| 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 | Yes but they have rubber on the blades.
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: 225 "OCF across the pond" Gold Member (200+ posts) | "OCF across the pond" Gold Member (200+ posts) Joined: Jan 2009 Posts: 225 | Hi Tristeve,
it took Martin months to get his energy and stamina back. But what started his recovery was his daily walks up and down the steep High street. He'd drive to the town, then walk all the way down to the bottom (1/2 mile), then back up to the top with a break to chat to his friend the security guard in the Pound Shop, then up to the top where he had a Latte as a reward. The street is a big hill so the return was quite challenging! He could hardly do it at first and was breathless, but after a few days and weeks of this he noticed improvement. You could borrow a dog if you don't have one and take it for a walk. The consultant told us, walk walk walk and walk and your energy will come back, don't forget your water bottle though. After a couple of months you'll be able to cycle. Cecilia
Girlfriend to Martin 49 years old at diagnosis Diagnosed with SCC unknown primary June 2008. Cancer found in single node Stage N2A (3 to 6cm). Tonsilectomy 16th june, Radical modified neck dissection left side 30th june. 30 TX radiotherapy ended 9th October First comparative study scan came back clear
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Hi, Forum, I was diagnosed with oral cancer in May, and had surgery on my tongue and lymph glands right away. I spent the summer going through radiation and chemotherapy. I have never smoked in my life, had an occasional glass of wine in the evenings, and was negative for the HPV. Go figure! This has been the hardest thing that I have ever done. I had never been in the hospital except to give birth, and was rarely sick. I am back to work now, but still have problems eating and with fatigue. I am also going to physical therapy for my shoulder on the side where I had the surgery. I am having my PEG tube removed on Friday (yea!)that will make getting dressed a lot easier.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Hello Steve..and Zenga,
I myself suffered for well over 16 months with fatigue and weakness after rads/chemo and surgery. My medical team had chalked it up to CRF (cancer related fatigue) and I took that as what I suffered from. My quality of life was horrible, I was an extremely active person before cancer (athlete, wrestler/grappler/boxing runner, weight lifting etc) and most days I could barely get out of bed. I started going to physical therapy but found the 15 minutes a day would put me down for days on end. I tried several methods to overcome the physical fatigue and weakness (dosing oxy, energy shots, etc..) and had some results but nothing sustaining to get me back to my old self.
I recently stopped using my opiate pain medication and low and behold, my energy levels went way up and I started to return to myself again. I was on fentanyl, transdermal patch for pain and dialed as high as 200mcg/hr but had gotten down to 50mcg/hr when I quit. The thing with the transdermal patch is it is actually activated by heat. The hotter your body tempature or the hotter the patch gets the more medication released into your system. Of course you won't feel this immediately...but you will feel it the day after and for a prolonged period of time as the meds pass through your skin into your blood stream.
Opiates, especially fentanyl, cause fatigue, weakness, depression among other nasty side effects. It is great for pain and has a purpose, but also doesn't come without a price.
If you are still on pain meds this may be your issue. Also CRF could still be the cause. For me I lived with the crf explanation...and when I got off the fentanyl it all came clear to me.
hope it helped, good luck and keep your spirits up
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Sep 2009 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 60 | Hi, and welcome to the group. I was diagnosed in March, so I am 2 months past where you are. I did not have surgery, but I have just over the last coule of weeks gotten to where I can eat most thing well. My jaw still gets tired from chewing, and my mouth does not open very far. I lost a lot of strength and stamina. I have begun taking longer and longer walks to build back up. It takes a while, give it time.
Flip _________________________________ Age: 54 SCC Tonsil + 3 nodes Radiation and Carboplatin Treatment 4/1 - 6/7/2009 No surgery, no PEG Never smoked Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years) CT 11/4/09 No sign of envolvement in Tonsil or nodes
| | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | Welcome, Tristeve. I too had difficulty swallowing thin liquids. My speech therapist suggested a product called "Thickit" available in most drugstores. Give water the consistency of nectar and doesn't taste terrible. May help as you really need to keep swallowing stuff or the muscles forget how.
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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Have any of you had problems with numbness in your feet? I was told that could be a side effect of the chemo. My Dr. said that I may have it for a while.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | That is so coincidental! I saw my oncologist yesterday. He said the nunmbess was due to the chemo. I am 10 weeks post tx and have experienced numbess in my hands and feet. It was very bothersom a month ago and has gotten quite a bit better but I still have numbness in my feet. BTW I hax 8x cisplatin and eubutrex
Steve
70 male, athlete...again SSC of undetermined orgin , early july 09 40 tx radiation, 8 chemo cisplatin and ebuterx finished TX in mid Sept 09 Clear at the 6 year mark! Back to swimming, biking and running! just a tad slower never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Has anyone else had this, and, if so, how have you relieved it? My Dr. basically said I might have it for a while, and there wasn't much I could do about it. I do try to prop up my feet when I can, and that seems to help somewhat.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | 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 | Thats an unusual side effect. It happens to me too. I never connected it with my cancer treatments. 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 | | |
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