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#198606 06-29-2019 10:07 AM
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Lee Ann Offline OP
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My husband has cancer of the epiglottis and bilateral neck lymph nodes. He is currently receiving radiation and chemo. My daughter sent me the Oral Cancer Foundation website and I came across this forum. I joined because I need to connect with others who have or are experiencing similar issues. Thank you for having me.

Lee Ann #198608 06-29-2019 12:52 PM
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Welcome Lee Ann,

You’ve came to the right spot if you would like answers or the right questions to ask your doctor. I’m not sure anyone I recall that has has epiglottis and lymph node cancer. As far a the lymph nodes they can start in certain levels from l to VI, but cab have skip metasteses. I had oropharyngeal cancer, and area of concern is from ll to IV, usually starting in the lower number first, and is the same on other cancer stating on a lower lymph node. Off hand, I do now know the levels for the epiglottis, but is readily available.

I’m not sure of the questions need, but that can be a good start? You can also ask any questions of your support staff at the treatment center as well.

I did have a partially paralyzed epiglottis from treatment, so I aspirated. I went through Speech and Swallow therapy that found the the problemon during a modified barium swallow test.

The people belonging to this site are often knowledgeable. Some had multiple treatments and experiences such as myself, who took me 10 years to become cancer free, which is not the norm, but I will take that too.

So if you have any questions, ask away. You can also read the treatment overview.

Good luck!

Last edited by PaulB; 06-29-2019 01:00 PM.

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






PaulB #198634 07-02-2019 06:39 PM
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Lee Ann Offline OP
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Thank you for replying, Paul. I have had a difficult time finding much information on squamous cell carcinoma of the epiglottis. The oncologists have told us its spread to bilateral lines of lymph nodes, but are not more specific. Steve is on radiation treatment finishing #30 tomorrow with 5 left to go. He’s had 2 chemos. He has had no surgery at this time. He has very little swallowing capability left and is taking formula enterally through a PEG tube at 6 - 8 oz cartons per day to maintain the weight he is at now after losing several pounds. If anyone has any experience or information on this type of cancer, I would appreciate your input. Thank you again for welcoming me.

Lee Ann

Lee Ann #198636 07-03-2019 05:17 AM
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Lee Ann: I believe it is critical that he be treated at a CCC. If I were in his shoes (and I have been) I'd get to M D Anderson in TX. This is a disease that hits only a tiny percent of humans so it is critical to be treated by very specific specialists.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
tlc356 #198643 07-05-2019 06:18 PM
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Lee Ann Offline OP
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Thank you very much! My husband is down to the last 3 radiation treatments. He’s being treated by a well known CC in Oklahoma. Who knows! Time will tell how well he has responded. Thank you

Lee Ann #198644 07-05-2019 06:29 PM
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Hello,
My husband had spread of his base of tongue cancer to the epiglottis. He had had prior radiation so went straight to surgery which was a laryngectomy.
Your husband will need to work very closely with a Speech Therapist to enable him to swallow safely. With no aspiration into the lungs. The epiglottis is what closes during swallow to stop food and liquids entering the lungs. I cant stress enough how important this will be for your husband. I'm presuming he has a PEG tube currently?
I wish you guys the best and trust the radiation will do the job.
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!
tamvonk #198652 07-07-2019 02:05 PM
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Lee Ann Offline OP
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Thank you, Tammy,

Fortunately my husband has a tube and he’s having to use it to full capacity. He is working with the Speech Therapist. He has a swallow study tomorrow. His last radiation is Wednesday. He will see the oncologist in August to see how the epiglottis looks and a PET scan in September for the lymph nodes.
Thank you for giving me some insight. I hope your husband is doing okay now!
Sincerely,
Lee Ann

Lee Ann #198653 07-08-2019 04:04 AM
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Welcome Lee Ann!

Your husband is probably felling absolutely horrible right now. The last few rads are the hardest ones to get thru. Unfortunately, radiation will continue working even after the treatments end. The first 2-3 weeks after finishing rads are the worst of the whole thing. Best thing he can do is to make certain his daily intake is at least2500 calories and 48-64 oz of water... every single day!!!. I cant stress enough the importance of his meeting (even better exceeding) the daily intake minimums. If he isnt even close talk to his doc about getting extra hydration. The extra bags of fluids will help your husband to almost instantly feel so much better. Unfortunately if you dont know to ask about this it doesnt usually happen.

Another important thing to be aware of is after the final radiation treatment on Wed, it may feel like you and your husband are abandoned, just sent home. All your husbands medical professionals are still available 24/7 so if theres a problem dont hesitate to call his medical team.

Theres many here who have been where your husband currently is, they can help get you both thru some challenging times. As a caregiver, you have a tough job!!! Take good care of yourself too, if possible make some time just for you to get away and catch your breath.

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

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