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trt Offline OP
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Especially after exercise, increased fatigue for 2-3 days.
I am doing phys. therapy for back pain. Exhaustion lasts several days.

Thyroid (TSH is in range at 0.65; I don't know what it was before Tx), blood are normal. Docs say that it's not due to Tx, and that it's probably due to stress, depression, etc.though I don't really believe it.

I sleep a lot and am still tired. I used to feel great during and after exercise. Now I feel lousy.

I don't know if the heart and lungs need to be worked regularly and I would get endurance back by pushing thru fatigue or allow myself to rest until I recover somewhat each time.

I have not tried vitamins that some posters mentioned.



Last edited by trt; 07-30-2008 01:15 PM.

Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
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Other than being older I don't feel any different regularly exercising than pre Tx. If I stop for brief periods like Tax Season it's also no more difficult to get back in the routine than before. I do take a daily thyroid pill as my thyroid crapped out about 4 months post Tx.


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.
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I feel that way sometimes (Severely fatigued and just achey all over) but it has seemed that the more I am exercising and pushing myself the less this has been happening. As David said, I actually echoed today to one of my Dr.'s Nurses, I don't feel it but the reality is I'm not getting any younger! You may have a very valid point regarding the stress and depression. I would keep that in check with your doctors as that can truly affect your energy levels.
Best of luck,
Steve


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

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I was talking to a friend of mine, who is the chief oncological pharmacist at the local CCC, and he warned me not to underestimate the abuse my body withstood with the treatment. As the guy in the Reader's Digest article, posted elsewhere, noted, "First we hit you over the head, then we set you on fire."

My buddy specifically observed that doctors often do a poor job of educating patients over the late effects of radiation, chemo and surgery -- the symptoms that don't even start for 1, 2, 3 or more years after treatment. He advised me to step up my exercise regimen, even if my muscles continue to hurt for awhile. He has seen more positive results from that than anything else. Of course, he then observed that I was getting old . . .


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
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Are you sure your radiation doc didn't do a thyroid test before treatment? They normally do? Check with him/her.

You didn't say if you are on thyroid meds. 0.65 is barely in range, range I think is .5 to 5.5 quite a wide scale so you are on the overactive end. I can't remember if fatigue if one of the symptoms on the overactive end or not. I'll try to look it up tonight.

Tkae care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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I would run a complete hormone panel. This is on the very low side of things, and significantly reduces energy, and you may find a tendency to get chilled easily as well. Remember that your thyroid, which not directly in the path for most IMRT patients, does get some scatter radiation and damage. Also your pituitary which is the master and commander of all your other hormone glands. I found that even my testosterone was in the dump, and you know how far away from the field of radiation those jewels are. It's a function of pituitary exposure. So I am on synthroid (took several months of blood work to get the levels right) and testosterone patches daily as well. It has really improved my energy levels.


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.
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trt Offline OP
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I am not on thyroid meds. They all said it was normal. What is the ideal number?

I asked the surgeon about testing for vitamin and l-carnitine deficiencies. The response was she has no experience on the subject and to check with a primary care provider.
I could also talk to a nutritionist though I don't know if they can order blood tests.

I'll ask about a complete hormone panel.

Who should order the tests: surgeon, RO, or internist?

Like before, I am sensing resistance as if they don't care or want to help with fatigue, as if it is not their field and they are just interested in performing Tx.

Last edited by trt; 07-31-2008 12:11 PM.

Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
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Ideal would be as close to what you were before radiation. Mine is 2.5 to 2.8 for example. I'm going to ask again. Did anyone do any blood work before or during your radiation. If so it should have included thyroid tests. Ask them.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Any of the doctors can, at your request, order the blood tests to check on your hormone levels. Even low normal is something that can cause fatigue, and as time goes by from the point of treatment, the chance to go hypo thyroid continues to increase. I was good for the first couple of years, and then things began to tank. Annual blood work checking this stuff for people with H&N radiation should be the norm.

Too many institutions and doctors want to let you go after primary Tx is done. You will continue to have issues, and need to find a "gatekeeper" doctor that will monitor lots of things that go bump in the night for years to come. It is surprising how many of your primary people are not up to speed on the long term issues that are consequences of treatment. And since most of these are not life threatening, they are not that concerned about them. Unfortunately your QOL is significantly impacted by all these things.

You have to begin to be your own advocate for screenings, monitoring, and more from now on. Your original team may not be the people that handle you for the rest of your life. While I copy my docs at MDACC with all my scans etc., I have an internist that I trust locally (and who trusts me with the things that I bring to her) that orders all my tests, prescribes Rx's for blood work, supplementation for hormones, scans and more.

Vitamin supplementation is likely not your issue.


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.
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trt Offline OP
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Yes, blood work was done many times before and during Rad.
I don't know if it included thyroid tests. I asked via email but did not get a response. I'll make appointments and ask then if I dont get a response.

When I ask for a complete hormone panel, which tests should it include. If they don't want to do all of them which ones are most important.

Is it fairly simple to add vitamin deficiency and l-carnitine tests, just in case?

If I run into resistance, what are some good arguments that tests are needed. Should I bring them copies of studies...

Last edited by trt; 08-02-2008 11:28 AM.

Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
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