#94327 04-26-2009 03:20 AM | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Hi all,
I queried a while ago about the chemo cream 'Efudix", as pre-cancerous cells on my lower lip were discovered from a biopsy, after severe bleeding late last year.
Well, I survived the 'Efudix' (almost!), stopped it early after 13 days because of more bleeding, oozing, swelling and pain. I saw my dermatologist last Friday and was given corticosteroid cream, plus moisturisers. I stopped using this corticosteroid cream last night as I'm still bleeding, oozing and sore.
My query is, could this be a result of radiotherapy (38 or more doses, 3 fields, no IMRT)? Has anyone else experienced such problems?
Cheers!
Tizz
End of Radiation - the "Ides of March" 2004 :-)
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi Tizz,
So sorry to hear that this cream is also giving so many issues and pain. Hopefully someone here can answer your query.
Love
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Hi Gabriele,
As my usual luck the dermo wasn't in today, but after explaining to the receptionist my little dilemma, the message was passed on and the dermo called back. I have to continue with the cream plus do some other stuff. Painkillers don't pain kill! Sick of washing pillow slips...Heath Ledger, eat your heart out, I look almost as good now in the mornings!
Cheers!
Tizz ;-)
End of Radiation - the "Ides of March" 2004 :-)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Tizz, I like the post to the health ledger, LOL good one and congrats.
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 2004 Posts: 316 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 |
End of Radiation - the "Ides of March" 2004 :-)
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Meredith,
Long time, no speak.
Sorry that you are having this problem and wish I could help. I hope you are doing better by now. I don't get to the forum every day like I used to. Lots of things going on here.
Say hi to Bill and I hope he is 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: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Hi Jerry, I don't get to forums as much as I used to also. Saw my Dermo late on Wednesday and have been given antibiotics plus "Diprosone" cream. As so far the swelling seems to be going down, but the blood and goo is still annoying, besides embarrassing in public! Bill is doing fine, but who wants to wake next a wife looking like "The Joker", Mr Ledger? :-) Cheers! Meredith www.soundwarp.com.au
End of Radiation - the "Ides of March" 2004 :-)
| | | | | 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 | hey Meredith
nice to see you
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: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Hi all,
Don't always have time to communicate, too busy trying to run the business.
Husband Bill (Jerry met him in Manly, Sydney, Australia) has lung cancer, non-small cell, so I've been a bit busy. At least he is in the same hospital I was, and his Onc knows my ones! Small world!
My lip "solar keratoses" has settled after the chemo cream treatment, bleeding stopped, can speak again - at least now I can give a bit of lip to people!
Hope everyone is doing OK.
Cheers!
Tizz (aka Meredith)
End of Radiation - the "Ides of March" 2004 :-)
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Tizz,
Glad your lips have cleared up but sorry to hear about your husband. What is their plan for his treatment?
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Meredith,
I'm so sorry to hear that Bill is now in the fight. My prayers will now include both of you. I'm glad that you are doing better.
Please give my best to Bill and tell him that Marilyn, Pam, Bruce and I will be thinking of him.
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: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hey Tizz... I logged on after being gone for a while and was so sad to read about your Hubby. I will keep fingers toes and legs crossed for both of you!
Cheers
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi Merrie,
Any news on Bill?
Love
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Chemo prep tomorrow (Tuesday). Palliative care nurse visit to me Tuesday. Wednesday chemo start I think.
Non-small cell carcinoma. He has only just turned 50...and we are self employed, own no house, have no assets, only a Mastering Studio. Does anyone want to buy a Mastering Studio or two in Australia? ;-)
Silly me passed out at the supermarket last night and landed in the garlic section! (Revenge of the garlic, me being the "Garlic Queen!) I liked when I was asked, "how long were you out for?" Well, how would I know!
Cheers!
Tizz
End of Radiation - the "Ides of March" 2004 :-)
| | | | | Joined: May 2009 Posts: 4 Member | | Member
Joined: May 2009 Posts: 4 | Hi, my name is Katherine. I am new to this site. Not sure how to navigate. But I have a question. I was diag with tongue cancer, had rad, chemo. Now 6 months later, I have no salivary glands (working). Do they come back? Doc is noncommittal about it. Thanks. | | | | | 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 | Karen,
You are navigating just fine. It you ever want to start your own question you should just choose a Forum that fits and then at the top of the page click on New Topic and type away. If you plan on being here a while it's helpful to you and us if you add your particulars to your Signature Line like mine so you don't have to repeat yourself each time and the responders know where your question is headed.
That said, when, how much or if your saliva returns depends upon how much damage was done to your glands. I saw my first improvements about 4 months post Tx but it wasn't until 15 months post that I really was satisfied and I even saw a little more improvement 24 months out and I'm just one story. I'm sure you will hear from others but try to relax and be patient and see what your story becomes. Good luck.
BTW how is your taste?
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2009 Posts: 4 Member | | Member
Joined: May 2009 Posts: 4 | David,
Thanks so much for responding. First, mostly I only have my sweet tooth back. I can't taste salty things but it doesnt matter because I can't really eat anything besides oatmeal, ice cream and yogurt. My mouth is terribly chopped up and sore inside from not having saliva. Is this what happened to you? I will reread your directions about how to put my information in, etc. This could take awhile. | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I never lost my sweet tooth and it's funny because I was really never a sweets eater. Even to this day my sweet taste is more superior than anything else. I did use that to my advantage during recovery as I ate every fatteningly sweet thing I could find to pump calories into my skinny body. That was about the only thing I enjoyed during recovery. Pancakes smothered in syrup and sunnyside up eggs were a favorite lunch which I downed with a Carnation Instant Breakfast VHC mixed half and half with whole milk.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ 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 | It has been almost 2 years and I still don't havw saliva back. ONly time will tell.
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: Aug 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2007 Posts: 83 | Mine is almost all the way back. Still get dry mouth worse at night. Be patient, it has been 18 months for me. I would guess I am 90 % back with taste and saliva. I was like David, not a big sweet eater until treatments. Now I cannot get enough, ice cream , cookies, cobbler.....Used to be a chip/snack guy now not so much, it is the sweets.
Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
| | | | | 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 | I think I have become addicted to Wendy's Frosties. I have to have one every Sunday night or else get cranky.
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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