THERE MIGHT BE A TREATMENT FOR YOU!!!!!
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Deat Anne,
I lost your phone number, I just wanted to write that my mother passed away on Monday evening. She got worse and passed away within 3 days. It was a huge schock, but at least she didn’t suffer. The chemo just never worked. She didn’t even finish one cycle.
Thank you for all your support. You have been very generous with sharing information and experiences that you have from your husband. And above all you have shown great warmth. I wish both of you the very best. With you by his side, your husband will fight this.
Jag skickar er många många kramar!
AlicaHi 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 Anne > Thank you for your information on DNA testing in Sweden. My husband has been a on the cholangiocarcinoma ride for over 5 years. He was doing well till recently and the last few months his liver enzymes are trending up and I do notice he is not feeling well. I wonder if I can contact them about the testing even though we live in Canada. WE live in Canada and we have so called universal health coverage, the Cancer Agency would not cover the better cocktail mixture that my husband had for his treatment. This was a shock to me to find out that there is already a two tiered system in our health care yet the average person is not aware. We are very lucky that we had the money to pay but what I found hard was to find out that the Cancer Agency didn”t offer this option to us , we got help from an oncologist that works for the agency and has a license to bring into Canada other drugs that are not sanctioned by the Agency. As far as I am concerned they should tell people if there are other options out there even if they cost because we all want the best for our loved ones.
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.Hi Anne,
I found this study, which takes patients also in Norway. It’s about Keytruda, that I saw was discussed in another topic, in case you haven’t seen it. Maybe of interest for you and your husband after the study in Denmark (which I hope will be sucessful and there will be no need for participation in other studies!)
//Alica
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.Thanks for this explanation Anne!!
Actually, the oncologist don’t give any of the information that you have posted or linked to. At least the oncologist in my mother’s hospital, since they don’t offer this, i just think they believe it’s not relevant to give this information. Also, I think they just don’t have time. Usually we get 15 min meetings. Only the first time it was 45 min. Without you and your posts, I would never have understood this.
My mother’s main problem is lack of strength. She is now admitted into the hospital for a few days again to recover…so we’ll see how it goes.
I hope your husband is coping well!
//AlicaDear 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 Anne, what you have shared is amazing. If 20% of patients can be helped is huge considering only 10% of patients are operable when diagnosed. Please continue as I don’t understand why more research is not done in more countries. You have gone around every blockade you have encountered with this disease and moved ahead and made progress and found answers. Your determination is inspiring, and I hope your results are as incredible as your spirit. I wish Your husband and You the best outcome possible, Thank You, Pat
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.Thank you so much Anne!!!
I sent an e-mail to Iulia at EMEA.concierge@lifetech.com.
My mother is really taking hard the gemcitabin/cisplatin even though she only had three therapies, so I hope there is something else for her.
Many hugs,
AlicaDear 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.Anne and Alicia….please continue to investigate and share with us. You are providing excellent information to us all.
Thanks much,
Hugs,
MarionHi Anne,
I sent an e-mail to Ulrik Lassen about a week ago asking about whether any of his studies are open for new patients,, but no reply yet,
Also, I contacted Fisher on the phone. They gave me an e-mail, europeservice@thermofisher.com.
They asked me to specify in the e-mail what type of service I needed. The options she gave me on the phone were very technical/Medical, so I could not really understand what the difference is.
She also thought it’s for a study or project, and after some explanation she realised it’s for only one patient.She told me that after I write more about what service I need they will then try to put me in contact with one of the service providers.
I think I will write them that it’s a single patient tumour that we need to be DNA-tested against all cancers? I’m not sure how to specify this, did you write any type of ” service order”?
About the information in the link, no, this is not something that the hospital gave us. In general, the doctors that we have spoken to have given us very limited information about the cancer itself and treatments. They only give information after we ask questions. We are happy with the care in general, but we get very little information.
//Alica
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.
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