#93199 04-04-2009 01:06 PM | Joined: Apr 2009 Posts: 9 Member | OP Member Joined: Apr 2009 Posts: 9 | 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....
Wife of Russ, 51, who was diagnosed with Stage IV 4cm tumor in mouth floor, jawbone, and tongue in June, 2008. Had aggressive chemo & radiation. Tried & failed to have a resection in March, 2009. Was in hospice care from March 13 until he left this earth on April 10, 2009.
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | 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
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | 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
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | 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
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | Joined: Apr 2009 Posts: 9 Member | OP Member Joined: Apr 2009 Posts: 9 | 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.
Wife of Russ, 51, who was diagnosed with Stage IV 4cm tumor in mouth floor, jawbone, and tongue in June, 2008. Had aggressive chemo & radiation. Tried & failed to have a resection in March, 2009. Was in hospice care from March 13 until he left this earth on April 10, 2009.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | 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.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | 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
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Apr 2009 Posts: 9 Member | OP Member Joined: Apr 2009 Posts: 9 | 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.
Wife of Russ, 51, who was diagnosed with Stage IV 4cm tumor in mouth floor, jawbone, and tongue in June, 2008. Had aggressive chemo & radiation. Tried & failed to have a resection in March, 2009. Was in hospice care from March 13 until he left this earth on April 10, 2009.
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