Cure Alveolar Soft Part Sarcoma International (iCureASPS)

That is actually a good idea thanks.

Easy enough as do it yourself. There's a guide on YouTube. I can see it as one of the best paths forward.

My neck and shoulders have been completely intolerable during last few days. As my whole mouth was severly burned by radiation interesting to see it is not nearly worst pain at the moment.

They scanned my head and neck for radiation planning 2 weeks ago. Opdivo can cause antibodies towards muscles. But of course invisible tumor breaking my neck vertebrae is more likely explanation.

So let me tell more about my neck pain as theories about it are getting really imaginary. Pain feels in neck and shoulder muscles almost always worst in left sternocleidomastoideus. Massages seem to be only thing that helps as opioids really dont eliminate pain they just get you high.

If it's from stiffness in the muscle in addition to just pinching it and holding the sternocleidomastoid for active release, you can try something like a PNF stretching - https://stretchcoach.com/articles/pnf-stretching/

But I think massaging it is the best option. You would work the whole muscle from top to bottom by pinching and holding it, and then moving on down or up by merely a cm at a time. Also, if you fire up the antagonist muscles (Longus Capitis, Splenius Capitis) it may help the sternocleidomastoid relax as well. If it's muscle tension and you do all the of the above, there should be immediate relief and it should be very significant.

If this works, but not completely it means that the other muscles in that facial line are probably tight.

This is part of the superficial front line - http://healingartsce.com/advancedanatom ... alpg2.html

If you spend an hour stretching and massaging all the muscles in that line and the tightness in the muscle still doesn't go away then it's not the muscle probably. But I bet it will because hypertonicity in this muscle is highly associated with stress.

I greatly appreciate support from this forum. I am just cranky, because I am finally dying.

I read an article yesterday that pretreatment with the PD-1 inhibitors sensitizes the body to a cytotoxic treatments with the conventional chemotherapy drugs. Since we had the success with the gemcitabine weekly in one patient, may be you should try it? It is supposed to be not very hard. The case was descr. in success stories
http://www.cureasps.org/forum/viewtopic.php?f=28&t=389

arojussi wrote:I greatly appreciate support from this forum. I am just cranky, because I am finally dying.

It's not over till it's over, so let's do everything we can.

Jussi
I second Ivan’s statement ! :)

Jussi I feel compelled to let you know how much I appreciate all your posts here and on the ASAP Facebook page. My heart is with you. Peace Janice

Jussi
How are you ?
Sure thinking of you .

Well had epileptic seizure and kepppra was started and once again I caNt sleep.

Hi Jussi. I am sorry to hear about all the troubles you are having but it is still good to hear from you. How is your radiation burn in the mouth - is it healing, can you eat solid food?

Hello Jussi. :)

I’m sure sorry to hear of your seizure.
Do you feel that it is the Keppra that is keeping you from sleeping ?
There are a lot of other meds that could be used that maybe wouldn’t interfere with your sleep quite so much ?

As Olga has a said , truly good to hear from you and sure hope you are able to get some rest .

Love to you ,