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suzanne98 #107272 11-18-2009 06:58 AM
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Hi Guys well I don�t know if its because I have the most fabulous team of doctors in the world or I am lucky, but I had been feeling sick most of the time, so it stopped my appetite, so much so I did not eat much for 3 days, even though the Monk taking care of me tried to make me eat it was not till I stopped taking the Nausea tablets, that I felt good enough to eat, then as I said, a dear friend took me to Sizzlers and Bingo I was fine again, for eating, I told the doctor he said we have these amazing Nausea tablets from Japan, but they are 40 dollars each in the states, but we can get them for 500 baht I said give me 20 and wow do they work.

Then today I had one of my 6 sessions of chemo, This is a new expensive chemo, but I wont loose my hair and Ill feel good, all through it also the magic ingredient is, I hade 3 hours of saline drip, so now I don�t know if I�m a junky or its the combination all sorts of things, I feel wonderful, so there you have it.

2 more days radiation, then only 5 weeks to go, its flying by and now I feel like I could run to 100 yards so may be im� lucky or there is worst to come.

Let�s hope so as I have always been a very lucky guy.

Good luck to you walknlite , my neck mass has now stopped growing and the mass feels so much better, I saw 4 others with same to day and one was a Monk one a Policeman and one looked like a truck driver, I spoke to one, he said his came up with in 2 months also. But they are curing it, let�s hope its good news all round.

Are you having 6 fractions of Chemo or just two big ones, Im having the 6 and its better all round, I think time will tell, Im thinking of you keep us all Informed but more of all keep your water intake to 3 liters minimum or Saline once a week for a few hours it will work miricals.

Ill let you know more as it happens.


"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
Teacher jon #107287 11-18-2009 09:07 AM
Joined: Mar 2008
Posts: 3,082
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Jon

You are the victim of a HOAX. Your last post is NOT an update, it is FALSE. Please see my prior warning on this
Johns Hopkins cancer HOAX Johns Hopkins even had to post on its webs site a report denying this so called newsletter.
It is not fair to new members to just post false emails here so I have reported this to the moderators to delete.
Again, while you have been a victim, please do not pass this type of false information to any more of your friends. I am not angry at you, but at those who compose these fake emails.


Last edited by Charm2017; 11-18-2009 09:14 AM.

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
Charm2017 #107288 11-18-2009 09:24 AM
Joined: Mar 2008
Posts: 3,082
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Teacher Jon

Actually, as a sharp eyed OCF member noted and PMed me, at least your false posting spelled Johns Hopkins correctly while the original false email spelled it "John Hopkins". That makes it all the worse, as now this false info appears even more credible.
So it looks like the UK/Thailand version of this hoax is getting more sophisticated than the original March 2007 one.


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
Charm2017 #107291 11-18-2009 11:26 AM
Joined: Nov 2002
Posts: 3,552
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I deleted the hoax. Teacher Jon, I know that you had the best of intentions and the hoax looked very real but please run these by Brian or I before you post them.

Last edited by Gary; 11-18-2009 11:29 AM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #107292 11-18-2009 12:06 PM
Joined: Sep 2009
Posts: 60
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Posts: 60
Jon;
I found that the steroids they gave me with my chemo gave me tons of energy and made me feel better for about a day and a half. I know this for sure since one week my blood sugar was 435 so they witheld the steroids and I did not get that energy boost.
So I would take advantage of those good, post chemo days to get more done and get outside a bit.

Good luck.


Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
Gary #107315 11-18-2009 06:06 PM
Joined: Mar 2008
Posts: 3,082
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Gary

Thank you for deleting Teacher Jon's post of the false Johns Hopkins newsletter. I had hoped TJ would have deleted it himself once I pointed it out but that's why we have moderators. You show your great spirit by offering to preview TJ's posts of questionable cancer "facts" but it's really not that hard to do a simple search of Snopes or Quackwatch to know how bogus these things are. Thank you again.


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
Charm2017 #107337 11-18-2009 11:11 PM
Joined: Sep 2009
Posts: 53
Supporting Member (50+ posts)
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Joined: Sep 2009
Posts: 53
Thanks guys I came back to delete it, so done.

Yes I still think I�m feeling good, I hope it stays that way, it was sure good for PR at my work, back to my old self, but did any of you have only 6 Cisplatin smaller doses and feel good, they say I will not loose my hair, as well or is this just a fluke and I can expect to go down hill again, even with this less harsh treatment.


The doctor said if I can drink minimum of 3 Lts of water a day, I stay high, if not each week they will give me 2 hours of Rehydration, so I'm ever hopeful. 5 weeks to go next week.

Last edited by Teacher jon; 11-18-2009 11:13 PM.

"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
Teacher jon #107347 11-19-2009 06:30 AM
Joined: Sep 2006
Posts: 8,311
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Jon,

Please update your Signature Line so we can easily know where you are in your 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.
davidcpa #107386 11-19-2009 02:00 PM
Joined: Mar 2009
Posts: 147
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I had 3 Cisplatin doses and as with you alot of hydradion each time. I went back to work each day after Chemo and felt fine (it was tax season). Just drink alot of water. As far as loosing hair - mine thinned out but it was not noticable to anyone but those who knew and were looking for the thinning.


DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
Carmen M #107445 11-20-2009 06:48 AM
Joined: Sep 2006
Posts: 8,311
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Hats off to you Carmen....I was fortunate to have my Tx in the summer and had 5 months or so to recovery before tax season. There is no way I could have been competent (watch it Margaret) trying to prepare tax returns during my 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.
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