| Joined: Apr 2010 Posts: 2 Member | OP Member Joined: Apr 2010 Posts: 2 | Starting with my original condition, squamous carcinoma in my throat found in Dec. '08. 3 (two day) cisplaten treatments every 3 wks. 35 radiation treatments during and after chemo treatments. A peg tube was also inserted. All subsequent testing has shown positive results from treatments. I experienced mild nausea, some hair loss (mostly recovered)during and right after treatments and loss of appetite.
Several months after treatments ended my teeth began to rot and fall out, my hearing has been (permanately) impaired (now need haering aids)and my main issue is I am not producing saliva.With about a 40lb weight loss (206 down to 165).
As a result from lack of saliva it is difficult, almost imossible to swallow. I have tried with no success over the counter remedies (Biotene etc. Have just started taking "Pilocarpine" as prescribed by my new radiologist, who also had me have a Barium swallow test regarding my asperating. I am now in the process of getting an appointment with another Dr. to teach me how to swallow.
I am hoping against hope that maybe learning how to swallow in conjunction with the new Pilocarpine medication i mat regain some salive producing effects.
I would appreciate any advise/ suggestions from those having simular issues.
BARRY FRATELLO
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Welcome Barry:
I'm sure that other forum members will see your post and be able to help more than I. I have just the opposite, constant thick, putrid mucus in my throat/mouth that makes me sick to my stomach. Others, though, have had no saliva and had to deal with how to eat. In the search area (above, right) type in "swallowing problems" and a bunch of suggestions will show. I'm sure some of them will help you. Sure hope so. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Barry,
Each of us can respond differently to the same treatment especially when you consider the variables that can come into play, i.e., field of radiation, duration and intensity of the radiation to one particular area, type of delivery system, RO setup experience, etc. Most that receive the radiation do suffer a decline in saliva and corresponding taste but many do recover a great deal.
Our recovery from the concurrent chemo/radiation can take all of 2 years and I remember my biggest saliva/taste improvement came in month 15 post Tx so don't give up yet. I'm would guess that I have recovered say 90% of my taste and saliva but that is a very subjective conclusion as we quickly forget what the 100% level was to begin with.
I also suffered permanent hearing loss from the Cisplatin but so far I can function without hearing aids.
I also must take Synthroid for my damaged thyroid.
All in all I'm completely satisfied considering the alternative.
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.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF, Barry. Im sorry you are still experiencing some after effects. I also had teeth issues, mine were so loose I was scared they would fall out. I ended up having HBO and having them all pulled in hopes of getting dentures. Due to a recurrance, dentures havent happened yet. I did take the medicine you mentioned and it made me sweat like crazy. I couldnt stand it so only took it for a short time. My salivia is pretty much back to my normal amount.
Best of luck with the swallow test and relearning how to swallow. Hope everything works out for you. ChristineSCC 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 | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | I took Salagen (Pilocarpine) during radiation and for a few years afterwards. I took 5mg 3x's a day and had only mild perspiration for about 5 minutes approimately 30 minutes after I took it. I have a fair amount of saliva and can eat most things. If it gets extremely humid or you find you are sweating profusely, you may want to cut the doage back. Give it a try and I hope it helps you.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Oct 2007 Posts: 83 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Oct 2007 Posts: 83 | Every time I go for a cleaning the Dentist finds something new...as for the eating...someone here suggested adding a little soluble fibre to my beverage at meal time...made swallowing a lot easier. I also have a little choclate milk with a meal too...it is also thicker and easier to get down. My saliva is back about 20% or so, and I live with a water bottle in my hand so as to avoid dry mouth. Keep plugging away, it seems to get a little better with time
Stage 4b BOT and node on right of throat. did 38 trips of TOMO PEG tube,Cysplatin,Taxotere & 5fu 1st 4th and 7th week, changed to Erbitux for the last 4 weeks. 1st PETS since end of TX..CLEAR 6mos out and 2 nodes are hot. Bilateral neck dissection on 10/31/08. Clear Scan 3/31/09 & 8/02/2010
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I too have dry mouth. I drink water constantly. My periodontist suggestes a spray called Oasis and it works wonders. A lot better than the biotene spray. I do get horrible dry mouth at night and sometimes wake up with a very sore throat and gagging due to the dry mouth.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Angelia and others,
Hang in there. It was 4 months for me B4 I noticed any improvement in my dry mouth and it was 15 months post Tx B4 I noticed my last improvement in my dry mouth. Each time my saliva improved so did my taste and I GUESSTIMATE I am back to appx 90% pre TX.
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.
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | As an aid for nighttime dry mouth, in a recent online seminar Dr. Lydiatt (ENT, prof, vice chair H&N, U of Nebraska Med Ctr) suggested taking a little OLIVE OIL at night.
Fortunately I don't have much, if any, dry month so I can't say if this works, but it is a remedy I had never heard before and it would be interesting to know if it helps.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | According to my dentist, who has several Oral Cancer patients, a small amount of Olive Oil for dry mouth has helped some of his patients also.
He said that some patients have been really pleased and have had really good results.
Last edited by Karen Rose; 04-22-2010 07:24 PM. Reason: typo
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | |
Forums23 Topics18,170 Posts196,930 Members13,105 | Most Online458 Jan 16th, 2020 | | | |