| | Joined: Oct 2012 Posts: 12 Member | OP  Member
Joined: Oct 2012 Posts: 12 | Alot of people have written to me asking about my husband Jim and to update how he was doing. Im sorry it has taken me so long to update. Things have been nonstop and crazy here. After we found out the 1st clinical trial didnt work on his lungs,he was scheduled to start a different one on Nov 9th. A routine cat scan for the trial showed the cancer had spread to his brain. The clinical trial was postponed and Jim completed 2 weeks of brain radiation to stop the growth. We had a few days of hallucinating from the radiation but thankfully nothing serious. He then developed a fungal infection infection in his right lung and brain. Was hospitalized for a week to get that under control. Now we are having a problem keeping his hemoglobin levels at a safe range so we are having blood transfusions weekly and have started the second clinical trial as well. He has developed internal bleeding from the colon last week and a colonoscopy on Friday found 11 tumors in the bottom part of his colon. The doctors say that since it spread there so quickly and to such an extent that its safe to assume that its probably everywhere by now. Jim is very weak, cant keep any weight on, we started pain pills around the clock to stop the coughing since he is coughing up blood clots now. The doctors say he has blood clots on the brain so the estimated time they are giving him is any minute to up to 2 months. The red cross, his doctors and the military allowed our son to come home on emergency leave from afghanistan over thanksgiving to spend some time with his dad while he still could. this is a living nightmare. i could have never foreseen this and cant believe this is happening to us. All from stage 2 cancer on his left tonsil. its been almost 2 years since this all started. right now im just praying that Jim can make it through the holidays so we can enjoy him just a little bit more. thank you all for your concern and prayers for my husband. ill update when i can but right now i spend as much time with him as possible. i know its limited and i dont want to waste a minute of it.
Age 44.Tonsil HPV stage 4. Radiation/Cistplatin/peg tube. Spread lungs,stage 4. Lung wedge removal 12/5/2011. Carboplation, erbitux, 5fu until 5/2012. Clinical trial Anixinib.Disease progession in lungs,brain,colon,stomach,intestines. Hospice started 12/20/2012, passed away 1/3/2013
| | | | | 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 | Wendy, I am so very sorry to hear about all of Jims struggles. He certainly has had a very difficult time! My heart goes out to you!
Best wishes to you both!
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Wendy - I'm so sorry for all that Jim has had endure. I wish I had the words to be able to comfort you and your son that might ease the pain and sadness for all of you. I'm praying that there will be some peaceful moments that you can share with each other in the days ahead. Take care of you, too, Wendy and just get back to us whenever you can.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | I am so sorry. I know it's a nightmare - hugs and prefers to you.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Wendy, there are no words that any of us can say to help you through this. It is so inadequate, but I am so sorry for you and Jim. My heart goes out to your family.
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Dear Wendy,
Thank you so much for taking the time to update. We have been praying and wondering how it was going but didn't want to be too intrusive.
I'm sorry things have continued to go downhill, and pray that these last months will be spent as peacefully as possible. As others have said, there are no words...
We all hate this cursed disease and share emotionally in your nightmare.
Hugs,
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Aug 2012 Posts: 56 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 56 | Jim and your family are in my prayers; I hope everyone may somehow find peace at this difficult time.
Ed H, NE Ohio
SCC BOT with lymph node involvement, HPV+, diagnosed 7/12
Radiation and Cisplatin
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Wendy, you, Jim and your family have been in my thoughts all day. Linda. XX
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | I'm very sorry to hear this, and my thoughts and prayers are with you, and your husband, Jim.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Wendy, I�m really sorry to hear about Jim. I�m glad your son was able to get emergency leave to spend time with Jim. Hugs and prayers to you both.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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