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This is not good news. There are so many different types of cancers. If there is anything I can do for you in my neck of the woods, let me know. Keeping fingers crossed You find an MD with experience in this type of CA. Lyn

prayers for you and your husband...that you soon find the answers you seek...

Thank you everyone for the support.
Velda

So sorry to hear the latest. Velda. I sent a text to my dd who is an OR nurse specializing in head and neck cancers at Moffitt Cancer center in Tampa, FL. I asked her if she knows if Moffitt is/has treated this type of cancer or if she knows of any clinical trials going on. I'll pass on any info she might have.

Velda, I hope you can find someone with experience to help. My thoughts and prayers are with you both.

I knew it was rare just didn't realize how rare...good luck in finding the right doctor
and clinic
prayers always
sheila

Thank you Liz. We are feeling a bit hung out to dry by UCD. ENT surgeon says his is now out of his area. Radiation Dr we love says she cant radiate him again. Medical oncologist says nothing he can do. So who do we turn to to get through this. No one offered that. Mel asked point blank, what we can expect and got a non answer of, we dont know. I know he may need his chest tapped for the fluid at some point but who do we call for that?
Velda

Velda, there is a "rare tumor clinic" at UCSD. I haven't been able to see if they study Mel's tumor or not. Did UCD mention them? I am still looking for info on their web site. Lyn

UCD has offered nothing other than they have nothng. We are pretty ticked at moment. Learned from a high school friend who is a retired family nurse practioner, that UCD does not have a stellar rep, with their emergency medicine being the one exception) from her more than 40 years experience! Now we find out!!! We have gotten suggestions from another high school friends husband who is in some kind of biochemical medical consulting and are actively pursuing our research. Learned from the friend today that we need copies of all genetic testing dome in order to find a study match. He feels sure we can find one in immune drug treatment. Of course nothing can get going agan until Tuesday. For some reason that testing is not on our My Chart online. We are trying to turn this ship from fear amd shock to determined work to find a solution. Just keep,us in your thoughts.
Lyn I,will look up UCSD for sure.
Velda