| | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) |  "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Praying they come up with something, hugs
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Oct 2012 Posts: 143 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Oct 2012 Posts: 143 | Hello and Good morning to all. After last treatments in June to current 2013 (35 radiation and 7 + 2 + 4 Erbitux) and no improvement on the site of the lesion and intrusion tumor inside her oral cavity, is it time to say enough? For the first time I heard my husband tell me that it might be time to let her enjoy the last few months of her life. However, there is a part in everybody's heart that won't give up. Joyce per my father-in-law is always inside her room and so weak. Will the surgery on her face or continuous Erbitux chemo make a difference now??
Joyce March 1940 to January 2014
A wife, a mother, grandmother and great grandmother.
She fought oral cancer from late 2009 to Early 2014.
2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | No... Surgery may debulk the tumor but as extensive as it is it it would severely hinder her quality of life. Radiated skin does not heal well - leaving her open to infection since the wound may have trouble healing, then with what sounds like a lot of cancer in situ, chances are they will not get it all and what's left will also prevent healing. So they will cut her, stitch her up but likely she will not heal this will leave her with an open would or a poorly healing mess. Also Erbitux is NOT curative - god bless her as she seems a fighter, but paying for more treatments is more cruel than not. I say this because its a knee jerk reaction to want to hold onto someone we love - and it's the hardest thing to do to let them go, but out of love sometimes this is what we should do because forcing them to go on causes more suffering. I watched my dad who was a vital man die a horrible death this year. He did not deserve it, and as much as I wanted to have him with me trying to force them to do anything beyond normal treatment (life saving measures) would have confined him to a life he didn't want to live. One of emotional and physical pain. It was the hardest thing to do to let him go, but I was there with him every step of the way and he knew I loved him. If he had indicated for one second that he wanted a feeding tube I would have had one ordered for him, but that would have meant he'd live out the rest of his life In a nursing home in a bed for 23 hours a day and in pain. He didn't want that and I couldn't do it to him. Hugs this is heart breaking for your hubby's family I am sure, but sometimes out of love we have to say no.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Feb 2005 Posts: 118 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2005 Posts: 118 Likes: 1 | Ina, I am so sorry for Joyce and your family. This is so shattering for you all. Can Joyce tell you what she wants to do?
Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
| | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 188 Likes: 4 | I too am sorry to hear the news. I can really sense the emotional debate in this situation and it is very uncomfortable. Being one who fights to the end it would crush me to give up because of that slim possibility the outcome could change. But we are not Joyce and not in her immediate family. For guidance Joyce should be the one to decide based on quality of life. If she is not capable then the family has to make the decision.Is enough enough and what is the potentialquality of life? My heart goes out to you.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
| | | | | Joined: Oct 2012 Posts: 143 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Oct 2012 Posts: 143 | There are 2 important events coming up as far as medical decisions:
1) This week all her doctors will have a conference to discuss the results of the radiation and chemotherapy. They will also discuss other treatment options.
2) End of September she is scheduled for blood work, ct-scan and/or MRI to see the extent of her cancer.
Hopefully they will know what direction to take by then.
Your thoughts and prayers are highly appreciated. God bless
Last edited by Ina; 08-26-2013 11:37 AM.
Joyce March 1940 to January 2014
A wife, a mother, grandmother and great grandmother.
She fought oral cancer from late 2009 to Early 2014.
2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I almost want to say scan her now for distant mets. - her face and neck will not give a definitive answer because she's still so close to the end of treatment there will likely be a false positive, but mets in other places will likely show up and will tell you if you should pursue any further treatment.  hugs and prayers for you all.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | 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.
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