#90965 03-02-2009 07:35 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I woke up yesterday with a sore tongue (tip) and it was sensitive to eating or drinking. This am I still had the same feeling so I looked at it and I see a 1/4 inch split right down the center close to the tip. Now I googled "split in tongue" and I was directed to some medieval ritual which doesn't apply and also to Dry mouth which is obvious but since I've had DM for 2 years now and it's better now than before I'm curious if anyone else has encountered this. I know some of you wish you had my problem and I feel for you but if anyone has had this before I'd like to hear what you were told.
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | My basic understanding David is that this could be caused by a)thrush b)vitamin deficiency c)lack of fresh friut and veg,and of course the obvious one.....telling fibs!! whatever it must be very uncomfortablle.Hope it gets better soon.
love liz
Last edited by Cookey; 03-02-2009 10:58 AM.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | I have not heard of it before, and it sounds painful. Have you eaten pineapple or other fibrous material which could actually cut the tongue? Give it a couple of days and if it isn't better I'd be getting it checked. Keep us posted.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | David,
Why not give the dentist a call today and have him take a look at it?? Please.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | David - I certainly wouldn't want my CPA to respond to any IRS questions with a forked tongue - leave that to the politicians who also so adept at speaking from both sides of the mouth at once. Please post that you have made an appointment to check it out ASAP.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | David -- I had that early on after treatment, and was told it was due to thrush, and exacerbated by dry mouth and the radiation.
Here is a tip -- do not Google "split tongue" -- this is apparently becoming something of a fad among the piercing crowd. Disturbing . . .
Let us know what you find out!
Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Jeff, No I Googled "split in tongue" not split tongue.
Malka, Cute!!
Liz and Patty, I have a client who is my dentist so I saw him at 2:30 and we spent 15 mins talking about my wife who he also treats. I finally had to say "what about meeeee". Anyway he looked in my mouth and said he thinks (comforting) that I have a yeast infection and told me to eat the cultured yogurt stuff and gave me a prescription for Diflucan. I then said "what about my split tongue?" and he said probably due to the swelling of my tongue and I said "what swelling?" and he said the swelling caused by the infection. I gave up and started talking about my wife again.
I already ate some strawberry yogurt (yum) and will P/U my prescription after 6 tonight. I hope my tongue grows back together at least for my clients' sake.
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: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | David, my tongue has been split since right after the 3rd piece of mt tongue was taken in Jan of 2007 and those implants didn't help it either. Thrush is what I was told maybe and to brush until it hurts, which I do. I hope yours doesn't go on for this length of time old Buddy. It gets ridiculous with the pain it brings with it. My tongue muscle is very visible and the split is directly in front of it.
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: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | David,
Thank you for having your tongue looked at. When I first noticed my cancer it was a split place on the underside of my tongue. I only wish that I had gone that day to have it looked at instead of almost 3 months later.
I hope that the yogurt and antibiotics help it heal and that it grows back together.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | How deep is the split, David? I mentioned this to Dan and he says he gets this on and off...I had no idea. But, he said it was more like a cut than a split. So not really a forked tongue like the one people are referencing above. :-)
He said that it comes and goes and he hasn't had it for a while. Am wondering if he should go to the dentist next time.
Be curious to learn more! Dan went to the dentist today for a regular check up and out of the blue the dentist gave him a book to read about the relationship between calcium and cancer. We haven't read it yet, so we don't know what it is about. Anyone ever heard of it?
Details, David...I need details. I always track your progress because Dan seemed to follow in your footprints on the recovery side. Except it took him a heck of a lot longer to get his endurance back. And, he can't bike 120 miles a week here because there's just way too much snow. But, he's been skiing a lot. :-)
M- Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Jeff i got sucked into reading about these morons who are actually having their tongues cut in half and left to heal in two pieces.How perverted is that?I am deeply traumatised!!!
David i am glad it is just and infection.Thrush is pain in the arse,but i think it responds quite quickly to treatment.
take care liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Well I can't ski (snow type) here ever so tell Dan we're even.
My "split" has now grown to something like the Grand Canyon. It's now almost from the tip of my tongue back at least an inch or so. It's not that painful but the white stuff is but I did start on the Diflucan last night and I'm eating my yogurt so we'll see. I am just amazed how quickly things can go from "normal" to unpleasant. I guess we just don't have much in the way of tolerances post Tx.
I think our "2 week" rule should only apply to people that have not had our cancer. As for the rest of us I agree with Patty. We need to get it looked at ASAP.
One thing I learned quickly last night is eating a fresh orange with a sensitive split tongue with Thrush don't go together. Ouch that stung. I would eat a bit and then dip my tongue in cold water and then eat some more. Think I'll pass on my orange for a few days.
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: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | David, I'm sure you will learn promptly that a lot of fruits have acid in them. Bananas, Oranges & their cousin grapefruits, Apples plus a couple more and most of the fruit and veggie juices. Good luck with that tongue today.
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: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Sounds unpleasant, I hope it heals quickly David. I don't think Dan's ever got that uncomfortable. During treatment he got thrush regularly and that was terrible.
Not sure what Dan's current his tongue issue is...will be sure to get it checked out next time it occurs. But, it sounds much less severe than what you are dealing with.
I think it's all that warm weather you have to contend with. :-) Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2006 Posts: 493 | David,
Sorry to hear of your split tongue woes. I have seen pics of youngsters in the Air Force who had this done (against appearnce regulation), looked pretty gross. I hope you start healing soon. Must be tough to talk and eat soup ;-)
Keep us posted, you know you are my barometer.
Tim
Tim Stoj 60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
| | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | I have never heard of a split tongue happening except in old proverbs ...whiteman speaks with forked tongue..
Although as a child I split my tongue riding a skateboard and it hurt like heck!!! Guess I learned a valuable lesson that day...don't talk and ride...But it was milk shakes, ice cream popsicles, and pudding for a while...
Hope you are feeling better Dave
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | 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 | Sorry to hear you have thrush. It can hurt like heck and come on so fast. I felt dry mouth and a tingle and within 2 hours my whole mouth was covered with it. The meds ususally clear it up quickly. Hope you feel better soon. 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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | [quote=Cookey]Jeff i got sucked into reading about these morons who are actually having their tongues cut in half and left to heal in two pieces.How perverted is that? [/quote]
Liz
I wish that there was a way that some of us could have their (sterilized of course) tongues and they could have our flaps instead if they want to do this. The dumbies.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Its just about the sickest thing i have ever seen Patty,what the hell goes through the mind of a moron who goes and asks someone to cut their tongue in half?
David have they given you nystatin?
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | OK, perhaps I have mislead you all. My tongue is not like split into a snake tongue but visualize if you would flying over the Grand Canyon from 30,000 feet and looking down you would see flat land (my tongue) surrounding a deep trench (what I call my split) running through the middle.
Good news, after 2 doses of the Diflucan and 2 cups of the active yogurt it already feels better so lets hope that's the end of it. Still wonder why or what I may have done to encourage it's growth but I'm glad it's reacting so quickly to the meds.
What's the nystatin for?
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Hi david you didn't mislead me i just came across these other idiots while reading about splits in the tongue ,i realise yours is not literally split lol.I have split my tongue sucking boiled lemon sherbert sweets and it hurt like hell for a few days.Nystatin is a liquid you apply by dropper to yeast and thrush infections in the mouth.
glad its getting better. liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Get your butt to the doctor! Or are they all out sun tanning? Guess there are advantages to cold weather - our doctors are available in their warm offices  Donna By the way, laughed like crazy at your description of trying to eat your orange - i.e. orange (pain), water, orange (pain). Definitely you should not be allowed around sharp instruments as you appear to be dangerous to yourself!
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | David interesting facts: nystatin was isolated from Streptomyces noursei in 1950 by Elizabeth Lee Hazen and Rachel Fuller Brown, who were doing research for the Division of Laboratories and Research of the New York State Department of Health. The soil sample where they discovered nystatin was from the garden of Hazen's friends called Nourses, therefore the strain was called noursei. Hazen and Brown named nystatin after the New York State Public Health Department in 1954. GET WELL SOON
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
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi David,
I'm happy to hear the yogurt and meds are helping. You mentioned a yeast infection, hence the yogurt. Do they think that is the cause of this "split tongue" you are experiencing? Sorry, maybe I missed something. Good luck with your clients...I hope you don't scare them too much!!!
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Suz,
My dentist seem to pass over the split tongue issue opting to focus on my white tongue and cheeks. He kept going further down my throat with the wooden paddle each time saying "a little bit further, now say Awww". I know he saw my stomach. When I tried to bring him back to the purpose of my visit he said "Oh that's common, I've seen worse. It's probably due to the swelling." Then I said, well when the swelling goes down will my tongue come back together and he said "maybe". Now that a lot of the pain and sensitivity has gone away, the split wasn't the problem, it was this Thrush which I just didn't recognize until my tongue split and I associated my pain with that.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Thanks for the tips on dirt drug. I think I know way to much about it now.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | David the origin of drugs and how they were detected is fascinating. Take cisplatin, that was totally accidental. It was found that bacteria were killed near platin electrodes. This was followed up and the rest is history. Or take saccharin, the chemist was working on tar products! He did not look for sweeteners and must have ingested some by accident (it is about 300 times more sweet than sugar) so it did not take much.
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | OK now we're getting WAY off the topic here which is ME ME ME. lol
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | David, I was told the crevises in the tongue usually developed when you are low on vitamin B. Try a vitamin B50 complex. It also helps strnegthen your nails. I took it for years until I developed an intolerance of all vitamins and supplements.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I took it for years until I developed an intolerance of all vitamins and supplements.
Sooo I'm supposed to be enthusiastic about taking these vits?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Nooooo. But just because I developed an intolerance doesn't mean you will. It did solve the fissures in my tongue, but I also have not developed new fissures since stopping them a year ago. Ask your dentist about it.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 |
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.
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