How does one go about getting a second opinion ?

Hi @cann1 .
We are also in the Boston area using Beth Israel Lahey as our homebase. We got our second opinion from Mass General. The trick is to match your insurance up to the hospital network. (Dana Farber wasn't in our Tuft's network.) You can also do virtual second opinions like Johns Hopkins or MD Anderson. (Just search online for their forms.)

I'm sure Dana Farber has sequenced your tumor. Your particular markers will help you best align with the clinical trials.

Happy to introduce you to our team at BIL or be of any assistance otherwise.

Best,
Holly

P.S. I'm also tagging @jaxl who is so knowledgeable.

That is very concerning. At the same time, if you have exhausted all therapies, including EVP, a clinical trial may be the only option. Unfortunately those are not a snap your finger solution. They have paperwork, requirements and so forth.

Were you tested for markers such as these?
HER2-Targeting ADCs: If the tumor sequences for HER2 (even "low" levels), trials for drugs like Disitamab Vedotin (RC48) are showing significant promise.
TROP-2-Targeting ADCs: Sacituzumab Govitecan (Trodelvy) is often used or studied in trials for those who have failed other ADCs.
Erdafitinib (Balversa): This is a standard drug for some, but there are new trials (like the NCT04963153 study) testing it in combination with other agents specifically for patients who progressed after EV-P.

Any resection or radiation?

You can always enquire with another hospital, insurance or self-funds permitting. However, this is a very challenging case.

Hang in there!

Thank you for responding. I need some clarification…like what does EVP. I have been in treatment for two years. Have had no Tx since June in preparation for a clinical trial. At one point I was tested for Her2 and was told it was negative. When I questioned why would this clinical trial test me again. I was told that maybe it changed? I have had trodelvy with disappointing results.
I’m afraid I don’t understand your other medical references. I have never had radiation or resection.

EVP = Enfortumab vedotin (EV) plus Pembrolizumab (P).

Each clinical trail does its own tests for standardization purposes. Relying on previous test works may be a) outdated and b) have a different sensitivity or criteria as each medical clinic has some freedom in their methodology, c) identical quality control regimes, d) centralized testing facilities for consistency.

You can ask your oncology team about the other treatments and find out if they tested you for it (presumably since it is a world leading center) .

All good suggestions above.
When my son had cancer and no treatment worked he wanted to go to a clinical trial.
I went on Caner.gov and American cancer society websites. I also think the CDC website has listings. They all have listings for clinical trials.
Luckily my son saw a trial at Moffitt Cancer Center in our home town. He applied with his doctor and took over a month before he was accepted. Those 8 weeks of treatments was hell for him and us. We were even told to contact a Hospice. But in the last week of treatment and for several weeks later he got better. I am happy to say he has been cancer free for almost 10 years now.
Every other hospital told him to go home and get things in order since they gave him only 6-12 months.