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A couple of questions

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Hey Everyone,

Work has taken over my life again and has kept me from posting very much. Hope everyone is doing well!

A couple of questions for you. I'm 10 months post treatment and doing well, but do have a couple of things I thought I'd run up the flagpole and see what you thought. Every afternoon I get terribly cold. It sounds like a symptom of the thyroid, but I thought being tired went hand-in-hand with that. And I'm not tired at all. I go to ENT next week and will ask for thyroid test. My first test results for thyroid, 3 months ago, showed everything in normal range.

Also, like a lot of you out there I still have virtually no saliva. I've started checking into accupuncture for a possible solution for this. I know a few have tried this, but was hoping those that have tried it would share their experiences and in particular if you thought it worked or not. I checked and it's not covered by my insurance, so I don't really want to throw money at it if no one has had good results.

Positive thoughts to all!

Thanks
Greg

D Lewis's picture
D Lewis
Posts: 1540
Joined: Jan 2010

Hi, Greg,

I'm nine months out from treatment now, and still periodically suffering from cold. Mostly I'm cold in the evening, rather than afternoon, and it seems unrelated to my energy level. Had my thyroid tested and ultrasounded last week, and everything was normal.

Still no saliva. Still hoping. Haven't considered acupuncture yet. I don't know that we have any good practitioners in my neck of the deep woods. I can't help but wonder about placebo effects - if you invest a lot of money into something you hope is a cure, do you perceive an improvement where none may actually exist?

On another note, one of my many doctors suggested to me that I should not expect my thyroid to tank for ten years or so. Another one of my doctors told me firmly that he intended to test my thyroid function every three months. Any thoughts?

Deb

Skiffin16's picture
Skiffin16
Posts: 8097
Joined: Sep 2009

Not sure why the one MD would tell you not to expect the thyroid to crap out for ten years. If you had radiation it's fairly common for the thyroid to start crapping out in around a year or so...that's not a given. Not everyone's does crap out, but it's just not that uncommon.

Have them to test your TSH levels, or if you have been getting regular CBC (complete blood counts), some times they are on the results. Normal ranges are somewhere between .4 - 4.0 - .5 - 5.0, depending on where you look.

GREG...I don't really consider fishing every week-end work, but that's just me...LOL.

Best,
John

luv4lacrosse's picture
luv4lacrosse
Posts: 1402
Joined: Jul 2010

I seem to be more cold in the evenings. Maybe I am this cold at work, but keeping busy keeps me from thinking how cold I am.

The saliva thing sounds not so good. Seems like anyone who gets improved saliva, gets it 9 months out and longer.

My mouth is so dry, my tongue is starting to look like beef jerky.

Skiffin16's picture
Skiffin16
Posts: 8097
Joined: Sep 2009

I was really dry for several months right after treatment (I did have Amifostine Injections also)..., but it slowly started coming back around a year or so.

I first started getting a little on the opposite side from the major rads. To the point now (20+ months out), and still improving.

I am pretty much 100% during the day and evenings. At night sleeping, I'm only maybe 75% or so...which is still better than a few months ago.

So I wouldn't necessarily give in that it's not coming back. Even my taste at this far out seems to be improving.

Best,
John

SASH's picture
SASH
Posts: 283
Joined: Apr 2006

My guess it is the Thyroid as it controls so much of the body's functions. As far as saliva, I'm still limited on how much I have and I've been out of radiation for over 11 years. I'm not expecting it to get better, so those days that I have a bit more, I'm happy.

I haven't tried acupuncture and probably wont as I've had my share of needles. I guess I'm just used to the dry mouth. From what I have heard from those that have tried the acupuncture, is it takes many treatments for a short lived benefit. But I will defer to someone that actually has done this.

Hondo's picture
Hondo
Posts: 5868
Joined: Apr 2009

Don’t know if it is the Thyroid or not responsible for the cold feeling or just side effects of radiation, I am six year passed last treatment and hate anything under 69degree. When I get cold it is all the way to the bones. On saliva it took me better than a year or so to get it back and that is only at 65% of what use to be normal.

All the best to you
Hondo

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Thanks for your responses. I guess I might be getting too antsy on the lack of spit. I'll see if anyone else chimes in.

Deb, crazy how different your doc's timeframes are.

And John, I only wish I could get paid to fish, but then would it just turn in to another job??? NOT! That would be sweet - fishing for a living, maybe throw in looking at pretty girls at the same time (and of course I'm referring to all the lovely ladies here on CSN!).

Enjoy your weekend!
Greg

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Greg, I just finished my last of six sessions with an acupuncturist for the treatment of tinnitus. If you try it and don't have a recommendation, check for credentials. Lots of them don't have any. Mine was a lady with a Masters in public health, and extensive training in Chinese medicine. She was a pleasure.

She took time to look at my case specifically and develop a plan that would hopefully treat the tinnitus and help remove risidual toxins built up from chemo and rads--I'm about ten months out from chemo and rads and six months from partial neck dissection. Chinese medicine is holistic by nature, though certainly she aimed the needles as what she thought could relive the tinnitus. After six sessions I had no relief (I would've gladly taken the placebo effect Deb).

Each session she would talk first and ask if the symptoms had changed, then I would lie on a standard doctor cot and she would insert anywhere from 18 to 25 needles (painless). She charged $55.00 per session, no insurance coverage for me, which I thought was a deal. After inserting the needles she would put on some chanting songs, turn off the lights and leave for about twenty minutes to allow the needles to work.

If I had insurance coverage I would've extended the trial. I believe Chinese medicine can work, whether you are modern or ancient, Chinese or not. It wasn't working for my condition, but that doesn't mean it might not for you. I'm glad I tried it.

My salivary function started to return some about a month ago. I wasn't able to tolerate amiphostine during rads, but the saliva began to improve on it's own and it better today. I'll trade you some salivary function for a little peace and quiet. Ha.

best of luck to you, Hal

MarineE5
Posts: 758
Joined: Dec 2005

Greg,

I am cold allot also, but I take high blood pressure med's and one of the side effects is cold hands and feet. Just throwing that out there for information.

2nd-- Accupuncture. I tried it 2 summers ago. I went to a Accupunture Doctor recommended by my Radiation Oncologist as he was suppose to be able to deal with cancer patients with dry mouth. I met him and he told me that if I didn't have saliva after 6 treatments, I would be wasting my money. Luckily, our insurance covered the treatments. I asked what the charge would be anyway so I would know the amounts charged. I did have a small co-pay.

The treatments did not work for me by #6 so, I tried one more. After #7, I still had no saliva, so I did not go back. I do know one gentleman that had told me to try it because he did and had saliva after the 2nd treatment. He did a 3rd treatment to be sure and has had saliva for 2 years now. What works for one, may not work for another.

My Best to You and Everyone Here

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hey Greg,
I've received accupuncture 3-4 times weekly since diagnosis. Actually I was getting it prior for the pain from the cancer. I'm 6 weeks out of treatment and have about 50% of my saliva back. Some nights I don't even wake up to take a sip of water and my mouth isn't dry in the morning. I originally went to a communtity accupuncturist that treats multiple patients at the same time and charges $15/session. Community accupuncture is available all over the country; you just need to do a search in your area. She was pretty good and helped me with most of the side effects of chemo and radiation. Then I found out that the cancer treatment center had an accupuncturist and that they gave out partial scholarships so I switched to him until my scholarship ran out. He is amazing and practices Japanese accupuncture which uses a gold needle and a silver needle to move Chi. The needles aren't actually inserted but rather pressed firmly on the places that the accupuncturist determines they are needed to direct the energy flow. When I told my Chinese medicine guy that I was getting a scholarship for accupuncture at the center he offered to match the rate of $15/session. Since then I 've been getting accupuncture there. I notice the accupuncture working. Within about 5 minutes I fall fast asleep and don't wake up until I'm awakened approximately an hour and a half later. I always feel better after accupuncture. It could just be the nap but I don't think so. Most insurances don't cover it but you do get to deduct it from your income as non-covered medical expenses so do get receipts. Same goes for massage and actually anything you spend money on related to cancer/treatment that isn't covered by insurance. I highly recommend accupuncture and I imagine it would be effective for your cold issues as well. I'd be happy to introduce you to my accupuncturists when you're in the area. Let me know how I can help.

Bob

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Hal, Marine, Bob - Thanks guys, really appreciate your comments. I have been reading up on TCM and some of its benefits and it's definitely something I'm considering. I've been going to a few QiGong classes along with taking some TaiChi and trying to read up on how they are all related. Love the TaiChi, still trying to get my head around the QiGong though. Think I might just have to find the right instructor/teacher for QiGong to let it sink in for me. Through a local cancer support group I go to, I found an accupunturist that is supposedly very reputable. I'm thinking of setting something up with her even if she can't fix the saliva issue, maybe she'll help with other things like a couple of you mentioned. And as usual, good point by Marine, what works for one may not for another. Guess the only way to know for sure is to try it.

Thanks again.

Positive thoughts!
Greg

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Bob, thanks for the information of the possibility of community accupuncture. I'm going to see if it's available in my neck of the hood--Fresno. My accupuncturist told me that accupuncture was part of the cancer treatment recovery protocol in most of the hospitals in the bay area. She said I was running "hot", meaning in chi language that the toxins from treatment were still tilting to the warm side of the balance that encourages good energy flow. If I can get my chi and the lymph fluid in my neck back on track that'll be great.

best, Hal

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