#84447 11-18-2008 09:17 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hello everyone, It has been a long time since I was here to post. I miss my old friends and hope you are all doing better than anyone thought possible!
I have something to offer as a saliva substitute when eating. It is simple, low cost and I find it works better than anything else I have tried and it has a side effect that most will find acceptable if not beneficial.
Get a jar of non-flavored "bulk forming dietary fiber supplement" known as Psyllium Seed Husk Fiber. (Metamucil) There are generic suppliers too. Mix a glass folowing the regular suggested dose or at a rate of 1/2 the usual powder. Leave it stand for several minutes before you start eating your meal (it will thicken). Hopefully you will find that the texture and slippery feel of the mix will help with swallowing and will not alter the taste of your meal. I personally use slightly warm water in the mix. You can also carry the powder in a small zip lock with you for dining out.
While this is a safe over the counter product you should talk with your doctor about this to be sure using the product in this way will not be a problem.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | Metamucil. You can buy it in jars, capsules or little single use packets that are real easy to take out to dinner at any drug store. Great idea.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Mark,
It's so great to have you visit us again and with such a great suggestion. I can't believe that it's been over 3.5 years since we first spoke on the phone. Your encouragement meant so much to me. I never would have thought that I would surpass you in the number of posts. I hope that you take this as a challenge and that you can find the time to visit more often. You have always been one of the most knowledgable contributors to this forum.
I hope that you and your family are doing well.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Oct 2007 Posts: 83 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Oct 2007 Posts: 83 | Tried the warm product last night with dinner. All I can say is wow...worked like a charm. Thanks for the great idea.
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: Sep 2008 Posts: 10 Member | Member Joined: Sep 2008 Posts: 10 | Hi, I like your idea, but I have a question about how/when to drink it. Do you consume it as a drink while you are eating or do you drink all of it before you start eating? I have trouble eating because my tongue doesn't work correctly and all the food tries to stick to my tongue. Thanks, Becky
9/18/08 Diagnosed SCC/Stage 2 Left floor of mouth and tongue. 9/26 Laser Surgery 10/9 First appt. at CTCA in Chicago 11/24 RO Tomo TX (5x wk)for 7 wks 11/26 Port Insertion w/access 12/2 -Chemo/Cisplatin (1X wk) 123 min. for 6 wks 12/15 - Peg Tube Insertion
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | That is fun huh Becky, I have that problem with everything I swallow. Some of the meds have quite the taste when they stick and dissolve. Can't take metamucil it clumps where I had Nissen Fundiplication on my Esophagus in 1995.
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: Sep 2008 Posts: 10 Member | Member Joined: Sep 2008 Posts: 10 | Hi EZJim, No, It is not fun. Either my mouth is super dry or my tongue is burning with extra thick mucous. I have just had 3 days of radiation so far & I start chemo next week. The holidays seem bleak, but if I am cured from this nasty disease it is worth it! The cancer center here is super, I am happy with the decision I made. Take care, Love, Becky
9/18/08 Diagnosed SCC/Stage 2 Left floor of mouth and tongue. 9/26 Laser Surgery 10/9 First appt. at CTCA in Chicago 11/24 RO Tomo TX (5x wk)for 7 wks 11/26 Port Insertion w/access 12/2 -Chemo/Cisplatin (1X wk) 123 min. for 6 wks 12/15 - Peg Tube Insertion
| | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hi Becky, I use the mix as a beverage during meals. I take small sips of the mix while chewing and swallowing. It is slippery and has little taste of it's own.
GaryG, I am glad it helped for you!
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Thank you Mark for this wonderful idea. I can hardly wait to try it. I know how all of us struggle with little or no saliva.
I just ordered on the web. 5 tubs of Oral Balance Gel moisturizer. I was tired of running out every week. I use this to help take my pills. I coat the pill and then some in mouth and then drink with water. It works.!!
I just had dialation done in Oct. So that helps too.
Thanks again. Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | Joined: Jan 2009 Posts: 97 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2009 Posts: 97 | Besides the full line of Biotene products, I mix a can of Instant breakfast, 1 bottle of ovaltine and a bit of sugar. Mixing about 3/4 of a glass of that powder with whole milk does the trick for me, it provides a nice way to keep my weight up when I can't or won't deal with solid food. My dentist also has me rinsing with baking soda solution to shift my mouth PH back after eating. [{:-)
ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
| | |
Forums23 Topics18,250 Posts197,142 Members13,328 | Most Online1,788 Jan 23rd, 2025 | | | |