anne-bjerkenaas
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Hi Ceusita.
I totally do agree with you, we should get information about all options available, it should be up to us which treatment and medication to use, and whether or not we can afford to pay for it if needed.
I would definitive have contacted Thermo Fisher if I were you, but the office mentioned is for Europe only, I think. I therefore would recommend you to contact the main office in the USA and ask them who to contact in Canada, https://www.thermofisher.com Tell them that what you are looking for is some one that do have access to the oncomine comprehensive knowledge base, which includes all known treatments for known cancer types, as well as which doctor that is working on it, where and if any experimental treatment is tested.
We had the same experience with our health insurance, they do not inform us about treatments and tests available, and they do not cover treatments and medications that are not allowed and recommended inside the Nordic countries. If the tests are not recommended for a specific treatment allowed, they will not cover it. We therefore did pay for the biopsy to be taken in Denmark, we are from Norway, in order to get the DNA-test.
What kind of cocktail mixture do your husband get for his treatment?
Wish you all the best!
Hug,
Anne.Hi Alicia.
That trial was closed for those diagnosed with cholangiocarcinoma in April. If you do test MSI high (microsatellite instability high) you might be able to participate. My husband were not qualified. Thank you for taking the bother informing me
Take care.
Hug, Anne.Dear Alica.
I think you are right. Most onc does not give this kind of information, it is as though they think we do not need it. Once diagnosed Cholangiocarcinoma it is as though they look up on us as “lost cases”, we are not left any hope at all.
I got the information by reading articles and contacting other professors and doctors. I got a lot of information from Kristoffer Staal Rohrberg, MD, PhD Rigshospitalet, University Hospital of Copenhagen, Dept. of Oncology. He is a member of Ulrik Lassens team.
My husband is doing well. He is rather numb in his feet and in a knee, he feels rather exhausted, but all of this is caused by the chemo, he got it last Monday and Tuesday, he will feel much better next week.
Send your mother my greetings.
Hug,
Anne.Dear Pat, thank you. Not everyone of those 20% might get cured, but they may be able to live longer. It is also a great thing that if your cancers -DNA is registered in the oncomine comprehensive knowledge base your onc or the one that did run the test on your cancers DNA will be able to inform you if there comes a treatment, or a trial that fits your cancer.
I have also been told that you do not always know where your cancer did start. It is in fact not always visible cancer-cells where the cancer did start. So, if you are diagnosed for example with cholangiocarcinoma because of the findings only, it does not always need to be the right diagnose, you might have a related kind of cancer. Let me try to explain: If you do find a man on the North-pole, it does not mean that he is from the North-pole, he might have traveled to get there. If you do take a look at him you might be able to tell he is a Chinese, but if you do run a test on his DNA you will be able to tell to which Chinese family he does belong . It is the same with cancer, cancer-cells do travel all over the body, if you do take a biopsy you can not always find out exactly where it comes from, however you can be able tell from which area of the body it comes, and from which kind of tissue, but if you do run a DNA-test you will be able to get much more information about your cancer. So, if you are told that you do have cholangiocarcinoma, or any other type of cancer you should run a DNA-test.
There are several different types of cancers, try to think of it as families with the same last name, one of them is the Adenocarcinoma family. This is a type of cancer that forms in mucus-secreting glands throughout the body. It can occur in many different places, so think of the place where it occur as the first name:
– Prostate cancer is often adenocarcinoma, exorsine panceratic cancer is adenocarcinoma, adenocarcinoma is the most common type of small cell lung cancer, cholangiocarcinoma is adenocarcinoma, esophageal cancer is adenocarcinoma, so in fact you do have a lot of different types of cancer that are related, in a way in the same family, they all forms in the same tissue- the mucus-secreting glands, but the treatment needed for the different types in the adenocarcinoma-family may not be the same. A biopsy can determine whether the cancer originated at the area near the biopsied site or in another part of the body , but I have been told that they newer are able to tell exactly where, in fact, exactly where the cancer starts does not matter. It it the same with the Chinese man, where he was born does not matter, it is his DNA that matters. So, how can you get the right treatment? I have been told that the best way is to examine your cancer by taking a DNA-test and out of the findings you may find the right treatment for your cancer. So, if the chemo you are on does not work out for you it might not be the right chemo for your cancer, you might find the right treatment by taking a DNA-test of your cancer.I do hope this makes sense. An onc, or specialist would be able to explain this far better than me, my English is not as good as I would like it to be. However, the main point is, if the treatment you are on does not work out for you it is because it is the wrong treatment for your cancer. This is why some have very good response on one kind of treatment and others not.
Wish you all the very best!
Hug,
Anne.Dear Alica.
What kind of problems does she get? Maybe there are some medication I know of that you can ask your onc to get for her?
Hug,
Anne.Dear Alica.
Just keep up waiting for a reply from Ulrik. I think he is rather busy at the moment, but I am quite sure he will reply.
You can also try to send an email to Iulia at EMEA.concierge@lifetech.com , I have been told that this is the main office of Thermo Fisher Scientific in Europe, based in Germany, and ask them if there are any places at all in Sweden that do have access to the oncomine comprehensive knowledge base, which includes all known treatments for known cancer types, as well as which doctor that is working on it, where and if any experimental treatment is tested. You can tell Iulia I told you to contact her, send her my greetings.
This goes for everyone else reading this. If you are from a country in Europe, please be free to contact Iulia at EMEA.concierge@lifetech.com, send her my greetings and tell her I did recommend you to contact her. For all of you, please be aware that there are a lot of unreliable companies out there. Make sure you do get the right test. Even some of the companies Iulia did recommend tried to sell us other tests instead of the one we did ask for.
Just forget about europeservice@thermofisher.com, I ques they only do sell equipment.
Take care,
hug,
Anne.Dear Alica.
Please contact Ulrik Lassen at Rigshospitalet in Denmark, hopefully he can include your mother too so that her cancer can be DNA tested. Maybe it will be match for some kind of treatment for her as well.
I did take a look at the link. Is this an information you got from the hospital?
Hug,
Anne.Thank you Gavin. I am always worried about writing something that comes out completely wrong, maybe with a totally opposite meaning. It does not matter if it gives you a good laugh, a laugh only makes living better. I am more worried about not been able to get this important information out to so that it makes sense for you. ( It is as though I can hear my old English teacher telling me “What did I say!” I am afraid she was right, I should have worked a bit more with the language while I had the opportunity…)
Wish you all the best.
Hug,
AnneDear Marion.
As far as I know you can get a DNA-test without any trial, this if you are Danish. As a Norwegian my husband had to get it in a trial.
Take care,
Anne.Dear Marion.
I am sorry, my English is rather limited. I will try to Explain.
In Denmark they do run this DNA -test on your cancers DNA once diagnosed, this if you are Danish. As a result of this you might be able to get more aimed treatment for your cancer, this based on the result of the DNA-test.
In Norway you can only get this DNA-test in a trial called MetAction. Other treatment as chemo are to be tried at first. You will only be able to participate in the trial when standard treatment has stopped working, or if it does not work, and only after the cancer has increased with 20% in diameter.
Take care,
Anne.Dear Marion.
It makes me both sad and angry that this information has been known among several doctors, professors and others all over the world for so long.
I did find out about Fishers Ion Torrent Comprehensive Assay when I was told about an ongoing trail in Norway. One of the doctors in charge told me that you were only allowed to participate if no other treatment did work out and if the cancer had grown with 20% in diameter. I think this is a cruel thing to do!!!! Why can they not just offer this test to everyone when diagnosed with cancer? Think about all the suffering and pain a patient has to live with before being able to participate!
I am planning to write an article about this subject and to post it to all the biggest newspapers in Norway, I do hope some of you reading this will do the same in your countries. This information must be spread!
Take care.
Hug,
Anne.Dear Julie.
My husband got Gem/Cis too, now his on Nordic Flox, an combination of 5-fluorouracil, oxaliplatin and calsiumfolinat.
He has some hearing impairment too…..Maybe my husband will feel less pain if his toes not are straight up too? We will try it, tank you for the tip.
Take care.
Anne.Dear Catherine and Julie.
Thank you so very much for the information! I have newer heard about microwave ablation or SIRT before.
Julie, I really do hope you will find a onc that will continue with the treatment, chemo has awful after effects. My husband hardly feel his foots now and his fingers are constantly numb, his legs are painful every night when we go to sleep….
Take care both of you.
Hug,
Anne.Radiofrequency Ablation (RFA) for bigger tumours and for tumours in bone, lung, lymph nodes, kidneys, liver etc.
We are now trying to get radiofrequency ablation for all of my husbands tumours. I have found that this is a treatment that might bee used also for bigger tumours, 8,8cm is described, Not only can it be used for tumours in liver, It can also bee used for tumours in bone, lung, lymph nodes, kidneys etc.,
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3845543/
http://www.mayoclinic.org/tests-procedures/radiofrequency-ablation/basics/definition/prc-20013951 https://www.youtube.com/watch?v=m5wGB5JGN9E http://www.radiologyinfo.org/en/info.cfm?pg=rfalungHave any of you tried this kind of treatment? I would be most grateful if somebody with experience in this could write a bit about it.
Best regards
Anne.
