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Joined: May 2013
Posts: 24
AWW Offline OP
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Joined: May 2013
Posts: 24
Hi all,

First, my heart goes out to all of you.

My brother is 60 and he just told me that he was diagnosed stage 2 six months ago after a biopsy by an oral surgeon. He decided to take alternative medicine routes as he would allow himself to face any pain and suffering from surgery, chemo or radiation. He tried acupuncture, diet and meditation. He also told nobody but his wife. Two weeks ago, his wife called me to tell me that he had the cancer, that it it had grown significantly (from 2.5sm when diagnosed to now where he says it i son the floor of his mouth running back past his molars). He is having trouble eating and talking and is living in constant pain. He also still refuses to take any treatments. He is prepared to die but wants palliative - whihc in his mind must be non-invasive.

I have spent the past week with him (he lives across the country from me). He looks ok - he has lost a lot of weight, but he has been on a liquid diet for some time, so I dont know why. He is able to go out and do things. Starting a little exercise.

But he is in contant pain - despite percocets and MS Contin given to him by a Doctor friend of a friend. He is also remarkably depressed.

He has no insurance, and we can't get him into the system for care. Everybody wants him to start with an general practitioner who will make appropriate referrals. But without insurance (even if I cash pay), nobody wants to touch his case. So I can't even get him pain meds.

I got him in to see the head and neck folks at Dana-Farber - a 2.5 hour drive from his home. I will drive him, but he will need to keep going back as they will not even be able to runs tests during his first appointment. He thinks I am just wasting his time - "it is too big, it must have spread, i am not having surgery or chemo or radiation, so why go through this".

I respect his right to decide not to seek a cure. But from what I am told by my personal doctors, the complications and possible ways that he would eventually die of this are not necessarily treated with something as simple as pain medications.

I hate to ask this but has anyone been through something like this, where they didn't seek a cure but rather just sought palliative care? Does anyone have any advice or knowledge about how this disease might progress without treatment? Everything I read is about this involved results after major interventions.

I am so sorry if I am disturbing those of you fighting the brave fight. SO if you like, private message me.

Thank

AW


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: Jun 2007
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AW, welcome! You are NOT disturbing any of the wonderful members here with your post. OCF is for everyone that is in the fight weather its the caregiver or the patient.

I am so sorry to read about your brother! It must be so hard on you to watch him refuse to get proper care. There have been several members without insurance that have been successfully treated. But it is ultimately the patients choice.

Dying from oral cancer is not easy. The patient usually suffers for a long time which in many times hospice steps in to help. I wish your brother could change his mind and seek treatment. The only things that will eliminate oral cancer are proven medical procedures like surgery, radiation with or without chemo. Nothing else will do it as you see with what your brother has already attempted.

I wish I had some wisdom to help you both with this. Best wishes with everything!


Christine
SCC 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 smile
Joined: Oct 2012
Posts: 143
Ina Offline
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Posts: 143
Hello Aww,
I am so sorry to hear about your brother. I know how expensive and difficult it is to have cancer and no medical insurance. My mother-in-law has stage 4 oral cancer and every penny spent are paid by her children. Emotionally, physically and financially it is draining her children/inlaws. But despite the amount of dollars we have spent the cancer keeps on coming back with a vengeance.

I admire your brother for his decision. It is very noble for him to make this very painful decision. I feel that the will to fight the illness and the will to surrender are both equally noble acts.

As for us care givers we are only there to support whatever plan they decided to make.

Wishing your brother, his wife and you the best. May you find strength and courage this very painful situation.

Last edited by Ina; 05-18-2013 09:08 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: Nov 2006
Posts: 2,671
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Dear AW - I am just so sorry to hear about your brother! My son was also Stage 2 SCC, he had no job, no insurance, had recently been hospitalized for suicidal depression, recently divorced. But things really turned around for him. The hospital he was at had programs for people in dire financial straights and set up a program where we could pay very low amounts each month. He did go bankrupt but bankruptcy is survivable. There is also Social Security disability which my son did not get but I've heard of others being approved for it. There was also a drug program at the hospital he was at which forgave some of the most expensive drugs. Does your brother not have family or friends close by to lend support? How does he know "it is too big, it must have spread" unless he gets it looked at? Of course, as others have said, it is your brother's decision, but hopefully it will be an informed decision. My heart goes out to you and your brother and all those who are close to him.


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 2013
Posts: 24
AWW Offline OP
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Posts: 24
Thanks so much for your support. The hope I am hanging on to is that the hospital can give him some anti-depressants that can get him enough off the floor to make some more 'rational' decisions. By rational, I dont mean what I want, but at least him making his own decisions with a clearer head.

Thanks so much.


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: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Joined: Nov 2006
Posts: 2,671
Sounds like a good plan, AWW. Depression is temporary and there are meds to help with that.


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 2012
Posts: 3,267
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Sorry to hear. Maybe your brother needs to speak with a counselor, therapist or other type of intervention to help. He is too young to give up. I wonder if he was always against conventional medicine, going the alterative route with foods, treatments or is just recently he is seeking a snake oil to cure him, although he used conventional treatment to get tested, and trust their diagnosis, doesn't make sense. You brother may just be fearfull. I know I was. At one of our SPOHNC support group meetings, a couple attended to hear other fighters thoughts on treatments. The gentlemen had BOT cancer, in his 60's, and was just juicing, eating a healthy diet to cure himself. They were also going to attend a tumor board meeting. I think he wound up having radiation. Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Posts: 8,311
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Perhaps if they can get his depression under control, he will decide to get the only Tx that will save his life.


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: May 2013
Posts: 24
AWW Offline OP
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Joined: May 2013
Posts: 24
We are off to Dana-Farber tomorrow. I will check back in when we see what they say after tests!

And the depression is on top of my list, right after pain!



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: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Best wishes with tomorrows appointment. So glad to hear you will be going along to help.

Good luck!!!


Christine
SCC 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 smile
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