Jimmy, My Dad, was first diagnosed with stage 2 gastric cancer in May 2014, and told it was in-operable. He was treated with EOX chemotherapy for 6 months. This reduced the tumour and enabled the doctors to do a total gastrectomy in Feb 2015. He was cancer free for 18 months, during which time he lost alot of weight, 1.5 stone, with all the digestive issues that comes with gastrectomy( diarrhoea, fatigue, weight loss, etc.) He is now just below 8 stone, and very weak but still eating small but often.
Sept 16, the cancer has returned again in a different site and he is now undergoing chemotherapy again.
I have heard of the ONCOFOCUS test , which is a way of testing the tumour and identifying the genetic structure of the cancer to match it with new drugs for treating cancer, called targeted therapies. It cost about 1800, but thats not a problem if it can help. Does anyone have any experience of doing this test? And if so did it identify a therapy that worked on fighting the stomach cancer.?
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D1Carol
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I do not know about chemotherapy drugs, so the oncologist is the best person to help you with this. Some cancer tends to be like a virus, changing its form in response to different drugs, so the way that drugs are targeted is often the result of looking at each individual patient's situation.
Thank you replying to me so quickly. We have discussed the Oncofocus test with our oncologist already. He's not that keen. So perhaps he knows it will not be much use. Dad is starting a new round of chemo this week.
On another matter, have you ever hear of a product called LENTINEX? It is an extract from Shiitake mushrooms which is suppose to boost the immune system and help the patient cope with chemotherapy better. Just wondered if anyone had heard of it.
I have not heard of Lentinex. I would always be careful about the claims for these things, but if it is not expensive, won't do any harm and might do some good, it could be worth a try. It is hard enough going through this treatment that anything that brings some comfort becomes valuable.
I first heard of Lentinex in 2014, from a USA cancer support forum group. Apparently, it is used extensively in Japan treating gastric cancer. A patient on this forum went to Japan to get it for himself, because apparently there they give it by IV to gastric cancer patient, in conjunction with the chemo. He said he extended the life expectancy of the patients considerably. Wonderful claims.!
Japan has a very high rate of gastric cancer and there are many clinical trials over the last 20 years supporting these claims.
Anyway the company making it in the EU, GLYCANOVA have EU approval for the product, as a dietary supplement. And they say they are in discussion with Cancer Research UK about trials in the UK.
I was hoping someone on this support group had heard of it, and possibility tried it.
It is cheap at 10 GBP a 50ml bottle, and even if it doesn't work , it doesn't seem to do any harm.
I'm really sorry to hear abot your father. I don't know of this test specifically but have some thoughts on the route you are considering. I would suggest asking your oncologist in the first instance whether they have profiled the tumour to assess whether any targeted agents available on the NHS would be apppropriate and whether these have been considered as part of the treatment plan. Chemotherapy is the standard (international) approach for advanced/recurrent gastric cancer and there are a variety of combinations. I believe the only targeted agent in the UK approved for gastric cancer is herceptin (Trastuzumab; which targets the HER2 receptor - about 20% of pts with gastric cancer are HER2 positive) - NICE recently rejected another targeted agent called Ramucirumab which targets the VEGF2 receptor but patients already receiving it are continuing therapy. These are the two obvious targets but if the tumour is VEGF2 positive you will likely face problems with accessing the drug through the NHS but it will be available privately. If you go ahead with the test (need to think about how they will obtain tumour tissue) and they identify targets and associated drugs that are not proven as being of benefit in clinical trials for gastric cancer, you may face an uphill struggle trying to find an oncologist who will try an experrimental agent in this setting and there will likely be no funding from the NHS, so you may have to go private if you chose this option. I'm assuming you're in the UK but if you are not, ramucirumab is approved in the US and EU for gastric cancer (probbaly elsewhere as well) - it's approved but not funded routinely in the UK based on the NICE recommendation. Sorry to be negative in this respect but your oncologist should be able to disucss all of these options with you and your dad.
Thank you for this helpful response. My Dad's cancer is HER2 negative. Our oncologist is not very keen on the Oncofocus test when we discussed it with him. He doesn't think there is enough evidence from clinical trials to support the claims. But I can't help thinking that more information can only be useful and we are running out of options.
I don't know if Dad's cancer is VEGF2 positive? Is this something the Oncologist would know from the removal of the tumour? Also do you know why Ramucirumab was rejected by NICE? Was it due to its side effects or was it cost issues?
Also we are not in the UK, we are in Dublin , Ireland.
Hi Carol, it would depend on whether it was tested for at the time - Ramucirumab was approved in the EU for gastric cancer in December 2014 and as your dad had his gastrectomy in February 2015 they may have checked VEGF2 status given the drug was available - but that might not be the case. Even it it was checked I'm not sure whether the tumour status over two years ago would still be valid now (either way, negative or positive), given the way tumours adapt and evolve. NICE rejected ramucirumab on cost grounds. The cost per patient was set to be £42000 in the UK based on extending life by an average of 1.4 months (latter varied by patient). Some companies have a compassionate use programme for access to drugs but I don't think Lilly (the manufacturer) has one in place for ramucirumab in the EU although it might be worth asking your oncologist and perhaps doing some internet research yourself. Your oncologist might also be able to advise on access to other targeted (experimental) agents through clinical trials - your dad's hospital may particpate or you may need to be referred to a regional participating hospital. You can also search for trials on Clinical trials.gov.targeted agents that are being trialled for gastric cancer, but do not target HER2, include panitumumab (Vectibix), sorafenib (Nexavar) and apatinib. Hope this is of some help.
Thank you again for all this useful info. I will talk to our oncologist about these drugs, and if they could be of any use to my Dad. I know that the oncologist is reluctant to use experimental drugs, he wants evidence, but if we have exhausted every other option, there's not much to loose.
May I ask how you come to be so knowledgable about these drugs?
Are you a gastric cancer patient or have you a medical background?
Hi Carol, the drugs I mention are not licensed for gastric cancer and so could only be accessed through a compassionate use programme or a cinical trial. My background is in drug development (pharmacologist) and I'm an (ex) oesophageal cancer patient (5 years post-diagnosis this month).
Thank you again for this info. I am delighted to hear you are 5 years post diagnosis . It gives us hope. In 2014 when my Dad was first diagnosed with non operable stage 2/3 stomach cancer, he was given 6 - 8 months. He astounded the doctors by still being alive in 2017, although the last 3 years have been very difficult for him, with eating difficulties, chemotherapy, major operations and now more chemo. It is very good for us to hear some positive news and help such as yours.
Regarding any particular commercial service, it is too early to say but, certainly the scientific rationale is entirely valid and if proven over time is likely to become the guiding principle in a majority of medical drug selection procedures.
Any reasonable effort to improve your Dad's situation is worthwhile and if you can afford the cost it could prove to be money well spent - additional information seldom goes amiss provided there is someone qualified to interpret and act upon it.
However, as DavidP points out be prepared for implementation difficulties and take great care that any privately undertaken protocol does not disqualify him from ongoing care under the NHS.
COPY OF RECENT PRESS ARTICLE:-
Eilish O'Regan -Author
March 28 2017 2:30 AM
A revolutionary new test, which takes the "guesswork" out of deciding what treatment will be most effective for a cancer patient, has been launched in Ireland.
Dr David Fennelly, oncologist at St Vincent's Hospital in Dublin, said the Oncofocus test has great potential to improve the survival of cancer patients.
This will include not just the newly diagnosed but also those with advanced cancer who have already undergone chemotherapy and are desperately running out of options.
The genetic test allows doctors to match the individual patient's cancer with targeted therapies, which are modern drugs that work in a different way to conventional chemotherapy by going after the cancer cells' inner workings.
"Without the test you have a response of less than 5pc. If you have this test it increases your response rates by 30pc to 50pc. It is a huge step forward," Dr Fennelly said.
The test was developed by Oncologica UK and Dr Fennelly has recently applied it to a number of his patients.
"I get a report back with a list of mutations and potential targeted therapies," he said.
The technique sees a patient's individual genetic mutation, which is causing the cancer, tested in a laboratory.
The screened tissue sample is the same they provided for a biopsy so they do not have to submit to any blood test. It works for all cancers including solid tumours, leukaemia and lymphoma.
"What we are doing with the test is personalising the treatment.
"It does not matter if it is breast or colon cancer or whatever - what matters is the kind of mutation and how am I going to target it. The drugs are there and this allows us to find the right patients for them."
He is seeking a meeting with Health Minister Simon Harris to ask that this test, which is now available through Oncologica Ireland, be free to public patients.
Health insurance companies are also to be presented with the findings in a bid to secure cover for private patients.
It costs around €1,800 but other tests which have less range are more expensive.
The right targeted therapy treatment means a patient also suffers fewer side-effects when compared to chemotherapy drugs.
The evidence-based test is currently carried out at a laboratory in Cambridge in England and it has a turnaround time of around 10 days.
In Ireland an average of 40,000 cases of cancer are diagnosed each year.
Patients who gain particular benefit are those for whom several rounds of chemotherapy have failed.
"By putting them on targeted treatment you can improve their response and survival," Dr Fennelly said.
He said personalised medicine is the way of the future.
The hope is that one hospital laboratory here can eventually do the work.
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After surgery for Gastro-Oesophageal Junction cancer has anyone experienced problems with bile?
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