| | Joined: May 2013 Posts: 24 Member | OP  Member
Joined: May 2013 Posts: 24 | Is there a place on this forum to discuss end of life issues? My brother is out of options and his tumor is growing. I don't want to go into details in this forum of hope, but I do have specific questions about end-of-life for oral cancer.
thanks,
Sadly
a
AWW, Brother of Dave, 60
Pre-canc 10 years ago
Biopsy Dentist 10/12
Stage 2 SCC 2.5cm
no action
5/13 to DanaFarber
Examined by Surgeon, MO, RO
PET, CAT
Stage T4, 4.5cm, no METs, or lymph nds
Started treatment 6/17 - RT 5x/wk, Csptn 1/wk, for 7 wks - will end 8/5
PEG since his first week.
Treatment ended 8/5
Scans scheduled for 10/30, with FU appointment 11/6
11/1 - Treatments didn;t work. Tumor continues to grow.
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | So sorry to read this.
I'm hoping you have had your Brother get a second opinion.
Is there not an option of salvage surgery? I know that this can be extreme but it is worth it.
If this really is terminal, I would suggest you contact your local hospice for assistance . They will help to ensure pain relief is adequate and guide you all through the process while providing practical help with caring for him.
Thinking of you and your whole family,
Tammy.
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi A:
Sorry to hear the news. I thought of several possible forums to post this in, but I think it better to let David or Christine suggest it.
Stay strong. We're thinking of you and your brother.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | I'm sorry you are going through this. Definitely look Into hospice or at home nursing care. And there are a few places - recurrence for one that you can post here. 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 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Dear A, I can't help with your query beyond suggesting the Recurrence list, but I'll certainly be thinking of you and your family. Linda
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | There was this thread earlier this year, which includes links to posts by two OCFers who have been through this. Note that they have moved on with their lives and no longer post regularly, if at all, but the information may be helpful. And as others here have done, the thread includes recommendations to consult with hospice personnel.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | 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 | Feel free to ask any end of life questions.
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: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | There are a few members who have been thru this with their loved ones. Im not sure how frequently they are on the forum.
We can try to help you but hospice would be the best ones to help you as they have been specially trained in everything relating to end of life. At OCF, we will always attempt to help everyone. But this subject might be better off with the experts. We do have one section where its devoted to members with deceased OC patients. Its way down on the bottom of the main forum page.
Im very sorry you are in this situation. Im wishing you all the very best with everything. We are here to listen and support you as much as we can.
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: Jun 2013 Posts: 18 "OCF Down Under, Kiwi" Member | | "OCF Down Under, Kiwi" Member
Joined: Jun 2013 Posts: 18 | [quote=davidcpa]Feel free to ask any end of life questions. [/quote]
OK I am told I have used up my lifetime quota of Radiotherapy and Surgery and as I now have a (10 years on)recurrence of growths in my throat as well as Fistulas - we are trying a course of Carboplatin (arm drip) every 3 weeks (3x so far)- first we tried another with tablets via PEG but no result/changes. I have a PEG and now a Mi-key as I cannot swallow food or drink due to the tumor in my throat and of course I have a tracheotomy to breath. I am due for a scan latter this week to see if there is a visible change to the mass in my throat. I suspect there is not - although stopping any further growth would be success :-) Now my question is if the growths continue how do I die ? I have a good heart etc and breath through my neck and eat via PEG so I by pass the mass in my throat - so does it keep growing until it hemorrhages and I die in a sudden explosion of blood loss ? I have unlimited morphine etc available so pain is not an issue. I have already been coerced into signing a release absolving the medical team from failing to resuscitate me in the event of a hemorrhage and assumed that was because they cannot. Things came to a head this past June but here I am 5 months on slowly getting thinner day by day LOL
Edited by ChristineB (11/19/13 02:47 PM)
Osteosarcoma radiotherapy right forequarter amputation 1961
Carcinoma of Right Larynx with subglottic extension
Total laryngectomy with right radical neck dissection 2000
Tracheostomy
Radiotherapy June-July 2001
Aggressive recurrence of the same May 2013
Neck Fistulas June 2013
P.E.G July 2013
Mi-key Oct 2013
Currently Chemo was : XELODA (Capecitabine) Now Carboplatin and now Gemcitabine !
| | | | | 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 | Mike,
Very sorry for your cancer experince and let's pray your docs can acheive some positive results with this current course of action. Please understand that none of us are doctors and the question you raise in the post above really is best answered by your docs. With the time that I have spent on this site I (and others) have read numerous posts from caregivers to lovedones that passed from oral cancer so I can only relate to you what was passed on but none of these posts were medically technical. I can say that Hospice was involved in most if not all cases and not reading that you have a caregiver I see that as an option depending upon what happens with your treatment.
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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