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[Laurie S.]

My husband (63 y/o) has PRCA and CLL; started treatment 1 year ago. The CLL treatment (FCR) was interrupted last fall after 2 cycles due to the PRCA. Cyclosporine helped, he was then tapered off and he relapsed in June, back to weekly transfusions. He's back on cyclosporine, but it's not kicking in again. I gave him Dr. M.'s contact info (from this forum , and his doc said she'll consult with him. Any support/suggestions would be much appreciated...this is a very scary time for us both...

[triumphe64]

Dr. Maciejewski is great. It is worth a visit to him even for a second opinion.

[Laurie S.]

Thank you for replying; we'll reach out for the 2nd opinion if my husband's doctor doesn't follow up next week. He's been on the cyclosporine for 7 weeks so far, but I'm encouraging him to go to Cleveland if his response doesn't kick in by his next appt on Tuesday. I've been reading about Zenapax, too...is it potentially effective for both the CLL and and PRCA?

[triumphe64]

Originally Posted by Laurie S.

Thank you for replying; we'll reach out for the 2nd opinion if my husband's doctor doesn't follow up next week. He's been on the cyclosporine for 7 weeks so far, but I'm encouraging him to go to Cleveland if his response doesn't kick in by his next appt on Tuesday. I've been reading about Zenapax, too...is it potentially effective for both the CLL and and PRCA?

My experience is only with PRCA. I know he has patients with combinations of conditions. I believe there are several options for treatment, but every person responds differently.

[Laurie S.]

My husband's CLL doctor has seen 10 other people with PRCA over the years, which I understand is more experience than other doctors generally have. I'm hopeful that Dr. Maciejewski's PRCA expertise can better inform the next step. In the meantime, I so appreciate this site and your participation; we haven't found any other people with this combination, so we're back and forth between CLL and PRCA to gather as much info as we can.

[triumphe64]

Originally Posted by lainnyc

My husband's CLL doctor has seen 10 other people with PRCA over the years, which I understand is more experience than other doctors generally have. I'm hopeful that Dr. Maciejewski's PRCA expertise can better inform the next step. In the meantime, I so appreciate this site and your participation; we haven't found any other people with this combination, so we're back and forth between CLL and PRCA to gather as much info as we can.

That is a great amount of experience with PRCA.

[triumphe64]

I just sent you a private message (I guess it was actually an email) regarding a member of this forum who has PRCA/CLL.

Let me know if you are able to send a message..

[Reneesctmiller]

Hi there, my husband has PRCA (5 years now) and originally they thought he had CLL as well. The CLL has not shown itself now since that first year of his illness. We go to see Dr. M now too and highly recommend it. He has the most up-to-date and OPTIONS! While my husbands condition remains the same (he transfuses every other week), we've been trying alternative treatments to see what might work. Our challenge is that he has Red Cell Aplasia, but not necessarily all the markings for 'Pure'.

We now joke that of the rare, he really is unique wish it had been the lotto instead!

Let me know if you have any questions - we've been dealing with frequent transfusions and travel to Cleveland now for awhile. Our local dr. is great, he actually did his residency in Cleveland with Dr. M (what great luck to find him here in FL, in our town!!!). We've tried a host of treatments, right now after this year's visit 3 different, fairly non-invasive drugs. Then we might be doing ATG next year. So we still have a journey ahead of us!

[triumphe64]

Thanks for posting.

[Laurie S.]

Good morning, I'm just catching up w/emails, I sent a private msg to Renée, too. My husband was just approved for the new CLL drug, Imbruvica, and we'll see his CLL doc on Thursday to get her recommendation re: next steps. The cyclosporine doesn't seem to be working; after 8 weeks, Larry is still getting transfusions every week or two, his hgb is in the high-6's, low 7's, and the fatigue is very hard on him. If his doc hasn't called Dr. Maciejewski, we'll call his office on Thursday to get an appointment for a 2nd opinion.

[triumphe64]

I see him on Sept 17. If you get that day, let me know. We can do lunch.

[Laurie S.]

Sounds good

[Laurie S.]

my husband spoke w/Dr. M. today; it sounds as if he's had fewer pts with both disorders than the current doc, who's recommending Campath if Larry husband doesn't respond to the cyclosporine. It's very confusing, I made several calls today, and I haven't found someone who's seen a substantial # of both. Larry's doc did report that he's showing a very slight sign of retics, but she's not ready to say it's a real response yet... wants to give it another couple of weeks to know for sure. Campath would be a shot 3x per week for 6-8 months! A real jolt for us after a year of several of them.