Good afternoon, all -

I'm new to this website, and am glad to have found a place where so many have so much in common. My husband, Russ, is 51 and was diagnosed with Stage IV, present in the floor of the mouth, his tongue, and the left side of his jawbone. He had 3 rounds of chemo, and 7 weeks of radiation, finishing just before Thanksgiving last year, and appeared to have done "okay." In mid-December, he developed infections from the necrotic bone and tissue, and we were in and out of hospitals from January through mid-March. Late January, a surgeon attempted a mandibular resection to remove the necrotic bone, but found a large tumor that had been hiding behind the infection, despite having had a CT scan, PT scan, and MRI. At that point, we were told that we had 3 options: do nothing, have chemo every 3 weeks until it stops working, or go to the Indiana University Medical Center in Indianapolis, IN, and consult with a specialist in the field. As my husband is only 51, option 3 seemed to be the only one that gave us an option. During the 10 days at IUMC, he had a tracheotomy in preparation, and the next step was to have a carotid artery occlusion test, but discovered prior to that was that the tumor was wrapped around the carotid artery, making surgery impossible. At that point, it was basically "get your affairs in order" and he was given 3-6 months. He's now in hospice care, and I while have some idea what of what to expect, I was hoping others had been through this and could 'talk' me through the progression.



The cancer has permeated the skin, and he's developed huge ulcers on his chin that are open all the way through to the inside of the mouth, and they're getting larger by the day. He's pretty much lost the use of his left arm, and speculation is that the tumor had invaded the nerves that control it. His oxygen levels are hovering around 90-91, where 3 weeks ago they were a steady 99. His BP is all over the board.

Any info would be very much appreciated....

Judy,

My heart and prayers go out to you and Russ and your family. I hope that he is not suffering and that he has enough pain meds.

I'm sure that you will be hearing from some caregivers who have been down this terrible road. The weekends are slow on the forum, but by Monday, you will have some advice, I'm sure.

Jerry

Judy, I cry as I read this. I am so, so sorry. I just want to let you know that you, Russ and your family are in my thoughts and prayers. This has been a pretty rough week for me but nothing compared to what you are going through. Hugs, Wanda

Judy- My husband was diagnosed with about the same thing as your husband. He had the jawbone removed during his first surgery and replace with leg bone and tissue. Unfortunately chemo, radiation, more surgery, and still more chemo did not work. His tumor had wrapped around his carotid also and he had metastasis to his lungs. He ended up in Hospice after the last round of chemo made him so sick that he decided he'd had enough. He passed away 6 weeks later at the age of 48. They made him as comfortable as they could but he was a fighter and held on to the very end. Please send me a pm if you really want details as they are too disturbing to post. My prayers are with you, I know what you are going through.

Sue

Thank you all for your kind wishes and responses to my post. Just knowing there are others who are or have gone through this makes me feel much less alone and frightened.

Welcome to OCF Judy. Im so sorry you are going thru such a difficult time with your husband Russ. Its a very sad time for you and yoru family. You will find lots of support to help you. There are several members who are in similar circumstances and some who have recently lost their loved ones to this awful disease. Again, I want to say how sorry I am you are going thru this.

Judy, I like the others in our home want to wish you all of the best for your family and have you in our prayers daily. This reminds me of a few others that have gone thru the same things. It's tough for both of you , just stand tall and fight back as best you can. I would bet Liz will be posting.

Judy,

Lets hope Hospice can make him as comfortable as possible. Unfortunately we have seen far to many get to this stage and there are many current posters that have endured what you are going through so lets hope they read this post.

Hi Judy
my husbands secondary tumour burst through the skin of his jaw,face and neck in a series of holes that eventually joined up into one large area.If you would like an idea of what it is to come over the next few weeks ,my blog of the three weeks rob was in hospice can be found on the ocf forum blogs titled "walking towards the light"
liz xx

Hi Liz -

I read your blog, and I'm in awe at the courage it must have taken to write it. Russ has been in a skilled nursing facility for 3 weeks now. Week one was pretty much working out the pain control issues, and I have to say that they've been doing a fantastic job of controlling it. He was highly agitated, and sleepless, getting up and pacing and literally trying to rearrange his room several times a day. When I'd leave for a time, I'd come back to play "where're the clothes" and would find them stuffed everywhere in his room, and he'd have no memory of doing so. He's already on 200mg of Fentanyl, and is receiving liquid morphine through his PEG tube evey 2 hours, with oxycodone for breakthrough. Week 2 started with the development of the ulcerations, and now they are as described in your blog, except that they're still confined above the jawbone, though they extend to both sides of the face, and are joining into one big one that requires huge dressings. What breaks my heart is that he cannot talk because there's so much involvement in the inside of the mouth that his tongue is useless. Coupled with the tracheotomy, all I can hear Like your husband, he has a huge problem with drainage, and receives all nourishment and fluids through his PEG. These past several days, he's been sleeping more and more, though it's a more of a fitful, twitchy doze, and he's perspiring a lot because of the morphine. He's so out of it most of the time that I wonder if he realizes I'm there, and he hallucinates a lot.