Been awhile - I've been bad
I've actually been pretty good. December CT/PET showed my NED and my follow up CT in June was still clean.
I was suffering from L'Hermittes - but my chiropractice rehab work has all but cured that. I only feel it when I run.
I was suffering from some neck thickening and fibrosis - but my chiropractic rehab work has greatly improved that.
I was suffering from some reduced range of movement in my neck - but my chiropractic rehab work has all but elliminated that.
Can you get the hint that I'm a fan of post-radiation chiropractic work? ;-) Actually, it doesn't have to be a chiro. I think ANY rehabilitation work immediately after treatments would be beneficial. The Oncologist and Radiation Oncologist don't recommend anything and really don't seem to care. "You're alive and in remission and that's all that counts. Learn to live with the side effects of your treatment." Bite me!
So what's not so good...
Thyroid took the full brunt of the radiation and my TSH was up to 27.5 (26-27 points over normal) - VERY hypothyroidic. And the Thyroid Peroxidase antibodies number is 520 (500 points over normal) - so my own immune system has turned on my dying little thyroid gland and is trying to kill the rest of it off. So it looks like it's Synthroid for me for the rest of my life. Not the worst thing in the world. It seems like half the world is on Synthroid... and the other half is on Lipitor.
... But they're still trying to dial in my dosage. First it was 50mg, then 100, now 200 and I still feel like the walking dead.
Another reason for that walking dead thing... Damn treatments must have somehow hit my nuts too! Testosterone is way low as well. That sucks! No wonder I feel like crap. I'm seriously considering going on the Testo-Pel pellets. Any other guys here deal with Low-T? Anyone else get pellet insertions?
Other than that I'm OK for 1 year later. No pain. Can eat anything. Still don't drink carbonated beverages, but you should drink that crap anyways. The voice is still not so great. If I don't constantly drink water I sound like Clint Eastwood with a hangover. It comes and goes. I can't exercise worth poop because of the low thyroid and t stuff. I get knocked out pretty easily and fast. All in all, I guess I can count a lot of blessings.
Any guys here dealing with the "shriveling nutz syndrome"?
Comments
-
No
I keep my nuts in a can, and that seems to keep them fresh.
Glad to hear that you are doing so well, stale nuts notwithstanding
.
Take care,
Joe0 -
Bigfuzzydoug!soccerfreaks said:No
I keep my nuts in a can, and that seems to keep them fresh.
Glad to hear that you are doing so well, stale nuts notwithstanding.
Take care,
Joe
Just wanted to say, hello. I will leave the whole nuts thing to you boys.... Though I have been told I have a set of brass ones a few times....0 -
nuts are good
But I get hit with a big old blast of fatigue every afternoon. Lovin on the naps. Probably gonna request thyroid test next time I'm at the docs. Good to hear from you BFD.
AB0 -
Chiropractic Work, Numb Nuts....Brass Balls
LOL, man you all are definitely part of my Abi-Normal Clan.....
Chiropractic Work, that cracked me up......
And wow, your thyroid really took it a hit...., mine has been creeping up slowly, but after two years I'm only at 5.9, maybe 6.0....
Haven't had any testicular problems, just glad I still have them between cancer, treatment, insurance and payments....and I can still even see them...as long as it's not too cold out...LOL.
Glad to hear from you Buzz.....
Keep Hangin,
John
Hope this post and replies last a few days...anxious to see the rebuttals....LOL0 -
One More Thing . . .
Very glad to hear you're doing fine on the "big" points.
I have read that men with hypothyroidism can have reduced testosterone production. Hoping that once your synthroid levels are good, the testosterone will be addressed, too.
I, too, am in the hypothyroidic club. Mine is much less severe than yours - I'm in Skiffen's neighborhood.
Thanks for checking in with us. Keep up the good scans. Hoping that once your thyroid meds are tweaked, the rest falls into place.0 -
nutz
Sorry to hear about the nutz issues.
At least soccerfreak keeps his in a can.
I think the thing that saved mine is the fact that they were in my wife's purse during treatment. In fact they have been there since our daughter was born circa 1986. My bitter half said something about me not needing them anymore??0 -
Kind Of Like Sammls351w said:nutz
Sorry to hear about the nutz issues.
At least soccerfreak keeps his in a can.
I think the thing that saved mine is the fact that they were in my wife's purse during treatment. In fact they have been there since our daughter was born circa 1986. My bitter half said something about me not needing them anymore??
Kind of like the Sam Kinison skit with the detachable penis....you aren't going to need this tonight are you...POP.
JG0 -
What a interstingmls351w said:nutz
Sorry to hear about the nutz issues.
At least soccerfreak keeps his in a can.
I think the thing that saved mine is the fact that they were in my wife's purse during treatment. In fact they have been there since our daughter was born circa 1986. My bitter half said something about me not needing them anymore??
What a intersting discussion. LOL!! Like Sweets, I will leave the nut comments alone.0 -
Lolarndog64 said:What a intersting
What a intersting discussion. LOL!! Like Sweets, I will leave the nut comments alone.
Well, the only ones I see these days are in the container of my Ben & Jerry's Pistachio Pistachio.0 -
Hoot...sweetblood22 said:Lol
Well, the only ones I see these days are in the container of my Ben & Jerry's Pistachio Pistachio.
You're a hoot girl.....
~JG0 -
Glad that I can be the butt of all your jokessweetblood22 said:Lol
Well, the only ones I see these days are in the container of my Ben & Jerry's Pistachio Pistachio.
Here I am suffering with nuts like raisins. I reach out to my CSN pals for some help and advice and all I get is... zzzzzzzzzzzzzzzz...
Sorry. Dosed off there for a moment.
I've already decided to do the testosterone pellet injections "Testo-pels". I fell asleep on the floor last nigth at 6:30 while folding laundry. That pretty much finalized the decision for me. Now that I'm in remission and done with the "horrors" of the treatment, I really want some kind of "normal" life.
Of course my wife told my kids about it and my 6-yr-old son comes up to me and asks, "pellets?" he ran off, came back and asked, "they're going to put pellets in your balls?" and he held out a handful of his pet hamster's food pellets. That had the family rolling on the floor laughing for a good hour!
I guess I could change my screen name to "Radiatiated Pistachio". While I may have nutz like raisins, I still have big brass balls. How's THAT for a mental image? ;-p0 -
LolBigfuzzydoug said:Glad that I can be the butt of all your jokes
Here I am suffering with nuts like raisins. I reach out to my CSN pals for some help and advice and all I get is... zzzzzzzzzzzzzzzz...
Sorry. Dosed off there for a moment.
I've already decided to do the testosterone pellet injections "Testo-pels". I fell asleep on the floor last nigth at 6:30 while folding laundry. That pretty much finalized the decision for me. Now that I'm in remission and done with the "horrors" of the treatment, I really want some kind of "normal" life.
Of course my wife told my kids about it and my 6-yr-old son comes up to me and asks, "pellets?" he ran off, came back and asked, "they're going to put pellets in your balls?" and he held out a handful of his pet hamster's food pellets. That had the family rolling on the floor laughing for a good hour!
I guess I could change my screen name to "Radiatiated Pistachio". While I may have nutz like raisins, I still have big brass balls. How's THAT for a mental image? ;-p
Well, I hope the pellets work for you. I know what it's like to have no energy and it stinks.0 -
Prunes....Bigfuzzydoug said:Glad that I can be the butt of all your jokes
Here I am suffering with nuts like raisins. I reach out to my CSN pals for some help and advice and all I get is... zzzzzzzzzzzzzzzz...
Sorry. Dosed off there for a moment.
I've already decided to do the testosterone pellet injections "Testo-pels". I fell asleep on the floor last nigth at 6:30 while folding laundry. That pretty much finalized the decision for me. Now that I'm in remission and done with the "horrors" of the treatment, I really want some kind of "normal" life.
Of course my wife told my kids about it and my 6-yr-old son comes up to me and asks, "pellets?" he ran off, came back and asked, "they're going to put pellets in your balls?" and he held out a handful of his pet hamster's food pellets. That had the family rolling on the floor laughing for a good hour!
I guess I could change my screen name to "Radiatiated Pistachio". While I may have nutz like raisins, I still have big brass balls. How's THAT for a mental image? ;-p
Are you sure it's raisins.....and not at least prunes.
Hope the Testo-Pels work out for you.....
With all of those rads, we know you're thick skinned and can handle alittle teasing....
Best,
John0 -
Pellet's& Nut'sSkiffin16 said:Prunes....
Are you sure it's raisins.....and not at least prunes.
Hope the Testo-Pels work out for you.....
With all of those rads, we know you're thick skinned and can handle alittle teasing....
Best,
John
To funny but I am not surprised. I would really like to hear more about your chiropractic treatment. What did they do for your neck as mine is thickening also. I went to the chiro lady for my arm & she got it to loosen up some but she hammered my neck with that metal thing & scared the crap out of me. I am very interested in hearing about your treatment. Hubby pushed me to go but I was a sceptic.0 -
I can't say enough how GREAT chiro has been for me.rozaroo said:Pellet's& Nut's
To funny but I am not surprised. I would really like to hear more about your chiropractic treatment. What did they do for your neck as mine is thickening also. I went to the chiro lady for my arm & she got it to loosen up some but she hammered my neck with that metal thing & scared the crap out of me. I am very interested in hearing about your treatment. Hubby pushed me to go but I was a sceptic.
Not saying it's for everyone, but for me it's been amazing! My chiro is trained in neurologic as well as being a trained and licensed physical therapist as well. No metal hammer thing, just skeletal and soft-tissue massage work by hand. My adjustments usually go like this...
1. Neck massage on the back to clear out any lymphatic fluid build up or swelling and drain the fluid. Some skeletal work but mostly to maintain the range of movement. There's one "cracking" maneuver that scares the crap outta ya with the sound, but it works. A lot of thumb pressing down on spots on the back of the neck to push fluid down.
2. A chest and shoulder stretch where he goes behind and pulls my arms back.
3. Wrist massage. Sounds strange, but it's kind of like reflexology. Apparently the wrist and throat have some kind of connection. My yoga teacher says the same thing. I certainly feel like my wrists are sore and hurt and when he;s done, they feel better.
4. A quick spinal check and alignment check (the traditional chiro stuff). Usually I don't need anything and this is quick.
5. Lie on my back, his elbows behind me and a stretch where he pushes my head forward. At first I couldn't take it much and it would actually block my airway. Now, it's no big deal at all,
6. The good stuff - I lie on my back and does this soft-tissue work where he drives his thumbs into the tendons under my jaw and moves my head. He presses his thumbs into the "thick" fibrosis parts and slowly works down, moves my head and tries to break up the scar tissue. Since my nerve endings are all fried, I don't feel a thing. At first he was a bit worried because we wouldn't know if he was going too deep and possibly hurting me, but we both kept soldiering on week after week.
Sometimes you could actually feel a muscle or tendon know pop and release. Sometimes when he gets a down into a thick mass of radiated fibrotic tissue and pushes just right, it's like it pops and melts. You can actually hear it! It's pretty gross. But what before felt like a thick lump of skin like on the bottom of your heel, all of a sudden feels like a neck again.
Now that he's got a lot of it breaking up, I can feel it again and there are time I tell him to stop or hold back because he's actually reaching my trachea or something that hurts. This is a good thing. It means the skin "thickening" is breaking up and going back to something more normal. Now only in the very front above my Adam's Apple is a 2-inch section that feels "thick". Everything else feels like normal neck skin. (Except for the fact that I never have to shave my neck again.)
At my last ENT visit he asked me what was up with my neck. "In 20 years I've never seen a post 8-week radiation treatment patient have such good looking skin and tissue. Your range of motion is totally normal and you have hardly any lymphedema or fibrosis at all. What have you been doing?!"
My Radiation Oncologist and regular Oncologist just looked at me like it was magic. They never even thought to suggest any kind of post-treatment care.
All I know is that for me, it's working. So I'll keep going twice a week for as long as it takes. My insurance covers 20 chiro-coded visits and 80 physical/occupational therapy visits and my guy can bill for either, so I'm covered for two visits a year. I'm not saying it's for everyone, but for me, the results speak for themselves. I can send a picture to prove it to.
Hope this helps.0 -
I agree. Massage has been aBigfuzzydoug said:I can't say enough how GREAT chiro has been for me.
Not saying it's for everyone, but for me it's been amazing! My chiro is trained in neurologic as well as being a trained and licensed physical therapist as well. No metal hammer thing, just skeletal and soft-tissue massage work by hand. My adjustments usually go like this...
1. Neck massage on the back to clear out any lymphatic fluid build up or swelling and drain the fluid. Some skeletal work but mostly to maintain the range of movement. There's one "cracking" maneuver that scares the crap outta ya with the sound, but it works. A lot of thumb pressing down on spots on the back of the neck to push fluid down.
2. A chest and shoulder stretch where he goes behind and pulls my arms back.
3. Wrist massage. Sounds strange, but it's kind of like reflexology. Apparently the wrist and throat have some kind of connection. My yoga teacher says the same thing. I certainly feel like my wrists are sore and hurt and when he;s done, they feel better.
4. A quick spinal check and alignment check (the traditional chiro stuff). Usually I don't need anything and this is quick.
5. Lie on my back, his elbows behind me and a stretch where he pushes my head forward. At first I couldn't take it much and it would actually block my airway. Now, it's no big deal at all,
6. The good stuff - I lie on my back and does this soft-tissue work where he drives his thumbs into the tendons under my jaw and moves my head. He presses his thumbs into the "thick" fibrosis parts and slowly works down, moves my head and tries to break up the scar tissue. Since my nerve endings are all fried, I don't feel a thing. At first he was a bit worried because we wouldn't know if he was going too deep and possibly hurting me, but we both kept soldiering on week after week.
Sometimes you could actually feel a muscle or tendon know pop and release. Sometimes when he gets a down into a thick mass of radiated fibrotic tissue and pushes just right, it's like it pops and melts. You can actually hear it! It's pretty gross. But what before felt like a thick lump of skin like on the bottom of your heel, all of a sudden feels like a neck again.
Now that he's got a lot of it breaking up, I can feel it again and there are time I tell him to stop or hold back because he's actually reaching my trachea or something that hurts. This is a good thing. It means the skin "thickening" is breaking up and going back to something more normal. Now only in the very front above my Adam's Apple is a 2-inch section that feels "thick". Everything else feels like normal neck skin. (Except for the fact that I never have to shave my neck again.)
At my last ENT visit he asked me what was up with my neck. "In 20 years I've never seen a post 8-week radiation treatment patient have such good looking skin and tissue. Your range of motion is totally normal and you have hardly any lymphedema or fibrosis at all. What have you been doing?!"
My Radiation Oncologist and regular Oncologist just looked at me like it was magic. They never even thought to suggest any kind of post-treatment care.
All I know is that for me, it's working. So I'll keep going twice a week for as long as it takes. My insurance covers 20 chiro-coded visits and 80 physical/occupational therapy visits and my guy can bill for either, so I'm covered for two visits a year. I'm not saying it's for everyone, but for me, the results speak for themselves. I can send a picture to prove it to.
Hope this helps.
I agree. Massage has been a god send for me. It was never recommended by m doctor and I have asked them to recommend it for all post head and neck patients. I have a feeling that may not be happening though. Am having some tiredness issues, thyroid only a wee bit low on some tests and normal on most, will post the numbers and see what you all think.
Stacey0 -
Hamster pelletsBigfuzzydoug said:Glad that I can be the butt of all your jokes
Here I am suffering with nuts like raisins. I reach out to my CSN pals for some help and advice and all I get is... zzzzzzzzzzzzzzzz...
Sorry. Dosed off there for a moment.
I've already decided to do the testosterone pellet injections "Testo-pels". I fell asleep on the floor last nigth at 6:30 while folding laundry. That pretty much finalized the decision for me. Now that I'm in remission and done with the "horrors" of the treatment, I really want some kind of "normal" life.
Of course my wife told my kids about it and my 6-yr-old son comes up to me and asks, "pellets?" he ran off, came back and asked, "they're going to put pellets in your balls?" and he held out a handful of his pet hamster's food pellets. That had the family rolling on the floor laughing for a good hour!
I guess I could change my screen name to "Radiatiated Pistachio". While I may have nutz like raisins, I still have big brass balls. How's THAT for a mental image? ;-p
Bob, Their could be something in those hamster pellets. Our hamster used to eat those pellets and jump on his wheel to burn off energy. You might be on to something there! Lol, Homer0 -
Thank you so much!connieprice1 said:Hamster pellets
Bob, Their could be something in those hamster pellets. Our hamster used to eat those pellets and jump on his wheel to burn off energy. You might be on to something there! Lol, Homer
My husband has sciatica & has had great success with his chiropractor. I went to see a Dr. with regard's to the horrible pain in my arm & shoulder who passed me back to my oncologist who said nothing showed on the ct scan. So hubby said to give it a try.I must say arm is now more mobile & am down to two Tylenol arthritic pill's a day from six. My chiro lady did the thumb trick & hammered on my spine. They did scan me first. Then I went for an assessment at their clinic & mentioned my shoulder was still very tender & they asked me if the chiropractor recommended physio & I said no. I asked my Oncologist about massage for my turkey neck & he said it would not work. Now I notice thickening etc. This chiropractor was not very open to communication so I am now on the hunt for one that has the capabilities similar to your's. I so appreciate your input & will now research this much further.
Thank you Kindly
Roz0
Take care all! 
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