Peritoneal Mets - Scan Results and Prognosis

Hi 

Can I just say you remind me a bit of my mum ! Your photo is brilliant. Your fitness level is very impressive. 

My mum also had surgery over her 69 th birthday. The largest to date and was also very fit when she had her lung resected around her 73rd birthday . She has lost ground a bit lately and back to walking again to address this . Anyway I digress as usual !

So pleases to hear you are referred to Jamie Murphy . Seems to be the name that pops up when requiring more aggressive intervention . Some of the criteria for Hipec seems to differ quite significantly between facilities ! However the Pipac sounds very Promising .

Just a thought do you know if your MSI or MSS . I think ( would need to check!!) some funding is temporarily available for some immunotherapy If you are MSI . Would need to look into it again but I think I read that somewhere . Might be an avenue to investigate in the background . 

Have you had a second opinion with Jamie Murphy aside from the trial ?

One surgeon was all for putting my mum on a trial where the observed her lung mets . I could see he got quite a shock to see how fit she was at the time and we advocated for surgery over observation . Only time she was ever operable without chemo . Like you she did have some minimal tumour growth if she was off treatment but they just said it was to be expected ! 

Take care ,

Court 

Thank you Court. During my Cancer journey have been struggling for information, and there are still gaps.I have no ideas of my MSI or MSS or what they mean. I have acquired my information by asking lots of questions as none was volunteered.

 Before my last consultation I submitted in writing a number of questions to my Oncologist, which he found helpful, and was able to respond to questions I previously raised verbally, but unable to respond to. One of these was with regard to targeted therapies, and nothing could be offered, either because of my gene, which excluded Cetuximab or not funded, such as Avastin. You are in a favourable position in Scotland as under the devolved Health System they have autonomy over what can be prescribed and there are Cancer drugs available to NHS patients which are not available in the rest of the UK.

The PIPAC referral was also as a result of one of my written questions. He must know by now that I am very persistent when it comes to asking questions, as I had raised that previously. I was on the point of raising my concerns at the lack of communication with the Patient Liaison Service, but their advice is that one should first seek to address the issues with the Clininician concerned.

inwas indeed heartened to hear Jamie Murphy mentioned as his name has popped up many times before. As you mentioned different Centres have different criteria for surgery, and Jamie Murphy is said to take on more difficult cases.A

PCI Score of 20 has been reckoned to be the cut off point. I asked my Oncologist about mine, and he did not know, or how to work it out. As you probably know it is based on a tumour count of 13 sections of the abdomen, with a maximum score of 3 to each section, so maximum of 39 overall. I do know from another forum that someone with a score of 29 had been accepted for Jamie Murphy’s trial. The best case scenario is to achieve shrinkage and be a possible candidate for surgery.

In the meantime also have to consider worse case scenario, which is survival time in months and need to have a talk with GP about end of life care.

Actually I did not know that so if you don’t mind I will bookmark this thread to share with others .
. 

We have had to get our elbows out a few times too which is why for years I stayed here and advocated getting a second opinion as it changed the course and outcome for my mum .

If you read up on Keytrunda it is for Micro Satellite instability. MSI . It is the same Immunotherapy that is used in lung cancer and melanoma .A different function from the targeted therapy I think although very confusing as they seem to use the same name . I think England might just be the winner on this one as I think during COVID they released it . It is first line treatment in America and results are favourable. Not sure if the government here is doing the same . Let me get better information for you and I will try and link it in as it’s worthy of a read . You also might have a look at how it is used  in America .

I will track it down and pop it on later . Thankfully we can at least share information . Although with the usual caveat. I am so not a doctor !!! 

Two sons doing uni today from their bedrooms and I seem to be the replacement canteen !!

take care ,

Court 

www.nice.org.uk/.../interim-treatment-change-options-during-the-covid19-pandemic-endorsed-by-nhs-england-pdf-8715724381

If you have a look at the section for colorectal cancer below the targeted treatments  it will give you the advise on the nivolumab.

Not sure the timescales but worth a read . 

Thanks for these responses. I do feel at a disadvantage to many on forums as with the exception of the PIPAC referral after a request in wring the options have been systemic chemo or nothing. I did submit a written request for targeted therapies, but told none due to gene or excluded by NICE. I mentioned a few in my telephone conversation but the answer was no for either reason. 

in Scotland the regulatory body is the Scottish Medicene’s consortium and the have authorised Aflibercept, which was recommended to me as an alternative to Avastin, which is excluded by both. My information is this link, one of many I have bookmarked: -

https://www.cancerresearchuk.org/about-cancer/bowel-cancer/advanced/treatment/targeted-cancer-drugs/about

My knowledge is increasing all the time, but it has made me feel frustrated and impotent as few options. Many cancer patients are happy to know nothing, happy in the belief that Doctor knows best, but I have discovered too many cracks in the system.

It’s so hard when you can get benefit from a treatment and it turns out to be a postcode lottery 
.

I have noticed that some people are overwhelmed and don’t desire to pursue other options . It totally changed my mum’s prognosis but I do think it’s sad that the system in a stage 4 setting requires individuals to be capable self advocates at the very time in their life they should not have to . We are so fortunate to have a wonderful oncologist currently and it’s nice to have that level of trust .

Hoping you hear something soon about the trial .

take care ,

Court