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#147217 - 03/16/12 08:46 PM Re: Symptoms of recurrence [Re: Cheryld]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 792
Loc: NY
Trust me...I am not comfortable with it, but the MRI is Monday and nobody would biopsy before then anyway. We will see what the MRI says before I make too much of a stink, just because it's soon. Kevin talked to our RO today and he also agreed that it could be healing tissue and that we could trust the new doc. I told Kev that I would stay out of it and he could decide. Frustrated, but being patient until MRI results. It was a tough week. I had my mom in the ER most of the day Monday, then back to the doc on Wed, Kevin's ordeal yesterday and oxygen delivery to mom today as well as several phone conversations with docs/nurses and radiology. I called them to see if the new doc's office had called them and they had not. I set the appt up myself to make sure we got it Monday. Now, if only I knew how to do a biopsy!!! ;o)
Thanks for the support guys!
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 10/2012

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#147469 - 03/26/12 03:40 AM Re: Symptoms of recurrence [Re: KP5]
DannyJ Offline
Member

Registered: 08/03/11
Posts: 15
Loc: Buffalo, New York
Kathy,

Sorry for the delayed response. The biopsy was not too bad at all. I had it on Thursday, March 1. When I was in recovery afterward the doctor told my wife that he had been aggressive in going after several spots to make sure he got every relevant area. My tumor was in the back of tongue and tonsil and that is the area he biopsied. By the time I went home I had moderate pain but really not too bad. They gave me some Lortab and I used that for a day or two and then switched to Ibuprofen as needed. The Lortab gives me some stomach and constipation issues and I just didn't want to start that again after finally being off of all pain meds the month before.

The doctor recommended that I stay home from work on Friday but I had already made an appointment to see a client on Friday morning under circumstances that would have been difficult to reschedule. (I am a lawyer, so there is no "heavy lifting" in my job.) So I was really hoping I could function and talk on Friday. As it turned out, I was able to do it without much trouble, and I went home immediately and rested the remainder of the day. The mouth pain was actually a little worse over the weekend, but my biggest problem was the headache and aftereffect from the anesthesia. It always seems to bother me and the headache with fatigue lasted almost a week. But I think that is just me - some people don't have that at all.

It did affect my eating. The swallowing pain came back and certain foods that had not been a problem became a problem again. I was very sensitive to hot (temperature) foods. Cold too. I even drink tap water at room temperature. When I saw the doctor on the 13th I asked if it was unusual for my mouth to still be sore. He said the post-radiaton tissue in the throat heals slower and that it would take 3 to 4 weeks to get better. This past Thursday was three weeks and he was right. It was noticeably different this weekend and I finally feel I am back on track. I find that it helps to take some Ibuprofen before a meal of real food. You never know what ingredient or spice is going to cause some pain, and that blunts it or prevents it.

I hope that helps. If you have a specific question just let me know.

Dan
_________________________
Dan (57)

SCC Stage III tonsil, BOT and 3 nodes, T1N2bM0. Non-smoker, and social drinker. HPV 16 confirmed. Tx started 8/22/11 and ended 10/7/11 - Cisplatin x 3 with concurrent IMRT x 35. No PEG. PET and CT inconclusive Jan. 2012; BOT and tonsil biopsy 3/1/12, all clear.

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#147475 - 03/26/12 03:32 PM Re: Symptoms of recurrence [Re: DannyJ]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4762
Loc: Toronto canada
Hey Danny awesome in the all clear!
_________________________
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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#147487 - 03/27/12 03:15 AM Re: Symptoms of recurrence [Re: Cheryld]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 792
Loc: NY
Thanks Danny. They ended up saying the spot was only inflammation. I'm not 100% comfortable with no biopsy, but Kevin and his doc agreed so I stayed out of it. We go again in 3 months....
Thanks again.
_________________________
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 10/2012

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#147585 - 03/30/12 03:00 AM Re: Symptoms of recurrence [Re: KP5]
DannyJ Offline
Member

Registered: 08/03/11
Posts: 15
Loc: Buffalo, New York
You have to trust the instincts of the doctor who has seen so many patients with so many different manifestations of the disease. Most doctors don't take any chances or recommend any risk when there is ambiguity, so I have to assume the doctor was pretty confident about it being just inflammation. I'm glad Kevin does not have to go through it even though it would have given you peace of mind to do a biopsy and get a good result. I hope you can still have peace of mind until the next round of tests in 3 months.

Dan
_________________________
Dan (57)

SCC Stage III tonsil, BOT and 3 nodes, T1N2bM0. Non-smoker, and social drinker. HPV 16 confirmed. Tx started 8/22/11 and ended 10/7/11 - Cisplatin x 3 with concurrent IMRT x 35. No PEG. PET and CT inconclusive Jan. 2012; BOT and tonsil biopsy 3/1/12, all clear.

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