New Clinical Trial in Switzerland?
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Dear Alicia.
There has been no promising results yet, but we do hope…. I have been told that approximately 20% of those witch tumours have been tested do find some kind of promising treatment.
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=rfalung http://24monde.info/article/radiofrekvensablasjon-svaert-effektiv-i-behandling-av-nyre-svulster-studie-show.Wish you all the best!
Hug, Anne.Dear Anne!
thank you so much for contacting me. Very kind of you!!!
I will definately look into the information that you have given me and contact the doctors in Denmark to see if they could include my mother.
I truly hope that the study in Denmark will help your husband!
Many hugs
AlicaHi.
I did miss one question, we have not got hold of Pembrolizuamab, but I am working on it.
Take care.
Hug,
Anne.Dear Alicia.
Sorry for my late reply, I have not been visiting this page for some times now. I am sorry for your mother, I hope she is doing well in spite of the circumstances. Even though it might be better for you to read Norwegian I think English is better in case somebody else should have interest in reading this.
At the moment my husband is receiving Flox-kur: http://kreftlex.no/KSPROSEDYRERFASE1/MEDISINSK%20BEHANDLING/TykkEndetarm/med%20mage%20tarm%20FLOX%20kur?SearchText=flox kur&containsFaq=False
We finally got in contact with Dr, Ulrik Lassen in Copenhagen, Denmark, he included my husband in a trial for DNA-testing. If I were you I would try to contact him, maybe he could include your mother as well, or maybe he know of somebody else that could include her. https://www.rigshospitalet.dk/presse-og-nyt/nyheder/nyheder/Sider/2015/August/nyt-professorat-styrker-forskning-i-skraeddersyet-kraeftbehandling.aspx
We had to pay for the biopsy to be taken. Aleris in Copenhagen were able to do it, https://www.aleris.dk/her-finder-du-os/aleris-hamlet-hospitaler/kobenhavn/aleris-hamlet-kobenhavn/
Dr. Bjørn Skjoldbye did it, be free to send him our greetings if you do contact them: https://www.aleris.dk/Personer/Bjorn-Skjoldbye/We are now trying to get Radiofrequency Ablation (RFA) of his liver tumours, maybe this could be something for your mother too?
http://www.radiologyinfo.org/en/info.cfm?pg=rfaliver
http://oncolex.no/Lever/Prosedyrekatalog/BEHANDLING/Kirurgi/Radiofrekvens%20ablasjon%20lever.aspx?lg=procedureTake care, I wish you all the best!
Hug,
Anne.Dear Anne,
I have read all your posts and am very interested in what type of treatment your husband is recieving at the moment?
I live in Sweden (Stockholm) and I am looking for possible treatments or clinical trials for my mother, also in neighbouring countries like Norway or Denmark.
Did you get hold of pembrolizumab for your husband?
And was it possible for your husband to have his tumour DNA-tested?Here in Stockholm they have only offered us Gem/Cis as treatment and nothing else.
Also, I hope that your husband’s treatment is working and wish you all the best.
//Alicia
Dear Iowagirl and Marion.
As I think you both know, viruses might cause cancer.
http://file.scirp.org/pdf/OJMM_2014091113321353.pdf
http://www.univadis.com/viewarticle/human-polyomavirus-6-detected-in-the-bile-of-patients-with-malignant-biliary-obstruction-asv-418705
http://theoncologist.alphamedpress.org/content/early/2016/03/09/theoncologist.2015-0075.abstract
I have been told that those who have cancer caused by polyomavirus or papillomavirus will respond the best to immunotherapy. By testing the tumour they will know if there are polyomavirus or papillomavirus to be found.– Vemurafenib might be the thing to chose if your tumour is BRAF V600E positive
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4540563/ By testing the tumour they will know.– There are a lot of treatments that can be used on cholangiocarcinoma as well as on other cancers. Our main problem is that those treatments very often are not be used on cholangiocarcinoma, it simply not allowed. I think everybody should demand to have their tumour tested. If your tumour has the same DNA as an other type of cancer, a cancer that maybe are treatable your cancer might be treatable as well. Did you know that cholangiocarcinoma is far more related with colon cancer than with liver cancer? I have been told that there are a new (?) way of testing tumours and metastases, IonTorrent. I have tried to upload the image but it did fail. If you want I can send it by email. There is a list of several gens to be tested. If your tumour has some of those gens treatments might be available. There is a trial going on in Norway at the moment, MetAction,http://www.acredit.no/the-metaction-study/ There they do cheque up on those gens. If they do find them you will be able to get targeted drug that normally not are to be used for your kind of cancer even though your cancer has the same DNA as an other type of cancer where it is allowed. My husband is unfortunately not allowed to participate at the moment….
Here are some medications that are allowed used in this trial if the ’Actionable target(s)’ and Biomarker(s) are found, it is written in Norwegian but I will try to make it understandable – translate it for you. :
Medication ’Actionable target(s)’ Biomarker(s) Method of validation(s)
cetuximab EGFR KRAS-BRAF wild type genetic sequence
panitumumab EGFR KRAS-BRAF wild type genetic sequence
gefitinib EGFR EGFR-mutations genetic sequence
erlotinib EGFR EGFR-mutations genetic sequence
trastuzumab HER-2 ERBB2-amplifikasjon, HER2-expression FISH, immunhistochemie
lapatinib HER-2 ERBB2-amplifikasjon, HER2-expression FISH, immunhistochemie
vemurafenib RAF BRAF-mutations genetic sequence
crizotinib ALK, MET ALK rearrangement, MET- amplification FISH
imatinib KIT, BCR/ABL, PDGFR BCR/ABL-translocation KIT-expression PCR, immunhistochemie
dasatinib BCR/ABL, SRC BCR/ABL-translocation PCR
nilotinib BCR/ABL BCR/ABL-translocation PCR
bevacizumab VEGF no routine at the moment no routine at the moment
sunitinib PDGFR, VEGFR, KIT no routine at the moment no routine at the moment
sorafenib PDGFR, VEGFR, RAF no routine at the moment no routine at the moment
axitinib PDGFR, VEGFR, KIT no routine at the moment no routine at the moment
regorafenib PDGFR, VEGFR, KIT, RAF, RET no routine at the moment no routine at the moment
temsirolimus mTOR no routine at the moment no routine at the moment
everolimus mTOR no routine at the moment no routine at the momentI think everybody diagnosed with cholangiocarcinoma or cancer should have their tumours tested for these ’Actionable target(s)’ and Biomarker(s). If some of them are to be found I strongly do recommend the relevant medication in the list to be tried, this if no better treatment is available.
As written before I do have the Oncomine Comprehensive Assay Gene List as an image. Maybe you can upload it Marion if I do send it to you as an attachment to an email? I then do need an email address…..
I do guess you know them already Marion, if not here are some webpages that might be of interest:
http://www.enscca.org/
http://worldcholangiocarcinomaday.org/
http://ammf.org.uk/
http://thebiliproject.org/I have collected some email addresses for people involved in this, cholangiocarcinoma, world wide. I would like to send them to you. Do you have an email address where I can send it?
I got rather frustrated some days ago when I found out there are scientists in Norway studding cholangiocarcinoma. Next Monday the person in charge will be back from holyday, I will then contact him. http://ous-research.no/nopsc/
This was written in a hurry so please excuse my English….
Take care.
AnneAnne and Marion…… I read something about this recently as well. I can’t rememb er the details though. When I saw the article, it got my attention, because we believe that a bacterial infection of H. Pylori that got into my liver bile duc t was responsible for my intrahepatic bile duct cancer. The inflammation that the bacterial infection causes and inflammation and damages the epithelial lining the of the bile duc t and eventually can cause a cancer to sstart. There is ample reason to suspect H. Pylori and other bacteria for some, though not all, of the cases of bile duct cancer. Research IS despearately needed.
Thanks for posting that, Anne.
Dear Anne…..no, this is the first I heard of it. Thanks for enclosing the link. I must admit, reading up on these type of discoveries makes my heart jump a bit. We desperately need research into this cancer and it is happening.
Hugs,
MarionDear Marion.
Have you read that scientists has discovered
bacterial link to bile duct cancer? Do you know anything about this?https://www.sciencedaily.com/releases/2016/06/160624140603.htm
Best regards Anne.
Anne….I blanked out on this. So sorry. Anne, I don’t know of anyone with MSI responding positive to an immunotherapy drug.
There’s always uncertainty when thinking about a clinical trial. Part of it is that the doctors in charge of a clinical trial don’t know ahead of time how things will turn out. If they did, there would be no need for the study in the first place. So there’s no simple answer to the question, “Should I take part in a clinical trial?” Cholangiocarcionoma patients in particular don’t have many options. We have first line, but lack a substantiated second line of treatment.
I think the answer is clear: a clinical trial is the next best treatment option.Already you may have done so, but I would search these sites:
International Clinical Trials Registry Platform (ICTRP)
http://www.who.int/ictrp/search/en/Centerwatch
https://www.centerwatch.com/clinical-trials/listings/Pembrolizumab (Merck) and ivolumab (Bristol-Mayers-Scibb) are essentially the same. Both companies offer expanded use programs (compassionate use) which physicians must request on behalf of their patients. Question is, dear Anne, is this program extended to Norway as well?
I believe a physician would receive a quicker answer, but don’t hesitate from trying yourself:
Merck: http://www.merck.com/about/statement_on_expanded_access.htmlBristol-Mayers-Scibb: http://www.bms.com/research/Pages/Expanded-Access.aspx
Good luck and hugs,
MarionDear Marion.
We are aware of that trial. It was closed for patients with Cholangiocarcinoma at April 5th. We were told that it is closed for this diagnose world wide.
However, if my husband had been MSI high he could have been able to participate under ” Any advanced solid tumor, with the exception of colorectal carcinoma (CRC), which is Microsatellite Instability (MSI)-High (MSI-H)”. He was found MSI negative, got the results this morning.
Best regards,
Anne.Dear Anne,
I found this: https://clinicaltrials.gov/ct2/show/study/NCT02628067?show_locs=Y#locnIt is an International study and includes a site in Norway.
Below is the contact information:
MSD Norge A/S
Drammen, Norway
Contact: Henning Hoyte 47 32 20 75 20Good luck and please keep us posted.
Hugs,
MarionDear Marion.
My husband is tested Microsatellite Instability (MSI) negative. Are there any trials you could recommend?
Do you know anybody tested MSI negative that have had positive response when treated with Pembrolizumab, or is this treatment for MSI positive only? We are considering to pay for Pembrolizumab our selves. Neither our health insurance or the common hospitals in Norway will give him Pembrolizumab.
Take care,
Anne.Dear Marion.
You are so nice, thank you. I have posted it in the link.
I have been told about three other trials, guess you know about them.
– MC1345: Pilot Study of Ponatinib in Biliary Cancer Patients with FGFR2 Fusions
– S4-13-001 A Phase I/II Study of CX-4945 in Combination with Gemcitabine plus Cisplatin in the Frontline Treatment of Patients with Cholangiocarcinoma
– MC1542 – A Phase Ib, Open-Label, Dose-Escalation trial of ACY-1215 in combination with Gemcitabine and Cisplatin in patients with Unresectable or Metastatic Cholangiocarcinoma
(This trial is not open yet, but will be opening soon)Mayo Clinic Phone: 507-284-3279 | Fax: 507-538-1070
http://www.mayoclinic.orgTake care,
hug,
Anne
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