| Joined: Apr 2012 Posts: 47 "OCF across the pond" Contributing Member (25+ posts) | OP "OCF across the pond" Contributing Member (25+ posts) Joined: Apr 2012 Posts: 47 | Hello Brian, I am 53 and live in London.This site has been a massive support and boost to my handling the news I have cancer in my Lymph node. after 6 or 7 usual prelimanry tests it looks like HPV on tongue may be the primary. This site is so simple so supportive in content and really settles many of my initial questions. I will let you know how the British NHS national health services looks after me so far I have been impressed. I have no pain or discomfort (as yet) but realize I am going to have to get worse before I get better. Daft question if I start trying to get fit jogging cycling am I going to drain all my energies while recieving the usual radiation and chemo?? cheers all Keith. PS. I am intending this as a first post were does it go??
Last edited by ChristineB; 05-08-2012 05:18 PM.
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Hi and welcome to OCF Keith, I will only answer your PS. The best place to start is always with your own post on Introduce Yourself Forum then select New Topic and away you go. You may even want to copy and paste some of this one to get an answer to your questions. Look forward to seeing your own post there Cheers Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | 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 | Keith, I have moved your post to the appropriate location.
Welcome to OCF! During treatments its very important to maintain your weight. Radiation with chemo will progressively get more difficult and zap your strength. Its ok to exercise in moderation. While going thru treatments, nutrition and hydration are very important. If your exercising will be burning calories then you may want to slow down until you are recovering.
Good luck! 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) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Keith,
Read my Signature Line below. I pretty much stopped all cycling during Tx and didn't start back up until at least 4 months post Tx. Each of us can be different so just go with what your body says. Watch the weight. I didn't have any to lose (the first reason I decided not to exercise anymore)but still ended up loosing 30% of my body weight.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there and welcome... I'm assuming you have base of tongue cancer... not oral tongue based on your reference to HPV, and the lack of surgery.... I too used to exercise a daily, and tried to maintain this until about week three. I am now back at yoga (though I've exercised on and off for the last 8 mos.) I'm not as diligent as I used to be but that's because of my diet. I eat no bread and no sugar not animal product and very little processed foods. Because of this I'm at the low end of my weight scale. But do it as long as it doesn't compromise your health... Gyms are full of germs, biking is definitely better, but at some point you may not have the energy. One study I did read was that people who walked at least once a day (I walked my dog twice) had a better survival outcome. I think it has to do with O2 intake. Good luck - it wont be easy but you'll get through it.
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
| | | | Joined: May 2012 Posts: 31 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2012 Posts: 31 | Hi Keith....before I started treatment, I walked/ran/played with my dog approximately 3 to 5 miles a day. I was in good shape when I started. This has widdled down to maybe a mile a day, broken up in three play periods...and I'm only finishing week three. I think it's good to go into treatment in good shape, but I have no illusions that once it's over, it's going to be a decent amount of work to get back to where I was.
For the time being it's all about feeding myself, hydrating myself......and sleeping when my body calls for it. No more pushing myself thru "tired"....I just take a nap (we're healing while we sleep...I truly believe that).
p
Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.
| | | | Joined: Apr 2012 Posts: 47 "OCF across the pond" Contributing Member (25+ posts) | OP "OCF across the pond" Contributing Member (25+ posts) Joined: Apr 2012 Posts: 47 | I hear you guyd loud and clear. I am up for a initial Chemo prior to a full 30 days rad with chemo. So maybe I can do a little gentle exercise as I have nice parks and things. For A guy with no pain and no discomfort just a lymph node the size of a large testical. Having to steady myself for serious pain and discomfort for the greater good this sight is a god sent. PHrannie I Got on the treatment train with * good teeth removed today. Bu as a half full as opposed to half empty guy. When the Chemo DR asked if I wished to make a deposit regarding future Babies. I turned to the wife as my primary care giver and said "will you help me with that" and she says Iam perfectly capable of taking care of that myself. Suggesting I may have a history? Anyways the Dr chuckled when I asked if I could make a cuople of deposits just to be sure. I am sure your dog will be a good Buddy. David CPA I am pretty stocky so reckon I will manage a life affirming mini Triathlon prior to my chemo and rad I might even raise a few Bob for research. LOL I am making a nice pirates neckless with my eight good teeth. Why am I getting aggressive rad for a small T2? why not a little lazer of the tonge and out with the sole lymphTesticle sorrt node in neck. Any thought any dark humour greatly appreciated.
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Hi Keith - love reading the humorous side, that will stand you in good stead. As I said to a good friend before I started RT "If you ever stop joking about my cancer I'll stop dying and drive over to your house and kill you."
Far as I know they want to zap you conclusively to eliminate any microscopic cells that might be floating around in the general area. In my case they did surgery to remove the walnut-sized node and a second malignant node plus all the others in the area first, then I had the radiation.
I was pretty knocked out by the rads and spent the better part of 6 months flat on my back. I was in decent shape... but guys like you and David CPA had me beat. I have a feeling your recovery back to full strength will be quicker.
Keep up the black humor! Or even humour....
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | http://rdoc.org.ukKieth,welcome. Here's a link to the 1st oral cancer site I found which is in the U.K. Both sites are wonderful and some peeps are members of both. It may be helpful with dealing with your healthcare system.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Apr 2012 Posts: 47 "OCF across the pond" Contributing Member (25+ posts) | OP "OCF across the pond" Contributing Member (25+ posts) Joined: Apr 2012 Posts: 47 | Hi Deejer47 Due to start Chemo in one week,Cyspatin 6 weeks then Radio Chemo 6 weeks. Liked your post short and sweet with a good outcome. Hope things go as well for your missus as they have done for you. What do you know about Blue Scorpion Venon? The UK site should stop me getting confused about dates.
Ta
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
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