#69680 02-11-2008 08:03 AM | Joined: Jan 2008 Posts: 67 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jan 2008 Posts: 67 | Hi
I posted not long ago that after my last Dr visit he gave me a perscription for oral thrush i have white patches on the top of my tongue, well i have finished the meds and it hasnt changed at all, it wont brush off but i can scrape it off with my nail (it comes back) i called my Dr he wants me to go in ...i was expecting another lot of meds now im scared anyone else had this?
thanks for reading
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Sounds like thrush but get it checked out. I had thrush so badly that it took six months of meds to finally get rid of it. It's a yeast infection so feeds on sugars, so avoid them and any carbohydrates that turn into sugar, essentially anything white.
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: Jan 2008 Posts: 67 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2008 Posts: 67 | thank you eileen for replying,it helped my nerves a lot, i am still using my peg tube so im ok with the sugar thing, i do have two shakes a day but always brush my teeth and rinse my mouth afterwards (with biotene)
thank you again...i go to see my Dr wednesday
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | | 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 | Good luck and I hope for the best.
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 | The Dr thinks I might have thrush on top of everything else. LOL I hope no new diseases come to light until I kick this OC He checked me this morning and I have lost 3 more pounds. Beleieve me I eat anything that doesn't burn my tongue and I can swallow. I do have to say my body is slim and trim again. Goin back to my 20s. LOL
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: Jan 2008 Posts: 67 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2008 Posts: 67 | Hi all.
Well we didnt get to go due to being snowed in (i hate snow) so we have a new appointment for next tuesday my Dr called us up he said hes not worried and thrush can be a real pain to get rid of so its thrush (never thought id be pleased i have thrush...LOL)
also i stopped using my peg tube woohoo i have 4 shakes a day so excited to be off the tube for now...pending no weight loss
Jim im the same so far i have lost 45lbs the good news is i was 50lbs over weight when i started treatment so my Dr said im ok for now but not to loose anymore (im trying) your amazing to be eating .
debz
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | | Joined: Jun 2007 Posts: 64 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2007 Posts: 64 | has anyone else had trouble with fatigue.Im 6 mos out of rad and
chemo. had my pet scan yesterday .Now we wait .this ear is driving me crazy. so afraid it is back.they saw a nodual on my vocal cord the14th of jan.it wasnt ulcerated
now have spasms on that side is this normal
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Aunty, it seems my abilty and desire to eat have left me. I'm having to force everything I put in my wouth to go down.Hooray for Carnation VHC and baby food. LOL BUt with them, I'm sure I'll survive for awhile. I got an update today from the RO on what I will be going thru the 29th. Sounds like an interesting day for someone.Go to the OR , get the tubes inserted along with a breating tube, then to XRAY to make sure the tubes are in the right places, then to a room on the far end of the Hospital and get surrounded by lead and then they put in the Rad pellets. They even stop your abilty ot have bowel movements and insert a catheter. LOL then who knows?
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Jim- What a day you have coming up on the 29th. I will be keeping good thoughts for you that day. You sound like a tough cookie-good luck! Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Jan 2008 Posts: 67 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2008 Posts: 67 | Hi Jim... wow and OMG you have so much to go through, im sorry you dont have your hunger any more but you will once this is all over, im with you on the hooray for carnation...im very lucky my Hubby is a nurse he has been given loads of high calorie juice drinks and food for me from work so that should keep me going.
please keep in touch when you can i know i was off my pc for a while during treatment and what i had was nothing compared to you i will keep you in my prayers
Debz
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Wow Jim, you sure DO have alot ahead of you! I will be thinking of you and sending good vibes. Just keep repeating to yourself, no matter how tough it gets..............."I can do this", "I can do this".........because you CAN do this.
Much love and support,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I'm glad for you too aunty. I have a few handy nurses in my family and the are awfully handy. LOL I just received 4 cases of Carnation VHC and not I have 5 full cases. I received a nice letter from my Ins. too. UPMC is a much better Ins Co than my old one.Do you want some VHC? LOL Have a good day.
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 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 | Jim,
Hold on to the VHC. I drank that for about a year post Tx with lunch just to boost my daily caloric and vitamin intake since I really didn't enjoy eating much during that time. I still have an open case in my office kitchen just in case I get the urge.
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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