| | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP  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) | | 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) | | 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.
ChristineSCC 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  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP 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) | | 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 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) | | 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) | | 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.
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 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 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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Well my friend has now finished his rad and they didn't do his last chemo. Had a pretty rough time. was hospitalized twice with fevers of unknown origins and had to get a PEG midway thru as he had already lost 25 lbs of non existent "excess" weight. Only ended up 10 lbs light so the PEG worked. Problem is he's back in hospital with a fever of unknown origin which his rad doc tells him that is common for this type of Tx.
Now in all my years on this site I really don't remember any, although that doesn't mean any, that have had as a common problem of this Tx "fevers of unknown origins".
Anyone else experienced this side effect? If so what did your doc say about it?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hello David:
I have never heard of anything like that either. This may sound like a dumb question, but have they checked him for an infection, which the most common symptom would be a fever. Not sure how they would check for infection (blood work?), especially since they probably wouldn't have a clue as to what area is infected. Surely they would know how to check though. I wish him luck and will say a prayer for him.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | David,
Bill had FUO the 5th week of treatment and was hospitalized. My understanding is that neutropenia (and he was very neutropenic at that point) will also create a fever so that complicates matters. He looked and acted very sick while in the hospital but once released seemed to be so much better than the previous weeks that I think he did have some infection that they did not find (perhaps mouth sores.) Between the antibiotics and the constant IV drip of fluids he did nothing but get better from the end of treatment on.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Julieann,
Of unknown origin means that they were not able to find a cause but they did try according to his wife.
Deb,
HEY YA'LL & tell Bill I said Hi.
Again they have tested for likely causes of fever and found nothing so could the lack of white blood cells cause a fever without an infection?
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 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Hi David,
I had never researched the statement that the ER doc made to me about neutropenic fevers, i.e. that the neutropenia might be the cause in and of itself, but when I just now tried to find any reference to that...most refer to an "unknown infection" and the body being incapable of producing the normal response (except fever) which is an elevated white count. So, I think I may have mispoken unless someone can find information to the contrary. Like I said, Bill perked up so quickly after his hospital stay and the last three radiation treatments that I have to believe that we either had a miracle here or his response was due to intervention with antibiotics and IV fluids.
Where is Charm and all his wonderful research when we need him?
Deb (Bill says Hi back!)
Last edited by debandbill; 09-19-2011 05:02 PM.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
