Hello Everyone
Been away for a while has Brian has many ups and downs and has been in and out of the hospial with pneumonia and malnutrition. Right now he is in a rehab for a few days, transitioning from the hospital to recover from bacteria pneumonia They are giving him IV antibiotics and are trying him with new foods Nutren 2.0 500 cal. The problem is that alot of the infections are becoming resistant to the antibiotics. I think when he had the tonsil bleed in October and went into respirtory arrest that it just screwed up his lungs, he still has the trach which is'nt used for anything and the Ent said it would be fine to have it out, But there is still a question if the tumor is completly gone. We feel so confused, We had a petscan done And the Radiation dr really does'nt like pet scans because of the fact that brians tongue does light up but he said that it will because of all the radiation. Do this dr goes by how the tongue looks and feels when he does the scope. On the other hand the ENT is not so sure if the tumor is still there or not. So it is very frustrating with 2 diff opinions. I feel that if Brian had the trach taken out he possibly would get less aspiration pneumonia. His spirits are so down. He is the youngest in the rehab basically a nursing home. I told him its only for a few days. All he wants to do is to eat again (he's a Chef) how cruel. Some drs say he may never eat again because of All the scar tissue and narrow passage and that the epiglotis is not working as it should, He told me he couldn't live if he could never eat again. I'm so afraid for him and our kids.
Just had to Vent
Keep up the good fight
B

B,

Did Brian have any surgery? I assume none?

When did his rad Tx end? I assume 8 months or so ago?

If that is the case I can't see why his tongue or any parts of his radiation fiel would still "light up".

Where is the scar tissue coming from and why would his docs say he may never eat again?

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Not sure if I was clear about the 2 diff opinions of the drs. The radiation dr doesn't like pet scans because of the false readings, He said he has been doing this for years and when he looks at Brians tongue he says it feels soft and the color looks good, so in his opinion he feels there is no tumor there. The ENT dr who is supposed to be the best in Boston is not so sure that nothings there but then again he does'nt see Brian as much as the radiaion dr because of all the pnueumonia Brian keeps getting he always ends up in the hospital (where the rad dr works) so he sees Brian more. Then the ENT in Boston, although we are establishing a ENT dr closer to home so we will not have to travel as much In fact this new Ent talked to the other ent dr is boston who said it would be ok to take out the trach. so when he went into brians hospital room to take it out he told Brian the pros and cons and how the 2 drs diff on the opinion of the pet scan ( first news to us) He scared the hec out of Brian and Brian said to leave it in. The poor guy has been through so much and now to have this thrown at him is just not fair. But I keep telling him to hang in there, and that he has proven all the drs wrong so far. They did'nt think Brian would survive the cancer because it had gone to far. And they said only 1 in hundred men would have survived the Bleed out. And here he is. We just have to clear up those lungs and to fatten him up.
Its a fine line with the protein. If he has to much his liver has A hard time processing it and not enough he doesn't gain weight and he need the protein to heal. So were hoping the new food will help and that he can tolerate it. Well thanks for listening
B

The drs say that a pet scan of the oral cavity is difficult because of the bacteria etc, thats what they say the tongue may be lighting up and maybe some from radiation although it will be a year in August, One dr said he may not eat again or if he does it culd be years because of the scar tissue from the radiation and the tumor itself and bccause it looks like the epiglotis is not working properly from the radation we will not know for sure intill we have and evaluation. But of course once again we had to cancel that because Brian ended up in the hospital with pnuemonia and they want to wait untill thats cleared up and hopefully we will have a stretch of good health to be able to get the trach out and an evaluation. Right now he is having more jaw area pain we had that under control with neuronton for nerve pain (thats what the drs belive its from) but the last week or so he has needed more morphine for breakthrough pain. And that brings me to another question, Has anyone experienced this much pain in the jaw area and have the drs said its nerve pain? Its amazing what the treatment itself can do to a person, but its a neccessary evil. And also a neccersary evil for Brian is decadron its helps keep the facial swelling down but the drs say it also can make him more susptible to infections.
B

B love, I have awful jaw pain and yes it's from nerve--my tumour is pressing on it and the jawbone has nearly already 'gone', which has left the nerve exposed. As well as my ibuprofen and co-codamol, whilst in CA at Easter, I discovered 'oragel max' which helps to deaden the inside lip-pain 'Little men with knives'--outside is completely numb! Biopsy has actuall y 'eased' some of the jaw pain higher up once i recovered from the procedure.
As well as hugely swollen face, I also now have 'bags of water'below and above eye---icing the area helps a bit
Bren