#74310 05-13-2008 08:09 PM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | OK, I will try this again.. I lost my other Post.
I am now about 2 1/2 years passed Treatment. I would think I should feel better. I am very tired after 2 pm. I am only good for about 4 hours.
Is anyone else going through this?? I am only 59, not 89!! Yet I feel that I can not do what I should. Maybe I am expecting to much.??
If any of you can relate to this on the same time frame. It would be most helpful. I also have to admit that I have Fibromyalgia!! A nother fun thing to deal with!! Ha ha!!
Take care,
Diane | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | When is the last time you had blood work done?
How's your TSH. Mine went bad about 6 months post TX and I take a pill once a day.
How's your sleep quality? Maybe if blood is OK then a sleep test might shed some light.
Now you've been around long enough to know the importance of editing your signature line. Help us help you.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Diane, You were trrated for breast cancer too, right? Did you have radaition for that too? I had radiation for oral cancer and then, after 4 months, for breast cancer and let me tell you it took me a looong time to get my energy back after that second radiation. I am 3 years out now and I would say it took about one and 1/2 years after the second radiation.
Still, the only time when I was a ways out that I was falling asleep midafternoon was when it turned out my thyroid had completely shut down. So I would definitely get that checked, if you haven't already.
I work with someone with fibromyalgia and my understanding is one of the symptoms of that can be severe fatigue too. Could be that that is causing the problem.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | Thanks David and Nelie, Yes, I am on thyroid Meds. I did have radiation with the B. Cancer. I will soon glow in the dark !  Nelie you are right. I forget that the fibromyalgia gradually gets worse and makes the body very tired. I just kept thinking it was all from treatment. No wonder I am tired.!! Thanks again and take care, Diane
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
| | | | | Joined: Oct 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 83 | It has only been since Dec 1 for me and I feel pretty good but tend to run out of gas if I'm doing anything real phyiscal. My regular Dr. gave me an annual recently and is telling me that my throid may need some help....Snythyroid...is what I think she wants to put me on. But, after reading the side affects I'm not sure I want to do it. Anyone else trying this stuff???
Stage 4b BOT and node on right of throat. did 38 trips of TOMO PEG tube,Cysplatin,Taxotere & 5fu 1st 4th and 7th week, changed to Erbitux for the last 4 weeks. 1st PETS since end of TX..CLEAR 6mos out and 2 nodes are hot. Bilateral neck dissection on 10/31/08. Clear Scan 3/31/09 & 8/02/2010
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | Gary,
I have been on synthroid for about a year with no side effects that I am aware of complicating things. I recently lectured at a conference in which one of the speakers was addressing the endocrine system issues for people that have had head and neck radiation. We all know that the thyroid gets nuked, and that when it does, it is easy to lose energy and the ability to regulate body temperature well. I was cold all the time before going on the supplements, and feeling kinda lethargic, though I pushed through that out of necessity. But the speaker was saying that our pituitary gland is also getting scatter radiation, and is impacted by it. That gland controls all your other glands, the master gland so to speak. He recommended testing for adrenal function and testosterone for guys. I did, and sure as anything, my testosterone was way below normal. I am now wearing some patches to get the levels back up. Next week I am going for the adrenal gland function blood test, but my guess is that it is also in the toilet.
I am curious what you have heard that was bad about taking synthoid.
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.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I have been on Synthroid for 1 1/2 years and I haven't heard of, much less experienced, any adverse reactions either. I get my blood tested every 6 months just to make sure everything is in the range. Before Synthroid I was tired and especially cold all the time.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2007 Posts: 212 | I've been on synthroid for 5 years, my thyroid issues predate my run in with cancer, and I've not experienced any negative side effects. My energy level is back, my memory is back and like everyone else I'm not cold anymore. I have a sister who has been on Synthroid nearly 40 years, she's not dealt with anything negative as a result either.
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | I've been on synthroid for a year and 1/2 and have had no side effects at all. I was constantly cold and very tired all the time--falling asleep at 5 pm or earlier-- and getting extremely fuzzy-headed in my thinking before I went on it (because my MO's office hadn't done a test when they said they would and I assumed they had and it was normal, my TSH was way WAY high and out of whack before I was finally given the medicine).
I guess I should get the adrenal gland test as well. I'm going to talk to my MO (have an appointment with him next week) about what you said above, Brian. Thanks for the info.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | My mom (now age 87) had her thyroid removed almost 50 years ago and has been on Synthroid (generic name is levothyroxine) since then. No issues whatsoever.
-- Leslie
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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