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Re: Campath
Apr 1, 2009
Hi,
I hope this comes out right. I'm a little confused about how to use this board.
My friend was diagnosed with CLL in her fifties. I think she was able to go for about five years, maybe as long as seven, without treatment. She had chemo a few years ago and that helped for about a year and a half. Campath is her second treatment. Did your husband have other treatment before Campath? How long did he go for injections? My friend is supposed to do this three times a week for twelve weeks. She is already doing better-- The fevers have stopped and the injection is not bothering her as much. Her doctor is so concerned about infection that she has been told that she can't eat out and has to wear a mask in public. He told her on Monday that even after the treatments she will have to continue this way for maybe another two months. This sounds different than your experience.
I hope you can find someone on a message board who is doing the same trial drug your husband may do. It really helps to have someone to talk to. I sent several Campath messages out in February-- Yours is the first and only answer I've gotten. It doesn't seem to be in common use. (Although I am hearing more about it for treatment of MS)
I wish you and your husband the best. You sound really positive and I know that can make a big difference.


[QUOTE=sue501;3938912]Hi again

Yes my husband has CLL he was diagnosed in 2003 at the age of 46 which is quite young as it seems to be for the over 60ís judging by the people at his clinic sessions.
I have read him your email and he said that he did get hot during the early stages of the treatment but it did get better, but he never had to wear a mask when he went out! Whatís that all about?

After about three weeks he went for the treatment on his own and felt alright (or so he tells me) I think that all you can do is be there and make sure that you make light of the situation as much as you can thatís what Iíve always done it seems to make me feel better about things to.

My husband philosophy is to live life as normal as he can, when he can. So we try to go out for a meal together and do things around the house. The Campath gave us nearly two years without any other treatment until now, so it was really worth doing.

He has been asked to go onto another trial for a drug called Ofatumumab (HuMax-CD20)
I have been trying to find anyone who has been on it already but have had no luck so am going to post a request on this notice board.

Anyway any other worries please let me know and I will try and help... tell your friend Ė Chin Up things will get better and she will be pleased Ė give it time.[/QUOTE]
Re: Campath
Apr 2, 2009
Hello again

My husband did have cymo first but that did not put him in remission so when his cell count increased again he was then put in the Campath Trial.
His treatment was for six months, three times a week, but he did really well and stopped treatment after five months.
You are right he was told that we could not go anywhere enclosed, like the cinema, restaurants or on holiday, but no mask was required.... also he was told not to eat shell fish, curries, blue or soft cheese or any take away food. At that time he was told that he would have to be careful for up to 18 months but that was not the case as his immune system was a lot better after about three months. I think that your friendís treatment plan has been updated from the results of previous trials.
Sorry I even get confused about things as the years go by.
We had a telephone call yesterday to say that he did not fit the criteria for the trail that I mentioned so back to the drawing board...
Glad to hear that your friend is feeling better and hope that all goes well with her treatment.
Sue


[QUOTE=misspersistance;3941752]Hi,
I hope this comes out right. I'm a little confused about how to use this board.
My friend was diagnosed with CLL in her fifties. I think she was able to go for about five years, maybe as long as seven, without treatment. She had chemo a few years ago and that helped for about a year and a half. Campath is her second treatment. Did your husband have other treatment before Campath? How long did he go for injections? My friend is supposed to do this three times a week for twelve weeks. She is already doing better-- The fevers have stopped and the injection is not bothering her as much. Her doctor is so concerned about infection that she has been told that she can't eat out and has to wear a mask in public. He told her on Monday that even after the treatments she will have to continue this way for maybe another two months. This sounds different than your experience.
I hope you can find someone on a message board who is doing the same trial drug your husband may do. It really helps to have someone to talk to. I sent several Campath messages out in February-- Yours is the first and only answer I've gotten. It doesn't seem to be in common use. (Although I am hearing more about it for treatment of MS)
I wish you and your husband the best. You sound really positive and I know that can make a big difference.[/QUOTE]





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