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gmcraft Offline OP
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After having been told the following at different doctor visits -- the throat is still quite swollen from the treatment (7 weeks post treatment), the swallowing muscles are intact (12 weeks post Tx), the epiglottis is still swollen and is the cause of aspiration (15 weeks post Tx)-- my husband finally got his swallowing assessment today. I sat in the control room together with the SLP and I was shown how the liquid was pooling at the upper esophagus and not going anywhere. The epiglottis still didn't close perfectly but that was not the major cause of the swallowing difficulties.

Tomorrow we are scheduled to see the RO and I will be asking questions about treatment options with regards to the swallowing. It has been a frustrating five and a half months trying to push the doctors to recommend a swallowing assessment and to actually get in to see the SLP (John got in today instead of end of July because I argued hard for a place on the SLP's cancellation list).

There are days when I feel I am running out of steam. Coming on to the forum has been such a great help to me because it is a constant reminder that patients and caregivers must advocate for themselves.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Persistence. That seems to be what it takes. Glad you guys got in early. John is fortunate to have you by his side Gloria.

Ed


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
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So glad you are persistent with being an advocate for your husband. He is very lucky to have you in his corner. Good luck tomorrow! Please let us know how you make out.


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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Great job pushing and getting what you needed!!! Hopefully they understand now why you were so frustrated!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Good luck tomorrow with the RO follow-up in regards to treatment.


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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WE all have to be that squeaky wheel.


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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In Canada we have a great medical system - BUT - you have to advocate for yourself. It is 100 % true - the squeaky wheel gets the oil.

;o) good luck. Hopefully they will get his swallowing sorted out!


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
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gmcraft Offline OP
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I'm afraid I have to take a minute to mourn the loss of a piece of the life we used to lead.

We saw the RO yesterday and initially he thought that's a possibility that an esophagus dilation might help. (John has extensive scarring from the radiation in his neck and I would think the problem he is now facing may be due to scarring or fibrosis.) But the surgical oncologist didn't think he wanted to do the dilation as in his opinion, it is a procedure that's only temporary and, hence, not a real solution. We now have a referral to a gastroenterologist and it is up to him to decide what can be done.

Today John and I had a discussion about the possibility of his being tube-dependent for the rest of his life. He said he didn't want to whine, I said he was entitled to mourn the loss of the enjoyment of food. We have decided that we will have to educate our friends with regards to how socialising with us can no longer be food-centred. John's cancer was vicious -- there were no clear margins and it was the kind that grew downwards and inwards -- that's why the doctors threw the heavy artillery at him. It was information I kept to myself all through his treatment (he was too overwhelmed to have heard and understood at the time) and only told him today. But it really helped him understand why he was given so much radiation.

Having said all that, we are still not giving up. We will go see the gastroenterologist and take it from there. But it is good to have that clear understanding between us.

I would also like to know if anyone on this forum has had multiple esophageal dilations that have stayed effective after a protracted period of time. It is okay to pm me if that is what you prefer.



Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Gloria,

Good luck and let's hope for the best outcome. Re his radiation, 70 gys is common, not the exception, for his Dx. That's also true for the chemo he received. That's the same amount of rad I and many many others had. Where the radiation is mapped or directed is very important in how one's organs respond which is one reason why some experience life altering side effects and others have none.


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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gmcraft Offline OP
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[quote=davidcpa]

Where the radiation is mapped or directed is very important in how one's organs respond which is one reason why some experience life altering side effects and others have none. [/quote]

Thanks, davidcpa, for your kind words. My reasoning is because the cancer didn't have clear margins, the doctors couldn't protect some of the areas which are vital in John's maintaining his swallowing functions. They just had to fry everything. Yesterday the doctor said that John was one of those who were sensitive to the radiation and the sensitivity caused much scarring in the areas treated. The positive side of this is the Tx probably worked better with the cancer, the flip side is that the scarring is causing the swallowing difficulties. I guess one has to take the good with the bad.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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