| | Joined: Oct 2012 Posts: 12 Member | OP  Member
Joined: Oct 2012 Posts: 12 | I really appreciate all your well wishes but unfortunately there is more bad news. I really feel terrible posting all this about Jim because I know there are recently diagnosed people just signing up and I dont want to scare them. Please know that my husbands cancer is very aggressive. I dont know why he couldnt beat this like so many others and I dont want anyone to think that this is what they have in store for them. By telling my story is to let people know what we are going through and hopefully people will realize how lucky they are to have that second chance and not waste it. On Tuesday the hospital called and told us to get to emergency and check in immediately. The cat scan he took on Monday to prepare for his new clinical trial next month showed a very dangerous fungal pneumonia growing in his right upper lobe of his lung. We were admitted and 5 different fungal meds are now being administered around the clock. They did a MRI on Tuesday as well and sadly found 6 large tumors in Jims brain and 10 small tumors surrounding the rest of the brain. There is also a fungal infection that spread to the brain as well. My husband is starting full brain radiation Monday morning. 5 days a week for 3 weeks. They cant treat the cancer in both lungs until radiation is over. The doctors do not think he will survive the brain radiation at this point. They told me yesterday that life expectancy is 2 weeks to 2 months. I know that isnt written in stone and miracles to happen but we need so many miracles at this point that is it beyond my reasoning to think that my Jim will beat this. I am devastated beyond belief and am barely holding it together right now. I wish is that he doesnt suffer and that when the pain becomes unbearable that the doctors are able to control it with whatever means necessary. I envy all of you so very much. We did nothing different or wrong to cause this. Sadly my husband fell into the small percentage of tonsil cancers patients that wont survive. I will update when I can. Im home trying to get some sleep before going to spend another day at the hospital. Please understand if I cant respond for a couple of days. Please pray for a miracle for my wonderful husband. Ive never met a bigger fighter or someone that loves life more then he does. Thank you all so much.
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: Jan 2011 Posts: 123 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 123 | Wendy I am so sorry to read this! I hate seeing another person so young losing their battle. My husband was the same age. Know that you are both in my thoughts and prayers. Cherish the time you have and make the most you can of it.
Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
| | | | | 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 hope that the forum caregivers who have walked in your shoes can offer you more tangible assistance Wendy.
I am so very sorry for what you are going through. You are exactly right - neither you nor Jim did anything to deserve this and I wouldn't blame you if you felt mad as hell at everyone and everything right now. No one knows why flipping awful things happen to good people, and this whole situation is awful. My thoughts are with you. I hope you both manage to find some peace.
Do not worry about scaring posters - we as a community know this disease (and all life threatening diseases) have the potential to take lives. Hugs
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: 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 | We are all praying for miracles.
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: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Oh Wendy, my heart is breaking for you....sending tons of prayers to you and Jim.
Love,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | You and your husband are in my thoughts and prayers my dear.
Love
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Wendy,
Your story has touched many of us and our thoughts and prayers are with you and Jim. Please give him a hug from those of us on this site that care so much for what you both are going through. This is a bastard of a desease and it takes many way too young. I pray daily for a cure and those that walk this way may be free of pain. Love, Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Dear Wendy,
My heart breaks for you. I am so sorry this got so out of control so fast. There really are no words at this point.
I'm glad you have family nearby. I'm so glad you have had an amazing marriage and will always carry him in your heart.
Our family is praying for you both daily. I read your post out loud and all 5 of us cried. I have 3 of the most loving children! I am so pleased that they weep when they hear these life circumstances. We are all in this together. I know we aren't there and we don't know each other, but this site brings us together to love and support each other. We are here along side you!
Thnak you for taking the time to update us. You have touched many lives and we really do want to know how things are going.
I pray for peace over the situation and that Jim would not be in pain.
Blessings,
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | I'm so sorry, Wendy for the way things are going. Please know that you and Jim and your family are in our hearts and prayers.
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.)
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