Campath/HDMP

[Guest guest]

Dear friends,

Campath/HDMP protocol

I hope any one of you that has done this protocol would be kind enough to give me an input into their experiences, either direct to my personal e-mail address or to the list whatever you feel more comfortable.

I am starting Campath/HDMP treatment on June 9th. About two month ago when the doctor and I talked about it, she just said I should bring someone with me for the first day of treatment just in case as we did not know how I would react to it.

Then about three weeks ago when we met again to finalise details she said she was going to organise a bed for me to stay in hospital that week, even I would do the treatment on the day treatment room, she felt it was best to keep me in to keep an eye on me, so it looks as if I will have a week holiday in the hospital, so I am taking up knitting again as lately I do not seem to concentrate on books unless they are things related to practical usages.

I will be following a protocol by the UK CLL experts (A. Pettitt, E. Matute, P. Hillmen and D. Oscier), www.ukcll.org I got a copy of the protocol and that made me feel better knowing all they are going to do with me during those possibly 16 weeks, but nothing better than hearing from other patients about how they felt during the treatment to prepare oneself better psychologically and practically.

I have had HDMP in the past, last year during my treatment in Bournemouth with Prof. Terry Hamblin and I know a bit what to expect on that side, however last year I had 1 gram of Methylprednisolone one day each month followed by two days of Dexamethasone and the fluradabine doses (pills) and Rituximab.

The protocol I will be doing this time says that the first week I will have 1 gram a day for 5 days and this will be repeated every 28 days during 4 months.

I would be interested to know how any one that has done this felt with such large doses of methylprednisolone on 5 consecutive days and any side effects they might have experienced, physical or emotional.

On the Campath side I think I have read masses of material related to the infections and how to protect us, and all the drugs given to prevent problems, but I have very little information about how people feel with the drug and any effects they experience or feel.

I think I made some diary notes about the HDMP last year and I will dig them out to include here to share with others in due course if any one else is interested, I only felt bad the first round, and that I think it was because I was not properly prepare for it and did not have the right foods, the following months all was simple, I even went to stay with friends and they just let me eat and sleep so I did not have to worry about cooking or moving a finger unless I was inspired to do it.

What will happen this time is a bit of a mystery and as the treatment goes with Campath 3 times a week I am sort of town bound and no travelling for a while, that provably will be the hardest thing to do, although I have said to friends that going for a transplant will be like having an unusual sabbatical, it is provably more like being a prisoner.

I look forwards to some input and others experiences.

All the best

Chonette