Marcyazh

Hi Bill, sorry I haven’t posted or contacted you though I really appreciate your advice and hope I still can later if more questions arise. We are going ahead with Opdivo and radiation starting tomorrow. All the insurance follow up, co pay cards and such are lined up!  I do wonder why some people respond with Opdivo and others with Keytruda …. so much to try to wrap my head around. I hope your holidays were good and again, you offer us hope and I really appreciate it!

How is he doing?  This is the first time looking at the post for awhile … swamped and overwhelmed. My husband is starting radiation and Opdivo tomorrow. We have also gone to specialty dentists and are having flouride trays made up. Greg’s tumor was quite a bit larger but he is the same stage. Healing thoughts and intentions for everyone thanks for commenting. 

Thanks, I will contact you via email after the holidy!

Thanks, I would … let’s touch base right after Christmas.  Is there a private message capability? Then we can exchange contact info … I don’t know if I can see your email address.

have a relaxing Christmas or other holiday that you celebrate!

marcy 

Oh my! I am sorry your Nivo effects were so bad … they have Greg scheduled for two years.  Most people are saying they are only fluish  and achy!

yeah, I will have to get a consensus as the oncologist wants to do a couple round of nivo first then radiation ..

Biol, I have read that for head/neck radiation that there are dentists that can 3D print a stent to cover the dental work and prevent some of the damage.  Did you have this done or do you know about this?

Also, I read about the radiation damage to the jaw and that it is caused by “fibrosis” caused by the radiation.  I have seen a site that offers a “jaw stretcher” device that is used to exercise the jaw I think during and after radiation to keep it from developing or break down the fibrosis.  Have you heard of this?

marcy

Thanks, Bill .. your story seems closest to Greg’s although we haven’t found his primary.  I am assuming it was a regressed head cutaneous primary … I told him that it took you 5 or 6 months for nerve generation after radiation and that is helping him with the decision. I think we misunderstood the surgeon in thinking that radiation stops the recovery … we thought it permanently stopped it but it sounds like it may just stop it for the duration of the radiation.  I am sure the radiation oncologist will clarify … thanks so much for the input and I looked back at some of your other posts even before I posted this

🙂 Marcy

Susanne, I have read that for head/neck radiation that there are dentists that can 3D print a stent to cover the dental work and prevent some of the damage.  Did you have this done or do you know about this?

Suzanne, it sounds like your case is close to Greg’s also, with the same decisions.  I am glad your facial nerves healed before radiation.  It’s been 2.5 weeks and there is some improvement with Greg.

did you have radiation at the same time as Opdivo?  The oncologist wants to start a couple rounds of Opdivo first before radiation, but that would put it at around 10 weeks after surgery.  Sigh.

how did you tolerate both during that period?  I know the radiation is somewhat worse.  I also worry about greg’s dental because the Oral Surgeon said previously that he didn’t want to remove greg’s Bottom wisdom teeth because the roots wrap around the nerves.  With decay down there, that might prove a problem though perhaps he could have a crown only removal which I understand is an option in that case.

Thank you.  We may head to Mayo for another opinion … but it’s over an hour from our house and much more in traffic.  I don’t know that we would choose them ultimately if he remains in 3C or NED and I guess he is surgically NED at this time.  Marcy

My surgeon was not a melanoma specialist as the FNB showed a mixed carcinoma/sarcoma but he did not think that was correct.  And guess what?  Melanoma is better than *that*!

There are no places of melanoma oncology specialty from what I can find in the city (Phoenix) and we also have Mayo but it’s really far from the house.  The therapies are pretty set now, and set on what insurance will cover and we will still have options for trials.  We chose “Ironhood Cancer Center” which has treatment places within a small driving distance from Greg’s work and our home;  also it is considered the top radiation oncology places in the city.  At that time it was a far gone conclusion that radiation is in his future, and we are leaning again that way now.  We see the Radiation Oncologist next week.

For 3C, Opdivo is the standard of care recommended as a single agent.  I am seeing trials of Opdivo with aspirin, ipi/Opdivo with aspirin but the ipi/Opdivo two therapy protocol is for stage 1V right now, which I am glad of because ipi can be extremely nasty.

Greg is having an MRI of the head neck to look for those kind of things is what I understand.  I know an MRI of my hand during a break even showed this very small ganglion cyst … plus wouldn’t the PET find it and least in the ear?  Dizziness and pain would be a sign.  Greg is and probably will remain “unknown Primary” also, from what I have read, the primary can be the parotid or a lymph node although rare because melanocytes have proven to be found in either one,  just throwing out what I have researched … Marcy