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Board index » Treatments » Revimmune (cyclophosphamide or cytoxan)

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Cyclops
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PostPosted: Thu Jul 24, 2008 12:55 pm 
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When I spoke to Carrie she mentioned in passing that it would start 'next year' but didn't give an exact date.

Cyclops
.o)
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rainer
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PostPosted: Thu Jul 24, 2008 9:25 pm 
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Considering the typical size of phase 3, it's possible the treatment will be more available then it is now.
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RedPenguins
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PostPosted: Thu Jul 24, 2008 9:32 pm 
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I wish you all could get a definite answer from JH re: what is happening. I wonder if they even have a specific date for phase III....I also don't know if it means they won't still do off-label.... If they scheduled you for an appointment, I am sure they are still planning on treating people. I haven't checked the pipeline lately - but is Phase III currently listed as being recruited for?

I know there were nearly 10 of us there having treatment at the same time...however, someone who is still there told me that she believes it seems they are slowing down. However, I do not know how true that is. I do know that the oncologist who is the main one handling things (b/c Dr. Brodsky has limited interaction with patients now) - is out of the country...so they may not be doing anything new at this exact moment. But again, I'm not 100% sure of anything....

I also know a few people still there who have had the chemo portion and are struggling with getting their numbers back up...however, I have faith they will all pull through in time.

Kyle - have you spoken with Dr. Hammond?

I need to call there tomorrow to schedule my 3 month follow-up. I saw my local neuro today....I think he was shocked at how well I was doing and the changes that were visible to him. I was, too!

Keep us posted!!

~Keri
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merlin26
 Post subject: HICY
PostPosted: Fri Jul 25, 2008 12:23 pm 
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Kyle wrote:
Yes I did speak with Dr. Hammond. He said I was a good canidate, although I do not think I showed any enhancment on my last MRI but I did have an attack recently.



Hey Kyle, how did you get a hold of Dr. Hammond? I've been trying for the last week and still have been unable to. I tried emailing and calling. It's becoming frustrating. The thing that concerns me about revimmune are the multiple CT scans of your chest / sinuses they have you do after the treatment. In Oregon our doctors refuse to do more than two unless absolutely neccessary because of the high cancer risk associated with them. The New England Journal of Medicine reports that in 20 - 30 years 2% of the worlds cancers will be a result of CT scans. I wanted to ask Dr. Hammond about that but as I said I cant get a hold of him. Any help would be appreciated.
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pvns2005
 Post subject: Re: HICY
PostPosted: Fri Jul 25, 2008 1:12 pm 
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Merlin,
I just been through the HiCy treatment. The after care protocol does not require any CT scans after tratment. The only CT scans required is the one prior to HiCy treatment (Sinuses/Chest. No Dye).


Chris S.


Last edited by pvns2005 on Fri Jul 25, 2008 1:26 pm, edited 1 time in total.

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pvns2005
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PostPosted: Fri Jul 25, 2008 1:24 pm 
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Kyle,
Read above post..

Chris S.
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merlin26
 Post subject: CT Scans
PostPosted: Fri Jul 25, 2008 1:52 pm 
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pvns2005 wrote:
Kyle,
Read above post..

Chris S.


Chris you're right. Dr. Hammond just got back to me and he stated they only do one CT scan of the sinuses. Here's the exact reply below:

Thank you for your interest in our research. To try to answer your questions -

1. We will need to review you medical records in order to determine eligibility.
2. We only obtain one CT scan of the sinus. Patients are followed up with MRIs

Hope this helps. Let me know if you have any other questions.

Best,
Edward
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Lars
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PostPosted: Fri Jul 25, 2008 3:42 pm 
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Kyle,
Good question. I, and a few others on this site, have always been convinced of some connection between MS and Sinus issues. This makes me wonder even more!
Lars
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pvns2005
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PostPosted: Fri Jul 25, 2008 5:37 pm 
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Kyle wrote:
I wonder why they need a ct scan of the sinuses for Chemo?


Ok,
They need a sinus CT to make sure you don't have a sinus infection. You only get the sinus CT after you meet the Doctors in Baltimore and you are approved for the HiCy treatment then you get all test performed at least one week before treatment.

Test they need once you have a date for HiCy treatment:
1. Sinus CT
2. Allot of blood work
3. ECHO of the heart
4. EKG
5. Chest Xray, Pulminary function test.

They already have your MRI from your evaluation visit.

Get the MRI and be evaluated by the doctors in Baltimore, get approved for HiCy then worry about all the tests.


Chris S.


Last edited by pvns2005 on Fri Jul 25, 2008 8:55 pm, edited 1 time in total.

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Board index » Treatments » Revimmune (cyclophosphamide or cytoxan)

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