| | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Yoga is harder than people think. My Rheumatologist doesn't let me do yoga ... to say nothing of aerial yoga. Maybe you should try something safe like ... base jumping!
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Waiting is awful. Last time I had such a knot in my gut that I Googled "how to wait for cancer results". Amid all the stuff I found there were some gems of wisdom. I can't really explain but one was a sort of affirmation you started every morning with. Worked a bit for me. Then I decided to splurge and bought myself an iPad I didn't need and couldn't really afford. It turned out to be beneficial because at the same time I joined an iPad class. the class wasn't all that useful but it was fun and I was suitably distracted.
Perhaps you should give the silks a rest for a week or two!!!
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | Hoping for some good news!
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Me too .... ergh...
So I have been taking my dogs on this hike a few times weekly... usually about 4-5 times depending on my schedule. I've tried asking my kids who are adults to do it but with limited success (even though one of the dogs - the big one - was adopted by my adult son, and is supposedly his dog) I tend to take them to the leash free and hike with them. There are a few near my home that are great for this kind of an outing. This is far easier than walking them on a leash because the BIG ONE - is a very enthusiastic puppy - and is 110 lbs minimum. He literally drags me around the block like a rag doll (also very hard on the neck) Anyway - I've been obsessing about this node. So yesterday after the hike (about 2-3 kilometers) I I put my hand back and noticed it was firmer and a tad bigger...
This morning it seems smaller. I think it may have a lot to do with exercise - I am not 100 percent by any means - but even when I was going the gym and doing the elliptical machine which had minimal upper body usage I would still feel my neck stiffen and tongue swell.
Weird.
I'm a tad less panicked - but still worried. Does that make sense? It's a head game - I suppose because I am thinking one thing but at the same time doubting it.
And yes Maria... this yoga is actually a little more strenuous because when you are doing - say planks - you're up on your arms but your legs are not stable because you are hanging from something. My shoulder will never be perfect - and I have noticed it's weaker (only when I exercise)
SO I am hoping this is what it is all about. Maybe I've injured it. So I'm not yogafying until I talk to dr. Irish.
hugs y'all...
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Cheryl,
I hope it turns out to be nothing and the waiting is just awful, isn't it. Pre-cancer this wouldn't have bothered you at all, but now every little bump could mean its back.
I had a node pop up in my neck a month ago (same side as my cancer), and of course I panicked. I was able to get an appointment with by doctor at Hopkins a few days later. He did a physical exam and had an ultrasound done while I was there. Now he feels confident that it is "just" post radiation damage and gave me a very reasonable explanation as to what it is. I really trust him, however, the worry is still there. I don't think it ever goes away.
Were you able to get an appointment with your doctor? Hugs and prayers coming your way.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there my appointment is tomorrow... And you're right prior to the cancer I wouldn't have thought much of it. Now - I noticed it Monday evening. Went to my dr. Tuesday - he checked my ears. Said they were okay. So then I began to worry more. Worried all Wednesday and Thursday - Friday I have a headache, sore upper teeth and pain behind my eye on the same side... Light goes on... SINUS something. So I invested in Tylenol cold and sinus, popped them every 4 hours - my head is draining etc... Node is almost back to normal today. I am still seeing my specialist tomorrow - but I think it may have been my sinuses. My upper teeth always ache when I have a sinus issue - because I still have an impacted wisdom tooth on that side. So when my sinuses act up they push on my wisdom tooth and that in turn pushes on the roots of my upper molars... Happens once or twice a year. So I'm cautiously hopeful.  thanks all - I will let you know what he says - but as far as I know cancerous nodes tend not to deflate. so maybe I'm okay... Hugs and blessings to you all.
Last edited by Cheryld; 04-26-2015 08:22 AM.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | So specialist and his fellow say they're not concerned its a normal node... and it is back to a reasonable size...thank goodness. It's not as small as it's counterpart on the other size but I still have a bit of a headache on that side, and my molars are still wonky (i've weened myself off the cold and sinus and the node has stayed the same or actually gotten a bit smaller.) I am going to start taking it again. My GP decided to send me for regular tests (bi-annual physical - YAY!!!) so I see him thursday for the results of that. If my sinuses haven't improved by then I'll ask for antibiotics for them. ERGH...
anyway... it looks as though all is good... ish. hugs to you all you are amazing.
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 |
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | There you go. What a relief.
It is so important to stay vigilant, well done you.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Whew - REALLY glad to hear your news, Cheryl. Happy Dance! 
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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