My husband was diagnosed in November 2021 with CUP after having been ill since the June. He was offered a trial but unfortunately nothing in his DNA could be identified to profile so he went on and did 3 months of Gem and Cisplatin chemo of which the side effects were brutal. In the last two cycles they added in an immunotherapy and gave him one stand alone immunotherapy at the end. This nearly killed him. Last June he was given weeks to live. My husband is super responsive to Dexamethasone so his lovely oncologist put him on a small dose to keep him comfortable. Within 48 hours he was like his old self! In September last year he saw the birth of our first grandchild the same day as our 22nd wedding anniversary and October saw his 60th birthday, none of which we thought he would see. He went back to work in the September (full time). Unfortunately, in February this year we were told that the cancer was active again. At this point he stopped work. He has had a course of palliative chemo, but our oncologist has taken him off this as she says that she has no evidence that it's working. The past few weeks have been tough. Because he takes the steroids, which basically has been keeping him alive, but also has negative side effects, one of which is loss of muscle mass meaning that he is prone to falls. He fractured his ribs in April which resulted in pneumonia. Then 3 weeks ago he was treated in hospital for a chronic kidney infection which has now cleared. He has been looking at any more trials that might be available. In a couple of weeks he is travelling from Devon to the John Radcliffe in Oxford, for a series of blood tests. If they can find anything in his bloods to indicate the original primary site (which has so far not been possible - hence CUP diagnosis) they will then look across the UK for any suitable trials. It's a long shit, but one that he is prepared to take. Where we go from here, who knows. To all those on this site, never give up hope as without hope, you have nothing. Is there a CUP carers forum as I would find this very useful?
sounds like you’ve been on quite a journey. I am currently under the Clatterbridge in Liverpool and they have a monthly CUP forum for patients and carers. Have you got a Maggie’s centre nearby? They maybe able to help find one local to you?
It sounds like you’ve both been on quite a journey and your partner sounds very resilient! Can II ask where his cancer is located?
I was diagnosed in Nov 21 too. My secondaries are in 4 sets of lymphs in my lower abdomen. I am just going through chemo now (carboplatin snd paclitaxel). Last year I was on a trial for immunotherapy that shrunk all my cancers but eventually started to attack my lungs and I stopped in summer last year. The immunotherapy kept working till early this year. I’m having some radiotherapy on one of the larger cancers next week and hopefully the double whammy will have a triple effect!!
im already lining up a trial in London UCL called tapistry based on my cancer having a HPV marker (Human Papilloma Virus).
I was originally under The Christie in Manchester but my consultant was a bit slow in coming forward with ideas.
Don’t be afraid to ask for a second opinion. Consultants are quite happy that you do this. Sometimes a fresh set of eyes and experience can help. It doesn’t mean you have to dump your current oncologist!
I wish you both the best and I hope something is found in his blood that helps identify a primary.
It sounds like you have also been through the mill. My husband's stubbornness is what keeps him going! His lesions are located in various lymph nodes, several in his lungs, his spleen and a large mass in his adrenal glad....that we know of. I don't know that my husband could cope with journeying up and down the country now. It would depend on how he is on the day. He is very fatigued but as his sleep is poor at the moment, that could account for that.
I sincerely hope that the radiotherapy has a positive outcome for you.
