#60210 01-28-2007 07:52 AM | Joined: Aug 2006 Posts: 77 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2006 Posts: 77 | Hi Guys,
I'm about 10 weeks post tx and things are going pretty well. I've got the pain mostly under control. I've been trying to eat enough by mouth so that I can have the peg removed and I'm getting pretty close (although I do eat a lot of "junk calories" to hit my calorie goal). My problem is that I have pretty much constant fatigue. I'm just sleepy all the time. I've been sleeping well, I just seem to be tired.
I'm wondering if I should start taking vitamins or meds or something. Anybody else had this problem?
Clint
Age 46; SCC BOT T3N1M0l dx 9/06 Cisplatin x3; radiation x42 Completed tx 10/31; Selective neck dissection 12/06
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#60211 01-28-2007 08:22 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Clint, It sounds like you are right on track to me. My fatique lasted well over a year. If you are still on pain meds that will make a difference when you stop those also. Vitamins don't really help much without the nutritional building blocks and if you can eat a healthy balanced diet many think that you don't need vitamins. Most of us did the junk calory thing just to have enough "fuel". I switched back to a healthy diet as soon as I was able. I never had a PEG so I had to rely on oral intake.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#60212 01-28-2007 12:36 PM | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | The dietician informed me that three cans of liquid norishment contains all the vitamins needed for a daily dose, and I was certainly choking down more than that, so she saw no need to take anything extra.
Also, there are some warnings in the Adjunctive Therapy forum here against antioxidants during treatment, so if you were concerned about that I would recommend you go there, do a search and read some stuff.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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#60213 01-28-2007 12:58 PM | 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 had fatigue to some degree for almost a year too-although in my case that's also because I had 6 more weeks of rad for breast cancer 4-5 months after the oral cancer rad ended! Fatigue can also be a sign your thyroid has shut down. You may want to ask for a test for that.
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"
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#60214 01-29-2007 02:06 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | There are a number of studies (and on-going clinical trials) which are showing efficacy of the micronutrient l-carnitine (an amino acid derivative) in addressing cancer fatigue. Several trials have shown that patients who have received cisplatin (and probably also carbo-, though the trials were with cis-) are often deficient in l-carnitine, which is important to the metabolism of fatty acids (and thus energy levels). The various studies have shown no adverse side effects at even high doses and improved energy levels and/or reduction in fatigue in many patients.
My husband took (with his doctors' OK) 500 mg l-carnitine as a liquid in juice or water each day all through treatment and for a couple of months thereafter. This appears to be the dose most cited in study results. He was never terribly fatigued, and this may have helped. (For example, he went birdwatching every weekend through treatment although for only about 2 hours rather than his usual 4.) We also told another Hopkins patient, who was complaining of fatigue, and she emailed us after a week of supplementation to say she also felt less tired and was surprised at the difference in such a short time.
I know this sounds like a testimonial for those fake "energy" pills they tout on TV, and it is also true that many body-builders and athletes take l-carnitine in hopes of improving performance. However, research has indicated that for the normal person, who is not deficient, this supplementation does no good (except to the sellers of the supplements) but there are quite a few studies in fatigued cancer patients which indicate benefit in some (with no adverse effects). NCI has a number of trials underway to get a better handle on this. A google search of "l-carnitine and cancer fatigue" will come up with quite a few references.
It might be worth a try, l-carnitine can be bought as a liquid at GNC and also is in pill form.
And as always, do not take ANYTHING during treatment that you have not run past your doctors for their approval!
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#60215 01-29-2007 07:02 PM | Joined: May 2006 Posts: 20 Member | Member Joined: May 2006 Posts: 20 | I had fatigue for about 7 months. Sometimes I still stuggle with it but it does get better with time. Nothing really helped me....just time.
Female, 36 yrs. old. Stage 1 tongue cancer; no lymph nodes; surgery & radiation
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