| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have you in my prayers and best wishes. Life is just too tuff at times for any of us.
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: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | I am so sorry to read your post, I don't have any words to convey my feelings. I am just so sorry.
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Paula- I've been off the site lately and had missed your post. I'm so very sorry and as always, you know I'm here for you. I will be checking daily now so if you need to pm me-I'll get it.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Paula,
I'm so sorry to hear this news. I know this time is going to be hard for you. We are all here for you.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Has anyone heard from Paula (Coping in Texas)?? Wondering how she and Jim were doing.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | 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 | She e-mailed me and i replied but i haven't heard back .
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: Dec 2006 Posts: 147 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Hi everyone,
I'm sorry, but things have been very difficult - we're doing fine now. Jim went into the hospital on Monday, November 2nd and we came home this past Monday. His fractured leg got worse and they decided to operate to stabilize the leg (this is the amputated leg). So, it has been extremely difficult as the pain went out of control. They called in pain mgmt. Dr. who did an epidural using Demural the first night, then fentanyl w/ something else the 2nd night and the 3rd day, he was screaming to be put to sleep, plus they had Toridal running continuously through him as well and all the morphine that they could administer. The pharmacy manager came in as they didn't believe that kind of medicine was being administered to a patient and that they had called in their team of pharmacists to review what the Dr. was doing. The Dr.'s told me to go home and rest as they were going to incubate him if he didn't get comfortable within the next 3-4 hrs. So, after 3 days of being up, I went home took a shower and prepped myself for the worst. When I got back, they had given him a shot of Attivan and he seemed more comfortable. The pain became under control for the rest of the night and then on Thursday, it stabilized. Friday night he got up out of bed to use the bathroom - nurses were too busy to get into our room soon enough and Jim fell, but didn't do major damage to himself. They released him from the hospital this past Monday and I have been with him day/night. He won't let anyone help him but me as he says he can do it himself with my help. He lost total control Tuesday nite while taking a shower - I left him in his chair to go empty the trash and told him I'd be right back. I don't know what happened other than he must have become very frightened that no one was with him and he started screaming for me - his voice was extremely hoarse and he had a few explatives to say to me. After that he was fine and has been slowly getting his strength back. So, we are spending a lot of quality time together and trying to enjoy our time together. My brother came in from England and I haven't seen him in 20 + years; he is also battling cancer of the prostrate, but I told him that I needed him and he came. I have really enjoyed spending some time with him - he is very intelligent; he really likes Jim a lot. I'm pretty bitter with my mom and sister as they couldn't drive 4 hrs. as my mom had to take care of her dog and my sister had to check with her work. Keep in mind that my mother has 2 brothers that live on our farm and watch her dog and my sister doesn't work on weekends, which was the time that I had asked them to come. thanks to everyone for all of your prayers and concern.
Love to all,
Jim and Paula
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | Joined: Oct 2006 Posts: 209 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2006 Posts: 209 | Geez, Paula, you have your hands full. My heart goes out to you. I'm glad your brother was able to come. He sounds like a wonderful guy.
Ginny
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I'm not sure what to say Paula. You certainly have raised a chorus of emotions from me - happy to hear from you, sad about recent developments, admiration for your strength of character and Jim's ability to get through what sounds like a hellish ordeal, anger at your "family", and relieved that your brother came to support you. That pretty much wraps it up. Keep us posted. You are in my prayers.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | 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 |
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.
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