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smile yeah! smile


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
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This certainly helps to explain my husband's BP issues over the past few years.

His dysphagia issues have gotten to the point where aspiration pneumonia (his 3rd episode in the last few months) landed him in hospital ICU. He's back on PEG tube feeding after all these years.

At 5 years out, when we asked the radiation oncologist about long-term effects, all he said was "increased risk of lymphoma at around 10 years out." Did they not know about all the long term effects of H&N radiation back then - or did he think he was being charitable by not telling us what was ahead?


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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Thank you so much for this new forum, and THANK YOU for the information about blood pressure. My doctor and I have been stymied as my blood pressure has gone down while my weight has gone up (slightly), and my activity level has remained static.

In 2004 I had "old style" radiation to the left side of my head/neck, and in Jan 2008 I had IMRT to the right side.

I am alive. I am very very thankful and now that I am 5 years out from my second cancer - 9 years from my first, I am feeling as well as I ever have and am working at 'moving on past this' but the side effects keep me in the cancer realm.

I very much look forward to participating in this lucky forum (perhaps the name of the new Forum could contain a word to indicate how lucky we are).

I have copied the article about B.P. and sent it to my doctor. At this point I am taking about 1/2 of the b.p. medication that I was about 3 years ago and we had no idea why. THANK YOU FOR THIS. I don't know what we will do with this and how to proceed from here but it is great to get a handle on the WHY and to know this is a relatively common side effect for the fortunate ones.

Donna


Donna,68, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing mechanisms so am now a “for life” tube feeder. I am working hard to get used to that while fulfilling my dreams. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Excellent addition. Definitely should help motivation to change and not stay stuck.


KC


9 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
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I look at what radiation has done to me and while I wonder why no one told me what to expect, I realize there are three issues at play.

1). I was Stage IV - twice, why talk about long term issues when they don't know if I will be here to complain about them.
2). Every cancer patient has different bone densities, cancer locations and other physical attributes. They cannot predict how someone will react.
3). I had radiation TWICE, and there are no studies, etc on this. Things like permanent fatigue are common amongst the few patients my R.O. Has treated twice, but other than that complaints are apparently all over the place.

Bottom line is that I would not have changed my course of action even if they had listed every possible problem. I am happy to be here to complain!

I would like to hear from others with long term rad tx side effects.


Donna


Donna,68, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing mechanisms so am now a “for life” tube feeder. I am working hard to get used to that while fulfilling my dreams. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Brian,
One caution I might throw out there is use definitions for medical terms for those of us without the medical background. I know I have issues but am not at all sure what the doc's would call it (or what you just described you have issues with). If you include definitions we may recognize our issues and hopefully explain to the doctors what we may have, too.

My biggest help through the last few years was going through a "Swallowing Boot Camp." I thought I needed my throat dialated again but what was happening was food was getting caught up on a shelf in the back of my throat. By working on strengthening my tongue muscles and forcing swallowing by not relying as much on washing down my food I was able to work around this issue on some foods. Over the 11 + years and washing my food down with water my muscles were not as strong. I no longer panic that I may be chocking and work on forcing my muscles to work harder. Took some of the fear away and one less surgery. - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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Kris - Maybe this recently updated list will help:
http://web.utk.edu/~aalix/abbreviations2.html

Looks like you need to copy and paste the link into a new window.

Last edited by Anne-Marie; 10-21-2013 01:14 PM. Reason: checking link works

Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Hi Kris! Hope you are doing well.

I am curious about your boot camp. Where was it. This is what I have been looking for but my SLP says if I am not aspirating all the team nothing can be done.

The baroreceptors are sensors in arteries, veins, etc. that relay information to the brain. Veins are actually smooth muscles. Compromised nerves, brain stem damage from fibrosis can affect the entire baroreceptor reflex response by increasing or decreasing the blood flow/pressure beyond what is necessary or a reduced nerve signal response by the autonomic nervous system.

Radiation can damage any muscle in the body by restricting blood flow are scarring in the nerve casing. These along with myelitis, inflammation of the spinal cord, are the main causes for most neuromuscular problems we face lifelong. Muscle weakness whether eating, breathing, voluntary or involuntary movements is caused by vascular, nerve myelin damage or myelitis reasons.

A very key piece is the nerve sheath is a fatty layer around the nerve. One theory is it gets burned up during radiation and the body floods the area with cortisol and scar tissue. Low fat or no fat after treatment can easily exacerbate symptoms.

Ed


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
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"OCF across the pond"
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Thanks Kris, you give me great hope with my swallowing. My problem is just as you describe, food getting stuck on a shelf, and my muscles not being strong enough to force food down so I have to cough it back up, unless it is soft and slippy. I am 22 months out from treatment and have had very little improvement for many months so I was beginning to accept that it probably wont get much better. Then at my last checkup earlier this month a new doctor told me that there was no reason why I should not improve providing I exercise the muscles and force the food a bit (he was the first doc to tell me this!). So since then I have made more effort and I think there may be a slight improvement already. I realise that I have got into habits of eating only easy stuff, so not making the swallow muscles work. I think early on I got so disheartened it was easier to avoid the upset. Swallowing boot camps should be available for all!



Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
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I'm 3 days shy of two years cancer free and still have minor issues. When I get choked it's usually right after doing something stupid like a huge bite, no water (or beer) or getting cocky and trying to eat something I KNOW will give me trouble. Two things that have helped are what I call the weight lifters swallow: breathe in and then swallow overly hard like you're forcing something down. Also a slight turn of the head to one side sometimes helps.

Good luck and keep fighting!!


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
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