I am 4 weeks post radiation and still am very fatigued. The slightest activity wears me out! I was always very active, so this is difficult. Along with not being able to eat, I am a mess. How has fatigue gone for the rest of you?

Betty,

You are out of that dark tunnel and you will now SLOWLY, I repeat SLOWLY but SURELY recover. You won't be able to see daily improvements so don't expect it. At the early post Tx recover stage which you probably just started after 3 weeks post Tx, you will have good days and then a bad day. Slowly you will have more good days than bad. Then your bad days will go away for good. Your strenght will also slowly return.

Hey, rejoice though....THE WORST IS FINALLY BEHIND YOU. You have made it!!! Congratulations for a very important job well done. In no time you will be helping others just starting their Tx. It's important to write down as much as you can now about what you went thru and what you will be going thru. As time goes by we all tend to forget some of the little but important details of our Tx and recovery.

Hi, Betty- just wanted to chime in that you may well feel fatigued for several months after rad. tx. And being able to rest is VERY important to your recovery, as is continued nutrition and hydration. It is very difficult for active people to deal with this "new routine", but you need to consider it as part of the process of getting well. Easy to say--hard to do Amy in the Ozarks

Betty,

Have you had your thyroid function checked? Even after my daily bouts of post-tx fatigue seemed to go away (about 2 months for me), I would occasionally have a day here and there where I would feel as tired as I did the day after treatment. However, since they were infrequent, I didn't think much about it. Finally, my wife said "you seem much more tired" than you have for a while. I mentioned this to my ENT on my next visit. He suggested having a blood lab done to test for my level of thyroid function as reduced function was a common side effect of H&N radiation. Sure enough, my function WAS diminished, I was placed on a synthetic hormone, synthroid, which I take via a tiny pill every morning. That was over 2 years ago and I've been fine ever since. If I get tired now, I realize it's more likely that I'm 53 and probably overdid it!

It will get better.

If you're like me, in a while you'll feel much better, and you'll be glad to be back to normal after lacking energy for such a long period.

Then in time you'll feel better yet.

Then later you'll feel even better, and it will seem like a small gift because you'll realize that feeling worn out to some degree seemed normal.

I did, however, do light exercises daily which may have helped the timeline.

Hi Betty-

Besides having your thyroid checked, which everyone who had radiation for HNC should do (regularly), you may wish to ask your doctor about trying l-carnitine supplementation.

There is a growing body of evidence that l-carnitine deficiency is not uncommon in cancer patients, especially in those who have received cisplatin (and probably also carboplatin) therapy. This amino acid derivative is critical to fatty acid metabolism.

Some recent studies (google "l-carnitine and cancer fatigue") have shown significant benefits and no side effects for moderate l-carnitine supplementation. Several ongoing NCI clinical trials are now assessing this in a larger patient population (see below).

With his doctors' OK, my husband took 500 mg l-carnitine in his later treatment stages and in the month following end of treatment. and he never experienced serious fatigue. Another Hopkins patient (who reported severe fatigue similar to that of Betty) decided to try it as well and she said she regained normal activity within a short time. These are just two "anecdotal data points" (that is, there may have been other reasons for the loss of fatigue) but clinical studies have also shown similar results in controlled environments.

L-carnitine is often touted by sports enthusiasts as an "energy booster" but there is little or no scientific evidence to support this in a healthly individual with normal carnitine levels. However, the story for cancer patients appears to be different.

Here is description of one NCI trial:

Carnitine Supplementation for Cancer-Related Fatigue

Name of the Trial
Phase III Randomized Study of Levocarnitine (L-carnitine) for the Management of Fatigue in Cancer Patients (ECOG-4Z02). See the protocol summary at http://cancer.gov/clinicaltrials/ECOG-E4Z02.

Principal Investigators
Drs. Ricardo Cruciani and Russell Portenoy of the Eastern Cooperative Oncology Group

Why Is This Trial Important?
Fatigue is one of the most common side effects of cancer and cancer treatment. For many people with cancer, fatigue may become a critical issue in their lives, affecting their ability to work, to socialize, to relate to family and friends, and to maintain a healthy lifestyle. Despite its prevalence, however, there is no standard of care for the treatment of fatigue in cancer patients.

Low levels of the nutrient carnitine may contribute to feelings of fatigue in cancer patients. Carnitine plays an important role in cellular energy production by helping in the metabolism of fatty acids, which represent a major fuel source for tissues such as the heart and skeletal muscle. Levocarnitine (L-carnitine) is a nutritional supplement that may help alleviate fatigue by increasing the level of carnitine in the body. In this trial, researchers will assess the prevalence of carnitine deficiencies in cancer patients and examine the effect of carnitine supplementation in patients experiencing moderate to severe fatigue. Patients will be randomly assigned to receive levocarnitine or a placebo.

"Fatigue is a major complaint of many cancer patients, but it is one of the least studied complications of cancer and cancer treatment," said Dr. Cruciani. "With this trial, we hope to learn better how to improve the quality of life and well being of cancer patients."

Hello All,
Haven't been on the board for a while, hope everyone is mending & healing. This subject jumped out at me as my daughter is very deep in fatigue right now. Ironically when she finished radiation on Dec 22nd, she actually had an energy surge

Gail - I went to the link you indicated and got a "page not found" error msg on the NCI page, but a search on the same page for the L-carnitine and the trials yields info at the following link:
http://www.cancer.gov/clinicaltrials/ft-ECOG-E4Z02

Bonnie - my son who completed tx right about the same time your daughter did, is also experiencing fatigue. Maybe the L-carnitine or having thyroid checked would be something for us to look into.

bonnie, i can't speak directly cause every cancer patient is different. i went thru ups and downs that have begun to level out but am much lower in stamina overall. time is what is necessary. please be patient, even with your desire to see her improve for her own well-being. i can't tell you how pissed i would get when i felt like my condition and situation was being painted to look better for other people's comfort (xwife)... even the gentle yet insistent encouragment from anne-marie would irk me cause i was irksome occasionally cause i already knew i was trying to heal as fast as i could. i ended up jumping back into work sooner than i would like but the drive to earn money for rent so i don't have to move again gives me some focus that lets me not obsess over my other symptoms that are still with me.

the most important thing i can tell you as a caregiver to give her as a patient is time. give her time to be tired, and time to rest and time build strength.

i know everyone means well here, but has any of us stopped to consider how grating on a patient's nerves it can be to have someone assume that instead of being tired, or a little down today, that we have malffed thyroids and a severe case of depression?

don't minimize the issue, but don't turn it into a disease at first glance. time, patience, and some more time.

fyi everyone, i'm not into the code thing, so i'm just going to put that i'm the guy anne-marie is talking about, the good things anyway. the bad things must be referring to some other dude.

WOW, Charles your post was tremendous! I've printed it out for Teri - I KNOW she will agree! This is REAL insight coming from someone who's right there where she is. We went to the onc today & he is testing her thyroid. Other than that he says she just needs to eat, eat, eat (which is easier said than done). He said her scan looked "ok", BUT he wants the head of radiology to review it - this has us quite nervous!
Charles, Again, thanks for your post!
Bonnie
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CG 41-yo daughter, stg 3 SCC lateral tongue, partial glossectomy, mod neck dissection, 1 postv node, IMRT x 30 complete 12/22