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My 58 year old husband was diagnosed with stage 4 tonsil cancer June 8, after experiencing a swollen growth in his neck. PET showed cancer in one lymph node as well as the tonsil. Surgery removed tonsil and 10 lymph nodes.....initial surgical pathology looked great, but further path showed a bundling to a few lymph nodes...everything on right side. Now recommending chemo as well as the planned radiation. Two medical centers interviewed....one recommending weeking cisplatin, the other three treatments. Equal total quantity. Any thoughts and experiences to share? Thanks...need some advice! Any survivors...would love to hear your success!

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My husband had stage 4 BOT cancer with several lymph nodes involved. He had the Cistplatin, Taxotere and 5fu. The he had 60IMRT with Erbitux. Finished in October and went back to work in Alaska on the Artic Slope on January 5th. Has been going strong since. Your husband WILL lose weight so it's important to bulk up while he can eat. Once tx starts nutrition and water are a must. Is he getting a PEG tube and a port?
None of it is easy, but in a blink of an eye you'll be looking behind you. Take it one day at a time and be sure to stay on here for support for both of you, but mainly for YOU. Caregiver is a very difficult role and you will be completely overwhelmed by the feelings of helplessness sometimes, but, a good cry and you get back to it!!
Keep in touch and feel free to personal message any of us.
Blessings,
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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Cisplatin & radiation is a common "One, two punch!" Kept me from another surgery and literally saved my life! Lost a lot of hearing (Especially high pitches) from cispatin so ask questions about that but the trade off is worth it (I'm still breathing). They will tell you that once you have the symptoms they describe the damage is done and hearing will be affected. Kathy is correct, eat like a beast now! I had a port and a PEG prior to starting treatment. That feeding tube became my best friend for a while so don't let his ego prevent getting it. Port makes hydration easier with cisplatin treatments so I'm sure it will be recommended. A few years from now it'll be a memory in the rear view mirror. Hang in there & Best Wishes!
Steve


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

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Thanks for your prompt replies. I am obviously new to all of this. Trying to evaluate the benefit to weekly cisplatin or just three doses. Any thoughts?


Wife to 58 year otherwise very healthy husband(and the sweetest man in the world). T1N2b SCC. June 2012 TORS Tonsillectomy/mod neck dissection and 10 lymph nodes removed. Path showing 3 bundled nodes, slight ECE. IMRT 30x and Cisplatin 2x. PEG for 10 wks. CT 12/12,2/13,5/1 3,9/13-allclear
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I had cisplatin spread over 6 weekly visits combined with daily radiotherapy treatments. When planning my treatment I recall they talked about 3 x cisplatin, but decided it would be better to spread it out for me. The impact and side effects of 3 higher doses might be much greater than 6 smaller doses on some patients.

Karen

Last edited by Karen Rose; 06-27-2012 08:21 PM. Reason: fogot something

46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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The doctors will be considering both the efficacy of the two protocols in generaly, and how your husband in particular will do with the different protocols. One of the issues with the three doses is whether or not the patient gets all three doses due to toxicity. You might ask about that.

I can't find any direct studies comparing the three vs. seven dose results, but maybe I'm just having a bad search day. Ask the doctors about this - they may have this information. It looks like some institutions prefer one or the other protocol.

My very best wishes to both of you - this is a hard journey but the I hope that the resources and support of this site will help you as it did me.
Maria

Last edited by Maria; 06-27-2012 09:16 PM.

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.
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Oncologist shared (small) study showing lesser side effects and same result with weekly cisplatin.....stating three large doses are given to patients who have not had surgery to remove tumors. Our thought is...why not be aggressive and have the same treatment given to someone who still has cancerous tumors? Any thoughts out there? Also, he had surgery, which provided the pathology showing multiple lymph nodes. They told us that information would not have been available without removing the nodes in surgery. How then, do patients choosing just chemo/rad know if the cancer has bundled to more nodes...thus making it a more serious prognosis? Thanks for your time.....really need some help....


Wife to 58 year otherwise very healthy husband(and the sweetest man in the world). T1N2b SCC. June 2012 TORS Tonsillectomy/mod neck dissection and 10 lymph nodes removed. Path showing 3 bundled nodes, slight ECE. IMRT 30x and Cisplatin 2x. PEG for 10 wks. CT 12/12,2/13,5/1 3,9/13-allclear
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If the patient can't tolerate the more aggressive treatment they may miss one or more of the chemos - bloodwork will determine if the chemo can be administered. Worse yet, it may interfer with the radiotherapy schedule: you really want to keep as close to that schedule as possible.

RE: bundled nodes - I've seen CT's showing bundled vs regular nodes somewhere online - not that I can tell the difference. It may be that the extent of the problem is only available with a neck dissection. I think you should ask again exactly what they meant about not knowing without the neck dissection.

Last edited by Maria; 06-27-2012 09:33 PM.

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.
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Hi good.

I was base of tongue SCC HPV16+ with one lymph node stage III and I only had radiation and Erbitux. My tx started November 20th 2012 and ended January 20 2012 (radiation burns to neck caused some stops and starts). I did not have surgery or platinum chemo (cisplatin)

My first post tx PET / CT May 7th came back very good. That same day I had a scope and finger exam and all looked good as well.

June 6th 2012 my ENT and my Oncologist both performed a scope / finger exam (separate appts) and both looked good.

Bottom line is I have been back to work full time now for 2 months and I feel very good. No long term side affects such as hearing or numbness or anything else. Full taste buds back, can eat "most" foods (smaller bites, have to chew well and no spicy foods "yet")

I did have a feeding tube placed in me BEFORE tx began...still lost 70lbs during tx (now up to a loss of 85lbs)but I was a big guy to begin with.

I now have some really nice baby skin on my neck (wife is jealous) and I actually look younger (no kidding) AND have lost all that weight. When old friends see me they say "you look great, how did you do it"? I tell them it was a $250,000 dollar diet / face peel treatment.

I am a 6 month survivor and I plan on living to 100!! I think you are off to a good start, but I am no doctor. smile

Best,

Tim

Last edited by tim6003; 06-27-2012 09:40 PM.
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Thank you for your encouragement..we are struggling in do many ways,... The thought of losing our beautiful life, just as we both retired,,,,with so much
ahead of us. He will get a PEG,,,,,,he barely weighs 175 on a good day and is down weight from the tonsillectomy 2 wks ago. We are struggling as we talk to 2 very fine medical centers.....one university (telling us 3 cisplatin over the course), the other a private hospital stating weekly. Neither wants to use Erbertx. They feel it is still unproven. Telling us radiation will be only 6 wks due to surgery, any thoughts?


Wife to 58 year otherwise very healthy husband(and the sweetest man in the world). T1N2b SCC. June 2012 TORS Tonsillectomy/mod neck dissection and 10 lymph nodes removed. Path showing 3 bundled nodes, slight ECE. IMRT 30x and Cisplatin 2x. PEG for 10 wks. CT 12/12,2/13,5/1 3,9/13-allclear
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