Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
OP Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
A resident of my City came to me last week complaining of a sore throat and ear aches. Non smoker, light drinker. Had them for a few months. Had been to see his current cancer doc (lymphoma in remission but on chemo) who referred him to an ENT. ENT scheduled a bio late July. I suggested we try and get him over to Moffitt ASAP. Got him seen the next day, last Thurs. Dr P said the BOT tumor was about the size of a QUARTER so he fit him in and did a PET Mon (no apparent mets) and did the bio today. Results SCC positive. I have only talked to his wife since apparently he had problems with the anesthesia and is still under and she only talked to Dr P via phone but one thing she said he said that stood out was "definitely treatable and maybe curable". I have known Dr P for 5 years and he is a well respected H & N Surgeon at Moffitt. I'll know more when I can talk to the Dr but that's an odd thing for him to say.


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: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
Your a good man David. Helping them get into the right place and started says a bunch about a person.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
You are a huge asset to your community! Glad to hear the person you took to Moffitt has an excellent chance for a full recovery.


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
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
OP Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Christine,

See that's the thing, usually BOT tumors are associated with HPV which brings a higher success rate but they are typically painless and very small and tend to only be discovered by a swollen node or 2. Here we have a rather large (quarter size) painful BOT tumor with no apparent nodal involvement in a person who otherwise fits the HPV profile. To further peak my curiosity Dr P, who previously told us the bio would only take a hour, raised his estimate the day before the procedure to 2 1/2 hours. Couple that with Dr P's comment about "maybe curable" and I am anxious to talk to Dr P.

Brian am I missing something?


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: Apr 2009
Posts: 329
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Apr 2009
Posts: 329
Nice job David keep up the good work!


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
OP Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Just got off the phone (about time he called) with my new friend and he informs me that he spent the night after the bio in ICU and still hasn't been told why. His wife is suppose to call me when she returns from ???. Even today he's kinda of out of it due to the pain meds.

Man it's tough to be a patient advocate without all the facts! lol


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: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
You're a good man indeed, David.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
I second that David2.
Davidcpa: It is tough, but you are a patient, patient advocate. smile


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
OP Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
OK the bio came back SCC+, Stage II to III, with no apparent mets. He went back to his old cancer doc who wants to start him on chemo (his wife couldn't recall the names) beginning one week prior to rad and ending one week post rad. Never heard of that and I'm still trying to find out what chemo(s) they plan to use. He's decided not to go to Moffitt for the rad; 45 miles one way and all that, etc. I'm still pushing them to get tested for HPV. We are meeting tomorrow with Dr P at Moffitt where I hope to learn a lot more. He's in constant pain and has already started supplementing his diet with VHC. I hope this goes smoother than I suspect because I'm beginning to get a bad feeling.



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: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
OP Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
HPV+

Started Chemo yesterday, weekly Cisplatin and Taxol.

Radiation starts next Monday or Wednesday.

Still don't know why they started chemo a week before radiation?

Still don't know why his chemo doc is going with Cisplatin with an HPV+ test and his history of hearing damage?

He's got his Fluoride trays, had his TSH tested and had his mask simulation and is already drinking VHC so considering he was just scheduled to have his original biopsy July 17th he's so way better off.


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.
Page 1 of 2 1 2

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5