#83771 11-08-2008 07:19 PM | Joined: May 2008 Posts: 24 Member | OP  Member
Joined: May 2008 Posts: 24 | Hello,
My husband was diagnosed March of 07. He has had two surgeries and two rounds with chemo/radiation. We recently were told his cancer has returned and there is nothing they can do. I've posted questions on this site regarding 2nd opinions but that is not what I would like to ask in this post. My mind is running wild with just how bad this situation is going to get. He currently has a new tumor growing under the floor of his mouth (under the flap they built with part of his leg tissue in last surgery) towards the chin area. I know this is an awful question to ask but I want to know what to expect. How does a person die from this? The Dr. sort of said the tumors sort of use up all the persons nutrients, energy, etc... until they get weaker and thinner. Then possibly phnemonia sets in. I'm picturing a huge tumor breaking through his face and him crying in pain, etc...etc.. I have two small children and I want to plan ahead for how bad this situation can get. I realize everyone is different but I am concerned. If someone would prefer to e-mail me privately and not post on this that is fine. He is also getting a trache put in next Thursday to assist in his breathing.
I'm so scared to watch my husband suffer. He is such a good hearted person who so doesn't deserve the hand he's been dealt.
Thank you for your help.
Sincerely,
Tamara(wife to husband Kyle)
Kyle - 44 years old. Non smoker, casual drinker.
03/07-Tumor removed in tongue, chemo/rad
06/08-Tumor removed in base of mouth, left jaw removed, part of skin on neck - followed w/chemo/rad.
10/08-New tumor already growing.
Kyle - 43 years old. Non smoker, casual drinker.
03/07-Tumor removed in tongue, chemo/rad
06/08-Tumor removed in base of mouth, left jaw removed, part of skin on neck - followed w/chemo/rad.
10/08-New tumor already growing.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Tamara, I am very sorry and saddened that you and Kyle have to go through this. The hospice people will manage his pain and give him all of the dignity and normalcy that they can. They will train you and the other secondary caregivers on what to do and expect. He may also get some palliative treatment to reduce the tumors (and the pain) as well. Since everyone responds differently to this disease it is difficult to tell you exactly what to expect. Cachexia is a common form of cancer death. It is also known as "wasting" disease. Essentially the patient simply loses interest in eating and slowly the organs shut down. The pain center also shut down so the patient is usually not in terrible pain at the end. This is what happened to my father who died from Non-Hodgkins Lymphoma. Oddly, even though it is basically starvation he had no sensation of being hungry. There are other scenarios as well and liz may wish to share her experience, or you can read her blog(s) at: http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=63591#Post63591and also http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=63463#Post63463
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Tamara,
I am so sorry that you have to go through this. It's so very true that Kyle doesn't deserve it, and neither do you or the children.
Though I haven't been in your position, I did lose my Mom last year. I can tell you that Hospice was absolutely wonderful in every way. They were with her 24 hours a day, taking care of her every need and making sure that she was comfortable and not in pain. They also helped my brother and I and the rest of our family immensely with kindness, understanding, compassion, and anything else we may have needed. In fact they still write and call me from time to time just to make sure I'm alright.
I write this hoping that there is still hope through getting that second opinion, and I pray that there is. My heart goes out to Kyle, you, and the children.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Hi Tamara...I too would like to send you my thoughts and well wishes. I have not had the experiences you are going through but I do know it feels good to have support and caring from people in any form. I just wanted to let you know you are not alone and never have to be as long as this site is going there is always someone around to help. My best to your husband, your children and you. May you find the peace you deserve and need.
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Tamara,
I'm sorry that your situation is so dire. I have nothing to offer you except my thoughts and prayers for peacefulness and comfort in this very difficult time for your family.
Tim
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
| | | | | 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 | Tamara
the second link Gary posted is the one about Robins dying,and how it progressed.
i am here and happy to help if i can.My e-mail address is in my profile
liz
Last edited by Cookey; 11-09-2008 11:40 AM.
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 2007 Posts: 20 Member | | Member
Joined: Apr 2007 Posts: 20 | I had EXACTLY the same question when my dear friend, Andy, finally got on hospice care. I helped take care of him for the last year of his life as he battled glioma and was there for his last breaths at home. I cornered the nurses, and privately pressed them to tell me EXACTLY what I could expect in his last times. Many evaded the question, until finally, in tears I begged. One wonderful nurse talked me through the three possibilities, all the way through. He let me know what were the general signs and symptoms of each step. There ARE things you can know and I found it soothing to know them. It was still intense without all that fear. I am now a hospice volunteer and I would recommend you talk directly to your hospice staff. Be straight up with them and ask allllll your questions until you feel clear. I�d be happy to give you the straight scoop, from my understanding and learning. Just send me a private e-mail with your questions and I�ll be as straight with you as I can.
with deep respect for truth,
Thalia
~thalia
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Tamara,
I add my prayers to the others. I trust that you will find the answers to your questions. Hugs to the little ones, may they be a source of comfort and strength to you.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | 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 | Tamara:
You have my prayers too. Im sorry your family is in such a terrible situation. Please lean on us for your support, we are here to help.
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: 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 | Tamara,
It's just a tragedy. We all wish we could make it go away but sometimes all the knowledge and experience in the world can't help. Let's hope and pray for a miracle.
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.
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