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#142861 - 11/12/11 11:33 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: David2]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4785
Loc: Toronto canada
Good luck - and as everyone here said ask away if needed... So glad you opted for treatment
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#142943 - 11/15/11 06:17 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Cheryld]
Gary Offline
Administrator, Resident radiation science expert
Patient Advocate (old timer, 2000 posts)

Registered: 11/27/02
Posts: 3535
Loc: San Francisco CA
Bill you're going to sacrifice 6-12 months of your life to keep your life - sounds like a good tradeoff to me. Surely you are old enough to know that there are times, in life, when you have to roll with the punches. Sure Tx sucks but remember there is a beginning a middle and an END! keep focused on the present and the challenges that it presents. Keep your eye on the future that this will END.

I was into the healthy lifestyle thing - very little meat, except chicken, lots of fruits and veggies, cut out sugar & salt, exercise, etc. for YEARS pre cancer. Got it anyway. I am convinced that not much else will prevent cancer except genetic propensity, luck, protected sex, no smoking or drinking.

My ENT was pissed off that I waited so long for coming in for a Dx. I can only imagine how pissed off he would have been if I told him I was screwing around with alternative treatments for 7 months. I drug my feet and IMHO it cost me an additional stage.

Congratulations on finally finding acceptance.




Edited by Gary (11/15/11 06:19 PM)
_________________________
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)

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#143295 - 11/25/11 04:58 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Kelly211]
swati1 Offline
Member

Registered: 09/26/11
Posts: 19
Loc: NEW JERSEY,USA
hi kelly,
i was going thru the old posts and read yours. mom in india has similiar symptoms as you have. she has scc of tongue in feb 2011 and went thru surgery and 37 rounds of radiation in june. 3 monthe back she had excruciating ear pain, couldn't eat. the dr made hae wait till 3 months and did biopsy. it came out tumour and the onco did surgery last monday.she has lost 1/2 of her tongue including the tip. but i wanted to the further course of treatment. onco says no chemo or rad. is it normal.
please can you respond to mom has cancer post.

thanking you,
sincerely,
swati

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#143379 - 11/29/11 12:24 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: wlildebill]
Tulsa Wife Offline
Member

Registered: 11/27/11
Posts: 6
Loc: Oklahoma
My husband's doc said radiation only (no chemo) is the recommended treatment for HPV related tongue cancer w/mets to neck nodes. It does not look like this forum agrees w/that. More info???

Becky
CG for 66 yo husband who just completed radiation only for base of tongue CA w/METS to neck nodes.
_________________________
CG for husband. Dx 08/11/2011 BOT cancer w/METS to neck lymph node.

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#143380 - 11/29/11 01:22 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Tulsa Wife]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Becky Bowles

You should really start your own thread. I know first time internet forum users get confused but I'm 64 and I can figure it out. All you need to do is click on a forum and then click new topic.

Okay, all my lecturing is done. Now to your post. Your husband's doctor's advice does not comport with the NCC guidelines nor with any of our experience. It's not that this forum does not agree, it's the facts and research that show conclusively that base of tongue cancer that has spread to the lymph nodes NEEDS chemotherapy in addition to radiation. But it looks from your signature that "the train has already left the station" in that chemo helps the radiation and your husband has completed radiation. So make sure he has regular and frequent checkups and MRI/CT scans since unfortunately for him, BOT cancer without chemo often comes back quickly. I had maximum radiation as well as 8 Erbitux chemo and my cancer came back but that is because Erbitux just did not work for me and for many others so it's like I never had chemo. There has been discussion that HPV BOT may not need chemo but I was HPV positive so for me that theory was false.
I don't mean to alarm you, and with any luck, your husband will be just find, but insist on regular scans. Chemo has lots of bad side effects, so it is very possible that your doctor is on to something that has not been validated but could be true. So it could turn out to be a blessing
Charm


Edited by Charm2017 (11/29/11 01:25 AM)
Edit Reason: toned it down
_________________________
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

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#143385 - 11/29/11 02:04 AM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Charm2017]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4653
Loc: Laguna Niguel, CA
Dear Tulsa - The standard of care is established by the NCCN Guidelines. Their treatment protocols are used by the top NCI designated cancer centers. This was set up so that smaller regional hospitals would have some idea what the big institutions were having success with. The NCCN guidelines today are for a combination of chemo and radiation, but not everyone adheres to them. You can find a current copy of the guidelines in the treatment section of the main OCF web site. They vary depending on location of tumor and staging.
_________________________
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.

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#143393 - 11/29/11 02:12 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Brian Hill]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Becky

Don't forget that I am NOT a doctor so I just have general opinions on BOT based on my own experience and reading. What counts is how the treatment takes care of the cancer.
You can look at the guidelines yourself at OCF
NCC guidelines BOT is on pages 18 to 22 of the pdf file. It's unclear to me what size your husband's tumor was (T1, T2,T3 etc) or how many lymph nodes (N2. N3 etc) the cancer had spread, so my comments were based on an assumption that like most of us, his cancer was not discovered early. But we all know how bad assumptions are.
If your husband had a T1, and no adverse features on a positive node, page 19 shows "definitive Radiation TX" as an option without the chemo. My bad in jumping to the conclusion that he was page 20 like myself which does recommend concurrent chemo.
Bottom line: just ask your doctor where your husband fell within the guidelines and you will know better.
Sorry to have jumped the gun and hope the Petscan is all clear.
Charm
_________________________
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

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#143394 - 11/29/11 02:15 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Brian Hill]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 859
Loc: Ohio
As Brian says - check the NCCN guidelines here: http://oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf

In the NCCN protocols (and there are others) definitive RT (radiation with no chemo) is ONLY listed as the one of the standards of care if the staging is T1N1 or T1N0. Print out the pages on staging as well as treatment and bring them with you to the appoinment.

If the radiation did not get everything (and they will check carefully for this in the coming weeks, both with palpation and a CT/PET scan at some point), they may elect for a neck dissection. If you look at the guildelines, you will see the various decision points. Scary looking at them, but maybe scarier not. PM and I can point you to some additional information.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#143399 - 11/29/11 02:33 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: Maria]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8300
Loc: Gulfport, Florida
Tulsa,

It would also be helpful if you update your signature line to show he has already finished rad w/ no chemo. That's the first place I read before I respond.
_________________________
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 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#143409 - 11/29/11 05:48 PM Re: HPV SWOLLEN LYMPH:: Seek Alternative Treatments [Re: davidcpa]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 859
Loc: Ohio
Also, just a note on treatment - the doctors must weigh the toxicities of the treatment with the benefit to the individual patient. For example, the platinum-based chemos can be pretty harsh if the patient has other physical issue besides the cancer.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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