Palbociclib and Fulversant

FormerMember over 5 years ago

3 replies
40 subscribers
1872 views

Hello

Three or so months ago I was was refused NHS funding for this combination of drug after my private insurance would no longer pay for it. I was put on Tamoxifen and have now been taken off that and put on oral chemo, Capecitabine. I have now found out today that the drugs combination is now available on the NHS. My cancer has gone from bone to liver. I think a conversation is needed to be had with my NHS consultant and my private one. Why do we have to fight for everything. Both Consultants had wanted me to continue with the drug as it had kept me stable for a year. I dont obviously know now whether this combination would now work or whether I am better off on the oral chemo. I hate not having the knowledge as to what's best. Of course, there is no guarantee the NHS would now allow it any way.

Ellie

FormerMember over 5 years ago

I am just back from app with specialist as i am on Capecitabine, now my hands are very bad with

periferal neuropathy, the only choice i was given was to reduce the dose. I have looked on this

site and another re different chemo choices , i know my MpTNBC is different but i am sure there

is something else, i do not know yet if it is working on my Breast cancer now in my lungs.

As you say have to look at every thing you can find out for yourself. Difficult when you are tired and

worried .

C J

FormerMember over 5 years ago in reply to FormerMember

Hello CJ

I contacted my Consultant and she says because of the fact the drug was stopped that I am better being on the Capecitabine. I have only been on it for over a week so too early to tell if this will stop the tumour in its tracks. I am constantly worried some know how that feels. I sometimes feel I have to pull the information from them. I keep reading of other available drugs and yet none are offered. I fell sometimes we are getting written off too soon.

Ellie

FormerMember over 5 years ago in reply to FormerMember

Thats my worry i'm 'old' so more chance of being written off.--- I really would like to know if its working or not . The only problem i had with it is tiredness and then my hands.

Just wonder how people get other medication, i only have the oncologist here, so no choice of a second opinion.

I also wonder if drug companies hold back.!!!!!!!

Keep searching.

C J