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#194286 04-27-2017 11:00 AM
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Sean R Offline OP
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I don't think I've seen many posts regarding long-term, post-treatment fatigue, but I'd like to see what others might have experienced.

I'm about 4 years out from surgery/treatment and have been having some real issues with fatigue for the last year or so. This was unexpected since I had experienced a real boost in energy in the first couple of years post-treatment.

Now, however, things have changed. Some days are good, but most days are almost like the draggy tiredness I remember from radiation treatment (but without the burning throat pain!). My oncologist has me on ritalin, which helps some.

This issue has annoyed me enough that I'm actually posting for the first time on this forum after lurking for about 4 years.

Any of you long-term survivors have any experience, advice, or insight regarding fatigue?


Sean

Diagnosed at age 49 with SCC on tongue, July, 2013, non-drinker, non-smoker.
Surgery August, 2013, with partial glossectomy, neck dissection, forearm flap.
30 rounds of radiation, completed in November, 2013. No chemo.
Currently clear. Still teaching high school.
Sean R #194291 04-27-2017 12:48 PM
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Sean, there are many, many posts regarding fatigue posted on our message board. There could be several medical reasons why you are so tired. Has your doctor checked your thyroid and testosterone (Im assuming Sean means you are male) levels? If so, how long ago? Im hoping your doctor had you do a pre-treatment complete blood work up to get your baseline levels. Without those baseline numbers doctors have no idea what your normal numbers wold be. From what Ive seen on here, many survivors have problems well after finishing rads with their numbers being "off". The blood tests should be done as part of your annual follow up maintenance check ups.

If you use our search feature which is near the upper right corner of any page, type in testosterone, or late effect fatigue, or thyroid or synthroid. There should be many posts for you to read up on this. Both low testosterone and thyroid numbers are easily fixed with taking one small pill per day. Im not sure about testosterone but I know the thyroid meds are no big deal. They do take a while to work and can get changed as time goes on. I started at 50mcgs of synthroid and about 5 years later, Im up to 88mcgs which I think is due for another increase soon.

Hope this help smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Sean R #194293 04-27-2017 01:31 PM
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Sean R Offline OP
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Christine, yes, I've had and continue to have all my various levels checked about twice yearly. Everything (including thyroid and testosterone) keeps showing up as normal.

I was thinking there was a lot more on the forum about the effects of fatigue during, or immediately after treatment, but not so much about long-term issues, but I'll do a new search and see what turns up.

Thanks!



Sean

Diagnosed at age 49 with SCC on tongue, July, 2013, non-drinker, non-smoker.
Surgery August, 2013, with partial glossectomy, neck dissection, forearm flap.
30 rounds of radiation, completed in November, 2013. No chemo.
Currently clear. Still teaching high school.
Sean R #194299 04-28-2017 07:01 AM
Joined: Jul 2012
Posts: 3,267
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It's very common, and even has its own names such as Cancer Related Fatigue, Chemo Induced Fatigue, etc. and forget what acronyms they use too, to help in your search options. NCCN, National Comprehensuve Cancer Network, has its own guidelines for clinicians too, but I can only copy the 2014 version. Many centers and organizations have addressed this, but I think it's still often unrecognized in individuals.

I have chronic fatigue the past 7 years, which somewhat improved, but it could be better, and at times, not ny main concern.

I have read dozens of articles, which I try to apply in ny situation, which is basically to have a full physical, stress test with complete blood work some to include vitamin D, B12, TSH, PTH, A1C1, Creatinine, Hemoglobin, etc. and to correct any deficiencies your doctor prescribes.

Do they check you BP from seated to standing? Mine never did, and diagnosed myself with orthrostatic hypotension, which they verified. I also requested to have a carotid Doppler exam (ultrasound) to check any artery blockage.

Conserve energy where you can. I use a shower chair, and sit, instead of standing, while cooking and doing prep work.

Exercise is often prescribed. Maybe with Physical Therapy first, light walking. Yoga, Thai Chi, meditation may be beneficial and many cancer centers offer free classes

Improve sleep or it can be too much too? Some have sleep apnea, I did for a while.

Check medications as so e may have tiredness and other factors causing fatigue.

Maybe see a registered dietician or nutritionist. Get adequate nutrition and hydration. Limit caffeine, alcohol, sugar drinks, which energize you, but may drop your energy levels lower later on than they were before.

Counseling, therapy is often prescribed. Check for depression

Here are some good link that pretty much mentions everthing better than I can:

http://chemocare.com/chemotherapy/side-effects/fatigue-and-cancer.aspx

https://s3.amazonaws.com/pfizerpro.com/fixtures/oncology/docs/NCCNFatigueGuidelines.pdf

https://www.nccn.org/patients/resources/life_with_cancer/managing_symptoms/fatigue.aspx






10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Sean R #194302 04-28-2017 09:02 AM
Joined: Sep 2016
Posts: 111
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Posts: 111
Sean -

I would imagine that the after treatment issues vary in type and intensity for anyone whose gone through the surgeries and radiation / chemo treatments.

Fatigue is part of what I'm dealing with, among other things. My thyroid seems to be the cause of at least part of the dragging / sleepy feeling. (I'm about three years out from my most recent set of surgeries and radiation treatments.)

The responses above were pretty comprehensive regarding information available and what to do about fighting fatigue.

I push through the fatigue as much as I can and try to get as much restful sleep as possible. It may be annoying, but it's your new "normal".

Good Luck


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Sean R #194348 05-03-2017 08:40 AM
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Sean R Offline OP
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Well, if it's the new normal, I'll just have to adjust. The main problem I have with fatigue is while I'm at work. On days off, I just sit down and take a nap, which works quite well.

But, after going through the surgery and radiation treatment, and all the other things that went with it, I feel that I can handle almost anything - cancer puts everything in the proper perspective. And right now, fatigue is really the only issue I have, so I'm thankful for that.


Sean

Diagnosed at age 49 with SCC on tongue, July, 2013, non-drinker, non-smoker.
Surgery August, 2013, with partial glossectomy, neck dissection, forearm flap.
30 rounds of radiation, completed in November, 2013. No chemo.
Currently clear. Still teaching high school.

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