#44173 11-08-2004 11:23 PM | Joined: Aug 2004 Posts: 30 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Aug 2004 Posts: 30 | Last Thursday, Kim's doctors informed us that there are no other options. The chemo isn't working and because of her infection, she cannot use the experimental treatments. He gave her a prognosis, which we were hoping would never come. She has anywhere from a week to a few months, according to her doctor. He told my parents that they can get another opinion if they want, but that if he knew of anyone who could help Kim, he'd have her on a plane immediately. This really sucks! Kim signed power of attorney to my parents and a living will. She didn't even cry. SHe amazes me everyday with her strength. They put her on a pump to administer her pain meds and hospice is coming to the house. IT is so tough to admit defeat to this nasty disease. Now my prayers are that Kim doesn't suffer too much.
Everyday we see some more tumors and unlike most tumors that eat away at the inside of a body. Kim's is eating away at the outisde. She has massive hole across her neck from the cancer tumors. We found a tumor on her lip last Monday. Last Thursday, she had one in the corner of her left eye, and On Sunday, she had one her right eyelid.
I am so scared for her, myself, and my family. I really don't know what to do at this point. I try to see her everyday and make her smile, but I don't feel like it's enough. I am so angry that she is being cheated from life!! At 23, what has she really experienced?!
I am sorry to ramble on. Please keep her in your prayers.
Thanks,
Sister of Kim, a 24 year old cancer fighter diagnosed on 12/5/04, who fought strong and hard and died with dignity and honor on 1/3/05.
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#44174 11-09-2004 02:58 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | May God bless you and keep you.
Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#44175 11-09-2004 03:16 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | May Kims journey be painlss and peaceful. My thoughts and prayers go out to kim and her family. Remember you will meet her again.
God Bless, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#44176 11-09-2004 03:35 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Angie,
I am so sorry that it has come down to this. I think I know how you feel. Heather was only 29 when this disease claimed her life. Besides parents, grandparents, siblings and friends, she also left behind a husband and young daughter. It was devastating, not just to lose her, but to have to watch her suffer. She also had holes in her neck. Near the end, she had fluids leaking from her nose, mouth and ears. It is a terrible thing to witness. I can feel your anguish. I only wish there was something I could say to ease the pain.
I, too, hope Kim doesn't have to suffer much. Don't be afraid to have the pain meds increased as needed. The main thing now is to keep her as comfortable as possible. Please take advantage of all the services hospice has to offer. They can help to make the final journey a little more bearable.
Your pain will not be eased anytime soon. It has been more than a year now since we lost Heather and I am still hurt, angry and even bewildered at times. I still have trouble accepting that it had to be this way. I did not go to grief counseling and I only recently went on an anti-depressant. I suggest that you and your family not wait as long as I did to take these steps.
Please vent here as often as you want. I derived a great deal of comfort from the people on the forum. I knew they would listen to all my ramblings. There is a common bond here that reaches across the miles.
Sending hugs to you and yours. May your god be with you.
Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#44177 11-09-2004 04:29 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | I'm so sorry for you & your family. I'm speechless.
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#44178 11-09-2004 05:31 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Angie-
My heart and prayers go out to you, Kim and your family. I pray that Kim will find peace and faith as she beings a new journey. As Rosie has said your journey won't end soon as the caregivers and family of those of us with cancer are left with the pain, heartache and picking up the pieces of their lives. Hold onto the good memories that you've shared with Kim and take care of yourself. Kim is very fortunate to have a sister that has so much love to share. Your sister has touched many lives. - 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 :-)
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#44179 11-09-2004 05:48 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Angie, I don't have words to express how I feel right now. I can only pray for Kim, you and your family..I am so sorry Kim is going thru this. Love, Carol
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---
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#44180 11-09-2004 07:50 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Angie,
My God send down angels to make Kim comfortable and to walk beside you and your family in this very hard and desvastating journey. I can't imagine the pain you are experiencing right now but know that you and your family are in my daily prayers. May God also provide peace and comfort.
Love, Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#44181 11-09-2004 10:44 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | Even though you know that Kim's time of departure is near and you prepare yourself for the inevitable. It will still be emotionally devestating when the time arrives,
It is human nature.
Even though we should celebrate death, we cannot. We are never ready to give them up.
My thoughts and prayers are with you and your family.
Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#44182 11-09-2004 01:13 PM | Joined: Jan 2003 Posts: 95 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2003 Posts: 95 | Take care of yourself and your family your sister is surely aware of the love you have for her . It may help her find peace
Diane | | |
#44183 11-09-2004 01:23 PM | Joined: Oct 2003 Posts: 52 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2003 Posts: 52 | Angie,
Be with your sister as much as possible, even though I know the pain of watching her suffer.
Hold her hand, hold her, tell her how much you love her..
I would do anything in this entire world to have my precious sister back. I will pray for your sister and her entire family. What you are going though is unbearable and I wish I could take your pain away.
God bless you all,
Michelle
Michelle, sister to Marcy
Dx January 03, partial glossectomy/selective neck dissection T2N1MO/recurrence June 03, radiation and chemo/recurrence Dec. 03 mets to spine and base of skull//palliative care//lost her April 10th 2004 Age of 32
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#44184 11-09-2004 01:24 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | My prayers for all of you.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#44185 11-09-2004 03:42 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hold your sisters hand and tell her how much you love her. When the final hours come, even though she may not acknowlege you, sometimes they can hear us and squeeze our hands to let us know they know we are there. I hope her final journey is pain free. Remember we are all here to help.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#44186 11-10-2004 07:27 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | I share your anger. The other feelings I have in this regard defy description. Please accept my very best wishes....
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#44187 11-10-2004 11:01 AM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Angie,
Please send my love and prayers to Kim and your family. My heart aches for you all. Please know that there are many people who are here for you if you need us.....Let me know if there is anything at all that I can do for you.
Love,
Dani
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#44188 11-10-2004 12:17 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Angie,
I am so sorry to hear the news. I pray for peace and comfort for you and your entire family. May He hold you in his arms and provide whatever you need right now and through this difficult time.
God Bless,
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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