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ALOCIN · Regular Joined: 16 Oct 2006 Posts: 26

I've just found this forum.It is very sad to resd how many peole are having to deal with this condition themselves or they have a loved one with a brain tumor. My husband has had to deal with cancer twice. different primary cancers. He was diagnosed with male breast cancer in 2001 had surgery and radiothery. The prognosis was good with the breast cancer and in fact it hasn't spread. last year he suddenly started to get headaches and was diagnosed with glioblastoma which is terminal .This is so very hard to live with. He's 48 and our youngest child is 6yrs old . We wanted to grow old together I don't want to lose him . The only thing good about him having breast cancer is that we went to america on holiday what he always wanted to do. He's had surgery, radiothery and chemo pvc for over a year. Life is cruel , he's fairly well in himself but we can't go anywhere on holiday as we are unable to get travel insurance. Has anyone else had this problem??
we try to enjoy the time we have togeather but it is not always easy. Our youngest son doesn't know how ill his dad is . He's very much a daddy's boy so it will be hard in the future but I try not to think about that.

sarahg300 · New User Joined: 01 Oct 2006 Posts: 3 Location: UK

Hi,

Are you in theUK?

Sarah

ALOCIN · Regular Joined: 16 Oct 2006 Posts: 26

YES I'M IN THE NORTH OF ENGLAND

sarahg300 · New User Joined: 01 Oct 2006 Posts: 3 Location: UK

Hi, just thought id ask ask you mentioned pcv chemo and that is the usual in the UK. We are in Stockport, Cheshire near Manchester and are receiving treatment at the Christie Hospital in Manchester. Has your husband been offered Temodor chemo? I am trying to get that instead of pcv but have had no joy! There is something on the cancerbackup site about travel insurance cmpanies who will insure for people in these circumstances I was reading it on a leaflet whilst at the hospital the other day waiting for an MRI. Hope you are ok

Sarah

ALOCIN · Regular Joined: 16 Oct 2006 Posts: 26

Hi

We did try to get temozolomide is that the same ? last year to be given along side radiotherapy . My husband has now been on pvc chemo for over a year and is doing ok. I know I read about someone in the evening chronicle getting temozolomide feb o6 . I think they paid privately for it.
My husband is only on 2mg dexamethasone with the chemo . I know I have read of other people on different treatments on the forum and no one has said pvc so is it not used outside the uk?

sarahg300 · New User Joined: 01 Oct 2006 Posts: 3 Location: UK

Hi yes temodar is newer than pcv its supposed to be better and is easier to tolerate, N.I.C.E. stopped it in the UK in Feb for cost reasons but it is used in the US now in replace of PCV. If its been working for you thats great, we had an MRI on monday after 2 cycles of PCV and are waiting for the results to see if it is doing anything. We are currently on 6mg of Dex a day because of symptoms we tried 2mg then upped it to 4 then 6 and that seems to be doing the trick, but not helping with the moods! a bit hard with a 7 year old running around but we are getting by!! Which hospital are you receiving treatment at? We go to the Christie in Manchester?

ALOCIN · Regular Joined: 16 Oct 2006 Posts: 26

Newcastle general.my husband had a ct and where waiting for the results. At the present he has a chest infection so is on antibiotics. His platelets are down so if there not up by 2 wks he will not be able to have chemo untill they come up. Newcastle general did say that he might get the other chemo drug later as they can presribe it later. We have a 6yr old who doesn't know how ill his dad is . take care

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