Immunotherapy for bowel cancer

Hi  I can't help your query, but can send a ((hug))

Hi Gemmary, 

Hope you are feeling a bit better.

Thank you so much for the hug and I am sending you one straight back!

Lots of love xxx

Hi ,

It is disappointing news when you previously had a clear CT . However it’s operable and has several other treatment choices and that’s the main thing ! 

My mum has aimed for surgery every time however it took chemo to get her there on two occasions.

America is a bit ahead of us in its use of immunotherapy. They use Keytrunda for MSI patients as first line treatment but I think the priority is still surgery in most cases . Was that the name of the Immunotherapy mentioned ? It’s also used with lung and melanoma tumours that have spread . It has not been too readily available before but I think I noticed that it was under review by NICE .

I have followed a few inoperable metastatic colon cancer patients who are MSI and have had good outcomes . 

Their is quite a lot of information online .

Take care and it won’t be long until your over this bump and back on your pathway to full recovery . My mum’s first oncologist was a straight talker but the plus side , when he said something positive you knew it was for real !

Take care ,

Court 

Hi Phoebeb21

I hope you have had some good outcomes on your journey after this post??

I currently find myself in a very similar situation. I had a larascopic resection to remove a tumor last year and have just been told the cancer is back in 2 places - in the remaining bowel and also in one of the original operation port scars. I flagged up a lump twice and was cleared in 2 seperate CT scans.

I've been referred back to the Christie and currently awaiting 'a plan' but my surgeon said surgery was unlikely at the moment. 

I'm 36 and would like to have a good understanding of everything moving forward to hopefully beat this.

Please can you update on which avenue you went down and how you've got on? I hope it's good news

Thanks

Andy

Hi Andy 

I had Nivolumab Immunotherapy for  few months earlier in the year. I had excellent results from it. The scan after 3 months showed no active cancer.

Unfortunately I developed Immunotherapy induced hepatitis and my liver enzymes shot through the roof, so the treatment has had to stop and I have had slight progression of the residual cancer on the duodenum. This has been reported as low volume met. I have no widespread metastatic spread.

I have been on high dose steroids for about 3 months which made me feel quite unwell and have had a couple of stays in hospital. I have had a stent inserted in the bile ducts which have greatly improved my liver function which is almost back to normal. 

I am waiting to see my consultant to see what the next step will be regarding treatment. 

Is is doubtful that I will be able to have the Nivolumab again but my oncologist has said he will offer me chemo when I am well and strong again.

He has also said that it may be possible to revisit the surgery option at a later date if appropriate. 

I have had CT scans, MRI scans and a PET scan and the MDT are very unsure whether the bile duct was blocked because of a gallstone, or inflammation from the high liver enzymes or indeed metastases. whatever it was it developed very quickly.

I hope you get some answers soon regarding your treatment, the immunotherapy was going so well and I was very disappointed when it had to stop.

Good luck  Andy and let us know how you get on.

Take care x

Hi Phoebe 21 just want to send hugs. Mine has come back on the bowel and I have surgery Friday feeling scared. Take care Nelly 55

Hi Nelly1955

I am so sorry to hear that your cancer has come back. I have been reading the messages on here but have been a bit in limbo with not knowing what is going on with me. I have also felt quite poorly.

I am waiting for my liver enzymes to stabilise and my Oncologist has said today that he has at least 2 chemo options and a targeted therapy to offer me, and maybe even surgery at a later date.

I am incurable and the treatment will be palliative, but that is fine, at least I have treatment options.

I am so glad that you can have surgery Nelly, I would love to have surgery first but at the moment no one wants to take it on. I have had a couple of opinions from surgeons at different hospitals and it hasn't been completely ruled out for a later date,but just not at the minute.

I hope your operation goes well and I will log in everyday now to hear from you and how everyone is doing. I just felt I needed a bit of a break as I felt a bit overwhelmed by cancer and that was all I thought about.

Take care Nelly, I am sending you a big hug and this time next week you will feel so much better with the cancer away.

Lots of love xx

Hello 

So sorry to hear you are not feeling so great just now . I know you have a great team who will manage your care well . Also good to know surgical options are available for the future . 
But I also understand the lack of knowing and certainty of timings brings its own hurdles to navigate .

Hope your family is well too !

You are quite right to take the time you need . That’s very sensible and sometimes you need a bit of self preservation in life .

Still good to see your name pop up though .

Much love ,

Court 

Hi court

Lovely to hear from you. My family are all great thank you and hope yours are too! Hope you are all snuggled up and keeping warm in Scotland! 

I am starting to feel a bit better and a lot more positive. 

I have to tell you what happened today, I was with my sister and we FaceTimed my daughter to tell her about my hospital trip today! I was saying that I could have chemo and hopefully would achieve shrinkage and have an op later on, and her very words were … Yes mum! Because remember courts mum had chemo first and look at her all these years later! So a lovely lady in Scotland has not only given hope to so many of us on here, but is remembered and talked about by a thoroughly modern 26 year old from Warwickshire! 
Please tell your mum! 
Lots of love xxx

Hi Phoebeb21 

Thank you for taking he time to get back to me

I'm sorry to hear that you have had complications with your immunotherapy especially when it seems to have been doing well for you. 

I know these treatments are 'works in progress' and I'm hoping they can tweak it to suit you better further down the line. 

I have been discussed in an MDT meeting today so i'm currently awaiting the outcome of that - i find the waiting in between events quite difficult but im learning to chill out a bit with that and just focus on the positives.

I'll keep you updated and you please do the same - i hope you get some good news when you speak to your consultant.

Thanks again

Andy