| | Joined: Jul 2014 Posts: 5 Member | OP  Member
Joined: Jul 2014 Posts: 5 | Hi,
I am new to this forum. My husband had a tonsil biopsy yesterday in Boston. The results won't be back for 2 weeks (Yikes). My husband has Chronic Lymphocytic Leukemia and I'm wondering if anyone else on this site has had tonsil cancer as a secondary cancer to CLL. If so, what treatment option did you choose?
Thank you in advance for sharing.
Karen
husband diagnosed with SCC, HPV 16+ Stage 2/3 in July 2014(tonsil, BOT, some soft palette)
No nodal involvement
Completed 36 Rad and 5 Chemo (CarboTax), Oct. 2014
Underlying Leukemia (Chronic Lymphocytic Leukemia), Diagnosed Feb. 2013
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Welcome to OCF! Im sorry but I dont remember anyone here mentioning anything about CLL. But that doesnt mean there arent other out there. Hopefully the biopsy will come back negative for cancer. If not you are in the right place for info and support.
Best wishes!
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: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Mar 2014 Posts: 286 | Welcome Karen. I've never heard of a tonsil being a secondary. Please let us know how you go, hopefully its nothing.
Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Karen - Welcome to the family. I can't help you with the CLL, but I did have tonsil SCC (squamous cell carcinoma). In my case there was no lymph node involvement so all I got for treatment was 35 doses of radiation, that was about 7 months ago. You can read up about radiation treatment on our website pages or hear it firsthand from people who have been there in our Currently in Treatment forum. If you can, ask the lab to do the pathology testing for HPV16 virus. There's a little psychology to get past if positive, but the bottom line is HPV related oral cancers respond better to treatment and hence those who have it usually have better treatment outcomes. Of course, we all hope it's not cancer, but if it is, you have a whole army of people behind you supporting you and your husband through this journey. take care, let us know how it turns out regardless of outcome. Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I also don't recall a tonsil ever being a secondary. Keep us posted. We all hate the wait but I must say 2 weeks is unusually long.
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 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | The majority of head and neck cancers are SCC, Squamous Cell Carcinoma, the same with the tonsil, although, lymphoma can also affect the tonsils, a lymphoid, and know of someone who had it. They did a tonsillectomy, radiation, and then chemo later on used for their type of lymphoma. I also know of a child through their parents foundation that had Burkitt's Leukemia in the tonsil.
Good luck, and hope it's nothing.
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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