We found out yesterday my husband has stage 4 bowel cancer and we are waiting for a PET scan, he is 39 and was, active and healthy until last October he had pains in his abdomen, it later turned into a mass, at first drs suspected appendix and he was on antibiotics for 2 weeks.
I'm not much of a writer or involved in forum discussions, I'm terrible at vocalising my thoughts and feelings but right now I'm so lost.
My heart is breaking, my chest feels tight and my head is whirling. I want to be strong for my husband and I'm so scared of losing him. I feel so nauseous and scared yet I want to be his tower of strength. I feel so alone but I dont want to make it about me.
God I love him so much it hurts
My husband has the kras mutant, he is to start chemotherapy, oxaliplatin-capecitabine capox treatment in 2 weeks.
They don't offer avastin or private treatment but happy to send us for referral about 1hr drive away if we want. Right now we decided to move forward with his treatment, would anyone suggest if we should go private? I keep thinking and questioning whether we need to try harder to give my husband the best chance and not let go of any opportunities.
I dont think this meeting with oncologist has given me hope, it actually terrified me, it wasn't he was unpleasant, they were very nice and upfront.
Still worried and wondering what choices to make
Is it wrong for me to think Capox isn't enough? Is it enough? I'm scared it may not have effect on kras mutation. I thought having treatment plan would help us forward but im struggling to process the news that my husbands cancer is caused by genetics and that its aggressive form.
Oncologist asked if we wanted to know prognosis, but I couldn't, we couldn't, selfishly I'm not feeling any better after today, I called my parents, I just wanted to be in their arms and be their little girl again
Hi Yoda1314
The first meeting with the oncologist in a stage 4 setting can be really tough ! For us the toughest one .
Only recently I found out a bit more about my mum’s tumour and it was an aspect that had a poorer prognostic factor . I am so glad I did not know that . However despite it she responded well . Avastin is a tough one to answer . One thing to remember they will monitor his tumour markers CEA . Whilst it has some limitations they will keep a close eye on it and hopefully you will see a downward trend. It’s perhaps not an all or nothing situation as you could look at adding it in at some future point if they feel it’s required. That’s the nature of a stage 4 diagnosis. Review and adjust as required . I would maybe do my homework on it . Find out costings and how it could be administered and keep a watchful eye on his tumour markers .
His treatment is still a pretty powerful combination .
You are probably feeling drained .
Take care ,
Court
You are very welcome . That day is etched somewhere deep in my heart when you sit confronting an oncologist and trying to process what is being told and trying to find a way through .
Just keep in mind it’s still a very powerful combination . It’s all my mum has every had ! Now onwards to shrinkage .
Sending you both much love .
Court
Thank you, there's such a big range of opinions towards Avastin, one of my worries it could cause a burst in his tumor, something oncologist had mentioned.
Theres people saying its not available on nhs for a reason due to side effects, yet some people do manage and respond quite well to it.
We think we have decided to try the capox plan for now, oncologist said we would have other options to explore and at one point he did mention something about immunotherapy but not yet.
There is a range of views on Avastin but It actually used to be accessible on the NHS in England when my mum was first diagnosed. They had a special cancer fund and the oncologist could access it . I am sure it was when David Cameron was first prime minister. Then the bills soared and the fund was closed . Avastin was not passed by nice . Not sure if that was to do with cost or effectiveness. Scotland never had access through the NHS as far as I can understand . If you want to read up on the clinical research behind it I prefer Pubmed search engine . You will be able to assess the clinical implications and possible benefits. I think there is concern around bleeding issues but some people do well . I think this is the history behind it if my memory is correct .
Certainly oncologist have a working knowledge of what they have encountered in practice which does form their opinion .
Depending on how unwell or well your husband is there might be some wisdom in seeing how he tolerates the recommendations and keep communicating with his oncologist. Although they might not offer it they may be open to giving you their opinion on how he is managing and would a third agent be too much etc .
Do you know if he is MSI ? Immunotherapy is just emerging in the U.K. . However for Patients with MSI it has become first line treatment in the US and some very good results . It is also reported to be quite tolerable .
You are doing great getting to grips with all this . There is a lot to take it but you will find a way to move forward with it .
take care ,
Court
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