| | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2009 Posts: 147 | I am 19+ months post TX and realized that I finally have enough saliva to spit! I just had to share as I know that my OCF family can appreciate that this is definitely a milestone. I remember a while back when I was able to lick one envelope I thought that was about a good as it would get. But now there is even more saliva. Not 100% yet....but it is getting there. So for all of you behind me in treatment - don't loose hope.
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Hurray for Carmen! She can spit!! So happy for your progress, Carmen! (I am picturing you going around spitting on everything just for the thrill of it!) I can remember when my son did not have enough saliva to lick the envelopes so he could pay bills. I got him some self-stick envelopes (couldn't find those spongey tube things that hold water for moistening envelopes). Keep up the good progress!
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.)
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Carmen: fantastic!
d2
(I'm about on your treatment timetable, hard to estimate the return of saliva but it's at least 50%)
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Good news Carmen. Are you taking a med to stimulate the salivary glands? I know that ther are a couple out there.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Aug 2008 Posts: 48 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2008 Posts: 48 | been 2and1/2 years since oral cancer and I'm very dry, so dry i half to carry water every where I go even to bed I wake up 2 or 3 times a night with my mouth so dry that it aticks together I have try the gum and nothing work like water
Last edited by rubyann; 01-02-2011 05:34 PM.
cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
| | | | | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | Hi Carmen, great news. It's definitely something to get excited about. Gordon is 8 months out of treatment and said he had the first squirt of something yesterday that felt like real saliva (usually anything that is there feels kind of thick), so now he has some hope. Saliva is one of those things we all take for granted until it's not there!
Anne
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Great news about Gordon, Anne.
d2
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2009 Posts: 147 | To answer the question of am I taking anything - yes, 5 mg Pilocarpine 3x/day.
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | This is good news Carmen. I can't spit but sure can drool. Even this makes me happy altho it looks terrible to others. Can't even lick an envelope but rub them across my bottom lip where the drool hangs out.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | You all are killing me here... Seriously. I am back at work waiting to get an appointment for an MRI (keep fingers and toes crossed for me) for tomorrow. And I am worried and nervous and falling apart and you are all making me laugh... I agree saliva is something we all take for granted. I figured this was something I had to look forward to ( no saliva ) amongst many other things. I am glad for you all... your recoveries and improvements, and to those still facing the ups and downs like me, my thoughts and prayers are with you.
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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