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#134586 05-25-2011 11:22 PM
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Hi,

I would appreciate any input from others who may have experienced conflicting input regarding chemo. By way of background, I recently underwent tongue resection and neck dissection. My signature below provides some detail regarding my pathology results.

My surgeon suggested that I will need both radiation and chemo. However in meeting with a local oncologist at OHSU (Portland, OR) he believes that only radiation is sufficient. Since these are two conflicting opinions, I'd appreciate any suggestions on how to break the tie. Needless to say I am happy if I do not need chemo, but at the same time I want to go through it if it increases the odds of long-term success.

Thanks in advance for any comments or pointers. I love this forum and hope to contribute when I am through my treatments.


Chetan
SCC, lateral tongue, age 53, Tongue resection & neck dissection 5/6/11; T1N2BM0, RTX (35 sessions starting 6/8/11)/chemo (3x starting 6/10/11) Last cisplatin 7/22. RTX complete 7/27. PEG in 6/9/11, out 8/31/11
cs-scc #134588 05-26-2011 03:04 AM
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Hi Chetan

My husband Steve had Rads and Chemo. He got 3 x Cisplatin over a 7 week period. It was described to us as the chemo helps the radiation. They compliment each other. I wish I could remember the exact words but in a way i'm happy to say it's been a while since we heard the explaination. Steve is 1 year and 9 months cancer free from a stage 4 diagnoses, no surgery. Not sure if the chemo had any major part to play in this but I do believe that his treatment plan of rads and chemo are part of why he is still going as strong as he is.

I'm sure the other guys here will have some more information on chemo than I can offer. Whatever you decide to go with I wish you the best.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
WendyG #134590 05-26-2011 05:43 AM
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Chetan,

The chemo boosts the effect of the radiation, i.e. adds more killing power (most est between 10 and 20%) and if I were you, considering your cancer is HPV negative, I would opt for the chemo


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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Chemo is the smaller of the to devils by far! It basically causes nausea and a little more fatigue - it was the easiest of the two. It really can't hurt and may help... I'd do it.


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
Cheryld #134601 05-26-2011 09:30 AM
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This is an aggressive cancer and you should respond accordingly. You definitely will be able to have chemo again later if you should need to and I guess my question to you is:

"Why would you not take advantage of very option to kill the beast?"

My theory is: Hit me with your best shot. It won't be fun, but you will get through it and any extra boost you can get is exactly what you should do.

Remember - not all doctors are up to speed. Too often I have seen doctors tell patients what they want to hear - to the patient's detriment.

Hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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My husband Earl also had a Stage 4 diagnosis. He underwent both chemo with cisplatin and radiation for six weeks. Knock on wood, it's been three years since the diagnosis and he is doing great. Err on the side of caution and go with the chemo. The discovery of cisplatin's cancer fighting qualities occurred by a serendipitous lab observation. Read about the discovery by Barnett Rosenberg here:
http://en.wikipedia.org/wiki/Barnett_Rosenberg

Connie


Caregiver to Earl--Laryngeal SCC stage IVb
tracheostomy performed May 20, 2008
three teeth removed June 16, 2009
rad/chemo started July 9, 2008
radiation 35X, cisplatin 3X,
completed August 27, 2008
PET scan November 2008--good
trach tube removed June 22, 2009
trach opening sutured shut July 6, 2009
walldoe #134612 05-26-2011 01:39 PM
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Wendy, David, Cheryl, Donna, Connie,

Thanks very much for sharing your thoughts. I agree with being aggressive now, and am scheduled to meet with a MO tomorrow. I will let you know what he says. In the meantime, I was wondering if any of you experienced extra capsular extension in the nodes. Apparently the reason my RO did not think chemo is needed is because I had no extra capsular extension.

On another note, my RO is planning to radiate both sides of the neck (because two lymph nodes), even though only the left side had any evidence of SCC. Based on your comments above, I am assuming that a more aggressive option such as this is better, but thought I'd bounce it off you.

Thanks again for your valuable insight!

Best Regards,
Chetan


Chetan
SCC, lateral tongue, age 53, Tongue resection & neck dissection 5/6/11; T1N2BM0, RTX (35 sessions starting 6/8/11)/chemo (3x starting 6/10/11) Last cisplatin 7/22. RTX complete 7/27. PEG in 6/9/11, out 8/31/11
cs-scc #134620 05-26-2011 05:06 PM
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Hi, Everybody,
I also had a neck dissection and a combo of radiation and chemotherapy. My docs also wanted to "throw the book at" my cancer, and the chemotherapy was the least of my problem. I am not sorry that I had both. Had my 5th clear scan last week. Yea!


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Chetan,
I am one of the few you will talk to, apparently, who got along worse with chemo than radiation, at least until the last few days of radiation. Yes, I had microscopic extra capsular extension. It was the correct treatment, I believe. After a chemo weekend (I had them on Friday evenings) I would say that I hoped any cancer remaining following my surgery would have as bad a time with Cisplatin as what I was having! They like using chemo with rad because in general it does raise statistics for beating your cancer.

But extra capsular extension is not the only good reason to have chemo. Multiple lymph nodes involved, perineural involvement, and location of the lymph nodes all figure into it as well. If your cancer is more aggressive and less than well differentiated, then chemo is probably going to be valuable because chemotherapy will kill those more aggressive cancers better than the less aggressive ones. This is what the MO told me, and I have read this also.

Hope this helps you.
Best,
Anne



SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
AnneO #134631 05-26-2011 08:58 PM
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I'm just going to second what Anne said- do what you can - there are no guarantees but you want no regrets - good luck tomorrow !


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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