Suggestions on where to go and what to do next

[BritinCanada]

Be warned I'm all doom and gloom right now I had my last chemo on Thursday and have fallen into a bit of a funck feeling sorry for my self. I'm sure it will pass in a couple of days but until then I thought I would do something constructive and ask you wonderful people for some guidance before I see my oncologist.

I've been on chemo for the last 18months. I have spreading to the peritoneal. Everything works for a bit then stops, currently I'm on cetuximab and irinotecan. I'm having mixed results, mostly there is shrinking but one spot grew slightly. Also a cyst on my ovary which we had been watching grew and it is confirmed as cancer now. Very slowly my ascities is increasing, although not as badly as when I was off the chemo. I'm being classed as stable right now but obviously the results aren't great. We were headed down the HIPEC route but I believe now that's not controlled that's off the table.

So does anyone have suggestions on where to go next? Suggestions for treatment? I have the option of pushing for treatment in the UK but don't know much about their treatment of this cancer. What about USA? I assume if you aren't stable then no one will do HIPEC or PIPEC. i have an appointment with the HIPEC team at the end of the month but my oncologist is already saying no surgery. It's so frustrating as its just this one small area with minimal spread. Otherwise I'm fit and healthy and coping well with the chemo.

And to make matters worse it's back to school tomorrow so no lazy mornings...and it's snowing.

[Rock_Robster]

“No HIPEC until it’s stable” sounds a bit odd to me, given peri mets typically don’t respond famously well to IV chemo. I’d definitely be waiting for the opinion of the HIPEC surgeon and not taking the oncologist’s word. If you don’t feel they are being suitably aggressive then you might seek a 2nd opinion at a high-volume CRS/HIPEC Centre. For all it’s challenges, CRS+HIPEC remains the gold standard for peri mets and best shot at curative treatment (assuming you aren’t an immuno candidate or looking at immuno trials - which could be a good angle to pursue in parallel).

[NHMike]

Was a genomic tumor test done to rule out immunotherapy or targeted drugs? I assume that blood tests were done to rule out Mismatch Repair genetic issues.

[stu]

Hi ,
I will start of with my disclaimer here as I have no personal experience nor have researched into Hipec in any shape or form but on the UK forums there is a name that comes up of a surgeon in London who does the more extensive pelvic surgeries . I think it’s Jamie Murphy ! I will check it out .
The thing is you can send your scans for review without too much inconvenience. I always think getting as much information from other surgeons sometimes helps you make a fully informed choice . It can help direct you down one route over another or even away from it .

I also think the above advise is worthy of exploring .

So sorry you are feeling rough and who would blame you . That’s a lot of treatment . Maybe the upside is it’s given you the push to investigate more avenues .

Hope you pick up soon ,

Stu

[Rock_Robster]

Sorry one other thing to add; I just noticed you asked for ideas as to where to go for this. A couple of more renown HIPEC centres would be:

USA:
- Dr Sugarbaker, Washington Hospital, DC (inventor of the procedure)
- Dr Sardi, Mercy Hospital, Baltimore

UK:
- The Christie, Manchester
- St Marks, London

Purely on a cost accessibility basis, without US insurance, as a UK national I suspect the Christie / St Marks would come out ahead. Dr Sugarbaker’s reputation is unparalled however.

Good luck,
Rob

[BritinCanada]

Thanks for the replies.

Feeling slightly better today, I'm beginning to suspect I've got a bug from the kids as one of them is starting to get sick too.

I decided to keep my appointment with the surgeon despite my oncologist thinking I should cancel. I really want some firm answers on why I'm not suitable for the surgery. Right now my mets aren't out of control, seems like the best time for the surgery to me. Why wait until they are worse. It's very frustrating as I really like my oncologist and he's normally very agressive so I'm not sure if he's just dropped the ball or there are some restraints regarding public health care I'm not aware of. Although I would imagine the money for HIPEC wouldn't be as much as my chemo for years.

I have joined a few UK forums and have been researching names mentioned there. And I will be gathering my notes and scans to send off to them, I will also ask about the testing on my tumour. I think UK would be preferable over the USA, my family is there and the children and I would have somewhere to stay. But I will investigate my US options too.

I'm feeling very frustrated right now but that may be a good thing if I get better care.

[stu]

It might just be the push you need .

Try BowelcancerUk . They have the most information on Hipec patients and I think some of the members there have a stage 4 Facebook page and share a lot of information that might be helpful to you . One thing I have learnt from reading is the centres of excellence for Hipec have slightly different criteria . Some are more conservative in the patients they select . So you will get a feel for it from the forum . Might give you a bit of an advantage getting informed before you seek out the best unit for you . What has been reported that some centres say no your not suitable for our criteria but others have surgeons with the skills to go a bit further surgically . I personally don’t know which is which but I am sure it would be easy enough for you to catch up on the chat .
I obviously don’t know your level of tumour burden but I think you will find it useful and they are very helpful if you post a question .
Take care ,
Stu