This Is MS Multiple Sclerosis Community: Knowledge & Support

You guys are all making me feel better. I'm not asking for someone to blow sunshine up my 'you know what' but I'm feeling like maybe I'm the lucky one. I'll let you all know what happens come my blood test results.

Marcia

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Marcia

Marcia,

I've been following this and meant to jump in earlier. One question I had: they told you your lymphocyte count at month 9 was 180, but later told you it had been low since month 3? Did they ever explain the discrepancy (or am I misunderstanding)?

I've wondered about the CAMS trial design, why they do 2 infusions separated by a year. And why the second one is only over 3 days. I wonder if it is just for good measure, since this is still experimental, and maybe one dose is enough.

They never actually said that my count was 180. They kept saying at every visit that my counts were where they should be then all of a sudden on the Friday prior to my scheduled Monday infusion I was told my counts were below the anticipated numbers as compared to others that have received campath. My research coordinator was as surprised as I was. Evidently Genzyme gets the results and they didn't alert my clinic that my counts were low therefore it was assumed that everything was okay. The assumption was that my counts were within the expectable range. Then when it really mattered they finally let my clinic and I know that they're too low. I guess they aren't concerned about the counts for going about my everyday life but when it comes to re-dosing they cause me to not meet the criteria. I wish they would have notified me sooner of the low counts but I have to remind myself that I am a labrat and am not privy to the information that any normal human being would expect.


I'm sorry if my above paragraph is only clear as mud. I'm anticipating my final bloodwork results tomorrow and am not thinking as clearly as I would like. I pretty much know I won't meet the counts needed for re-dosing but I'm still holding out till I hear their final answer. I'll hopefully get a chance to ask more questions. If you want me to ask any let me know before tomorrow morning 8:00EST.

Marcia

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Marcia

That's a really good point, and even if the information isn't really confidential, the sponsor of the trial might not always give information just because you're not their patient.

Well, if it's only a question of one particular blood test being 1 point low, maybe that's within the accuracy error of the test. Maybe a re-test will come out 1 point above the lower threshold.

But, then again, like others have pointed out, you're probably good with one dose.

That should be my new mantra...

ONE DOSE IS GOOD, ONE DOSE IS GOOD, ONE DOSE IS GOOD.

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Marcia

I am at month 21 in the study. After every blood draw I have called my study nurse to get my counts. I have kept a log of each month to see if the counts go up/down. Did your study site not give you the information as you went along?

Freiguy, Nope. They did not. But I will ask specifics from now on. I've learned a lesson.

I am scheduled for 3 days of iv solumedrol Tuesday through Thursday. No alemtuzumab for me. But I'm okay with it. My CD8+ t lymphocytes were at 31 according to the latest results from Genzyme. This number is way below their threshold for re-treatment but up over the last test.

My research coordinator said they will watch my progression closely and if I begin to worsen they will make a case to Genzyme for possible dosing at that time. I will still be offered the chance to roll into the extension study after 24 months regardless.

I don't think this is a bad thing. It's just not what I expected. I don't want to put something into my body that isn't needed and I feel better knowing they will work with me to keep from worsening.

Marcia

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Marcia

Does anyone out here see any issue with doing the liberation procedure while still in the campath study?

Marcia

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Marcia

The only problem I can see is that the liberation treatment may help your MS, which could skewer the trial results.

I could see potential issues with affecting the data for the Campath study. If this is a consideration, I'd check with the trial coordinator, so he or she can check with Genzyme. I guess, in the end, though, it probably doesn't matter - you're not bound to do anything that Genzyme says.

I had blood draws at my trial site and at a local lab to check my lymphocyte levels. Should know something on Thursday. I was told that if my counts are still then it's good and campath is doing its job but I'm pretty sure I'm having an exacerbation right now. Not what I need now.

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Marcia

My trial coordinator called me Saturday and let me know that the local lab (Labcorp) came back with results at 63 for my cd8+ lymphocytes but Genzyme reported them back at 31 which was exactly where they said they were two months ago.

My coordinator said this is probably a good thing. If my counts are still that low then I don't need additional treatment. Lucky me. I would agree if I wasn't slipping. I'm back to the cane AND now the tinglies in my left hand are turning more into numbness. I don't know how I got put on this ride. I absolutely did not buy the ticket but somehow I got here anyway.

I'm questioning whether it's even worth it to get redosed. I like being in the trial for the free and frequent neurological care but I'm slipping. My family is young and I want to be there for them. I think this is BS. I think I'm done with it.

Marcia

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Marcia

The word from Genzyme is if you get "liberated", you will be kicked out of the campath study.
Good luck getting liberated, though...

I was thinking about your post K6ristin. If they're going to kick you out then they must somewhere deep inside think CCSVI might be working and may skew their results. If they didn't think it would help then they wouldn't care either way. So big pharma may like to poopoo CCSVI as voodoo medicine but they need to watch out. It would be better if they'd come out a little more diplomatically.

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Marcia

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