| | 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 | Jon, Again, let's wait and see what the path report says. You will have time to make the necessary decisions. A few things though: HPV can only be tested from confirmed Squamous Cell (SCC) cancer cells but a typical HPV profile, if you will is: 1. white male 2. Non smoker 3. Multiple sexual partners in one's lifetime 4. Base of tongue or tonsil Primary 5. Met to the nodes 6. College educated 7. Handsome (that's my unbiased addition)lol The same study concluded that if you fit that profile, your chances of your SCC being HPV+ was appx 70%. No Cisplatin is still the poison of choice even though it's cousin, Carboplatin, seems to be just as effective but without the fear of permanent hearing loss. RE ND and tongue surgery, I would need more info before I would make that decision....like DO I HAVE CANCER for starters.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2009 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 53 | Yes I am all the above so I�m sure I have HPV. I am very fit and never smoked and even feel great now, but after I have taken the poison and been zapped by the Chemo and radiation, I have no idea what I�ll feel like and being on my own how will I eat and look after myself, if I do go back to the Uk, Yuk! hOW DID YOU FEEL WITH THE CHEMO AND RADIATION?
Last edited by Teacher jon; 09-27-2009 08:26 AM.
"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | HOW DID YOU FEEL WITH THE CHEMO AND RADIATION? Short answer....The worst in my life! Long answer.....Let's wait and see if you have cancer and then, and only then, you can be tested for HPV.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 253 | Jon:
Your oncologist should already know about these drugs. If he doesn't, please get someone else. There hasn't been much advancement in treatment for OCF until just recently. And that's only been improved radiation machines, and a couple new drugs. And any doctor who cares about his OCF patients quality of life should be pretty up to date on these things.
Concerning induction: Induction historically has been used for the most advanced OC cases Stage 3 & 4 with lymph node involvment. But now the treatment is used more frequently as it shows an improvement in survival rates and reoccurance rate. My tumor was large, but I did't have lymph node involvement. I still had to convince my doctor to do this treatment-showing him info I found on this web. I felt it was my life at stake, and I wanted the most aggressive treatment available.
Everyone's side effects are different. Some severe, and others, like me, breeze through, but doctor's have great medicine to help. They can also adjust the drugs if necessary.
Hope this helps
Sandyst
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Jon you will do fine on your own unless you have a mind set that you need help. I have been alone and survived it. I'm still alone and do whatever is needed to keep me up and moving. It is far better to have a caregiver at times but it's a doable proposition. The main thing is to never feel sorry for yourself but be glad you are alive and still kicking.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2009 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 53 | Thanks for your info, do you think that because my left hand jaw Lymph node is swelling and throbing some times its a bad sign that the cancer is a fast growing type, do you think the Node can still be shrunk now its growing and my BOT can be shrunk also with a chance of stopping the spead.
"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
| | | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | Hi, Jon,
My husband's cancer was in the tonsillar, base of tongue, pterygoid muscle area.It was pretty close to his vocal cords as well. All of these areas have squamous cells. He was stage 1Vb (based on size of tumor and areas affected) and he had 1 positive lypmph node and the possibility of a second. It sounded so serious but try to visualize it this way- the areas I have mentioned have similar types of tissue and the cancer doesn't say - oh, no- I'm on the edge of the tonsil so I can't go any further and need to stop (sorry but that is one way to think about how types of cancer that thrive in squamous cells don't "respect" the boundaries that we use to describe adjacent parts of our body). The more serious aspect to the spread of his tumor beyond the tonsil was that you couldn't simply take out the tonsil- so surgery would be very destructive to function. On the other hand, the chemo/radiation combo was directed to the entire area and he ended up not even needing surgery to remove lymph nodes. He did have induction chemo (as did SandySt and BobWhyte just to name two others) due to the size of the tumor and the belief that he might have a better outcome.
Back to your question above- lymph node pain and swelling is often one of the first major symptom that people with BOT and tonsil area cancer experience. Now that you are aware of symptoms, they will seem to get worse pretty quickly and waiting for treatment to begin is very scary. I thought my husband's wait was excruciating and worried about how it would affect his outcome. But I agree with what everyone has been telling you. Your cancer has been growing for some time and you now need to take the time to develop and find the best treatment plan and team that you can. You do have time to do this.
Take care- Sophie
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | Joined: Sep 2009 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 53 | Hi Guys,
Yes I have just had it confirmed, I have moderate squamous cancer of half the base of my tongue and I have a 50/50 chance of surviving for 5 years, as I�m fit and 64 the doctor says, I should be able to tolerate the Chemo, Radiation, treatment and I have to see the Radiation doctor Saturday, Im going to bed now and try to take all this in.
What now do you think, any advise it has not all sunk in yet, I don�t think and my lymph node is aching a lot and swelling.
Help!!! What do you think will happen from start to finish.
Kind regards
JOHN
Last edited by Teacher jon; 10-01-2009 08:20 AM.
"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Jon, sorry about the diagnosis, it stinks! Take to your bed today but tomorrow start rallying and prepare for battle.
Take a friend or family member with you to your appts because it's hard to remember everything they tell you. Write everything down, ask lots of questions. Are you going to a comprehensive cancer center? It also doesn't hurt to get a second or third opinion so you can make the best decision for you. Eat well, get yourself buffed up for the treatment ahead.
This will be the worst 6-7 mos of your life but then it will pass. Keep us posted. We're all here for you.
nancy
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hey John
well now you know.Everything i said to you before still applies.Are you coming back to the UK?
If you do if i am within spitting distance i will do anything i can to help.Rest for now and come out fighting.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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