Hello to each and every one of you incredible folks! Haven't been around much-I seem to have mised the exact moment, but I done been whacked with a giant MONKEY WRENCH!!!...hard Woke up last Sat am and my shoulder was incredibly sore. Like I've over-xerted WAY too hard in sports and torn something important to being successfully able to lift my arm (esp w/weight of ANY amount) INCREDIBLY sharp pains shooting through the top of my shoulder and the muscle at the top of my arm leading DIRECTLY to the tumor. I cannot use that whole side of my body for the most part without pain. There are very tender tendons going from near my neck and another to the muscle top of arm.
My tumor has been growing quite explosively lately-even though my Doctor diasagrees-the last CT "report" reported no overall change in size, BUT I can tell when the damn thing is growing inside my neck and skull and shrinking elsewhere.
Having problems typing this post-for some reason I can't see what I'm typing (and I'm not a good typer at all)
Sorry- I;m using a fentnyl pach and it's got me totally loopy.
ABTBODY HAVE -OR HEARd OF- SImilar?

If you are in that kind of pain you need to call your doc. Especially if you are on the fentayl patches. The patch should be on at least 24 hours to work effectively to take care of most of your pain. You should have something else you can take just in case of extra "break thru" pain like what you are describing. I hope you feel better very soon!

Keep us posted and good luck!

Ditto what Christine said

Wanted to put all pertinent info in 1st post but was having tech difficulties...pain came on overnight after NO exertion of any kind...rather than getting better, it seems to be about the same-after a week...RATHER intense!...saw doc on Wed-couldn't tell me what caused it, or why-just gave me some fentanyl patches and a follow-up with physical therapy (which hasn't happened)...pain in a bizzarre place-in FRONT of my collarbone just under the tumor (little bit swollen, but BOY is it tender!), and out toward the muscle at top of arm (forget what it's called)...VERY sharp pain when I lift my arm, move my arm, lift my arm.
Why the heck would he just be scratching his head about this? I feel that it is DIRECTLY related to the tumor(that has started growing like gangbusters in the past 2weeks or so)
Is it really THAT unusual for something like this to hap0pen? For the past 6 months as my tumor has been shrinking (yay) it also was tightening around veins (YUP! Jugular has blood clot in it now), nerves (been having bizarrly intense "charley horse" muscle spasms that come and go with no warning), and tendons-if I suddenly move the wrong way...YEOWCH!!!! Now am I going to have to add this debiliating arm/neck/shoulder pain to the mix?? I certainly cannot function anywhere NEAR normal as long as this is going on, and it's VERY frustrating and de-humanizing that the medical establishment continually looks upon me as crazy and seems to be saying, "it's just not POSSIBLE that it should be that way". Of course speaking with about 1/3 of my tongue adds a certain element of "what the hell is he ranting about, anyway?"

Some days are spent apologising for other days when the frustration outweighs the civilizing influences that keep me calmly explaining the same thing again and again-and STILL never really knowing if I'm actually getting through. Now with the fentanyl-that I seem to be having an itching reaction to (yes, I took the thing off) exerting ITS' effects-plus the pain is gonna come back with friends...I'm not sure how long I can keep up the "make nice" face.
HELP!!!! Am I really the ONLY person ever to have gone through something like this? Why have I always got to be so...unique???

Can you see a pain specialist / neurologist about this? He or she might look at your problem from a different and hopefully more helpful perspective.
Maria

It's entirely possible your tumor may be pressing on a nerve of some sort. Do get some answers and push until you do. Hugs

Hi Gordon,

Glad you posted but sad to hear the update on your condition. It seems very reasonable given the changes in the tumor(s) that pressure is being applied and pinching nerves in various areas.

Since you are seeing doctors maybe asking for another to look at you makes sense. Also, you have to deal with the pain. If the patch dose is too much get a lower one but keep it on and as was stated get something else for when the pain really roars.

Best to you, don

thank all you guys for all the good advice. It feels good to feel like somebody else gives a damn. Have recently discovered that my support system is just about NONEXISTANT.
If it does not measureably improve by Wed am I'm going to pack a bag before I go in for chemo, check my narrow butt in, and invite every doc in the building to give an opinion! Wish me luck till then.

Good luck!,,,,

Hubby has the exact same thing!
Came on 4 weeks ago, lump appeared 2 weeks ago. Most likely more disease. SCC likes lymph nodes and the chest and shoulder area are full of them.
Getting huge radiation dose this week.
This is 5 dx in 2 yrs. he is so young and healthy. Hurts my heart.