View Full Version : NED!
Next month April 24th will be my 4 year anniversary of completing treatment for Stage IVa Head and Neck cancer.
As of today, I'm NED! (no evidence of disease). There are some physiological issues with swallowing that are side effects of the surgery and treatment but all is well. It just means I have to keep on doing the swallowing exercises religiously everyday from here on out. I have side effects as in neck pain and neuropathy in my feet but they're manageable with exercise and meds.
So... Next appointment with Radiation Oncology for a "scope, poke and prod" is in August and then one more appointment with Medical and Radiation oncology next year and I will be deemed "cured".
Throughout my treatment and recovery, the word "cured" was not used. It's always been NED. To hear the word "cured" is something I cannot put into words. I have a year to go but I'm, optimistic.
Positive thoughts
Catherine S
02-03-17, 22:05
:yesyes: that's great news fish. When you say you have to do swallowing exercises every day....are we talking food? Swords?
ISB x
Clydesdale Epona
02-03-17, 22:06
Lovely to hear Fishman x
i am extremely grateful of all the advice and support you've given me so far so i just wanted to throw in my gratitude :)
i'm glad to hear everything is looking good and i hope that they continue to
All the best :hugs:
I'm so glad to hear it :) especially the optimism! :D
:yesyes: that's great news fish. When you say you have to do swallowing exercises every day....are we talking food? Swords?
ISB x
I'm thinking complaints as I am an employee of the complaint shredding company :) The extra chewing and swallowing of paper product could prove beneficial. (keep on sending the complaints people!)
In all seriousness... there are specific exercises that are to be done daily in order to keep the 'ol "swallower" working. I have to admit I've slacked off a bit as I've gotten used to the way things are. There is a risk that years down the line the 'ol "swallower" could actually stop working and that's happened to survivors as much as 10+ afterwards. There are some that end up with feeding tubes. So, I have to do these on a daily basis and I'll tell ya... even for someone without an issue, they're challenging! I have real physical issues due to muscle removal in my throat and the radiation. It seems there is a pocket of sorts above my larynx that collects liquid and such. For now, my epiglottis is preventing things from entering my lungs but the possibility exists that I could aspirate liquids and/or food that could cause pneumonia so I have to practice these exercises religiously.
Falsetto Phonation or “Sirening” (alone in the car during my work commute is best ;))
Make a siren noise from a low pitch to a high pitch. Use a “ng” sound. Hold the pitch for 2-3 seconds. Repeat 10X, 3 sets, twice daily.
Masako Maneuver (this is HARD!)
Protrude tongue slightly between your front teeth. Hold tongue in this position by bearing down gently with your teeth. Swallow while keeping tongue protruded. Use this technique several times daily when swallowing your own secretions (water if you have no saliva). Repeat 10X, 3 sets, twice daily.
Effortful Swallow (This is HARD!)
Keep your mouth closed and the tip of your tongue elevated to your palate. Swallow as strong as you can, focusing on squeezing with your throat muscles (like you have something stuck in your throat and you have to get it down), repeat 10X, 3 sets, twice daily.
Mendelsohn Maneuver
Place fingers gently on your neck to feel how the larynx/voice box rises when you swallow. When you feel your larynx rise to it’s highest point, try to hold the larynx in an elevated position for 5 seconds. Repeat 10X, 3 sets, twice daily.
Positive thoughts
bottleblond
02-03-17, 22:59
My friend Fish....
Congratulations and very well done on being a NED!!. :hugs: You are a truly inspirational person and I think you are such a trooper for getting through that battle which so many unfortunately lose!.
I honestly think your positive thinking has played a huge part in your recovery and I'm sure you will continue to thrive. :flowers:
P.s...NED in the UK means a totally different thing so i'm so glad you are across the pond.
P.s (Positive thoughts always)
Lisa
xx
Catherine S
02-03-17, 23:22
Yep, the British NED is not to be trifled with!
But good grief fish, you're supposed to do these exercises every day? Who knew. Can I ask if any of this has impacted on your singing voice? Did your voice change much after chemo/radiotherapy?
Yep, the British NED is not to be trifled with!
But good grief fish, you're supposed to do these exercises every day? Who knew. Can I ask if any of this has impacted on your singing voice? Did your voice change much after chemo/radiotherapy?
When I say I have real life physical issues I mean it ;) 99% of the folks here have no idea what I deal with on a daily basis. The neuropathy? Think about feeling like you're walking on scrunched up socks. My feet are basically numb and I can't tell if they're cold. By the time I realize they are, they're blue! I've stubbed my foot and yeah, it hurt. But it's only when I see blood or it turns all sorts of pretty black and blue do I realize how hard I hit it. Then there's the "stabbies". It feels like you're being stabbed with an ice pick. Hurts like a MOFO! And the tendon in my neck? Since muscle has been removed, it seizes up like a metal rod from a sneeze or a cough or for no reason at all. It's a 9-10 on the pain scale and I just have to breathe and wait for it to relax. Fun stuff eh? Concerning my voice? I consider myself 100% back! It took close to four years but the stamina to do a full two hours straight and even sing falsetto is back 100%! :D The timbre of my voice is somewhat different due to all the surgeries but all in all there are no issues.
But yeah... I have to do these every day. I can do them at work or sitting here typing on the forum ~lol~ But I have to do it. Like I said, I've adapted and gotten used to the deficits. It's like the new normal but I can't settle for that. I have to work hard to maintain and hopefully improve this. There is a test that they can do (can't remember the name) to determine a baseline and my Rad Onc will be doing it that next visit. It's a step up from a barium swallow. They actually use electrodes and a camera inserted into the throat to measure muscle strength and swallowing mechanics... pretty advanced stuff.
I've also been ordered to get a CT of my chest to make sure there's nothing there. Most often, SCC (squamous cell carcinoma) in head and neck patients reoccurs in the lungs. I don't anticipate anything as I'm feeling pretty good considering everything :) I'm probably more at risk from my heart disease than cancer at this point.
Positive thoughts
Catherine S
03-03-17, 00:02
Ok, stingy eyes now. No words.
Cath x x x
Good to hear FMP.
Reaching that 5 year mark will be immense for you.
In the UK you'd be a NAD man-what does the E in NED stand for?
I think your thread would be great in the HA section....Honestly. Not that it could ever be moved there..
Great news for the Ultimate Warrior!
In the UK you'd be a NAD man-what does the E in NED stand for?
I think your thread would be great in the HA section....Honestly. Not that it could ever be moved there..
Great news for the Ultimate Warrior!
Thanks! :) NED = No Evidence of Disease :) I think this would trigger some in the HA section that's why I put it here. I've been feeling pretty good considering so I was pretty confident going into these appointments. There still is that little niggle of "what if they see something" but I manage that pretty well. In fact, they did see that my swallow is compromised but I knew that and know what I have to do. All in all, the sides effects and such are a pretty fair trade off for my life ;) Now, if I can keep the 'ol ticker going I'll be set for at least a little while longer! (Cardiologist appt. coming up soon).
Positive thoughts
It is amazing FMP. I'm sure I told you that my mum at 36 had terminal cancer and is now 84!!! Although she is poorly now, she did work up until the age of 77 and led a very full life and had some happy years. She also got side affects, but like you say, they outweigh the other option. She got a lot of aches and pains and her skin was discoloured from the radiation. She could not eat cooked food from a microwave.
She was a very lucky lady and knew it.
By the way, she is still totally cancer free, even in her poorly condition.
Sometimes FMP you have to celebrate what you have in life and not what you don't have and that includes Marcia, no matter how difficult it is. x :hugs:
Sometimes FMP you have to celebrate what you have in life and not what you don't have and that includes Marcia, no matter how difficult it is. x :hugs:
Exactly! I could fret over the deficits or celebrate life. Easy decision IMO ;)
Positive thoughts
FMP...God bless you. That is the best news I've heard in awhile on these boards. You are a living testament to how far medicine has com in regards to cancer. So let your NED Flag FLY my friend. Some things...many things transcend politics and this is certainly one of them. I couldn't be happier for you. :yesyes:
N.
almamatters
03-03-17, 19:45
Really pleased for you :)
Well said, Noivous! What's a bit of animated political banter in comparison with FMP's medical campaigns over these past few years and more?!
I knew you two were good friends really!:winks::D
Well said, Noivous! What's a bit of animated political banter in comparison with FMP's medical campaigns over these past few years and more?!
I knew you two were good friends really!:winks::D
Haha...Hey Pulisa I love FMP. You're right the political stuff is just banter. btw My lefty friends love me...they just wish they didn't lol.
N.
Carrie8484
05-03-17, 10:51
What a positive achievement, here's to another 4 healthy years. Well done FMP
Great news, so happy for you :)x
UPDATE: September 5th 2017.
Next to last visit with my Radiation Oncologist. All is well and still NED! AND... it turns out that all the singing I've been doing is quite beneficial for my throat. His advice? Keep singing! :D I've reached and adjusted to the "new normal" and my test scores are above average both physically and mentally.
I have one more appointment next year with my Medical Oncologist and Radiation Oncologist and I will be discharged from their care! I will be considered "Cured" :yesyes:
Positive thoughts
Congratulations FMP. I'm glad to hear the good news. A tough road to hoe but you did. Wishing you many more years of health and happiness.
N.
Wonderful news! Your surgeries must have been so painful and traumatic-such an awful time for you then but now is the time to think of your happy and healthy future!
The fact you've been through so much real life trauma with regards to yours and your wife's health and still find the time to come here and aid others is testament to the type of person you are. You truly are a remarkable individual, and long may your good health continue.
Catherine S
07-09-17, 22:43
Fabbo news fish...long may you get to swim in the ocean :yesyes:
Cath �� x x
I've always said Fish has a fine pair of gills. Splendid to hear the good news and that you'll be swimming happily in your remote tank for years to come!
bottleblond
07-09-17, 23:39
You can't keep a good man down my friend. Fantastic news!.
Keep Calm and give it hell! :hugs:
UPDATE 2-23-18
Today was my last visit with my medical oncologist. One more poke and scope next month with my radiation oncologist and I will be discharged from care and be deemed "cured"! :yesyes:
That being said. The cancer I had and treatment can and does have permanent side effects and other long term issues. I'll have to have a yearly CT scan as well as yearly swallow studies for the rest of my life. The side effects are annoying as hell but it sure beats the alternative ;) Here's to the "New Normal"!
Positive thoughts
Wonderful news, FMP! You are such a great example to us all with your resilient attitude and determination to get on with life despite all the many challenges you face. Have you any plans to celebrate your "liberation" next month?
Wonderful news, FMP! You are such a great example to us all with your resilient attitude and determination to get on with life despite all the many challenges you face. Have you any plans to celebrate your "liberation" next month?
Thanks Pulisa :D No plans really. We went to Chaps Roast Beef for lunch afterwards (best in Baltimore!) and it was just yummy! Before I lost the ability to eat during treatment and after my recovery started, we would go to Mo's Seafood in the Little Italy section of the city. Their cream of crab soup and calamari are off the hook! I think we'll celebrate there with a meal :D
Positive thoughts
On a side note....
I find I have a visceral physical and mental response in going to the hospital there. It's like the campfire I always talk about. While I knew my exam yesterday was going to be fine and I would be discharged, I was irritable as hell and I just wanted to get it over with and get the hell out of there as quickly as possible! Seeing all the others in the midst of their battles (the waiting room is huge and it was packed!), the look and even smell of the place just makes me cringe inside. I know it's a fight or flight response. I just want to put this chapter of my life away for good but I'm a survivor and it's something that will be a part of my life from now on and a part of who I am going forward. Certainly, the inner fortitude I gained in battling the beast has served me well in other aspects of my life but I would rather have gained it in a less traumatic fashion. Between that and my wife's illness, I find I'm just plain tired of it all and need a break.
There are also a few things happening currently that could be a very positive change for my career and financial situation. My wife is disabled and cannot work due to her illness and my current position, while I love it and have been there 9 years, does not provide enough to support us properly. Besides that, there are some things happening internally within the company that have me uneasy about the future and at 59yo, I find myself in a rather vicarious position of looking for new employment. I've applied for a position with a huge music company and have a phone interview on Monday morning. If things go well and I end up getting an offer, it would mean a 50% increase in salary, full medical benefits, 401K, profit sharing etc. It would also enable me to pass on what I've leaned in the music industry and sales to others.
As always, keeping...
Positive thoughts
Catherine S
24-02-18, 14:43
Great news re being signed off the cancer tests Mark, and good luck with the job interview....one door closes and hopefully another will open wide! :yesyes:
Cath x
Excellent news FMP so pleased the door on this will be closed for good you are a inspiration to us all thank you :) ATVB to you and your wife
This is amazing......you must be absolutely beaming with happiness. The psychological hardship of such a diagnosis, and the years following treatment are hard to describe to people and it sounds like you've navigated it with such strength. :D:D:D:D
Keeping everything crossed for you for Monday morning! That would certainly be a whole new start for you which would coincide with the end of your cancer treatment and regular hospital appointments..and would be richly deserved!
You certainly deserve some good fortune after so much trauma over recent years. I sincerely hope that you get this job and that life begins to treat you kindly again.
Yes this new job sounds really good and just what the dr ordered Best foot forward Fish and good luck :) ATB
I hope Monday went well, FMP
Yes, NMP. Sending you positive vibes! :)
Had the phone interview, did well and have moved onto the online personality type and skill set testing aspect. Did those last night. If they turn out well, I'll have a 2nd phone interview. If THAT goes well, I'm off to the facility for three days for face to face meetings. It's a rather intense vetting procedure. One step at a time...
Positive thoughts
valleybear
27-02-18, 13:24
I am so very pleased for you on all counts! You have helped and encouraged so many people on this forum over the years and your courage and positivity have, I am sure, been an inspiration to many. I send very best thoughts and wishes to you as you go forward.
With respect . Thanks
Blimey, what happened to going for an interview and being offered the job a couple of hours later. I must be getting old if I remember those days. :D
If it's meant to be, it's meant to be FMP.
Blimey, what happened to going for an interview and being offered the job a couple of hours later. I must be getting old if I remember those days. :D
If it's meant to be, it's meant to be FMP.
This place is like Google in the way it's set up. It's a "culture". They invest heavily in their employees. The facility has a gym, hair salon (not that I need it! ~lol~), medical office, restaurants, music venues etc., full benefits, dental, vision, 401K, profit sharing and your spouse is allowed to take advantage of the benefits. It's the real deal! They pay for the move, help you find a place to live, there's 13 weeks of training. I really want the job but I'm being realistic at this point. My age and lack of technical knowledge is a weakness. As you said. If it's meant to be, it's meant to be. I honestly wouldn't be too disappointed if don't get it as it's been a positive experience and helped me in just pursuing it. If it doesn't happen, I'll continue to pursue opportunities.
Keeping...
Positive thoughts
I'm sure you will give this your all as you do with everything. Wishing you all the very best!
Had the phone interview, did well and have moved onto the online personality type and skill set testing aspect. Did those last night. If they turn out well, I'll have a 2nd phone interview. If THAT goes well, I'm off to the facility for three days for face to face meetings. It's a rather intense vetting procedure. One step at a time...
Positive thoughts
Good luck FMP!!!! You LEGEND you!!!:biggrin:
As of today, I'm now listed officially "CURED"! :yahoo: hard to believe it's been 5 years!
I thought I would be totally discharged but my Radiation Oncologist wants me to come back in 6 months due to some nasty side effects from treatment. One of which is nerve damage from the extensive surgery to my neck. It causes the tendon (you know the one that runs from your neck to your collar bone) to seize up like a steel rod. Hurts like a MOFO too! :weep: It also causes a lot of pain in my upper back muscles and shoulder on the left side.
So he put me on a new med that I have to take along with vitamin E... Just what I need ANOTHER freakin' pill :doh: But ehhh... if it helps, I'm good with it I guess. It's not that expensive either so... Other than that, it's been recommended that I get a yearly CT scan and swallow study as well. In Head and Neck patients, swallowing can fail many years down the line due to the treatment. The CT is just to make sure nothing abnormal pops up.
I also have to speak to my GP about a med to mitigate the gout issue. I developed gout from treatment and those of you who may have had it know just how painful that is.
Anyway... a small price to pay in the big picture.
So there you go. I was Stage IVa and I beat it :winks:
Positive thoughts
FMP that's FANTASTIC!!!!!!!!!:)
It IS fantastic news and what a wonderful success story for your surgeons too!! I cant begin to imagine how dreadful the whole experience must have been for you, FMP. You must feel so relieved to have got the final "all clear" (what an understatement!)Best to have the precautionary scans in the future-just to give you peace of mind.
You must feel liberated from the cancer yoke?! Any news on that job in the music industry?
You must feel liberated from the cancer yoke?! Any news on that job in the music industry?
Thanks Pulisa :) The most nerve wracking part was the 1st two years after treatment. That was when the 50/50 chance it could recur was strongest. After that the docs felt pretty sure I'd be Ok. While being NED was great, to hear the word "cured" is a mental boost I can't quite put into words :)
As far as the job....I have a 2nd phone interview the 19th. If that goes well, they'll fly me out there for a three day visit, interviews etc.
Positive thoughts
Excellent news Fish well done you get through it with your patience and determination it's been a long road but finally you reached your destination:D and it's look good on your new carear prospects too ATVB to you :)
So pleased for you FMP. :yesyes:
With everything you have had to endure in the last couple of years as well.
You must be overjoyed and at last have some positivity in your life. :)
Very pleased for you Fishski. You put in a lot of hard work and positive thoughts. Long may your good health continue :shades:
PS. Please send multi-packs of "Told ya so!"s and positive thoughts as I'm running low :lac:
Had my 2nd phone interview. They really like me and my qualifications/experience. Passed it and they'll be flying me out for face to face interviews in May. I have a lot to learn about the newest music technology but I'm bound and determined to get this job. Time to go back to school ;)
Positive thoughts
Congratulations, FMP!! What an exciting time for you and much deserved!!
:yahoo: Fantastic news FMP.
I would be 'Anxious' with excitement! :D
Really glad things are moving in the right direction for you exciting times lie ahead for you, you will do well on this adventure so pleased for you FMP :) ATB
Had my 2nd phone interview. They really like me and my qualifications/experience. Passed it and they'll be flying me out for face to face interviews in May. I have a lot to learn about the newest music technology but I'm bound and determined to get this job. Time to go back to school ;)
Positive thoughts
Well deserved, and I think you will fit the bill perfectly, Fishski!
Just make sure all the Is are dotted and Ts crossed on that contract - you know how unscrupulous some companies can be :lac:
Congratulations!! NED is a wonderful thing to be! :)
So there you go. I was Stage IVa and I beat it :winks:
Positive thoughts
Hey Fish, I remember you from the old days of the forum and saw this thread accidentally now - I am so very happy you made it and your friendship with Mr Ned is now everlasting, as it should be. You did not beat it - you kicked the shit out of it :)
I wish you a long, healthy life and, of course, to always be blessed with positive thoughts.
A
Well... I went for the interview. It was intense! I was literally at the place all day. Sadly, I didn't get it. In the two long term jobs I've held in my career, both times I walked into the facility, asked for the owner/president, pitched myself and got the job. One for 11 years and currently for 9. This was totally different for me. 3 phones interviews and a face to face.
The positive I take away from this is knowing I can get there. Out of 400+ applicants I was one in around 25 that were flown out for an interview so I did the right things ;) Realistically, finding something at my age that doesn't involve Walmart will be challenging but it's back to search mode.... :winks:
As always, keeping...
Positive thoughts
Well... I went for the interview. It was intense! I was literally at the place all day. Sadly, I didn't get it. In the two long term jobs I've held in my career, both times I walked into the facility, asked for the owner/president, pitched myself and got the job. One for 11 years and currently for 9. This was totally different for me. 3 phones interviews and a face to face.
The positive I take away from this is knowing I can get there. Out of 400+ applicants I was one in around 25 that were flown out for an interview so I did the right things ;) Realistically, finding something at my age that doesn't involve Walmart will be challenging but it's back to search mode.... :winks:
As always, keeping...
Positive thoughts Hi FMP Well shit happens the fact you were flown out there so that's good you were in the top 25 applicants and you will get there and having the positive outlook can only stand you in good shape next time as always peace to you FMP:) ATB
I know how much you wanted this position and it must have boosted your confidence to get in with a chance.
It wasn't meant to be unfortunately and it is not to be taken personally. Like you said, look at the number of applicants. Well done for your achievements.
I know how much you wanted this position and it must have boosted your confidence to get in with a chance.
It wasn't meant to be unfortunately and it is not to be taken personally. Like you said, look at the number of applicants. Well done for your achievements.
Thanks BBoy and Carnation. Yeah... I trust it wasn't meant to be and it really was a positive learning experience.
Positive thoughts
So very good to hear! I love to hear NED, but CURED is phenomenal! My mother is Stage IV melanoma- she just hit 3 years and will be heading to her appointment for scans in July. She just moved to twice a year from quarterly appointments. Wonderful news for you and thank you for all of your support on here!
That is wonderful news. You have been an inspiration to me and so many others on here. Wishing you all the best
Sorry to hear that you didn't get the job but the fact that you were one of the chosen few is a huge credit to you..and you never know what is round the corner, opportunity-wise.
Halle, I hope your mother's scans will be reassuring in July. Hearing about FMP's experiences and having his support must have been a godsend. All good wishes to you.
Powered by vBulletin® Version 4.2.5 Copyright © 2024 vBulletin Solutions Inc. All rights reserved.