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High Dose Cyclophosphamide outside of the US
Posted: Sun Nov 02, 2008 8:44 am
by L
In theory I shall be receiving high dose Cyclophosphamide treatment here in the UK.
My neurologist was not at all comfortable with the idea but I insisted that it was what I wanted so he referred me to a colleague who, in my first neurologists words, "favoured aggressive treatment">
I have had one meeting with my new neurolgist who, despite recommending against it (he thinks it rather risky but, after researxh, I think he may be over estimating the risks) is open to the idea of my being given the treatment.
The treatment will be administered by a bone marrow transplant unit.
I am waiting for my next appointment with him.
I thought that I would let you know that it is possible to recieve this treatment outside of the US.
In preparation for my meeting I sent much information regarding studies, prophylactic ACE inhibitors and Mesna. It turned out that my new neurologist was very familiar with the treatment, but I think that a combination of research and finding an enthusiastic neurologist will achieve results.
Good luck all those who seek this treatment! ☺
Posted: Sun Nov 02, 2008 10:35 am
by Lyon
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Posted: Sun Nov 02, 2008 11:41 am
by Jamie
absolutely fantastic news.
what protocol will they be mirroring?
I guess they can't follow the revimmune protocol exactly as that would be patent infringement.
After all its the process that is the basis of their patent.
Posted: Sun Nov 02, 2008 12:02 pm
by Cyclops
That's excellent news. Hopefully you will be the first of many to get the procedure.
Cyclops
Posted: Sun Nov 02, 2008 3:32 pm
by L
Thanks all. Yes, I am very excited. I don't know any details as to the protocol just yet. I'll pass them on when I do know. I thought it was important to let it be known that it is possible to obtain this treatment.
I couldn't see what would stop a motivated Neurologist. The drug is approved and it's use widely documented.
I'll keep you posted...
Posted: Sun Nov 02, 2008 4:29 pm
by CureOrBust
this is the third place/country including the U.S. I remember recently somewhere in Brazil (
link) that had also performed high dose cyclophosphamide on MS patients.
I remember that Lyon had hosted a few articles a while back on his web site that had fairly detailed descriptions of the process used by John Hopkins. If you could get a hold of these and maybe also contact the people in Brazil, I think your medical team will be well informed.
example of some of the details in the document:
Approval from the Johns Hopkins institutional review board
was obtained. Patients gave consent twice, at screening and prior
to enrollment into the study if they met all inclusion criteria.
All patient case summaries were presented to a steering committee
to ensure by unanimous approval that they met all inclusion
criteria and no exclusion criteria. Pretreatment studies
included electrocardiogram, echocardiogram or multiple
gated acquisition scan, sinus computed tomography, and extensive
blood work.
Patients received 50 mg/kg/d of Cy intravenously for 4 consecutive
days. The dose of Cy was calculated according to ideal
body weight. Prophylaxis against Cy-induced hemorrhagic
cystitis (generally Mesna [Uromitexan; Baxter, Deerfield, Illinois])
was directed according to established clinical practice
guidelines. On day 6 (6 days after completion of HiCy treatment)
all patients received 5 μg/kg/d of the myeloid growth
factor filgrastim (granulocyte colony–stimulating factor) until
the absolute neutrophil count exceeded 1.0109 cells/L for 2
consecutive days. Patients also routinely received prophylactic
antibiotics (norfloxacin, fluconazole, and valacyclovir) while
granulocytopenic.
I just searched for the docs, and found that you already know of them
link
I would be really interested when someone tries the oral route, which is used for breast cancer. (
link)
Posted: Sun Nov 02, 2008 7:03 pm
by chrishasms
I AM SOOOO HAPPY TO HEAR THAT I HAD TO LOG IN!!!
I just watched SICKO and I need to know.
Is this covered by the NHS and is this gong to cost you 6 pounds 65?
If it is I am going to barf again...lol...
CONGRADS!!!
Posted: Mon Nov 03, 2008 2:24 am
by Cyclops
Sicko is out-of-date. The £6.65 charge for medice has been scrapped in Scotland and I think its its in the process of being scrapped in England too!
Posted: Mon Nov 03, 2008 6:22 am
by chrishasms
No kidding!!
So what's it going to become?
I guess the bottom line - is it still going to be more economical than the US to still get good care?
Posted: Mon Nov 03, 2008 8:07 am
by Jamie
zero
Posted: Mon Nov 03, 2008 12:24 pm
by chrishasms
Wait so the cost is nothing now?
Posted: Mon Nov 03, 2008 1:03 pm
by Cyclops
That's right. All meds are free now but there was no charge for MS drugs anyway as they are for long term conditions.
It will be interesting to see what happens if L is able to get the treatment here. Normally the NHS will only pay for approved treatments and the drawback there is they are not too quick at approving.
That's why it's really important for JH to do the phase III trial. If it is successful then the NHS will be forced to provide the treatment to everyone who needs it. FREE!
Cyclops
Posted: Mon Nov 03, 2008 1:24 pm
by chrishasms
So it is true then...I mean sicko...we really are that fucked up in America.
Posted: Mon Nov 03, 2008 1:35 pm
by Lyon
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Posted: Mon Nov 03, 2008 7:06 pm
by L
chrishasms wrote:I AM SOOOO HAPPY TO HEAR THAT I HAD TO LOG IN!!!
I just watched SICKO and I need to know.
Is this covered by the NHS and is this gong to cost you 6 pounds 65?
If it is I am going to barf again...lol...
CONGRADS!!!
Thanks Chris.
And yup, it's the National Health Service. All free. No fixed charge even, that's only for prescriptions picked up from the chemist. I don't have to pay them anyway because I'm on Income Support benefit on account of the MS stopping me working... Sorry...☺