| | Joined: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Well my OCF friends, it looks like we are on the last leg of this journey. Jim has been in the palliative car center for the last 4 days and is now sleeping most of the day & no longer awakens to my voice. I am totally distraught and upset beyond my wildest imagination and/or expectations. I really thought I was prepared for this. I keep questioning everything I am doing and have done. His left lung is paralyzed from the tumor growing across the nerve and his right one is filled with pneumonia. So, just thought I'd let you know...please pray for his transition to be a peaceful one...I miss him so much.
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Paula,
Although I have not posted to you recently, I have been following your travails and have been and will continue to pray for Jim and for strenght for 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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Oh Paula, I feel so sad for you and Jim. It has been a tough road for you both. I cannot imagine the pain you are experiencing. You are and have been a wonderful caregiver to your husband these last 4 years. I will pray for you and Jim.
Anita
Anita (71)
CG to husband, Clark, 82,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22, 6/25
PEG 7/21
Botox injections
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Paula,
I'll light a candle for you and Jim. All my strength and prayers to you both.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | Both of you are in my thoughts and prayers....there's no way to prepare and having followed your posts you shouldn't question yourself,you've done a wonderful job as CG.
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Paula:
My prayers are with you both.
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Paula,
I've been following your post. It's human nature to question yourself did I do this right, did I do that, could I have done something else, you did everything you could possible do to help him. You're a wonderful Caregiver, don't question yourself.
You both are in my thoughts and prayers.
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Paula, I have no words, but pass to you love, hugs, and gentle prayer in this truly difficult time.
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Paula, it has been such a long rough road for you both. I will continue to keep both you and Jim in my daily prayers.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Paula,
I'm sending you all the love I have.
Life is a journey that has a beginning and an end for us. It is the love and memories shared with those we hold dear that make life so sweet...and so hard when the journey ends.
Jim is leaving the pain and struggle and finding peace...he is leaving knowing that he was loved and that he had a companion that loved him and was willing to be there with him until the end of his journey.
As a man who believed my time had come, I can never express the feelings I had (and have) for my wife/caregiver, Aly, knowing she was there with me and for me until I passed on.
Never regret the decisions you made my friend, because it was the decision to stand by Jim that mattered the most.
My heart is with you and Jim...peace be with you both.
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: 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 | Paula: I'm sending you this message through my tears. I'm incredibly sad for both of you. I know how strong Jim has been through all of this - as have you. Don't you EVER question anything you did as his caregiver - we should all be so lucky as to have someone like you in our lives. You truly are a treasure, and I know Jim believes that too.
It will be excruciating to say "see you later", and let him go. But he is going to a place of peace and comfort - in God's care.
Luv ya
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 | Paula,
I'm so sorry. Hang in there. You must go on. I'm sure Jim would have wanted you to be strong.
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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | May peace be with you both and both are in our thoughts and prayers1! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Sending strength and hugs your way..I know this is so very hard.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | Paula, you and Jim are in my thoughts and prayers. Please don't second guess yourself... you are a trooper and hung in there to support Jim through this difficult journey. I hope that you will be gentle and kind to yourself as you begin your recovery from this experience.
Big hug from NC
Dodie
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Paula - I'm so sorry for the ever so painful days you and Jim are having to go through. I hold you both in my heart and in my prayers and hope for some peaceful and gentle moments for the two of you.
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: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | Prayers to you and to Jim for a peaceful journey.
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Paula, I'm so, so sorry for all you are going through. Without a doubt the most difficult thing in life is to watch someone you love so much suffer. You have been a GREAT caregiver to Jim. It is natural to second guess yourself but please don't do that. Jim is very lucky to have you. I will pray for a quick, peaceful passing for Jim. He is going to finally be pain free and at peace in a better place.
Eric's post was beautiful. Jim is on a journey that we all will make one day. Continued prayers to both of you and your family. Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | 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 | Don't crack now sweetie you have done so very well for so very long xxxx
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I'm sorry the end is so near. My thuoughts are with you both.
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
| | | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | I am so sad and don't know what to say....you are both in my prayers  Hugs, 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: Jul 2009 Posts: 280 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Paula I pray that you will have peace in your heart. I pray that you will not question yourself, but know that you did your best through this journey. I am so sad for you, but I know that Jim will be at rest and at peace.
All my love.
Christine
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2010 Posts: 142 | Paula,
My Mom died of cancer at 52 and my Dad of Diabetes at 67. Both times I thought I had known so long that there was no way I would feel grief at either of their deaths. But you can't pre grieve so don't beat your self up that you aren't ready or you would some how be prepared for this time. As I told a friend this weekend who lost her only son at 43 to a sudden death. I don't think the loss every goes away but the sharp edges smooth with time. I will keep you in my prayers.
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
5/25/2025 All Clear
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Paula
Please don't second guess yourself. My diocesan paper referenced a New Yorker article by an oncologist with this particular excerpt. I hope it provides you some comfort since it documents just how right your actions are:
[quote]The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don�t want a general who fights to the point of total annihilation. You don�t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn�t, someone who understood that the damage is greatest if all you do is fight to the bitter end.
More often, these days, medicine seems to supply neither Custers nor Lees. We are increasingly the generals who march the soldiers onward, saying all the while, �You let me know when you want to stop.� All-out treatment, we tell the terminally ill, is a train you can get off at any time�just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come[/quote]
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2010 Posts: 201 | Dear Paula...I Don't know what to say except that both you and Jim are in my prayers for a peaceful passing and may time heal your heart..
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
| | | | | Joined: Jan 2006 Posts: 757 Likes: 2 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 757 Likes: 2 | Paula,
So sorry to hear this. I'm praying for 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: 2013-2025 (ORN of lower jaw)
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Paula, Honey I'm so very sorry. You are a most wonderful wife and caregiver. Yours is one of the most hardest fought battles I have ever known of. No matter how much you think you are prepared-you aren't. Hold his hand, tell him you love him and know he is going to a better place.
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 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Thanks everyone for all of your heartfelt words and for the wisdom and experience that you all have shared with me. Jim lost his battle yesterday @ 10:45 am. I was holding his hand and rubbing his arm. His breathing never changed - he took one deep gasp of air and then it was done. Death is a thief and it has robbed me of the one thing that was purposeful to me.
I have an appointment at 1:00 today to make funeral arrangements....wish I could crawl into a hole and die with him.
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: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | Paula, may God bless you. You are in my thoughts and prayers.
D
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | 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 am so very sorry Paula. There are no words that can ease your pain. Heaven has welcomed another OCF Angel while those of us left behind wish it wasn't so.
My prayers are with you. Sounds very trite to say something like "if there is anything I can do", but you do know your OCF family IS here for you day and night. Some of us have limited speech so we're very good listeners!!
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: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Oh Paula.....words can't express my heartfelt sadness for you at this time. Like Donna said, your OCF family is here for you 24/7. I hate this disease....
Hugs,
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: 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.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Paula
Sympathy and condolences on your loss of Jim. Life is so unfair.
If I knew words to assuage your grief, I'd share them but at a time like this, there are none.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | I'm sorry for your loss Paula, but you need not to think like that. Please celebrate his life not his death. Think of him and smile and think of the happiness he brought to your life and hold it close to your heart and always remember the love. God Bless you and your family
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 |
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Paula, I am so sorry for the loss of your beloved Jim. You were a wonderful caregiver and companion to him. May the thoughts of happier days bring you comfort in this time of sorrow. Sending my prayers and (((HUGS))) to you.
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Paula I am so sorry that Jim has lost his battle with this awful disease.
My condolences to you and your family.
I feel that Jim is now Resting In Peace!
Love
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | 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 | Paula,
Please do what you have to do to deal with your grief but please don't let this cancer claim 2 lives. You can't change what happened and you will grive but you need to concentrate on the rest of your life. Being miserable, being depressed, crawling in a hole will not change anything.
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: Sep 2009 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 126 | Thinking of you at this time and sending thoughts and prayers.
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Paula-I'm so very sorry. Take special care of yourself at this time. Cry when you need to, rest when you need to, and drink lots of water. I'm here for you at any time. i will pm my number to you. As one who has walked this road-please let me help if I can. Our angels are looking down on us now and they are truly in a better place.
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Paula:
Nothing I can say will help, but maybe knowing another of your OCF friends is praying for you at this most horrible time of your life, might help a little. Reading all the other comments from everyone has to let you know how sorry we all are for your loss. Please keep in touch with us.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | Paula, I'm so sorry to hear this. Your loyalty and strength have seen you and Jim through this long and difficult journey. If I ever have to face this outcome myself, I hope I'll be able to find the courage that you have shown. My heart goes out to you both. Anne
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Paula - I'm so sorry to hear of Jim's passing. I hope that in the days ahead, there will be some peaceful and soothing moments for you and comfort from family and friends.
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: May 2009 Posts: 1,413 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,413 Likes: 1 | Paula, I have been following your sory, but did not post much. I am so sorry for your loss. I will be praying for you during this difficult time. There are no words I can say to help ease the pain, but we are all here for you. Vent all you need to.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Paula,
I am so very sorry that you lost your Jim. You and your family are in my thoughts. I wish you peace and comfort.
Anita
Anita (71)
CG to husband, Clark, 82,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22, 6/25
PEG 7/21
Botox injections
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Paula, I'm so sorry for your loss of Jim. You are a wonderful caregiver who was with Jim till the very end. What a wonderful wife you are. Sending my love to you and your family.
Wendy
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
17/03/22 lost the battle. Missed dearly
| | | | | Joined: Aug 2008 Posts: 100 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2008 Posts: 100 | I am so sorry Paula,I know words are of little consulation in your grief and wish there was something I could do to help. Please know that you and Jim are in my thoughts and prayers.
Tom
Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle
| | | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | Paula -- My thoughts and prayers are with you and your family. You did everything humanly possible, and Jim's suffering is at an end. No matter how prepared we think we are, when the time comes it is an awful blow. Been through it with several family members, so thoughts are with you as you go through the grieving process.
Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Paula,
My prayer for you is that as time goes by you will find comfort in the good memories of your days with Jim.
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.
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