Ok, I’m putting this out to the masses in the hope that somebody somewhere might just be able to help …

A friend’s sister has been diagnosed with an incurable form of cancer – probably inflammatory myofibroblastic tumor of the stomach ALK negative.

Advice sought already through Royal Sussex, Royal Marsden and even Harvard Med School. Apparently nobody can do anything.

Applying for a clinical trial is one avenue to explore, as is finding a Study Manager.

Does anyone here have any ideas? Any contacts, websites, forums, or anything?

Thanks in advance guys.

My condolences, I lost my mother to cancer earlier this year, also an incurable cancer (though pancreatic in her case).

Any contacts, websites, forums, or anything?

http://www.macmillan.org.uk/ is probably a good place to start, although I’d have thought her cancer team would also be able to inform her.

Condolences to you Mogrim. Cancer is a **** as we all know.

Macmillan have been by her side throughout – and have been brilliant.

I suppose what we’re looking for is a resource that’s kind of off the radar …?

I suppose what we’re looking for is a resource that’s kind of off the radar …?

… and that way quacks and pseudoscience lies. Seriously, if neither MacMillan nor her doctors have heard of any clinical trials I’d be very wary of any you did manage to discover.

One possible treatment I know my mother looked into was NanoKnife, whether that would be an option for your friend’s sister I don’t know. (And I’m not sure why my mother didn’t try this, I can only assume her doctors said it wouldn’t be effective).

Try here: http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/how-to-find-a-clinical-trial

My mother had cancer and it has returned.

She’s having treatment but it is not looking good but she’s interested in trials but might call it a day after having bad responses to chemo and nearly died from stem cell therapy. Works well on others but she was unlucky.

and that way quacks and pseudoscience lies.

Well, the preference would be to find someone in the industry (NHS, oncology, pharma etc) who is willing to run with this. I don’t believe every avenue is always explored conventionally.

Not heard of the NanoKnife so I’ve passed that across.

@Frankenstein: yep, clinical trials defo an option, but I imagine she needs some kind of sponsored ‘buy in’ … I hope things improve with your mother.

My brother works at the ICR.

http://www.icr.ac.uk/our-research/our-research-centres/clinical-trials-and-statistics-unit/clinical-trials

My dad found a lot of comfort from http://www.drkatejames.com/index.htm%5B/*%5D . A doctor whom he said focuses very much on diet to fight cancer. He was given six months initially but lived for a further 6 years . I have no idea if it worked, but as I say he found it great to have an alternative to simply ‘ there is nothing we can do’. Best of luck

I will ask discreetly here, but I’m not medical so I’ve no idea if any of our products will be on trial for this. I suspect any live product (we have one in what seems like the same area to me, but I’m probably comparing apples with oranges) would be well known to the resources already mentioned.

Best of luck regardless.

I’ve lost one sister and my mother to metastatic melanoma this year (not been a great time 🙁 ).

A search for IMT on ClinicalTrials.gov reveals a few leads for ongoing trials. Scroll down to look at sites. The ALK negative status is likely to be a problem, unfortunately, because crizotinib is an ALK inhibitor – that means it targets a mutation in this protein (called an oncogene), and without the mutation, the drug is very unlikely to provide any benefit. Entry criteria for studies will often require ALK positive status. Compassionate use is an option, normally by direct appeal to a company. This is through the treating consultant.

Search URL: “https://clinicaltrials.gov/ct2/results?term=Inflammatory+myofibroblastic+tumors”

EDIT: The CREATE study may be of further interest because the entry criteria states “Proven presence of specific ALK and/or MET pathway alteration in tumor tissue is not mandatory for patient registration.” UK sites are Leeds, UCL, Manchester and Nottingham. Prof Patel at Nottingham treated my sister. Changing treatment centre is an option in such instances.

I believe that Amgen are considering one of their products, Imlygic, for stomach cancer trials. Might be a way off though – but basically if they can inject the cancer site, they are considering trials for a huge range of cancers.

Okay, so IMT’s are a pseudotumour then

“Currently, surgery is the mainstay of the treatment for IMTs. Complete removal of the tumour generally provides resolution of all symptoms and laboratory abnormalities. However, tumours in intra- or retroperitoneal locations tend to invade adjacent structures, preventing curative resections and breeding local recurrences.4 These patients require further management. Unfortunately, chemotherapy and radiotherapy are not successful in most patients. Recently, researchers have published promising results with anti-inflammatory agents5 and anti-tumour necrosis factor-? binding antibodies.”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2689747/

Have a read and poke around journals, eg http://bmcresnotes.biomedcentral.com/articles/10.1186/s13104-015-0993-3 and http://cancerdiscovery.aacrjournals.org/content/4/8/889.full

“In contrast, there are currently no data about potential oncogenic “drivers” in the ALK-negative subset of IMTs. We identified actionable kinase fusions in 8 of 11 ALK-negative IMT tumors analyzed by targeted NGS, including ROS1 and PDGFR? kinase fusions, which have not yet been described in this disease. PDGFR? kinase fusions have been described in myeloproliferative disorders (18). ROS1 kinase fusions have been detected in a variety of malignancies, including lung cancer, glioblastoma, cholangiocarcinoma, and Spitz tumors (reviewed in ref. 19). Crizotinib, which is FDA approved for the treatment of ALK fusion–positive lung cancer, is also a potent ROS1 inhibitor. Preliminary results from the phase I clinical trial of crizotinib in ROS1 fusion–positive lung cancer demonstrated an objective response rate of 56% (9). However, responses in other ROS1 fusion–positive cancers have not yet been documented. Here, we report that a young boy with ROS1 fusion–positive IMT responded to crizotinib. This was the first antitumor response this patient has experienced since his initial diagnosis more than 2 years before starting crizotinib; his tumor previously did not respond to four different lines of therapy, including cytotoxic chemotherapy or anti-inflammatory agents. His tumor mass decreased in size, his paraneoplastic anemia improved, and he felt better symptomatically. This case clearly illustrates the need for improved diagnostic and therapeutic paradigms in this disease.”

From the last link. Contact the team, be prepared to travel and pay a **** tonne of cash for off-label use that may or may not work.

Am currently on the move so this is just a quick thank you to those who have posted. Will write something more constructive tomo.

My wife’s oncologist is into his research – part of Nuffield, teaches at Addenbrookes and Cambridge- he’s signed my wife up to a couple of trials , tweaked standard meds for maximum effect. He specialises in a different area but he’s well connected so would point you in right direction – search for Dr Russell, Addenbrookes, Nuffield and you’ll find his deets.
Good luck

That sounds both really rare and not very nice. The organisations you mentioned would usually know.

Ignore rubbish like the link to Dr Kate James above.

Hope you find something rather better than that.

The problem is that cancer* treatment is highly personalised and depends completely on the size / type / location / spread of any disease and a person’s background. An option that you can read about online may not be suitable for individual patients, and you run a pretty big risk of discovering snake oils and sharks that would relieve you of money.

I would speak to the oncologist with a (pre-prepared) list of questions. If you are not satisfied with the response then get a second opinion.

*Apparently IMF is not always considered a cancer.

It all depends though, if there is some theory behind off label use – then if you have the money – it could work, you just have to be prepared to be a space monkey and piss your money up a wall in the name of science (clinicians getting to publish a case report.)

Just wanted to say thanks again to those who’ve posted. I’ve passed everything on.

Definitely some good avenues to pursue, especially that CREATE study if it’s still available – it at least looks applicable from a layman’s perspective.

If anyone knows of anything else then please share … tvm.