Hi all
Its been awhile I think the last time I posted was when Brian had the Bleed ( Its in the After treatment issues under Frustration level rising)
and believe me it is again. Well a couple of weeks ago Brian was just getting weaker fallin asleep standing up , I put some of this off to the fact he was going through hyperbaric treatment and also thought the pain meds were getting the best of him ( although he has been on them since June and its like nothing to him now. Well he took a fall and broke his ribs he was just so weak. He was very malnurished even though the feedings have been the same. They had a meeting there was some debate if the cancer had come back. One dr believes it hasn'nt he does not see anything different in the Cat Scans. But his jaw is killing him and its not even the side were the cancer was in June. They sent him for an xray but theres no dead bone. He is down to 124 from 128 2 weeks ago. Theres also a question if he has colitis because the scan they did off his stomach shows inflames bowel. But they can't do a colonoscopy because he's to weak and the drs said he would be to weak to handle chemo if the cancer was back. They are sending him to a rehab this weak to see if we can build him up. But Brian can't take these answers we really like the radiation oncologist Hes the one that believes that its a 65% chance that it is NOT back.
But am wondering maybe if we should go to Dana Farber to see if they would have a different approach. He's come so far and been through so much we cant give up the fight.
Any suggestions and has anyone else had continues pain in the jaw. IT JUST CANT BE CANCER AGAIN.
B

Dear B, youall are dealing with very difficult stuff! My 1st guess on the jaw pain would have been a fracture, but that should have showed up on xray. Some people have pain in the jaw area as a result of the radiation after effects, nerve damage, etc. But his overall poor health is certainly a major concern. Is he getting IV's at rehab to boost his hydration? When my husband started falling alot, it was due to plummeting blood pressure upon rising from a sitting position. He broke the implant in his jaw during one fall. We have this problem continually and haven't found a solution yet. When this happens to him, sometimes he has seizure like symptoms and it scares me crazy! I know you are frantic about what is going on and I'm sending you a firm hug and a prayer for strenght. If you think going to Dana Farber will help you-by all means-go! Amy in the Ozarks

Amy
Yes he is getting fluids which has helped but they can't really give him that much more of the Nutren which he was getting at home, because of the fluid build up in the lungs, which they think is from having a hard time breathing from the fractured ribs. I think we are going to talk with the dr about going to Dana Farber. I mean I just don't understand them saying that their 65% sure that the cancer hasn't returned and if it has he would be to weak to do any treatment. I just find it hard to believe that the new jaw pain is just from radiation,because he just finished hyperbaric treatment which is suppose to help with that. the only fear I have about the hyberbaric is that there have been studies that say if there is still cancer left the hyperbaric treatment may bring it to life.

B,

Brian needs help and if that means getting 10 opinions then do it. Don't worry about stepping on anyone's toes. I remember being so weak and also not being able to talk that I wrote my wife a note and said "I need help, I can't do this by myself". She immediately took me to the hospital and I stayed 3 nights but it saved me. That was 2 weeks after my Tx had ended. I hate hospitals and I'll never forget those 3 days/nights but I did get much needed attention.

Keep us posted.

B, you are right about the hyperbaric tx. exacerbating cancer cell growth [we were told John could not have it after breaking his implant because the cancer was still present] So lets hope the Docs are right about "the cancer hasn't returned". My understanding of hyperbaric tx. that it helps with the healing of tissue,skin cells, etc., but I did not know that it could help with radiation side effects on nerve damage in the head and neck.[I could be all wet on this]
Hopefully, you will be albe to get more expert advice if you go to Dana Farber. Amy in the Ozarks

Amy
They suggested the hyberbaric because of the bleed from the radiation neurcrosis, which had ulcerated the vessels and the tissue was basically melted away and the Hyoid bone that supports the tongue was exposed. Were know beginning to think that the hyperbaric was to much for him to take they can't get the fluid completly out of his lungs, and to weak to tap them right now. He has dropped to 124 from 128 in a week. I'm so scared that he not going to thrive, the pain is still in his jaw but it comes and goes. Please say a prayer for him. He just turned 50 a couple of weeks ago and I told the dr we have 2 kids 15 and 19 and I'll be damned if I'm going to let the drs give up on him.
Thanks for listening and if anyone out there has had similiar experiances with hyperbaric side effects as sever as this please let me know, again this is one theory of why he' taken a turn for the worst.
Thanks
B

B,

I am having hyberbaric treatment at the moment, to help heal a benine ulcer on my tongue. The treatment seems to be affecting the nerves in my jaw and neck, as I am having far more frequent and sharp twinges of pain than I did before. I imagine this is because the nerves are growing back, although this is only a theory.

Hope this information is of some use.

Redser

Redser
Thank you I'm sorry your having pain issues also, but I'm glad to hear that someone else is having a similiar issue. He had 38 dives but during the last 2 weeks is when he was having all the new pain on the side of his face, he was also dealing with alot of swelling which they put him on steriods for a while. Right now there's no clear answer why he took a turn for the worst, I mean he was walking the dog, cooking occasionly he would go to the grocery store with me. but then he just got so weak, there had been nothing different about his tube feedings but he just was losing weight, He was on 300 pain patch which is now down to 100 so as not to overload him and he takes oxycodone 30mm every 4hrs as needed. They had an ENT come in to look he thinks its his tongue which has an ulcer on it but thats been there for a while, its hard when new drs get into the mix because they think his mouths a mess now but they have no idea how it looked before its 10 times better from the hypbaric, but again I think maybe he wasn't strong enough and it may have been to much on his lungs thats one theory the drs have. Have your drs said its normal for you to be having pain? Thanks I appreciate your input

Hi B,

Yes the doctor says the twinges are part of the healing process.

BTW when I developed the ulcer which led to me having the HBO it did hurt like crazy -I had to take stronger painkillers than at any other stage in my treatment. It actually hurt more than the original cancerous tumour, maybe because it was on an area that had been damaged by radiotherapy.

So maybe your husband is suffering more because of the ongoing effects of the radiotherapy?

About the colitis, have you tried aloe vera liquid (to drink)? I found it works for me with digestive problems. Its just an idea as I guess the pain killers are messing up his digestive system.

Redser

Brian is finally being moved to a Rehab today, Its been a struggle with the insurance co, This rehab is said to be the only good one in our area, the other are just basically nursing homes. The insurance co finally approved him. Of course it all comes down to money.
So here he goes to another place with a whole new set of Drs and nurses and everything else that goes along with it. He went into the hospital at 128 and is leaving at 119 lbs. I hope this Rehab can get the weight on him because the hospital certainly didn't. The pain is still there the lungs still fluid filled, now he has thrush again.
They have put him on Zolof, so hopefully that will kick in soon, because his spirits are low. Its been such a bumpy journey starting from his diagnosis in June. We struggle evermonth to pay insurance out of pocket through his co. And just did another extended leave of absence.
So I'm on my way to the Rehab and will meet the ambulance there.
Take care