Pilot study of Alemtuzumab (Campath) at NIH

[Barbara2007]

i have severe aplastic anemia-originally treated w/ATG (horse) in Nov.03. I am blood and platlet dependent weekly. i was not responding and the prograf was damaging my kidneys.My Dr. reccommended this trial. This particular research protocol was selected bcause I had received prior immunosuppressive therapy and had failed to respond or my diseaSE had returned following immunosupressive treatment. On Nov. 1st I was admitted to the Natl. Inst. of Health in Bethesda, MD. I had initially been screened w/blood tests, bone marrow biopsy and echcardiogram. At admission-I wore a 24 hr. holter monitor,another chest x-ray and EKG. The Campath was admisistered IV-the first initial dose was small and I reacted w/chills,fever and shakes. The nurses were right on it w/demorel and nice warm blankets.Iwas given magnesium IV-mine was low.Everything was closely monitored. i reacted for the first 3-4 days with chills, shakes, and fever but it was quickly stabilized. The staff there are the most compassionate,caring and optimistic folks. I was put on a 1800 calorie diet and w/every meal I ordered (I was trying to be good-honest! she would tell me if I was over my allotted calories- it got to be like food bingo! I went home after 10 days wearing the 24 hr. holter moniter again and then mailed it back. i sent tubes of blood to them on a regular basis-they provided the vials, canisters and mailing tubes and labels. I now send blood monthly. I went back for a 3 month check up and the same stuff was repeated (not the biopsy) No change really-I knew my counts had not yet responded. A few days after comig home after my initial treatment-I started to not feel very well-I thought my sugar was down-but I was dizzy,felt faint and my bones ached so much I could not get comfortable.The chills and fever came and I went to the ER and was admitted immediately and put on triple antibiotics and morphine drip. I was in there for a week. I was discharged wcounts of WBC-0.3, hgb-9, platlets-19, My platlets have continued to drop and now remain at 2-3 and my ANC at 100. I go to NIH again in May for the bone marow biopsy and I pray there is growth, If not the Dr. there said there would be something else they would try. I would go to clinical trials again there-there is hope, compassion, and so much education. Who knows? These trials may find a cure! i now receive aerosolized pentemidine monthly and take Valacyclovir (500mg) daily, cipro (500mg) twice daily along w/ambien, glipizide (diabeties Type II upon AA) and nexium and neurontin (600mg) for the neuropathy in my feet from case serum reaction to ATG. And my creatinine levels are back to normal. Has anyone else had this therapy?

[Susan]

Barbara,

How are you feeling? IThat sounds miserable. I hope the Campath did not set you back for more than a short period. Thanks for sharing, so others know what might happen with themselves on this trial. I don't think I want to try that trial

Dr Maciejewski at Clevleand Clinic and head of the Bone Marrow Failure Consortium once mentioned to me that if ATG and Cyclo ever failed we could try Zenapax. Dr "Mac" is a wonderful person and trained under Neal Young at NIH.
I think it would be worth it to consult with him if your counts are still looking severely low.

Best Wishes,
suz

[Lisa Z]

Barbara,
I did the Campath Trial in March of 2010. My only adverse reactions were the rigors you describe. Otherwise, I tolerated it OK. It took me a while for my counts to come up. It took almost 6 months. I got impatient towards the end and had 4 injections of Aranesp to help the red counts, but in retrospect, I think they would have come up by themselves. I havent' had any growth factors since Oct. 09 and no transfusions since June of 09.
I also take Valtrex and Pentamidine as my CD4 counts have remained low.
At my 1 year follow up, which was March 2010, they said blood was OK, but my thyroid got screwed up due to the Campath, so now I am on thyroid meds. Is our thyroid OK?
My cytogenics were normal. My counts are all still below normal, but my body has adjusted and I function pretty normally at these levels. (hemo usually around 8.5, but now is 9.6..... curisous to see where this is going...- plt have responded very well and now around 100 , from 40-50, and wbc around 2.3.
I'm glad my lycocytes remain low, as that is what was supressed. My ANC is good enough not to need the Cipro.
Would love to hear back from you.
Lisa
lzieske@verizon.net

[Lisa Z]

Hi Barbara-

I'd love to hear from others who did this trial. When did you do it? I guess fairly recently, if you're still sending back the vials. I was also very impressed with the level of care while at NIH. It made me nervous, though, when I left.... it was like going from a cocoon environment to "normal" life and I was totally freaked out about getting an infection. I never did........

Have you talked to others on the trial ever?

[Susan]

If you're considering trying Campath, plse ignore my old comment above. I didn't know enough about it then. It sounds quite promising and for sure I'd rather do Campath than ATG/CSA. Wish could try as first line treatment for SAA.

[JoGarbe]

This thread hasn't been active for awhile, but wondering if there are still people being treated with campath / alemtuzumab. I have a local doctor working with the Cleveland Clinic. I was given a link to access campath, but wondering how others have secured this medication.

Current information takes some searching...

https://www.healthline.com/health-ne...-trials-010814

[Neil Cuadra]

Originally Posted by JoGarbe

This thread hasn't been active for awhile, but wondering if there are still people being treated with campath / alemtuzumab. I have a local doctor working with the Cleveland Clinic. I was given a link to access campath, but wondering how others have secured this medication.

Current information takes some searching...

https://www.healthline.com/health-ne...-trials-010814

Many news sites (example) reported that Sanofi withdrew Campath from the market in 2012. There are still clinical trials involving alemtuzumab in the recruiting phase (example), but I don't know the status for its current use with bone marrow failure diseases like severe aplastic anemia. It's telling that the campath.com website is gone.

Sanofi has an assistance program for patients who have been prescribed Lemtrade, their newer version of alemtuzumab, used to treat multiple sclerosis. Ironically, aplastic anemia is listed as a possible side effect of Lemtrade when used to treat MS.

I suggest trying the Aplastic Anemia & MDS International Foundation's Patient HelpLine, to see if they have information about this.