My husband has just started on lonsurf and he is absolutely floored, sleeping all the time. When he stops the tablets for 2 days he's wired up, mixed up and very very stressed. He was on different treatment before which didn't work so this is all new but not good at all aa he's 'gone' most days. Hoping it will get easier!
I hope your husband has had positive results from taking Lonsurf. My husband started the tablets 3 weeks ago. He seems to be very tired and out of sorts - the same as your husband when he started. He doesn't want to go through clinical research at this point. Did your husband consider it? I apologise if this message is inappropriate.
Hi Drizzle we did give his blood work in for clinical trials but we're told there was only a 10% chance of a match so we don't really think it's an option at this point. The lonsurf didn't work unfortunately.
We are going on one last holiday on Saturday. It will be tough but he wants to build memories for our two boys. We have accepted what's to come and are at peace with things.
I hope you find some way through this difficult time x
Hi Rabbitsrule. I appreciate your reply and am sorry that the Lonsurf didn't work for your husband. We have decided to give it a try for 3 months to see if it's working and take it from there. Maybe quality of life is more important than quantity at that point.
It's such a hard time for everyone involved. I think we have to enjoy the time we have together and accept what 's to come as you say. Have a lovely holiday. I'm sure it will be difficult at times but it will create life-long memories for you and your family.
I really hope it works for your husband. He may change his mind about trials but I guess it's his decision. Very very tough for you though. We've had difficult discussions with macmillan nurse about end of life but I'm glad I know his wishes now.
I have to be strong for my boys however awful it is, but I'm grateful for every day that we get to spend together. It's important to make it count x
