years of full remission. Yay!

Anyway, just a quick question. I am still getting phlebotomies to reduce my iron levels. Could this affect the numbers on my CBCs even a month or so after taking off some blood?

My hematologists just looks at my HGB around 13, gives me a thumbs up and sends me to the infusion chair.

Since we have been really hitting the iron issues lately, my counts have come in a little lower, but stable. WBC flirts with 4, HGB in the high 12s low 13s and PLts in the 120 range. Everything was a little higher before "operation phlebotomy" started in earnest in the winter.

Thoughts?

[dmscott65]

Hey Ryan Jay!

I'm so happy to see your post and know you are still doing well. I was diagnosed SAA 2 months after you and followed your recovery closely, since I was in same process just shortly after. I was blessed to have gone into remission after h-ATG and cyclosporin from Oct 2010 through most of 2012. Then, an ugly duodenal adenoma(cancerous) tumor reared its head and I had a whipple procedure to remove that in Nov 2012. Lost the head of my pancreas, duodenum, gallbladder and small portion of lower stomach. Incredibly, the cancer had NOT spread to any lymph nodes and I made pretty much a full recovery. Except, that my platelet count has been on a slow downward spiral throughout 2013. The rest of my counts finally decided to join the party, so I had a bone marrow biopsy and they've now confirmed PNH. By the grace of God, my insurance company has agreed to pay for Silaris infusions to treat the PNH. Dr thinks it could be AA rearing its head again, also on top of the PNH, but we won't know until after a few months of this treatment. Unlike you, I have very low iron levels and have to take supplements daily. I'm happy to say I'm still working and able to function normally most days. Although lately, its been quite tiring. Silaris treatments should alleviate some of the anemia symptons after first few treatments, I'm told. So, you are no longer taking cyclosporine or any treatment for the SAA? Great to hear you are doing so well!

[KMac]

Hi Ryan,

Happy to report I have an answer to your question directly from NIH, and in short that answer is "yes, even a month later a patient's blood can be low from the phlebotomy, without it signifying anything adverse like relapse".

This is from an AAMDS webcast from San Francisco a few weeks back with Dr. Townsley from NIH, discussing the latest non-transplant treatment options for AA. In her presentation she had a graph of refractory AA patients' hemoglobin response after an Eltrombopag clinical trial (you may have heard how promising this new drug is looking to treat AA). Anyway, a number of the patients achieved normal Hgb counts. One patient went up over 15, and then started falling over a series of about 5 months down to 12. Dr. Townsley asked us a 'bonus question' - "now what's going on with this patient?". The answer was phlebotomies. I was surprised to see the patient had such a good response to treatment, yet fell so much in Hgb over a series of months from phlebotomies.

I think AAMDS has powerpoint docs out on their website from this webcast, and that may have the chart described above in there.

It is encouraging to hear you are doing so well 4+ years post-ATG.

Kevin

[Marlene]

The first time John attempted to reduce iron via phlebotomies, he had to stop. It was too much on his BM and he wasn't recovering red cells. He then went on Exjade. After a while, the Exjade became a problem so he started up phlebotomies again but at every other month and only 250 ml. Took a long time to reduce the iron.