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#193885 - 02/16/17 01:29 AM Re: I am upset !!! [Re: Murphy]  
Joined: Jul 2009
Posts: 1,370
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,370
Los Angeles
Murphy, adding my good thoughts and vibes. I'm glad to hear you're getting checked out at a CCC. And you sound like a real fighter. Please keep us informed - we're all in your corner.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 8 years all clear in 6/17
#193911 - 02/19/17 05:34 AM Re: I am upset !!! [Re: Murphy]  
Joined: Mar 2011
Posts: 1,005
tamvonk Offline
"OCF Kiwi Down Under"
tamvonk  Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,005
New Zealand
Hello Murphy, I am so sorry to read that you have a recurrence.
I just want to reach out to you and wish you well.
Please let us know your treatment decision.
Take care , 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!
#193934 - 02/28/17 02:38 AM Re: I am upset !!! [Re: Murphy]  
Joined: Jul 2016
Posts: 18
Murphy Offline
Member
Murphy  Offline
Member

Joined: Jul 2016
Posts: 18
Louisville, Kentucky
Dear Oral Cancer Support Members,
I went to my ENT last week and he said that I have small cell cancer of the epiglottis and the left false vocal chords. He will not operate because it will be a a very big life changing experience as to having a stoma, removing most of my voice box and probably never eating regular again. He had long talk with my radiologist and they have concluded that 35 rad treatments and no chemo to this area will take care of it. I will start treatments March 6th! Funny, I have appointment with the denture Doctor that morning before the first treatment (I don't have dentures yet) I wonder what he will say about it. I also had a lung scan with dye done 5 days ago and have not received the results yet, I will go and get a copy of the disc and the report day after tomorrow morning. 8 months ago I had lung scan and they said I had a small spot on 1 of my lungs and I should keep a eye on it. I don't want to start throat radiation before I know the results of lung scan. Am I not correct in my thinking.
By the way, the ENT and Radiologist both said that this cancer has not mastecized from my tongue to my throat but that I am just unfortunate that have been diagnosed with cancer 2 times within 1 year. 40 years of smoking and 27 years of heavy drinking have finally taken their toll !
Thank you all for your support!
Murphy...


5/31/16 Partial Glossectomy
Right neck dissection
22 teeth extracted
Six weeks of radiation Ended 8/19/16
2/8/17 Biopsy of epiglottis-cancerous
35 radiation treatments to the throat, Ended 3/21/17
#193936 - 02/28/17 03:48 AM Re: I am upset !!! [Re: Murphy]  
Joined: Jun 2007
Posts: 9,676
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,676
PA
Im very sorry you are going thru this so soon after completing rads only 6 months ago. We will help you get thru this! You can lean on us as much as you need to.

Were you able to go for a second opinion at the other facility? If not, please consider getting a second opinion and treatment plan before starting treatments. If you can get to a CCC where they deal with complicated cases more frequently it would be a very good choice.

Wishing you all the very best 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
#193991 - 03/05/17 09:35 PM Re: I am upset !!! [Re: Murphy]  
Joined: Jul 2016
Posts: 82
Jo in NC Offline
Supporting Member (50+ posts)
Jo in NC  Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 82
North Carolina
Hi Murphy, thinking of you as you begin your treatment on March 6th. Please check in with us and let us know how you are doing !


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side of neck.
March 2015 Scan and biopsy confirmation
March 2015 Port and G tube placement and 10 teeth removed.
July 2015 completed 5 chemo and 35 radiations
Sept 2015 Cat Scan showed all clear !
July 2016 G tube and port still in place
I have had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries in the past 3 months with over 100 stones still there !

#193999 - 03/08/17 02:36 AM Re: I am upset !!! [Re: Murphy]  
Joined: Jul 2016
Posts: 18
Murphy Offline
Member
Murphy  Offline
Member

Joined: Jul 2016
Posts: 18
Louisville, Kentucky
Dear Support Members,
Today (Tuesday) I had my 2nd rad treatment on my throat area, no horsness, difficulty swallowing or pain as of yet. What I have noticed is that what little saliva that I had after the last rad treatments is already being compromised. Now I have to constantly sip water to keep my mouth slightly moist even during the day when before it wasn't so bad. I am asking if anybody has had experience with the drugs Pilocarpine (Salagen) or Cevimeline (Evovac) that stimulate the nerves that control the saliva glands. I have asked my Doctor before and he said he really didn't like it because it just helped in increasing the thick saliva in which the rad treatments really effects the thin saliva glands. The side effects didn't look to promising either! Sucking on hard candy is not so bad but makes my lips sticky from the sugar or other ingredients. Sort of picky aren't I!


5/31/16 Partial Glossectomy
Right neck dissection
22 teeth extracted
Six weeks of radiation Ended 8/19/16
2/8/17 Biopsy of epiglottis-cancerous
35 radiation treatments to the throat, Ended 3/21/17
#194000 - 03/08/17 05:06 AM Re: I am upset !!! [Re: Murphy]  
Joined: Dec 2016
Posts: 46
EMTK3 Offline
Contributing Member (25+ posts)
EMTK3  Offline
Contributing Member (25+ posts)

Joined: Dec 2016
Posts: 46
New Jersey
There's nothing picky about needing saliva. It can be very frustrating after a while to always be so dang dry!! I keep a tube of Oral 7 gel in the car, office and home. When I get bad I just squirt a dab in my mouth. This is the only Oral7 product I can tolerate. The tooth paste and mouth wash light me up like a firecracker. They are not supposed to burn but my mouth is still super sensitive. The gel is very soothing and gives some temporary relief.

I read about some of the prescriptions available for dry mouth but they had some draw backs and side effects that outweighed their benefit for me. If you are getting real bad, that may not be the case. You may want to bring it up to your doctor again based on your current symptoms.

Good luck!

Ed


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
#194002 - 03/08/17 02:25 PM Re: I am upset !!! [Re: Murphy]  
Joined: Oct 2012
Posts: 854
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 854
Toronto, Canada
My husband used to carry a bottle of water around with him and a "spit cup" in his pocket. I know it's a real drag but it worked better for him than any lozenge or cream. Because his mouth was so dry, he used to choke on Xylitol lozenges.


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.
#194013 - 03/10/17 11:59 PM Re: I am upset !!! [Re: Murphy]  
Joined: Jul 2016
Posts: 18
Murphy Offline
Member
Murphy  Offline
Member

Joined: Jul 2016
Posts: 18
Louisville, Kentucky
Dear Support Members,
Thank you for the suggestions about dry mouth, I ordered Oral 7 as soon as EMTK3 said something about it and got it today, it seems to be working pretty good along with the water but tonight will be the test to see how it works during the night when I get the driest. 5 treatments down 30 to go, no pain yet but sensitivity to hot food when swallowing, trying to eat as much as possible while I can! If it is good news I asked the radiologist on the percentage chance of radiation taking care of this cancer of the epiglottis and false vocal chords and he said 80 percent, I think those are fairly good odds. Just have to take my scans when these treatments are over and wait.
Murphy...


5/31/16 Partial Glossectomy
Right neck dissection
22 teeth extracted
Six weeks of radiation Ended 8/19/16
2/8/17 Biopsy of epiglottis-cancerous
35 radiation treatments to the throat, Ended 3/21/17
#194014 - 03/11/17 04:30 AM Re: I am upset !!! [Re: Murphy]  
Joined: Dec 2016
Posts: 46
EMTK3 Offline
Contributing Member (25+ posts)
EMTK3  Offline
Contributing Member (25+ posts)

Joined: Dec 2016
Posts: 46
New Jersey
Glad the Oral 7 gel is working for you Murphy! You might want to try another product for the night time. I use XyliMelts by OraCoat. They are all natural tabs that you stick on your gums before you go to sleep. One tab lasts me half the night. Usually put a second one in during one of the bathroom trips. I use the mint free ones and I have no problem with burning.

I have been getting them through Amazon (using OCF's Amazon tab) but I see they are now available at Rite-Aid.

Good luck with your treatments. You have a great attitude. Keep kicking it!

Ed


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
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