So, though not curable, hubs and I met his oncology consultant today in the Churchill hospital in Oxford, and these two drugs have been suggested to try to buy us more time, hopefully more quality time.
Hospice referral too so they can manage nausea, pain and poor appetite better than the hard-to-reach GP’s. The hospice should get in contact by the end of the week, they suggested.
We see the oncologist again next week to agree and for hubs to sign consent, then treatment could start by the end of that week. One drug is daily tablets, the other a fortnightly infusion which can only be done in Oxford again.
Would welcome any thoughts and help with info although he’s been given leaflets....
Hugs xxx
Hi Moomy, I have had one kidney and part of one breast removed in 2017. November 2019 was diagnosed with lung mets which were inoperable. No treatment was given due to covid. January 2021 Avelumab infusions plus Axitinib pills began. All the pills are OK but reaction to Avelumab has meant hopitalisation each of the three times. Antihisamin and paracetamol were administered but it became necessary to have sugar, extra blood pressure medication and a flush infusion. The incontrollable shaking was the most shocking plus the feeling of severe coldness.
I will have a short break and continue as further steps will be taken to control tha reactions. These are new combinations which produce different effects on each patient and vary each treatment cycle. The hospital and myself are on a learning curve.
The coughing has subsided a lot.
I do find the extreme tiredness an inconvenience but have learned to sleep and not fight it.
I need to see my eldest grandson marry next Spring and the younger two complete piano grade 8 at Christmas with the youngest on course for a successful musical and theatrical career.
it is comforting to activate this site and see what others experiences are.
We have too much to live for and no time to stop.
Good luck with you future.
Hubs was very cold and shivery when we got home, he has an electric throw which I put on and he very gradually warmed up, having dinner helped too. He slept much of the evening, and fairly well overnight too, also this afternoon. He’s quite annoyed at feeling weak and not really that reassured by me saying it’s a ‘normal’ reaction!
Hope everyone manages this combo and does well on it!
Hugs xxx
Moomy
Hi I had 2 cycles of Avelumab as part of a trial for Hodgkins Lymphoma. The first one made me very confused and quite scared my wife. After that aside from some joint pain which ibuprofen coped with It worked very well for me. Don’t let him drive himself because part of the premeds Is piritin which will make him very sleepy. Hope this helps and all goes as well as it can.
Thanks for that, yes he did get Piriton which didn’t surprise us, but we get transport anyway as he has spinal stenosis so although can walk with 2 sticks it’s only around the house, any further needs a wheelchair.
He’s still sleepy now a day on! Maybe that’s also the Axitinib in combination?
Hugs xxx
Moomy
Hi Moomy,
My hubs has just has his 3rd infusion and I can see an improvement, his cough (lung mets) has improved significantly and his heamoglobin levels have stabilised. We are noticing more and more minor side effects. Recently he has started to get a blistery type rash on his scalp which itches and drives him mad. He’s been given some lotions which seem to help for a little while before it wears off.
Sending you and your hubby my best wishes, hope he feels better soon.
xxx
Thanks, Gigi1973, that’s encouraging., as I have wondered if it’s doing any good, but also how soon we’d know.
But we did pot on the remaining 4 tomato plants this morning, me doing the fetching and carrying, him doing the actual potting. He’s just so frail.
Hope your hubs continues well….
Hugs xxx
Moomy
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