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Joined: Sep 2009
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I don�t understand why your doctors are talking about options in the first place. Are you sure you�re at a top flight facility?

The option you take is the one that assures the highest possible cure rate for the situation. This is only something a doctor would know. As a patient, your husband has much less knowledge then those administering to him. They should know the best treatment plan. How are you to decide?

If they are telling you that they think it�s a 50/50 proposition than I would go with the weekly Cistplatin/Rad combo. I did weekly and had almost no problems with the chemo.

If they are telling you that one treatment regime is better than another but more brutal, you go brutal. You want this cancer killed now, this time. I have had a recurrence and I would not recommend any easy way out the first go around with this killer. I would take the most aggressive rout and kill it now. I know David feels that HPV+ makes a difference but I do not. Whatever the cause, I would ask for the most aggressive cure coming out of the gate.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Sep 2012
Posts: 51
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Thank you all for the information. It's really given me a lot to think about. I'm not sure if I was misleading in using the word "options." The doctors explained the 3 types of treatments, one being surgery. They are recommending starting with chemo first because the tumors in the lymph are so large. They want to get them reduced as much as possible. My understanding is if they are smaller it is less likely for other areas in the mouth/neck/ears etc to be damaged in the process. We are going to a top notch cancer facility in our area. The radiologist, oncologist and ENT discuss their findings with each other and agree on a treatment plan. I guess what it boils down to is to hit it hard and agressive from the get go, or slow and steady? I'd like another opinion but my husband is happy with the plan. That's why I've turned to you all who have lived through it.


Diane-wife to Paul, age 55
DX 9/17/12
HPV/SCC/BOT Stage 4a
Non-smoker/casual drinker
Otherwise healthy
9/24/12 Cisplatin, Taxotere,5-FU - 3x
12/3/12 Rad x 35/Carboplatin x 3
1/15/13 DVT upper thigh
Passed away 1/23/13
Joined: May 2010
Posts: 638
klo Offline
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Sounds like you are fairly well under control. Just one piece of advice:

The most important thing is that once you have made your decision, stick with it, believe in it and don't look back.

Those of us that have made it out of the hole tend to defend and advocate for whatever treatment we had - it helps us validate the decisions we made and makes us feel more comfortable. This is just human behaviour. The same applies in reverse when things don't quite work out the way we envisaged.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: Mar 2008
Posts: 3,082
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Diane

Klo is so right that our personal experiences color our responses to questions like yours. That's why DavidCPA's and Kelly211's advice are different. Having had not one, but two recurrences, if I had it to do over again, I'd take the brutal induction chemo and then radiation/chemo. While the after effects can be bad, the first time the cancer came back, I ended up even worse. I'd take a look at the recent OCF news report that just a DNA test or PCR test showing HPV may not tell the whole story since the mortality numbers for those are the same as for non HPV (hence Kelly's doubt). The beneficial difference seems to also involve E6/E7 antibodies
OCF news
My HPV+16 status hasn't helped me much.
here is where your doctors can help - ask them what they would do for their son or daughter or father or mother.

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
Joined: Oct 2011
Posts: 805
KP5 Offline
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No matter what, we are here for you.
Klo, you are so right. I never thought about it that way when we all battle, I mean discuss, our differences on tx. It does validate us. Great point!!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Posts: 945
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There are many, many factors to be considered - HPV, smoking or not, not, the health of the patient, the size of the tumor, lymph node involvement (bundled or not), EFGR level, exact subsite (tonsil vs. BOT), to name a few. You should be able to find study results on both protocols - evaluate them based on HPV/non smoker analysis. In this case, one of the factors you mention is:

[quote]They are recommending starting with chemo first because the tumors in the lymph are so large. They want to get them reduced as much as possible. My understanding is if they are smaller it is less likely for other areas in the mouth/neck/ears etc to be damaged in the process.
[/quote]

Although the chemo is rough, radiation is the gift that keeps on giving - reducing the target volume with the induction sounds pretty compelling to me.

In discussing this with the doctor, you might ask if his recommendation for himself would be different than for his brother - if they each had the exact same cancer as your husband. If the answers are different, you will know that the doctor thinks the protocol he picks for himself has a good enough risk/reward level and less side effects, but that the one he picks for his brother has a lower risk of failure (I'm basing this on a couple of studies I've seem - can try to find them other the weekend). If he answers the same for him and his brother, pick that one.

To add to the complexity, it's looking like a slightly accelerated radiation therapy may be of benefit. Not all centers can accomodate this, but it wouldn't hurt to ask.

Maria

Last edited by Maria; 09-20-2012 01:20 PM. Reason: include info from recent post

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, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: Sep 2009
Posts: 618
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Just a personal note here,

Although I disagree with David on this point, I do so with the highest level of respect for him and his contributions here at OCF. David is one of our hero's here and I read every one of his posts. I learn something new almost every time.

Thanks David.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
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I'm just like anyone else on this site so please don't feel like you have to explain why you disagree with my thoughts. I'm more of a risk taker than most and my posts probably reflect that from time to time but I do explain that I'm not in any way a doctor, just a survivor so hopefully readers take what I say with that "grain of salt". I do always advise that they seek alternative opinions from a CCC if possible and certainly anyone would be foolish to ignore what a team from a CCC advises. IMO everyone with ANY cancer should have access to a CCC before any Tx is done.


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: Dec 2010
Posts: 5,260
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"OCF Canuck"
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I know sometimes it seems like hunting an ant with an Uzi, but where cancer is concerned I've seen too many people die from taking the conservative approach, you may only get one shot at it - give it your best and come in with both barrels firing. I know traditionally HPV cancers are easier to treat with less recurrences - but we're all individuals on a cellular level - everything comes into play - DNA, environment, diet, habits and lifestyle. Just because 8 times out of ten the same treatment works - doesn't mean you won't be one of the 2 that has a problem and recurrence. As charm! I think has, said before - you have either a 100 % chance of beating it or a 0% chance - that being the case, do whatever you can to make it the 100% so that you never find yourself saying.... What if? Good luck

Last edited by Cheryld; 09-21-2012 10:57 AM.

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
Joined: Sep 2012
Posts: 51
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Port was put in yesterday morning with no problem and very little pain. So far so good! smile


Diane-wife to Paul, age 55
DX 9/17/12
HPV/SCC/BOT Stage 4a
Non-smoker/casual drinker
Otherwise healthy
9/24/12 Cisplatin, Taxotere,5-FU - 3x
12/3/12 Rad x 35/Carboplatin x 3
1/15/13 DVT upper thigh
Passed away 1/23/13
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