#93904 04-19-2009 07:37 AM | Joined: May 2008 Posts: 24 Member | OP  Member
Joined: May 2008 Posts: 24 | Hello,
I've posted a number of times regarding my husband Kyle. He's 43 and has been on his death bed for a couple weeks now. I've dealt with everything fairly well until these past few days. The more time he hangs in there the more it breaks my heart. To see how strong he is and his will to survive in such a hopeless situation just breaks my heart. The hospice nurses told us for over a month it will be any day now, any day now. She finally apologized and said she isn't going to say anything anymore. He's breaking all the rules. He is on 24 hour nursing care. He has not had any Jevity feedings in 20 days (these were his wishes when he reached this point), he's been taking 5 breaths a minute for 4 days now, his heart is still going strong, etc.. He has 7 tumors on his neck and 1 on his chest. Who knows how many are inside his mouth. The odor gets overwhelming at times. I feel bad when I lean in to kiss his head or whisper in his ear and the smell gags me. I even feel bad writing this now. I love him and it's so unbearable to watch him suffer. I sit with him for awhile and then I have to come downstairs to see my kids or just get away. I know the odds are high he will pass away with me not in the room. I know it's selfish but I just can't stay in there all day any longer. His family has sort of checked out (they hardly checked in in the help department ever!)and only come by every 3-4 days now to visit for an hour or so. I wondered through the house yesterday looking for something, picking up my phone and putting it down. I finally figured out what I was doing. I was searching for Kyle so I could talk to him about how awful I was feeling. He's been my bestfriend for 18 years and he's who I always went to when I needed to talk. He's now the one I need to talk about and he's no longer there to talk to. This is going to be a terrible year missing him. Thank you for listening.
Tamara
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Tamara,
My heart is breaking for you...I am so sorry this is so hard and you are alone. You did the right thing by coming here to vent and get some emotional support. I just can't imagine that your family has not been more supportive...I just don't understand that.
Please know that all of us here are thinking of you and Kyle and sending strength and hugs your way.
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: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | Tamara,
I am so sorry for what you are going through. Given what you've said, it really will be the last day soon. Kyle is obviously young and healthy in some ways (his heart) and the ability to hold on can be amazing. Have the hospice nurses talked to you about any ways that you might talk to him about it being ok to let go? My thoughts are with you.
Sophie
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Tamara - Feel free to come in any time and talk to us - hopefully, we can offer you comfort in that you are not alone.
Warmly, JaneP
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Tamara, my heart aches for you. I am so, so sorry you are going through this. My mom died at home from Pancreatic Cancer and was on hospice care for the last 2 weeks. She didn't eat anything for 21 days before she died and didn't drink anything for almost a week. The human will to survive is very, very strong. I used to sit with her, hold her hand, stroke her hair and tell her "it's o.k. to go, we will be o.k. and take care of dad". I read "somewhere" that telling your loved one it's o.k. to go helps them to pass on. I know once things get to this point you just want all the suffering for everyone involved to be over. If you just need to chat with someone, feel free to PM me. I am so, so sorry. Hugs, 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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Tamara,
My heart goes out to you. I'm so very sorry that you are going through this. I know talking via this forum is different than talking in person but we are here for you. We are all here to support to you. Please vent and talk to us whenever you need to.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Tamara,
I am praying for you and your family. I'm so sorry. I can't imagine how difficult this is for you. Please know that we are all here for you.
Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Tamara- I know exactly what you are going through and really can't offer too much advice other than to spend as much time as you can with Kyle, remembering the good times. It will be over soon and you will know that you did what you could to make his last days special. Unfortunately my husband passed after I had left for the evening. The aide that was with him told me that she thought he waited until I was gone. I had been there day and night just hoping i was there when the time came but he had his own agenda. I had only gone home becuase my 14 year old was home alone. Just know that his suffering WILL be over soon-that is the only thing you have right now. I will saying special prayers for you this evening.
Sue
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Reading your post almost has me in tears, you are one strong lady and I feel so bad for you and Kyle. He must be a toughy for sure . I can't blame him for fighting death. I would and will do the same when it's time for me to be summoned. I have you both in my prayers .
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Dear Tamara,
I do know wht you are going through. My 47 year old brother hung on as well, fully sedated for the last few weeks of his life. He did not want to leave us. We waited for his last breath as well, it was agonizing. Sometimes I could not sit in his hospice room, holding his hand and hoping for a miracle. Then night before he died, I and my whole family were in his room, somehow we all just gathered at once, it was almost like he mentally summoned us. We were standing by his bed in a semi circle, then all of sudden he was trying to open his eyes, up until that moment he just laid there. Each one of us went up to him to say goodnight and he tried desparately to open his eyes and try to say something. The next morning he passed away. He knew when the time was here and so will your husband. He will know when it is time to give up and rest. My heart goes out to you and your family.
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Oct 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2007 Posts: 104 | Tamara
I am so sorry you are suffering so through this long terminal phase of Kyle's illness. It seems he wants to stay with you as long as he possibly can despite the disease marching forward continually. Try not to feel guilt for wanting to escape from it all at times, those are normal feelings. I am sure you are physically and emotinally exhausted with all you have been through thus far.
We are all here for you to vent as you need to, and emotionally support you. Wishing you strength and courage to face each day.
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
| | | | | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2009 Posts: 54 | Tamara,
My heart goes out to you and your family. There was a trick we used in surgery to block out bad smells. You put a small amount of Vicks in your nose. Its smell is just about the only thing you can smell. If the odor is questioned, maybe you can tell a small white lie i.e. you're using it to keep your sinuses open. In a situation like this I'm sure it would be forgiven. In a situation where you are wearing a mask; Oil of Wintergreen or Clove can be used on the outside. God Bless
Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
| | | | | Joined: Dec 2007 Posts: 57 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2007 Posts: 57 | Tamara,
I wish there were something to say that will help you. I read your post several times and recalled what happened to my brother. Selfishly, I wish he were still here.... better, yes but anyway would be fine, for me. ME being the key word. He did suffer and it pained my very soul to see him. Don't know if they or we will know when its time to go but take the time to thank him and tell him you love him. It's been alomst a year since my Jorge is gone and it still feels as if it were yesterday. Take care Tamara. We walk with you.
Noemi
Brother diagnosed SCC August 2005, radiation and chemo- 2 rounds, total glossectomy Sept. 2007, passed away May 21, 2008
"Everyday is beautiful" he stated on a cold and foggy Chicago winter day.
| | | | | Joined: May 2008 Posts: 24 Member | | OP Member
Joined: May 2008 Posts: 24 | Thank you all for your kind words. Someone used the word "anguish" and that fits this feeling perfectly. It's not a feeling I'd ever experienced before. I don't like it! I'm trying to stay calm and let things play out as they will. The hospice nurse told me today I really should not be in there any longer when they change all the bandages. I guess the one tumor on his neck has opened completely to the point you can see into his throat. It's crazy what the human body can take. I worry about these awful images haunting me later. I also worry about the decision to stop feeding him. I knew his wishes to a point but it was still me telling them to stop. He's gone 21 days today. Unbelievable. They all told me he would go before he died of starvation. I do not think that will be the case. I think starvation will be the cause of death. The cancer has grown so much in three weeks that I am sort of glad he's closer to death from the lack of food. That sounds awful but how long could he go if I had been feeding him? My kids are yelling I better go. Thanks again for your replies.
Sincerely,
Tamara
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Tamara- Try not to dwell on the cessation of the feedings. I too had to make that decision. It was the hardest thing I ever had to do and don't know if I could ever do it again but in my heart of hearts I know it was the right thing. He probably wasn't processing the feedings anyway. I just want to let you know that I feel your pain and wish you peace.
Sue
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | This would be the ideal forum to make our representatives in DC come and read at least for 1 hr a week. Maybe we could get the Federal help that is needed. This is the saddest place to vsit and read posts. But I just have to read them like most of us do.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Do not worry about the "not eating" thing. You are not starving him. His body, in the end stages of life, would not use the nutrition even if if was provided. He does not want - nor does his body want - the feedings. Let that guilt trip go. Not using nutrition is just part of the body's way of shutting down.
I agree - try NOT to be in the room during these dressing changes. I know if I was the patient I would not want people there to see this. I would not want these memories to haunt my family. We all want to be remembered as the vibrant, laughing, purposeful humans that we have been.
Try to hang in there.
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: Dec 2007 Posts: 57 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2007 Posts: 57 | Donna,
WOW. Thank you. Your post made "me" feel better and I hope that Tamara will one day understand. One never knows when peace will come and you just gave me some. Thank you.
Noemi
Brother diagnosed SCC August 2005, radiation and chemo- 2 rounds, total glossectomy Sept. 2007, passed away May 21, 2008
"Everyday is beautiful" he stated on a cold and foggy Chicago winter day.
| | | | | Joined: Apr 2009 Posts: 9 Member | | Member
Joined: Apr 2009 Posts: 9 | Dear Tamara -
I am so sorry you have to go through this. I just recently lost my husband (2 weeks ago) and those final weeks and days are absolutely heartrending, because you can't talk to him and you can't know how aware he is, and there's no one else who would understand what you've been through or what you feel except him. It's the most helpless I've ever felt. It's a double-edged sword...you can't stand to not be with him, and you can't stand to see him suffer, and you do have to leave for periods of time. And I understand about the odor...it's ghastly. My husband had open tumors all over the lower part of his face and neck, and the smell was there all the time.
On my husband's last day, I was there by his side all day, as were many of his friends and family members. Around 11:00, everyone else left, but still I was there. I dozed off somewhere around 2:00 a.m., and he left while I was sleeping. It's like he knew and didn't want to go while I was awake.
You're in my thoughts & prayers. Stay strong.......
Wife of Russ, 51, who was diagnosed with Stage IV 4cm tumor in mouth floor, jawbone, and tongue in June, 2008. Had aggressive chemo & radiation. Tried & failed to have a resection in March, 2009. Was in hospice care from March 13 until he left this earth on April 10, 2009.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Tamara
Im sorry for what you are going thru right now. It must be so difficult for you and your family. I will keep you in my prayers that your husband passes peacefully. Do not let guilt about feedings make you feel worse about this situation. You have done everything possible to help and he knows you are there with him.
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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Dear Tamara,
I remember just last April when Eddie's father was dying I had some of the same concerns about zero nutrition, the hospice nurses said it doesn't cause pain and the feeding wasn't really necessary. it was a very long and difficult month. they did give morphine to help him along at the end, to slow his heart down I believe we were told. He appeard to die a peaceful death. His children were at peace too that he had finally passed on to be pain free. you are all in my prayers.
Donna
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Dear Tamara,
I am so sorry you are going through this. You are now living what I fear the most, yet I know the day is coming. You are in my prayers.
Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Sep 2006 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2006 Posts: 49 | Dear Tamara,
I too am so very sorry you have to endure this - it is indeed the worst anguish one can experience. My beautiful 43-yr old daughter left us on Sept 29, 2008 after 2-1/2 yrs of suffering, the last 6 months being absolute hell. We too had Hospice the last month & the nurses kept telling us "today will probably be the last day..." She hung on for 2 agonizing weeks. I suffered the same questions about withholding feedings & water (she was on a feeding tube). We pushed the meds with just enough water to get it thru the tube. On the morning she passed the nurse came to get me at 2:30am & said that Teri had just opened her eyes and lifted both her arms in the air (she had been in a coma for a week & hadn't moved a muscle in that time). I was able to hold her until 5:02 when she breathed her last breath. I will treasure the fact that I was able to be holding her - I consider it a gift. You will relive each of these last days of this horrible journey over and over but be assured that it does eventually get better. Know that we are all here to help you through this. You and your family are in our prayers. Come let us help you.
Bonnie
----------------
CG to daughter Teri, age 43, tongue cancer (non-smoker, non-drinker, aerobics instructor); dx 4/06, partial glossectomy, 35 IMRT, 3 chemos, reoccurrance 5/09 (lung/kidney/bone), entered Heaven 9/29/08 | | | | | Joined: May 2008 Posts: 24 Member | | OP Member
Joined: May 2008 Posts: 24 | Kyle passed away Wednesday night at 7:20. His blood pressure and body temp was low for most of the day. He had that rattling sound for a few hours and it stopped about 30 minutes before he passed. I was putting my kids to bed when the nurse came to tell me he had only taken 1 breath in the past minute. My sister and I went in and he let out 2 more small breaths and he was gone. It was a relief to know he's no longer suffering. I still have not really reacted. I can not thank you all enough for sharing your stories and heartaches with me. I will keep you all in my thoughts and prayers.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | So sorry to hear that. I know it's good he is not suffering anymore but it is so hard for the family. I am thinking of you and your family.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Tamara, I am so sorry for your loss. I know you are probably feeling a range of emotions and also quite numb at the same time. At least the suffering is over. I will keep you and your family in my prayers. Take care of you.
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: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | So sorry for all of this Tamera. I am glad he and you are no longer suffering through this illness. I know this is a difficult time. My thoughts and prayers are with you.
KATE
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | My thoughts and prayers are with you during this difficult time.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have you in my prayers and understand that no matter what happens you are never quite ready for it to be over. You have my sympathy . The best to you and your family.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2009 Posts: 54 | My condolences to you and your family.
Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Tamara I'm so very sorry. Please take some time for yourself during these difficult days.
Sue
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 2007 Posts: 10,507 Likes: 6 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: 6 | Tamara, Im very sorry for the loss of your husband. Its truly a sad day when oral cancer claims another young life. I will say a prayer for you and your family to have strength in this difficult time.
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: Mar 2008 Posts: 67 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2008 Posts: 67 | Tamara,
I will include you and your family in my prayers.
Frank
SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Tamara,
My condolences, I am so sorry for your loss.
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | 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 |
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 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 for your loss. My sincere condolences to you and your family.
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Tamara,
I am so sorry for your loss and will keep you and your family in my prayers also.
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)
| | | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Dear Tamara,
I am so sorry. I wish I could find the words to bring some comfort but I know no words can help. All I can bring is my thoughts and prayers. My deepest symapthy to you and your family.
love
C
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Dear Tamara,
I am so sorry that you and your family had to endure this horrible journey. I know you are relieved that Kyle's suffering is done. I will keep you and your family in my prayers and please know that God is with you ALWAYS. This site may have a lot of sad stories but it also has a lot of wonderful, caring people who are there to listen. Please remember that you can come here any time and talk to us. Take care and God bless.
Nancy
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | I am so sorry. This is a difficult time and you and your family are in my thoughts and prayers.
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Apr 2009 Posts: 9 Member | | Member
Joined: Apr 2009 Posts: 9 | Dear Tamara -
I am so sorry about your husband. I know how hard this must be for you. Bless your heart....I'll be thinking about you..
Judy
Wife of Russ, 51, who was diagnosed with Stage IV 4cm tumor in mouth floor, jawbone, and tongue in June, 2008. Had aggressive chemo & radiation. Tried & failed to have a resection in March, 2009. Was in hospice care from March 13 until he left this earth on April 10, 2009.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Tamara,
So sorry for your loss. My deepest sympathy to you and your family. He is now at peace.
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: Dec 2007 Posts: 57 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2007 Posts: 57 | Tamara,
Words can not express how you feel at this time and there are none that can comfort you. As many struggle please find comfort that many know where you have been, where you are and where you will be with your emotions. It is a struggle but one we must bear. I hope that you and your children heal well and continue the path that you and your beloved husband created when you took each others hand in marriage. I am not much of an expert on helping with feelings as I still struggle but if you ever need to chat or vent, I am here. Take Care
Noemi
Brother diagnosed SCC August 2005, radiation and chemo- 2 rounds, total glossectomy Sept. 2007, passed away May 21, 2008
"Everyday is beautiful" he stated on a cold and foggy Chicago winter day.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Noemi, you are just so sweet, I hope you never leave the forums. That would be agreat loss to us. Take care and glad to see you posting.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Dec 2007 Posts: 57 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2007 Posts: 57 | Thanks Jim. Just trying to give Tamara the same support you all gave me at my dark hour.
Brother diagnosed SCC August 2005, radiation and chemo- 2 rounds, total glossectomy Sept. 2007, passed away May 21, 2008
"Everyday is beautiful" he stated on a cold and foggy Chicago winter day.
| | | | | Joined: Sep 2006 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2006 Posts: 49 | Tamara,
My deepest condolences. I know there is some consolation in the knowledge that he is finally free of the pain and suffering (I hold on to that daily), but it doesn't lessen your grief and there are no words to take it all away. I'm now 8 months out and it still hurts like crazy. Let your family & friends comfort you and know that we are here sending you virtual hugs!
Bonnie
_____________________________
Caregiver daughter Teri, age 43, SCC 4/06 SCC lateral tongue, partial glossectomy, mod rad neck dissection, 35 IMRT; metastatic return 4/08 to lung, bone, kidney. 10 radiation to lung, 3 Docetaxel + Carbo, lost her battle on 9/29
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