Second Opinion
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Thanks for that Jet. Hoping that the folfox works well for your wife and my fingers are crossed for the best possible outcome here.
My best wishes to you and your wife,
Gavin
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.I’m glad to hear things are looking up. I had the genetic testing done, also, and it was no cost to me because of Medicare and supplemental plan. It seems it will be very helpful in future… The mutations found are also in breast cancer patients. So I have a good chance of funded therapy in future.
My onc and I have also decided that since the trial drug I am on is working, we will wait for a while before changing to the new trial drug.
Good luck to you and your wife. I hope the new treatment plan is very successful.Dear Jet, so glad to read your update today. What a roller coaster ride, yes? No wonder I never went on one, don’t like them. Now I can’t wait to see what good news comes next. Another prime example of why other opinions are SO important! Keep up the good news.
jet….you had a productive visit; thanks for sharing. Your wife is responding well to her treatments, it would make sense to stick with it.
If I may ask: what was the cost to you for genetic testing?
Hugs,
MarionMy 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.jetcm…..make sure to have all medical records on hand. This includes diagnostics tests, blood tests results, physician report, everything and anything pertaining to the diagnoses of this disease. The consulting physician will either agree with the treatment protocol suggested or, as we have seen at times, may recommend a different protocol. Either way, ask for a detailed explanation. Make notes or, if allowed, tape record the session.
Please keep us posted.
Good luck,
Hugs,
MarionDear jetcm, I know we have had members there. Perhaps if you go to our search button and type in U of Chicago ONC it will come up in some past posts. SO glad you are getting other opinions, best to you both.
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