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Saxicola have you looked at the iSwallow app. It has all the swallow exercises the SLP would use. There are videos so you see how it is done. I just try them and the one that is the hardest is that way because something isn't working right and I do that one throughout the day for a while. I could not swallow any food for weeks a year ago and restored it almost completely.

The "shelf" is probably the throat pockets that are supposed to prevent food from going into,your airway. Food has always stuck there since halfway through radiation for me. I feel like a cud chewing cow or rather bull sometimes hacking it up over and over till it goes down. I have learned to breath then swallow.

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!
Joined: Feb 2010
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Thanks for creating this forum. My husband is an almost 7 year survivor of stage 4 oral cancer. He underwent surgery to remove a neck tumor, radiation and chemotherapy. At my husbands annual exam and blood test we were informed that he is deficient in Vitamin D. He immediately started the oral Vitamin D otc as recommended by his Dr (general practicioner). The next blood test continued to register the Vitamin D defeciency. His Dr put him on a once a week Vit D2 50,000 units tablet and he will have another blood test after 4 weeks of this. My husband is a very healthy eater, gets plenty of sunshine and exercise and we can't understand the vitamin D issue. Has any other survivor experienced this?


48 year old caregiver to husband Rob, Nonsmoker,nondrinker and a past survivor of recurrent head and neck cancer. 3/2007 DX T2 N2b MX stage 4 Squamous Cell Carcinoma of oral Cavity. Tx right side neck dissection, radiation and chemotherapy completed August 2007.
Joined: Apr 2012
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"OCF across the pond"
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Hi Ed, yes I tried iSwallow awhile ago and it corresponded well to the exercises I got from my SLT, but over the months I slipped out of doing them because I wasn't seeing any results. However, I will have another go and see if I can be a bit more determined. I know what you mean about the 'chewing the cud, my added problem there is no back teeth so it can be a long process! Sally


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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Thank you Brian for this forum,and for all you do for all of us. I haven't posted for years, but looking for some answers I have ended up back here. I am 7 years since my treatment. I am having problems with BP, and have an MRA scheduled for this Monday for stenosis in carotid artery. My bloodwork has been good, so I was curious why this was happening. I even asked the doctor if it could be related to radiation I had received. He just said that was a good question. Reading your post and doing some research has helped me to see that it could be a result of treatment. I'll know more next week, hopefully. But wanted to thank you for sharing.


Dx3/20/06 SCC,BOT,1N Tx:5cycles Carbo/Taxol, Rad:35x, brachytherapy:6x, completed 7/24/06
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If your blood pressure is all over the map, even though you are sitting still, that is one issue some of us have. The more common issue is chronically low blood pressure and faintness as a result. Two contributing facts are scar tissue formation in the carotids (no good solution as stenting them does not have the same impact as stenosis from fats) and the destruction of the small nerve fibers near the carotid notch which are the sensors that tell your body what your blood pressure should be. This is a many years out of radiation issue, and highly dependent on number of grays and how heavily this area got nuked. The resulting syndrome is called barrio reflex disfunction. Most cardiologists have never even heard of it. But it is peer reviewed published on, and in the world of head and neck cancer patients, fairly well understood that it can happen. Again no workable fix that I personally have found.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Yep, my mom can relate to blood pressure issues and faintness. She's been dealing with that for about four years. Swallowing, burning mouth and dental issues due to radiation are chronic, nerve and hearing problems from chemo are prominent and the latest issues include speech problems and an inability to eat orally resulting from a partial glossectomy. I'm not gonna sugar coat it, it sucks...but my mom has a life that she is grateful for and I'm thankful to still have her.

No question it's an arduous road, but, as noted, the option was to not be here. As a result of your battle, Brian, you've created a wonderful organization that's helped thousands. That's a pretty amazing thing. Thank you.


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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Since today is my son Paul's 7 year anniversary being cancer-free, I asked him if he had anything memorable that he wanted me to pass on to others, here. He said he had nothing inspirational . . . just lots of gripes which I quote here:

"1- teeth brushing makes me gag
2- shaving is horrendously inconvenient around scars and with stubble that grows in different directions.
3 - teeth damaged by enamel loss are wrong shape to bite your nails with.
4 - you'll always wonder if the cx or the treatment are the cause of any health issue that you deal with later in life."

I can think of some answers to the above, but I think it might be better if it comes from someone who has had similar issues or the CG of a long-term survivor.





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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Re the Baroreflex dysfunction. This hit home as it must be what Bill is dealing with. We have had every test to make sure it is not something else and nothing has been conclusive. Glad to know that there may be an explanation since his symptoms follow exactly the known results of the baroreflex failure/dysfunction. Of course, none of his physicians have brought it up.

Thank you Brian and OCF...once again you are my resource and support system.


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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Hi everyone.
I'm 5 years plus after treatment, which included chemo
( 2 rounds cisplatin ) and 32 radiotherapy @ 60Gg.
No recurrences.
But as the years go by, I just feel worst and my overall health state seems to worsen every other month.
The pain to the neck area is bad, and since I had a resection of a important group of muscles on the right side, I have a permanent contraction of the shoulder muscles. I developed a bad cough and mucous galore. Experience tinnitus and mild neuropathy on one arm.Lets all share and learn.

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Hi to all.. I have been absent from board for a long time. I too understand the long effects treatment has left me with after 8 years. Thanks Brian for making this new area for all of us to learn from.

My new challenge is jaw decay, or dieing, infection. Looking into this now. Seems to be some confusion on what should or should not be done for now.. I find it very interesting that my dentist is concerned and My new surgeon is not to concerned. Leaving me really wondering. I hope to make contact with my original Surgeon and see if I can find out what really should be done.
Well, that is it for now.. take care all


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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