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Joined: Oct 2012
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missyp Offline OP
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well today we found out that chemo is no longer recommended and surgery is no longer possible and we received an offer to ask hospice to help us. My hubby has had 7 surgeries and 5 rounds of chemo. He still is up and about, tires easily etc. So What now?


Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Missy Im so very sorry to read about the latest update. If at all possible are you able to try to get him into a CCC for at the very least a second opinion? If not, find the best facility you can for another opinion and also check clinical trials.

best wishes!


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: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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missyp, I am so sorry to hear the news about your husband. I concur with Christine. The question is whether or not your husband wants to continue treatment of some kind. That's a tough question to have to answer. My philosophy is fight until there is no fight left. It has worked up till now for me.

Is there anyone you can see to help make the decision to continue pursuing something? Often, cancer centers have Psychiatric Oncologists that deal with issues like you are facing.

Good luck and best wishes.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Sorry to hear also, missyp. I agree with what Christine and Uptown said. Are you near Moffitt in Tampa or able to travel for a 2nd opinion? Some hospitals like John Hopkins do them by telephone conference, but all info needs to be sent to them, and cost around $800 or more.

All the best, and 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






Joined: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Many CCCs will have places you can stay for free or very low cost (like $15 a night). There are even airlines which will fly the patient for free for long distance treatments.

That is of course if he does want to continue. Of course everyones situation is different. I was faced with being diagnosed with my third round at Stage IV. I almost gave up until the members of this forum helped me to understand that I couldnt just give up and quit unless I actually tried first. If they hadnt helped me to see the full picture I wouldnt be here right now. It breaks my heart when I read of others facing similar situations. I hope your husbands outcome will turn out with the very best results possible.



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: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Here is a link to find an American Cancer Society Hope Lodge in most state, which are free of charge, with amenities. I stayed in NYC for six weeks, some were there many months for treatment, and is a great place. Many were from all over the world, country, locally if travel would be more than an hour.

http://www.cancer.org/treatment/supportprogramsservices/hopelodge/


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






Joined: Oct 2012
Posts: 41
missyp Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Oct 2012
Posts: 41
We went to Mofitt mid stream through his past recurrences and they didn't really offer us anything new unfortunately. He was allergic to Erbitux so that was ruled out. he said in a weird way he's relieved to not have to under go any more treatments. He's had 7 surgeries and 5 rounds of chemo (3 induction). Not sure what to think or do.


Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
Joined: Nov 2013
Posts: 29
Contributing Member (25+ posts)
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Joined: Nov 2013
Posts: 29
Missyp,

My husband said to me 'I'm making this decision' (about his treatment), and changed his mind twice.

I feel for you. I suggest you find the best alternatives mentioned here, present them to your husband, and let him decide. Be there for him either way and let him feel your support.

Praying for you both,



Patty / husband Dx with Stage 1 SCC
November '12, BOT ulcer
June '13, first biopsy-negative.
October '13, second biopsy-positive
November '13, second opinion at CCC, T1
December '13, partial glossectomy.
September '14, biopsy on lymph nodes, 1 tested positive.
October '14, right side neck dissection. 14 nods out, with only one affected.
November '14, T1N1M0 radiation in the recommended by oncologist
December '14, radiation treatment


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