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Life with bowel cancer

HH79

Team Peritoneal Mets - PIPAC

Hi all
@Mum37 I found Julie Cornish’s email, PM me if you’d like it.
She said PIPAC not currently U.K. but is elsewhere in Europe although not like NHS. Small trial being organised for Cardiff. A prof called Marc Reymond is behind the treatment itself and photo of more info below. As ever for me personally as para aortic lymphs involved like @Wren17 (how was good scan? Xx) not sure I would be eligible but I shall forever keep researching!!! Also FYI @Highkaren xx

Mum37

Thanks @HH79 will PM you for Julie's details. Hope your doing ok :x::x:

Highkaren

@HH79 @Mum37 @Wren17

Cardiff are slow to respond, they acknowledged my request for discussion as oncologist wrote directly to prog torkington but still waiting for outcome. I have chased and will keep you posted. Just sending my scan results to Germany and Denmark who I have been corresponding with. Watch this space #dterminedcancerwarrior :x:

GD62

Hello @Highkaren

Thanks for your updates? Are there any criteria for potential PIPAC treatment candidates published?

Thanks :x:

Highkaren

@GD1962 , I can’t see any I contacted Germany and Denmark. Who said send scans for review and waiting for a consultation at least with Cardiff. I have rxplained I don’t qualify for surgery and they haven’t turned me down outright in fact I reasearched the results of German trials and some candidates moved from inoperable to operable. I will pursue this as I think anyone with perimets would benefit from this after all it was trialled as option when all else has failed but I’m s believer in trials whilst you are in reasonable health

GD62

@Highkaren , you are a great pioneer on this treatment and not much data available, but it seems like a promising addition on the battle with perimets. I really hope they get back to you either Cardiff or otherwise with a trial place. I think this is where we are missing a trick coming out of Europe, as I used to work for the European Drug Licencing Agency as a pharmacist in London, and now that is going abroad. The shame of it is that the UK pioneered drug surveillance and licensing due to all the drugs and research directly influenced by NHS clinical trials in tandem with industry, We were a great pharmaceutical world leader, now it's pants :x::x::x:

Wren17

Hi@HH79 thanks for the PIPAC details, had scan saturday and get nexts hopefully next Tuesday, everything crossed. Thanks for Cardiff update @Highkaren will see what scans shows and take it from there :x::x:

Mum37

Hello @Highkaren how are you? Are you back on Chemo now? I've got two more cycles then another scan. Cardiff are so slow, I can't believe how difficult it is trying to find out about a trial. Very frustrating :x::x:

Highkaren

@Mum37 ,I’m back on chemo folfiri with alflibercept (known as zaltrap) was doing okay up to this week when hair started to massively fall out so feeling a bit down about that. Cardiff are very slow and have chased again this week....need some answers otherwise will start the Europe route. What chemo are you taking ??

Mum37

I'm also on Folfiri with Panetunimab. Is zaltrap available on the NHS or do you have that privately? Cardiff are so annoyingly slow I don't get it. 3 months ago my oncologist dent a letter and been chasing ever since. It's the irtenotecan in folfiri that makes your hair fall out. I had quite thick hair and has thinned massively. :x::x:

Highkaren

@Mum37 zaltrap is on the nhs, ask about it, my oncologist has other people on it and has seen good results. Attached is a link www.cancerresearchuk.org/...nt/cancer-drugs/drugs/aflibercept

Hair is definitely going to go entirely now have lovely bald patches....thought I was going to be okay with the cold cap but after treatment 3 the disaster struck....losing my hair has been the lowest point of this cancer !! Silly I know in the grand scheme of things ....

Mum37

@Highkaren I know what you mean about hair. I thought I wouldn't be bothered but when told I would loose it thought differently. It's not so much how I look but more everyone will know how ill I am and I don't won't every one looking at me and drawing their own conclusions. Thanks for the link will take a look now :x::x: