For people having an ileostomy or colostomy or living with a stoma. Support each...
A support group for patients with Lynch syndrome (also known as Hereditary Non-polyposis...
I am so sorry for you both . But so pleased to hear you asked about his mutations . Nice are currently reviewing Immunotherapy and I am holding out for it . That sounds an incredibly difficult meeting and you were right to pause and collect your thoughts as a couple . We had a similar first experience and it was dismantling. It can be so much more supportive than that . A little humanity as you said . He does not know how he will respond to chemo and it can be an incredibly successful treatment . It changes things significantly for my mum although she had it for two years . Many people are currently using palliative chemo and it’s working well for them . Nice have brought out some new guidance on maintenance chemotherapy . They can also add in local treatments if the opportunity arises .
Its an unknown at the moment and we have been there . But there is hope in that as he may be super responsive.
Thinking of you both ,
take care ,
Thanks so much for your reply - you are so thoughtfully supportive on this forum. I didn't see it initially though as it didn't come up on the recent posts?
I actually arranged for us to talk to the consultant again yesterday afternoon on the phone as regardless of his manner, we still need to feel better informed. He was actually much better and took a long time to go through all the questions I had mailed him following the Tues appt. Rob and I need to talk it through but think we will prob go for Folfiri + panumamub if wild type and self funded Avastin if mutated. They are testing for MSI too re immunotherapy although not sure how much success with this with met bowel cancer?
It is hard to know how hopeful to be though - Rob finds hope risky, which I understand. And some of the time he can barely function with the pain of contemplating leaving the children. It is so hard. I'm hoping it will ease a little so he can enjoy some things but this may also be difficult if he finds the chemo v hard. But at better points we are working hard on a v diligent diet overhaul with exercise to add once his op wound has fully healed.
I think it’s great you managed to get a better chat . Probably away from the pressure of a busy clinic as well he had more time to spend . I do agree with you though . Despite being dismantled by his approach we had heard my mum’s Oncologist was very good with disease management . So we kept him on board and actually developed a good relationship with him once we all got used to his approach and to be fair he was pleased with her response in the end .
That seems a really sensible approach you are both going for . Such a shame Avastin funding was removed . You would probably need to pop over to the American forums to get an overview of immunotherapy. It’s had such good results it’s now first line treatment for MSI patients . Some are now just completing their two years of treatment with no visible disease and being taken off treatment to see what happens. Still a lot of unknowns but some good results . My friend has had a great response for lung cancer with a spread .
I totally understand your husband being cautious with his emotions . To be honest out of all our family I was the most pessimistic. I thought they had all lost perspective. However seeing her CEA starting to drop gave me a boost . Then did it not go and spike upwards , a painful wait for a few more cycles and a great scan was such a boost . Just knowing it was achieving something gave us strength in itself . But he will be raw with his emotions and must protect himself . We were greatly encouraged by some of the nurses who were still treating patients just with chemo into their six year and that was ten years ago before a lot of the current treatments were being used .
Having read a recent post on diet we have made some changes here too . Interestingly enough my sons have gotten on board with the whole tree nuts aspect and keep prompting me to buy more .
Send your husband our best wishes and we are holding out for significant shrinkage .
Thanks so much again for this Court. I'm currently on the train to London for liver and oncology 2nd opinions & feeling very anxious. Im going on my own in case it's 2 more people who are so keen to ensure we have no 'false hope' that they leave Rob unable to function with the awfulness of it. What I'm hoping for is more info although it's frustrating not to have test results back yet. I'm cautiously interested in immunotherapy as MSI-high is more likely with right side tumours but only think that is funded here later in process if at all? & consultant said it only added a few months. I can see he is highly experienced but he is so grim - like visiting the grim reaper... Any info on that v appreciated.
Will let you know how I get on later
All the best for today ! Very wise protecting him at this stage . Interestingly the surgeon told my mum her outlook in a way that was realistic but reassured her that they continued to reassess the situation and if treatment opened up a surgical window they would look into it . The oncologist seemed concerned that she had not accepted the reality of her situation and the whole experience was dismantling.
One thing I did observe the language pre treatment was roughly the same . Until they get a feel for how effective chemo is they temper what they say . After treatment I noticed quite a change . You could almost see them visually thinking about their approach over the next few years , which was nice, until we started to hear things like “ this works well for you “ etc .
I will send you a friends request and let you read some of the accounts of immunotherapy. Also some of some people who have disease over both lobes . It can be interesting to see their treatment pathway .
We have snow here . Hope the weather is better for you .
Hi I haven’t been on this site for a little while and don’t want to interfere but I was operated on by a brilliant liver surgeon in London,I also had a great oncologist. I didn’t have liver mets bute also does general surgery. I watched a video on youtube in which he explained to other surgeons about removing tumours and /or performing RFA on ones that are more difficult to remove.i don’t knowhere in London you are going to but this hospital saved my life when my previous hospital gave up on me . I am very happy to share any info if it helps.
Thanks so much for your responses. The 2nd opinion oncologist was pretty much the same but the surgeon was certainly more humane and a bit more positive - but he will need to respond well to chemo. I knew I wouldn't get any different answer on his current status as he has lesions scattered in every single lobe.but it was good to meet someone kind who though other non surgery options possible further down the line (sirt or dibiri).
His test result have come back - no mutations which is good. Not MSI high so not suitable for immunotherapy but from my reading it seems that immunotherapy responses still variable for colorectal and he is more likely to respond well to chemo without MSI so we will take that (although the original r side tumour still against him).
We also went to the Care Oncology Clinic & he has just started their protocol of repurposed drugs which we are feeling v positive about. Along with a v major diet overhaul, continued exercise & attempting relaxation, we are hoping we are upping his chances. Still can't get over the fact that whilst admitting that he could respond well enough to recover, that because the chance is slim, they take every opportunity to reiterate that they are not trying to cure him - palliative only. Being desperate to prove them wrong doesn't do any harm either I think!
So as good as it could be right now although I'm exhausted & returning to work tomorrow. I'm also having a colonoscopy myself on Tues just to be cautious - with 2 children at home I have to stay well. It all feels so difficult though. Everything is about living and dying.
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