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JLohr,

Sorry to hear about the Diagnosis. Dang HPV got me too. The good news is that was 6.5 years ago. The HPV status is something they defiantly can determine. While I was doing my research, I found somewhere, that 80% of BOT cancers were HPV. I believe it is much higher than that. If it is, this is highly treatable with good success rates. The down side is this treatment can be brutal. At least for me it was.

I had cisplatin. I was scheduled for 3 big bags. However I was so sick they cancelled the third dosage. This happens a lot. Weekly seems to be much more manageable. However I believe, (I admit, I could be wrong) that the three big bag method is still the "standard Treatment". To me that means, nothing has replaced this as the "best method". I mean that in the terms of kicking cancers ass. However, they are plenty of studies that say, weekly cisplatin or carboplatin are also good methods with much less side effects.

I had no issues with hearing loss but this a definite concern with cisplatin. I really bothers me that there is not a test to determine whether cisplatin will can hearing issues. To me, this seems odd because cisplatin has been around forever and therefore plenty of data is available to draw correlations or causation. It is like no one "want to know" or there is just "no money" to find out.

My advice, seek the best cancer center available. Find doctors you trust. Think long term but act short term. Try not to panic, follow all instructions. Get as much done now and clear your schedules, prepare for a rough 2-6 months. This is very treatable but the treatment is harsh.




Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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As far as I remember, the advice to get the baseline figures for thyroid and testosterone came from a discussion in which a member mentioned his discussion with his doctors post-treatment if his thyroid levels wrere “normal.” His doctors were of the view that the blood tests showed numbers that were in the normal range, but the member felt that it might not have been his normal pre-treatment. But at that point it was impossible to determine what his personal normal was as it was post radiation and if there was impact on his thyroid, it had already happened, hence the advice to get the baseline figures before treatment starts. I believe the same is possibly true with regard to the testosterone level. Unfortunately, this member (Charm) has since passed away. You might want to search the posts under his name or thyroid levels if you want to learn more.

My husband’s treatment did affect his thyroid level and he suffered from erectile dysfunction as well. He was put on a thyroid supplement post treatment and was given a prescription for Viagra.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Gloria is spot on with her info. Prior to beginning treatments its important for every patient to have a full blood test including thyroid and testosterone levels (only men need). This has been discussed many times here. I do remember Charm posting about it several years ago. Charm was a dear friend who was one of the kindest and most knowledgeable people Ive ever met. Rads (with or without chemo) does a number on most OC patients with having a direct impact on both thyroid and testosterone in men. My thyroid took the hit and started getting messed up a couple years after finishing rads. Its a tiny little pill that I put thru my tube every morning so its not a big deal. My ENT orders blood work every 6 months to keep an eye on my thyroid levels and adjusts meds accordingly. Im at 75mcgs of levothyroxine, just changed from 88 in Feb. From the talks Ive had with my very experienced ENT, seems like almost every patient who has rads ends up on thyroid meds eventually.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Definitely get a thyroid baseline. One of my doctors tried to say that my thyroid failure post-radiation wouldn't have happened 'if it wasn't about to happen anyway' as if I was trying to blame him or something. I was just trying to get to the root of the problem, which was fatigue caused by thyroid failure! And I needed the numbers to prove what was going on, which fortunately I had. It doesn't happen to everyone ... mine probably did have issues beforehand ... but it's better to know all your numbers!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
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If treatment hasn’t started yet, as recommended, have thyroid baseline, in addition too, kidneys, which is pretty standard with blood tests showing the GFR, but testosterone levels, hearing, and vision too, which all were altered from my treatments. I’m on daily 150mcg levothrixine. A recent hearing test showed I lost 50% of my hearing in my left ear, most radiated side, which I sort of knew, but not the percentage, and it was recommeded I get a hearing side.

Some things may be measured during treatment, but definitely all after treatment has ended as these can be affected.

Good luck


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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JLohr Offline OP
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Thank you Christine. I haven't checked in because as you know, it's been busy. Treatment is an hour away. My husband started experiencing ringing in his ears and sores in his mouth, so they stopped the Cisplatin. We have an appointment tomorrow to discuss changing drugs. The nurse did mention Carboplatin. Do you know if this is a lot different than Cisplatin? His nausea wasn't bad at all and besides the ringing in his ears and sores in his mouth, he hasn't had any major side effects from the Cisplatin. We're both concerned that by changing the drug, he's going to experience something worse. Any input would be much appreciated. He's now into week 3 of treatment and the thick secretions are keeping him up at night. We have magic mouthwash and they mentioned a gel of sorts that wasn't in his prescribed meds when we picked them up, so I'm assuming we have to ask the pharmacist for it. His tongue is SO sore and his throat is starting to get sore. He's also developed an extremely painful muscle spasm/pain on the base of his neck in the back. We've tried everything from Flexeril to massage to Reiki to Chiropractic and nothing is relieving the pain. I'm assuming this is from the radiation? Sigh. My heart goes out to all of you who have gone through it. It's horrible for you to go through, and painful for your loved ones to witness. :-(

Last edited by JLohr; 04-19-2018 07:01 AM.

Jeanne

Husband Jim diagnosed March 6, 2018 Squamous Cell
PET scan showed base of tongue and right lymph node affected
Unable to test P16, as fluid and cells in lymph node were necrotic
T2 N2a M0
Started 7 weeks of Cisplatin and Radiation April 4 2018
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The hearing loss can happen without significant signs. My husband lost enough of his hearing to be advised that he should get a hearing aid and he had no symptoms of possible hearing loss all through his treatments. Carboplatin is another chemo drug that seems to be quite frequently used. My husband had both Cisplatin and Carboplatin (later in another round to deal with his metastasis). As far as I can remember, there was no significant difference in John’s reactions to the two meds.

A Waterpik used with warm water, a bit of the mouthwash, on the lowest setting with the tongue scraper attachment cleans out the mouth and gets rid of the gunk really well. John used to say it was the best purchase we had made. I learned about it from this forum. I bought one at a reasonable price at Costco.

Starting from about Week 3, the patient will be find treatment increasingly difficult. Hang in there, I am thinking of you.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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JLohr Offline OP
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Thank you kindly Gloria. I will be certain to find a waterpik and tongue scraper. :-)


Jeanne

Husband Jim diagnosed March 6, 2018 Squamous Cell
PET scan showed base of tongue and right lymph node affected
Unable to test P16, as fluid and cells in lymph node were necrotic
T2 N2a M0
Started 7 weeks of Cisplatin and Radiation April 4 2018
Joined: Oct 2012
Posts: 1,275
Likes: 7
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The tongue scraper attachment is part of the Waterpik attachment set. You don’t have to buy one.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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