Nasopharyngeal Cancer Treatment follow-up

motorcycleguy

april / Dave,

I'm very sorry to hear about your challenges. I'm wishing the best for you in finding solutions that ease your difficulties - and that you both find things in life that make you truly happy!

Prayers to both of you!

wbcgaruss

April-Dave

You folks are very courageous to get through each day with the situations you are dealing with. It's a bummer when past radiation creates problems as if you don't have enough already. This is something the rest of us have to be aware of the possibilty of delayed side effects of radiation. It's tough when you have so many difficult things to deal with yet you folks are dealing with it. My heart goes out to you guys and I hope that you will be able to stand strong each day and I am hoping you find different ways to make your struggle easier somehow. My prayers go out to you folks-God Bless-Russ

Logan51

wbcgaruss said:

April-Dave

You folks are very courageous to get through each day with the situations you are dealing with. It's a bummer when past radiation creates problems as if you don't have enough already. This is something the rest of us have to be aware of the possibilty of delayed side effects of radiation. It's tough when you have so many difficult things to deal with yet you folks are dealing with it. My heart goes out to you guys and I hope that you will be able to stand strong each day and I am hoping you find different ways to make your struggle easier somehow. My prayers go out to you folks-God Bless-Russ

Long term side-effects

Russ & MCG

Thank you for the comments. Way I look at it is the big picture. Had close to 7-8 real good years, then came the negative scar tissue surprise. 

I responded to Aprilshower like I did because that's the first person I can remember who has talked about the bad saliva and aspiration issue with it.

My current circumstances did come as a surprise to me, and the specifics are what I wanted to be made known. I heard many years ago about Osteoradionecrosis being a long term problem that results in partial or complete jaw replacement, and a return of NPC usually first shows up in the lungs. Those were the only negatives I expected, other than more potential tooth problems (2 root canals & crowns in first 6 years, post-tx, and the rebuilding of tooth tops on 12 teeth). And then when I started coughing-up Ensure well over a year ago, and my energy level grew less- it still didn't hit me that it could be scar tissue buildup around esophagus and/or windpipe apertures. Did notice the gradual weight loss while on the same basic diet, and started snacking with peanut butter for a temporary help around the time the scar tissue aspiration must have been starting. Also noticed difficulty swallowing pills, but it still did not register with me about the scar tissue possibility. THING IS: I had never read about the scar tissue growth around eating and breathing pipe openings on the Forum before. Had read many posts about difficulty swallowing and a couple things Dr.s did to try and help- but not specifically why, and with most of those people it was not presented as a long term development. Did remember Tim/Hondo having to get a Feeding Tube many years after his 2nd round w/Rads, but attributed that to other Rad damage- he could only open his mouth enough so there was a 1/2" gap between his teeth to eat.

Reckon I just wanted people to know this has happened to me approximately 9 years after the last Rad session, I got 68 Gys to my lower throat, and now the added saliva problem w/aspiration. Dentist goes to the U of Iowa Hospital for seminars, and according to them 60 Gys to the lower skull/jaw area is the amount where long term Osteoradionecrosis can become a very negative issue. Asked my ENT about that, and he agreed. My Rad final report says I got less than that to that area, which was a relief.

Like I said- had close to 7-8 real good and very acceptable/"new normal" years. And, I am aware of others who are dealing with a lot more to the negative than I am, so I am not complaining. Just wanted others to be aware. Civil Matt talks about always drinking/swallowing to keep function in order, but I can't see that applying to me because I did so with flavored water all the good years- though maybe not enough...

 

wbcgaruss

Logan51 said:

Long term side-effects

Russ & MCG

Thank you for the comments. Way I look at it is the big picture. Had close to 7-8 real good years, then came the negative scar tissue surprise. 

I responded to Aprilshower like I did because that's the first person I can remember who has talked about the bad saliva and aspiration issue with it.

My current circumstances did come as a surprise to me, and the specifics are what I wanted to be made known. I heard many years ago about Osteoradionecrosis being a long term problem that results in partial or complete jaw replacement, and a return of NPC usually first shows up in the lungs. Those were the only negatives I expected, other than more potential tooth problems (2 root canals & crowns in first 6 years, post-tx, and the rebuilding of tooth tops on 12 teeth). And then when I started coughing-up Ensure well over a year ago, and my energy level grew less- it still didn't hit me that it could be scar tissue buildup around esophagus and/or windpipe apertures. Did notice the gradual weight loss while on the same basic diet, and started snacking with peanut butter for a temporary help around the time the scar tissue aspiration must have been starting. Also noticed difficulty swallowing pills, but it still did not register with me about the scar tissue possibility. THING IS: I had never read about the scar tissue growth around eating and breathing pipe openings on the Forum before. Had read many posts about difficulty swallowing and a couple things Dr.s did to try and help- but not specifically why, and with most of those people it was not presented as a long term development. Did remember Tim/Hondo having to get a Feeding Tube many years after his 2nd round w/Rads, but attributed that to other Rad damage- he could only open his mouth enough so there was a 1/2" gap between his teeth to eat.

Reckon I just wanted people to know this has happened to me approximately 9 years after the last Rad session, I got 68 Gys to my lower throat, and now the added saliva problem w/aspiration. Dentist goes to the U of Iowa Hospital for seminars, and according to them 60 Gys to the lower skull/jaw area is the amount where long term Osteoradionecrosis can become a very negative issue. Asked my ENT about that, and he agreed. My Rad final report says I got less than that to that area, which was a relief.

Like I said- had close to 7-8 real good and very acceptable/"new normal" years. And, I am aware of others who are dealing with a lot more to the negative than I am, so I am not complaining. Just wanted others to be aware. Civil Matt talks about always drinking/swallowing to keep function in order, but I can't see that applying to me because I did so with flavored water all the good years- though maybe not enough...

 

Dave Thanks for

Expanding on that and explaining more. And yes I do remember Hondo, great guy and his situation of being on a feeding tube finally and not able to open his mouth very much. But like you handled his difficulties well.

motorcycleguy

Thanksgiving taste!

My sense of taste came back quite a bit, just before Thanksgiving, Between eating more and regular weight-lifting sessions, I was up 6 pounds at the gym, today!!

aprilshower55

Logan51 said:

Aprilshower

Also NPC/told was Stage-3/unknown Primary- so they zapped me w/Rads in 20 places/session.

Your eating & drinking problem hit you sooner than mine hit me (around 9 years). Got my FT on 8/6 of this year. Dr. who did my swallowing test was amazed I didn't have pneumonia when I told him how long I'd been dealing with coughing-up Ensure.

And definitely can relate to the saliva/phlegm. Have called it "toxic saliva" to my GP for a couple years, and have been using a spittoon for about that long. Have one of those little arced hospital pans on my car's front seat to spit into. At home I've been spitting into waste baskets for years. Stuff is like a thick white foam. And not being able to drink with the danged dry mouth/throat...I basically said to heck with it, citing quality of life, and have been sucking on ice cubes since I got the FT. When my throat got real dry I experienced discomfort in my lower-right of throat. Just the little moisture of sips have solved that issue.

I do not have the sleep issues you have. Do not lay down after FT feedings until at least 1-1/2 hours have passed. You have my sympathy for your issues- sleep is so very important. With my energy level, I take a couple hour evening nap, and later get a typical 6 hours in bed. First thing I do when I get up are deep coughs which do produce the saliva, or water from the ice cubes.

I have wondered about my lungs, so had my ENT order a lung X-ray. Have heard nothing. My GP has refused to do a lung CT. Meet with him this Friday, and just might request. I dropped from 138-115 lbs., and with the last 3-plus months on Jevity and Boost VHC have only gained a couple pounds. Physical Therapist said I should have gained more with my Body Mass Index, so there might be something going on...

Truly am sorry to hear about your struggles. The Rads can and do take a toll years later. I had around 8 years with my only complaint being neck spasms and a constant stiffness. And then along comes Aspiration, and now the permanent FT- all because of scar tissue created by Rad damage.

Prayers are with you. 

Hi Dave, You mentioned

Hi Dave, You mentioned getting pneuomnia, I fogot to mention that I got pneuomnia in June, I had to have lung surgery I was in the hospital for almost a month and rehab for 3 weeks. I forgot what the surgery called.  Is where they go in your chest cavity to scrap and suck out the infected fluids out and had 4 tubes to drain the blood and fluids out.  I still feel the pain my all my ribs.So you need to be careful I didn't know I had pneuomina and it got so bad I couldn't breath just trying to walk that's when I decided to go to the emergency.  So I am sorry you have to deal with the same issues I have too.  You can spit, but I can't.  Also you don't have the sleeping problems.  I just want to know is there anyone out there with the same issues as me to give me some pointers. I have discover cannabis oil CBD it have been helping me sleep a little longer.  You also have neck problems so do I.  They call it Radiation Induced Fibrosis or Syndrome.  Theres nothing you can do except get Botox Injections which has side effects too.  And you need to get it every 3 or how many months the doctor recomends you.  I have a MRI and MRA next mont to see where I go from there.  My doctor suggest Botox, but I don't want anymore side effects.  I am thinking more of physical therapy which I do at home.  You have to keep moving those muscles or else it will get more stiff. I have sensations like when your leg falls a sleep that tingly feeling.  I also use a neck massager to help me to relax the muscle.  I too was taking Javity then I switched to Kate Farms is more of Whole Food Base. How many shakes are you taking a day? You might need to increase it if you are not gaining weight.  I was feeding 6 Javity a day when I was using that brand now I do about 41/2 to 5 with Kate Farms.  I have gained weight since I have been on FT.  

 

aprilshower55

motorcycleguy said:

april / Dave,

I'm very sorry to hear about your challenges. I'm wishing the best for you in finding solutions that ease your difficulties - and that you both find things in life that make you truly happy!

Prayers to both of you!

Delay Side Effects

thank you, for your prayers.  I am glad you had good results from your CT.  I wish you all the best you on the road to recovery.

aprilshower55

wbcgaruss said:

April-Dave

You folks are very courageous to get through each day with the situations you are dealing with. It's a bummer when past radiation creates problems as if you don't have enough already. This is something the rest of us have to be aware of the possibilty of delayed side effects of radiation. It's tough when you have so many difficult things to deal with yet you folks are dealing with it. My heart goes out to you guys and I hope that you will be able to stand strong each day and I am hoping you find different ways to make your struggle easier somehow. My prayers go out to you folks-God Bless-Russ

Thank you Russ for your

Thank you Russ for your prayers.  I am at peace I mange to get thru each day. This delayed Radiation is a awful.  I now have Radiation Induced Fibrosis too.  I wonder is there anymore delayed side effects.  God knows I have more than my share.  I thank everyone support here, I have been absent for a while but I will be here to support others who also need to know about the challenges we didn't expect.

 

motorcycleguy

aprilshower55 said:

Thank you Russ for your

Thank you Russ for your prayers.  I am at peace I mange to get thru each day. This delayed Radiation is a awful.  I now have Radiation Induced Fibrosis too.  I wonder is there anymore delayed side effects.  God knows I have more than my share.  I thank everyone support here, I have been absent for a while but I will be here to support others who also need to know about the challenges we didn't expect.

 

April,

I'm very sorry about all of your trouble. I re-read your postings a couple times, and I'm sending a prayer your way!

I hope you see some improvement in your condition, very soon....

MG

Logan51

aprilshower55 said:

Hi Dave, You mentioned

Hi Dave, You mentioned getting pneuomnia, I fogot to mention that I got pneuomnia in June, I had to have lung surgery I was in the hospital for almost a month and rehab for 3 weeks. I forgot what the surgery called.  Is where they go in your chest cavity to scrap and suck out the infected fluids out and had 4 tubes to drain the blood and fluids out.  I still feel the pain my all my ribs.So you need to be careful I didn't know I had pneuomina and it got so bad I couldn't breath just trying to walk that's when I decided to go to the emergency.  So I am sorry you have to deal with the same issues I have too.  You can spit, but I can't.  Also you don't have the sleeping problems.  I just want to know is there anyone out there with the same issues as me to give me some pointers. I have discover cannabis oil CBD it have been helping me sleep a little longer.  You also have neck problems so do I.  They call it Radiation Induced Fibrosis or Syndrome.  Theres nothing you can do except get Botox Injections which has side effects too.  And you need to get it every 3 or how many months the doctor recomends you.  I have a MRI and MRA next mont to see where I go from there.  My doctor suggest Botox, but I don't want anymore side effects.  I am thinking more of physical therapy which I do at home.  You have to keep moving those muscles or else it will get more stiff. I have sensations like when your leg falls a sleep that tingly feeling.  I also use a neck massager to help me to relax the muscle.  I too was taking Javity then I switched to Kate Farms is more of Whole Food Base. How many shakes are you taking a day? You might need to increase it if you are not gaining weight.  I was feeding 6 Javity a day when I was using that brand now I do about 41/2 to 5 with Kate Farms.  I have gained weight since I have been on FT.  

 

April

Just saw your entry on the 30th (this is the 3rd).

I'm doing 2-Boost VHC and 3-1.5 Jevities= 2125 calories/day, but only for the last week. Was getting 1940 calories before that. I don't think I'm gaining any weight, but not really losing. People tell me my face looks fuller, but I look in the mirror and I sure can see the brow bone sticking out above and on the sides of my eyes...Bought a new digital weight scale today at Wally's for $20. With shoes on, like at Dr.s office- 120.1 lbs. At Dr.s office eleven days ago- 114.6 lbs. 

Dr.s Nurse called and left a message today to get back to her. He said he was going to make some phone calls... 

motorcycleguy

Quick Update:

I'm at the 5-1/2 month (after finishing treatment) mark.

My hair has grown back to where I don't feel it necessary to wear a hat all the time. My new hair is darker, and is now about 2" long. It looks to be about as thick as it was before.

Neuropathy is still there - numbness in hands, forearms and feet. The gym really "triggers" a lot of feeling, in my arms and hands, and I'm thinking it may be helping.

My sense of taste and saliva are still improving. I'm holding steady at 165 pounds (30 pounds lighter than when I started treatment). At present, I'm happy with my 75% taste, as it makes it easy to maintain the lower weight - LOL.

I feel a little more energy all the time.

I assume I may be on here again before Christmas - but I want to wish everyone a HAPPY HOLIDAYS - and I hope everyone who reads this, finds some joy in this season!!

johnsonbl

Shock when you look down...

I didn't read through the whole thread so someone may have answered it already but that shock you get when you look down is a result of the radiation.  It has a name but I can't remember what it is.  It's temporary and should go away if it hasn't already.  I recall mine lasted about a month or so after my last treatment.

 

 

Brandon

motorcycleguy

johnsonbl said:

Shock when you look down...

I didn't read through the whole thread so someone may have answered it already but that shock you get when you look down is a result of the radiation.  It has a name but I can't remember what it is.  It's temporary and should go away if it hasn't already.  I recall mine lasted about a month or so after my last treatment.

 

 

Brandon

johnson - you're absolutely correct!

Someone private messaged me about that. It's called Lhermitte's Sign, and caused what felt like a mild electrical shock (tickle) in my lower legs / ankes, whenever I put my head towards my chest.

(It went away, as suddenly as it came on...)

Happy holidays to you and yours!

johnsonbl

motorcycleguy said:

johnson - you're absolutely correct!

Someone private messaged me about that. It's called Lhermitte's Sign, and caused what felt like a mild electrical shock (tickle) in my lower legs / ankes, whenever I put my head towards my chest.

(It went away, as suddenly as it came on...)

Happy holidays to you and yours!

Excellent...

I remember the first time it zapped me...  Scared the crap out of me.  lol.  Happy holidays!

Drivingdaisy

Logan51 said:

Long term side-effects

Russ & MCG

Thank you for the comments. Way I look at it is the big picture. Had close to 7-8 real good years, then came the negative scar tissue surprise. 

I responded to Aprilshower like I did because that's the first person I can remember who has talked about the bad saliva and aspiration issue with it.

My current circumstances did come as a surprise to me, and the specifics are what I wanted to be made known. I heard many years ago about Osteoradionecrosis being a long term problem that results in partial or complete jaw replacement, and a return of NPC usually first shows up in the lungs. Those were the only negatives I expected, other than more potential tooth problems (2 root canals & crowns in first 6 years, post-tx, and the rebuilding of tooth tops on 12 teeth). And then when I started coughing-up Ensure well over a year ago, and my energy level grew less- it still didn't hit me that it could be scar tissue buildup around esophagus and/or windpipe apertures. Did notice the gradual weight loss while on the same basic diet, and started snacking with peanut butter for a temporary help around the time the scar tissue aspiration must have been starting. Also noticed difficulty swallowing pills, but it still did not register with me about the scar tissue possibility. THING IS: I had never read about the scar tissue growth around eating and breathing pipe openings on the Forum before. Had read many posts about difficulty swallowing and a couple things Dr.s did to try and help- but not specifically why, and with most of those people it was not presented as a long term development. Did remember Tim/Hondo having to get a Feeding Tube many years after his 2nd round w/Rads, but attributed that to other Rad damage- he could only open his mouth enough so there was a 1/2" gap between his teeth to eat.

Reckon I just wanted people to know this has happened to me approximately 9 years after the last Rad session, I got 68 Gys to my lower throat, and now the added saliva problem w/aspiration. Dentist goes to the U of Iowa Hospital for seminars, and according to them 60 Gys to the lower skull/jaw area is the amount where long term Osteoradionecrosis can become a very negative issue. Asked my ENT about that, and he agreed. My Rad final report says I got less than that to that area, which was a relief.

Like I said- had close to 7-8 real good and very acceptable/"new normal" years. And, I am aware of others who are dealing with a lot more to the negative than I am, so I am not complaining. Just wanted others to be aware. Civil Matt talks about always drinking/swallowing to keep function in order, but I can't see that applying to me because I did so with flavored water all the good years- though maybe not enough...

 

Dave K

Russ, did not realize all your side effects came so much later.  Mine started after 1st yr.  and keep coming or getting worse.  So glad you got yrs of life before yours started.  What scares Me what am I in for if I live on.  How much worse will it get.  I started off so good & positive and only got about 6 months of a semi- normal life before all hell broke out.  How could I walk all over Europe for 3 yrs with that patch, eating, drinking wonderful wine, exploring, often walking 8 miles a day, at least.  Felt great had 1 thing on 2015 Colonscopy, diverticulitis, now 5 things wrong, in less than 5 yrs.  kidneys taking a beating with salt, water pills, hyponuttrimia with low sodium.  Before starting treatments sodium 140 perfect, now My new is 125 & chemo dr watched that happen.  It often goes under and stroked,  I was 109.  Very dangerous.  6-8 sodium pills a day to try & maintain.  Lucky found private IV Lounge and pay myself to get saline booster bag because Dr are afraid to give to Me unless I go into hospital & monitored.  Often get overdosed than they fluid restrict Me till it comes down if too fast another bag, this goes on usually 3-4 days and I feel crappier coming out than when I went in.  But never get My Dr get on call Dr, usually same one & she constantly oDs Me.  Had to prove to My kidney Dr 1 bag all I need.  Have proved it 5 times with good numbers for Me but does he have the balls to stand up to his associates & tell them 1 bag only.  I've had to stop IV drips at hospital after I hear blood test number so I don't OD.  My arm veins shot, one arm from Chemo, other from hospital and every 2 week testing for sodium number.  They have blown them too many times.  All I wanted was more decent time but did everything opposite others.  Started good than went downhill so fast.  Was beginning to go insane if I heard 1 more time you have Radiation damage.  Why, small spot, no lymph, no tumors nothing just a small patch of skin they refused to just cut off.  New Robotics your mouth too small need to remove all your teeth to do.  Yet removed tonsils when young with a scalpe.  Nope you just get the full treatment.  End of story.

Drivingdaisy

aprilshower55 said:

Hi Dave, You mentioned

Hi Dave, You mentioned getting pneuomnia, I fogot to mention that I got pneuomnia in June, I had to have lung surgery I was in the hospital for almost a month and rehab for 3 weeks. I forgot what the surgery called.  Is where they go in your chest cavity to scrap and suck out the infected fluids out and had 4 tubes to drain the blood and fluids out.  I still feel the pain my all my ribs.So you need to be careful I didn't know I had pneuomina and it got so bad I couldn't breath just trying to walk that's when I decided to go to the emergency.  So I am sorry you have to deal with the same issues I have too.  You can spit, but I can't.  Also you don't have the sleeping problems.  I just want to know is there anyone out there with the same issues as me to give me some pointers. I have discover cannabis oil CBD it have been helping me sleep a little longer.  You also have neck problems so do I.  They call it Radiation Induced Fibrosis or Syndrome.  Theres nothing you can do except get Botox Injections which has side effects too.  And you need to get it every 3 or how many months the doctor recomends you.  I have a MRI and MRA next mont to see where I go from there.  My doctor suggest Botox, but I don't want anymore side effects.  I am thinking more of physical therapy which I do at home.  You have to keep moving those muscles or else it will get more stiff. I have sensations like when your leg falls a sleep that tingly feeling.  I also use a neck massager to help me to relax the muscle.  I too was taking Javity then I switched to Kate Farms is more of Whole Food Base. How many shakes are you taking a day? You might need to increase it if you are not gaining weight.  I was feeding 6 Javity a day when I was using that brand now I do about 41/2 to 5 with Kate Farms.  I have gained weight since I have been on FT.  

 

Aprilshower 55

So soo sorry for all your side effects.  I do another woman on this forum we talk daily messenging with many if not worse problems.  I will tell her about you maybe you two can talk.?  Good luck to you & hang in all We can do, it seems.  Hugs to you, Lisa

motorcycleguy

Drivingdaisy said:

Aprilshower 55

So soo sorry for all your side effects.  I do another woman on this forum we talk daily messenging with many if not worse problems.  I will tell her about you maybe you two can talk.?  Good luck to you & hang in all We can do, it seems.  Hugs to you, Lisa

Thanks, Lisa

I would appreciate any help I can get. People on this forum have been great!!

Curt

motorcycleguy

9-1/2 Month Update:

1. Taste - still holding at 65% or so - weight holding steady.

2. Hair - all came back - just darker and curlier than before.

3. Neuropathy - hands, forearms and feet still numb. Seem to slowly be getting better - small things not such a challenge, now.

4. Sleep - MUCH better, recently. Nose is clearing up, and no more dry mouth every night!

5. Energy - also MUCH better, maybe due to sleep. I've picked up a LOT in the last couple months!

6. Hearing - had Tinnitus before, lost a little during treatment - still able to function - no improvement noted.

Overall - feeling much better, lately - and still feel I'm on the upswing. I'm on a construction jobsite in Oregon - and feeling great!

I wish you all the best during this Covid-19 situation. I hope it starts the downward slide, soon!

mg

wbcgaruss

MG So Glad You Are On

The other side of treatment and recovering well after a tough go. There is a light at the end of the tunnel but when we are in the thick of it it's hard to see. Glad you are doing well but with some leftovers from treatment. I too have neuropathy in my hands and feet and it does seem to radiate a bit up my forearms and calves and I have some mild tinnitus. Well, we adapt and take meds if anything will help it and move on with life. Sounds like you are working again-Great-Take Care-God Bless

HobbsDoggy

It a Slow Go And Some Back Sliding But Better Sometimes

Like most It does get better.  After over 9 years most, but not all of my taste is back.  Mouth is still dry and sometimes swallowing is still difficult at times.  Interesting that you guys bring up tinnitus. I recently developed it.  In the last year or so.  Docs here did not find a cause and I did not think about radiation until now.  Lost hair, but that is because my Dad, bless him, was bald and so was I long before radiation.  Overall there is a lot of hope on the other side.  There is always fear about cancer now, but there is also always a lot of joy in the new lease on life we have.