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vandypaul #151676 07-05-2012 11:41 PM
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She sounds like a fighter! I'm in your corner! You're doing a great job, but take some time to take care of yourself, as well. Perhaps some friends or family can give you some much-needed respite?

Take care and continued good luck to you both,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
vandypaul #151680 07-06-2012 04:21 AM
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Sounds like she's doing well... Hugs and keep on keeping on.. smile


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
vandypaul #152044 07-14-2012 09:06 AM
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End of 3rd week. Dr put her on plan of 5_6 ensures a day and whatever else she will eat. Also topical pain for the tongue sore and a fentanyl patch. Wed and Thur she was a zombie and slept continuously. Took her off patch Fri and seems better. Pain minimal and hydocodone works. Doing good otherwise except the eating part--nothing tastes good. What did you guys do to try and overcome that mental block? Four more to go. Thanks


Caregiver to wife with stage 4 oral cancer. Cheek and 2 lymph nodes.Diagnosed April 2012. At age 80 decided against major surgery.Currently doing 9 chemos and then 7 weeks of radiation/chemo.
vandypaul #152054 07-14-2012 02:11 PM
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Awesome and good luck! She'll get through it,


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
vandypaul #153119 08-11-2012 09:51 AM
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Well our chemo and radiation ended this week. She made it mbut now feels worse than ever. Mucous is killing her.Had done so well with the ensure and water and now not doing either very well. Is on a fentenyl patch(12.5) which seems to keep her in a confused state. Magic mouth wash for the sores. Only lost 6_7 lbs over the 13 weeks. Hate to have her backslide after doing so well. Any mucous hints?


Caregiver to wife with stage 4 oral cancer. Cheek and 2 lymph nodes.Diagnosed April 2012. At age 80 decided against major surgery.Currently doing 9 chemos and then 7 weeks of radiation/chemo.
vandypaul #153122 08-11-2012 12:17 PM
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Wow! Your wife really did do well with only losing 6-7 lbs over the 13 weeks. Usually after radiation ends, the next couple or three weeks are the very worst because the rad keep working, but things get better after that and they should for your wife, too! Magic Mouthwash helped my son a lot and later when the MM no longer worked as well he went to an OC mouthwash at Walgreens. Keep updating us and let us know how you both are doing.


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.)



vandypaul #153144 08-12-2012 07:23 AM
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Almost everyone getting concurrent chemo/rad ends up having their worse time the few weeks POST treatment. That's very very normal. Doesn't mean it's pleasant but don't think something is unusual. The thick mucous is the last stage before she will encounter what we call "dry mouth". It can last for several weeks. Remember each of us can be different. Some use soda water, some have it so bad they need to rent a suction machine. I walked around with a styrofoam cup in my pocket and spit in it all the time. At night I would wake up w/ a mouth full and barely would make it to the b/r sink. Sometimes it triggered a gag reflex and I would vomit. This will pass but then she needs to be prepared for the dry mouth.


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.
vandypaul #153150 08-12-2012 08:49 AM
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Seltzer water worked for me to cut the mucous the first time.
I found that the plain generic Safeway brand in the small cans worked best. The big bottles lost their fizz after opening and without the swishing bubbles did not cut thru the mucous. Although they are all carbonated water, I had issues with club soda and tonic water which burned my sores. Seltzer contains no added ingredients or flavorings, club soda contains additives such as table salt, sodium bicarbonate, or potassium bicarbonate and tonic water has quinine and sugar.
After the recurrence, the mucous was so bad, the hospital arranged a rental suction machine for home use.
Can't hurt to buy a six pack of seltzer, you can always drink it if she does not like it
Charm

Last edited by Charm2017; 08-12-2012 08:50 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
vandypaul #153228 08-14-2012 12:12 AM
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Keith
In LONDON I was given a Nebulizer on the NHS it often is used for athsma it vapourises A sodium chloride amputet, it improved my mucus 300% it is better than mouth wash and pain killers, good luck.I stick to water and take food through PEG any food in mouth just coats tongue and turns rancid.I will try the seltzer tip.
I too have a couple of weeks of radiation left and I am focusing on the future all this being worth it.
Touch wood, fingers crossed, and god bless anyone having this treatment.


21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
CubanKeith #155099 09-26-2012 11:48 AM
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Well after all the chemo and radiation which ended Aug 9 her tumor came back with a vengeance. Today we were told basically inoperable with 3_6 months.Age plus Crohns to tough to overcome.Waiting now for more info from Oncologist for any cllinical trials that might be available.



Caregiver to wife with stage 4 oral cancer. Cheek and 2 lymph nodes.Diagnosed April 2012. At age 80 decided against major surgery.Currently doing 9 chemos and then 7 weeks of radiation/chemo.
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