jetcm
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Thank you Kirsty X
This is John (JETCM) again…
My wife’s study showed 2 mutations CTNNB1 and KRAS.
May I ask if the DNA testing your husband had done showed JUST CTNNB1
or was combined with another mutation? such as KRAS?It seems that if there are MORE than one mutation that it is hard to determine
which mutation is driving the cancer process.Thank you again and many best wishes and hope for your husband..
John
Dear Supermum,
Yes, thank you, I would very much like to have information and trails for CTNNB1.
How can I get them?
Very, very glad your husband is better and ready to move to Day 8.
I am also glad to know the incidence of the mutation as 2% as I could not find it anywhere.
The report from Guardant Health lists a few clinical trials for CTNNB1 but I have not had a chance to
look at them yet.
Best regards,
Jetcm (John)Thank you for that information.
By the way we hit a bump in the road about genetic sequencing.
There is not enough tissue left from the original biopsy (Nov. 2013) so my wife will need a repeat biopsy for new tissue. She plans to continue on with the new biopsyMy tendency is to know as much as you can about your particular cancer. So I recommend having genetic sequencing testing done. I mentioned before that if a particular mutation is found for which there is a drug being used for another type of cancer (lets say kidney cancer) then I doubt your oncologist is going to withhold it from you using it. Doctors do it all the time. That is, use a medication that is not totally approved by the FDA for that condition but has possible benefits based on SCIENCE.
University of Chicago oncologist Dr. Catenacci told us this and that he would write a letter to the insurance company if he thought there was a scientific reason to use the drug. But he will not recommend a drug that has no scientific basis.
The cost may be high for the testing but if it could enhance life or keep my wife alive until a better
treatment comes along then we plan go for it. I have spoken to one company and will waive the cost under certain conditions.My wife’s oncologist says that if there is a genetic mutation for which there is a drug available
that drug can be used even though it is not specifically approved for cholangiocarcinoma. Lets say there is a mutation found that ALSO can cause a certain type of Breast Cancer. If it is approved for
by the FDA the oncologist can write a script for it and will also help by calling or writing the insurance company.
This is what we were told and this oncologist is much involved with genetic sequencing. He has written a scientific paper which concludes by saying “the future of treatment for cholangiocarcinoma is NOW”. He does not believe biological or genetic treatment is years away. It can only get better but it is starting now.I would enjoy hearing other opinions, BUT these treatments are coming available NOW. Genetic testing though expensive is paid for or will be paid for by Medicare the Foundation One company has told me. If medicare does not pay for my wife’s testing, for some reason, I was told my wife will NOT be billed at all. If you are not in the medicare age group they still have a discount and payment plan.
As so many people have said on this site, get a second or third opinion. If your oncologist feels that
you have no more chemo options and genetic sequencing won’t do any good go to a center where they have faith in the future of genetic testing. I believe the statistics indicate about 70 % of people will have a mutation for which a drug could then be tried.One more thing, you may not have to qualify for a clinical study. if your testing shows there is a drug that can combat your specific mutation, it is possible to get it as I mentioned above.
Besides getting” 2-3 opinions” someone told us to “keep fighting”. This means in your life, but
also for the latest medical care! Don’t give up— as we are entering a new era in cancer treatment based on” individualized or personalized” treatment.This is jetcm again.
Also to say that “YES” I am in total agreement –second and even third opinions ARE important– even necessary.
No one oncologist can keep up with what is happening so fast in this field.
Thank you. What a great site we have here. My Family and Our family would still be in the “dark ages” without it. Thank you everyone.Thank you all for writing back. We have medicare too, so that sounds like my wife should be covered.
We were not sure about the coverage. I did see the website cost for the test was a little over $5000.
Not a small expense !!There was one other thing that we learned. That is that the BINGO study that I think was reported in the British Journal LANCET has some flaws in the study. At U. of Chicago, Dr. Catenacci said that the
study did NOT take into account what the genetic make up of each person’s tumor was. So the drug
they used in the study Erlunib (not sure of spelling) would not have helped those people who did have that mutation that Erlunib treats.
Therefore if someone such a doctor says that that study was a failure for cholangiocarcinoma then
we need to say what the flaw in the study was.If the Lancet article has to do with the BINGO study, I was told by a University of Chicago oncologist that the study did NOT determine beforehand by genetic sequencing what the mutation was for each patient.
Without this information the study is not as reliable as it should be.
Therefore it is important to know if you have the ERGF mutation before using erbitux. If you have a different mutation it makes sense that erbitux is unlikely to work.
Because the study probably included people with many different mutations the study is flawed.
But it does mean that everyone with cc should get genetic sequencing so the MD knows the mutation and pick the right drug for targeting it.
Because cc is uncommon it is likely to be hard to find enough people with exactly the same mutation
to easily do studiesMy wife and I went to the University of Chicago for another opinion.
She is on the correct chemo now …. FOLFOX6.
She will have the genetic sequencing done and results available in 3 weeks.
Studies done at U of Chicago and at Foundation ONE.
It sounds to us that everyone should have genetic sequencing on the biopsy tissue
to find out if there is a treatable mutation. (Personalized treatment). It is not cheap but they do have payment plans and they take medicare.
The oncologist recommends the complete panel–@ 250 genes. The reasoning is that
even if a mutation is found for which there is not a known treatment or is not clearly known to
cause cancer, research in the future may find that it is and it could be treated.
We asked this question because the Mayo Clinic is doing only a 50 gene panel.
If regular chemotherapy is working he does not recommend changing to personalized treatment.
Only change if the regular chemotherapy is no longer working.
That is what we found out that seems valuable. Thank you.Nodules had responded to prior chemo with Cis/Gem.
We decided with the oncologist to try FOLFOX ( I hope I have that right word)
Thank you everyone for responding
