Well my husband woke me up in the middle of the night to ask me if I thought the side of his face was swollen.I couldn't believe the amount of swelling on the side of his jaw and neck. This area has been causing him alot of pain and previous swelling so he was put on steroids ( a good anti swelling drug but alot of side effects) but it did help with the swelling. So to see him so swollen and in so much pain was alarming we saw an oncologist today to take a look. His regular Dr is on vac so she was seeing him for the first time. She wants him to have a Pet scan which the other Dr does not want at this point because of the false positive he believes he can tell as much with a CT scan as the petscan. S anyway He had a Catcan 3 weeks apg and a MRI 5days ago of the head because he was getting headaches came back fine dr thinks the steroids aused the headaches but wanted to be save and have the test. Now this dr wants another CT scan to look to see any differences from 3 weeks ago. They were also looking to see if the jaw bone was injured but apparently nothing showed that it was on the MRI and the xray the dentist did. So the pain is for now a mystery. The dr put him on an antibiotic in case there is an infection which I think there is because of the tenderness and swelling around the jaw. The pain has really gotten worse instead of better he has been out of raditation since August 11 and we thought he would have decreased his meds but instead they just put an extra 50 to his durajesic patch. I know pain meds are neccessary but I'm getting frustrated why they get to the source of the pain. Im nervous that the cancer has spread to the bone, but wouldn't they have seen it on the ct scan. can you believe i didnt Ask the Dr. I'm very scared and hate to see my husband in constant pain. Any suggestions. They also havent done any blood work lately.
Take Care
B

B, the only part of your post that I can really respond to is that I know you are scared to death and feeling really helpless. Alot of this seems to boil down to a guessing game, and the more people guessing- the more frustrating it is. It is really hard to deal with and I hope you can stay strong. Amy

B, clinically I'm no help to you, but emotionally I feel your pain and I omly hope that you feel our strong support for you in this difficult time.
Mark.

B,

Sometime it takes awhile for meds to kick in. Pain meds take a few hours. If in doubt call the DR.

The only thing I can think of is try warm towels. I take a wet wash cloth and wrap in dry hand towel and then put in mirco ware. ( one min.) It feels good on the neck, and areas that hurt.

Hope this is some help.
take care..
Diane

okay, that's a lot going on. I'd start with getting a CBC to check his blood counts and also make sure you are taking his temperature since they're assuming there's an infection present with the antibiotics. It would be nice to know what his white counts are.

The pain issue is complicated because it could be a combination of things. He's had steroids and is on a duragesic patch, plus there's the swelling. What dose of the patch is he on? Some people don't tolerate the patch and the headaches could be related to that. It could be that the nerves in his jaw are coming back after treatment. Jack used to describe it as feeling like bugs were crawling up his neck. Also ask about Neuronton as that helped Jack control the nerve pain that persisted after treatment.

I understand why you're scared and why you're thinking it's mets, that's a normal reaction. Every time Jack looks funny, I think he has mets somewhere. The CT scan and MRI haven't shown anything so that's good. My suggestion is that you write down every question you can think of and go thru each one when you call or visit the doctor. If I didn't do that I'd never remember to ask half of them. A

Hope this helps.

Regards JoAnne

Thanks everyone for your input. But Friday the 27th the day we were to go to for the CT Scan. Was A Day we would Like to forget. I came home to a horror scene I walked into my house to a sight I wish I could forget there was blood everywhere in the kitchen the bathroom all over the walls. And my dear Brian was no where to be found my neighbors told me they had seen an ambulance leave shortly before I came home. I was put in the family room at the hospital where I thought I had lost my Brian. The ENT came in to tell me he had bled out from one of the vessels in his throat where there was a large ULCER that had exposed bone. Apparently thats where all this pain was coming from. They cortized it and he had to be given 6 liters of blood his heart had stopped once and they were not sure of brain damage. They quickly med flighted him to Mass General in Boston where he stayed for 5 days in ICU he was on a ventilator but is now breathing on his own. he has been given a trech, they can not guarantee this will not happen again. They had taken a biopsy to see if the ulcer was cancerous and if it was they would be able to do nothing for him because it would be to close to his spinal cord and they would have to take the whole tongue. So we had to wait 3 LONG days to finnally get the Answer that the tissue in the ulcer was not cancer. Apparently this is all from the radiation. Thankfully there is no Brain damage, he has been moved to mass eye and ear in Boston. And is having problems with swelling in his legs and is very weak and still in alot of pain. The hyberbaric chamber is not an option at this point because of all the swelling. They want to send him home tommorow but we are fighting that because he just is not ready his legs are so swollen that the fluid is leaking out of his pores. I question if its from all the fluid he got in ICU like they think it is or if something else is going on. And the pain is still an issue. either they have him completly zonked out or not enough so we have to Manage that. I am so thankful my 15 year old daughter did not come home on the bus that day. I will never forget what I saw. My 19 year old who is at school is also having a difficult time dealing with all this. We were told that this does happen to cancer patients but its rare. The drs can't believe he made it to phone, he has a strong will to live they said but they did'nt need to tell me that. He was looking forward to trying to start slowly back to work this month for his peace of mind and to keep the health insurance. What a set Back I HATE THIS CANCER. And now he has to live with the possibility of this happening again.
Please keep him in your prayers
Thanks for your support.
Take care

B,

What a horrific thing to go through. I'm so very sorry for all of your family. I will keep you in my prayers and hope that things get better for Brian.

Please hang in there.

Dear B, What a horrific thing to go through. You and Brian are both real fighters. I hope he is getting better daily, and that your heart rate is back in the normal range. Amy

B, I am in total shock reading what happen to Brian.

I am thinking of you all. I pray that all will be OK, soon. My heart goes out to you and your family.

Take care,
Diane

Thanks for your thoughts and prayers.Just wanted to update you on Brian, he had been moved to a rehab hospital and seems to be doing better, the doctor there had a different approach to the swelling in his legs, she felt it was not edema from all the fluids he got but rather something called lympdema ( spelling?). something that cancer patients get from the nodes becoming sluggish. She took him off the diaretics. and massaged his leg and then wrapped one leg with a light material stocking and then with a material similar to a filter then wrapped that with guage and finnally an ace bandage. She just did one leg to compare. Well the next morning his leg was almost back to normal. I was amazed because he had been on all those diaretics and they did nothing. So he will be there for a week insurance wont cover anymore than that. so he will come home with the visiting nurse and they will teach me how to take of the trach. They also tried a pain patch on his jaw and neck, not sure how that will work out. But his spirits seem to be better, please continue your prayers.So glad I found this site.
Take Care
B