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Old 06-03-2007, 06:52 AM   #1
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BeeEllGee HB User
Ongoing fatigue

I was diagnosed with Stage III-A NSCLC in January, 2004. Approx 3.5cm tumor in right lower lobe, spread to posterior mediastinal lymph node (undetected by CT or mediastinoscopy, visualized during surgery).

Had surgery (right lower lobe wedge resection) in February, radiation (35 treatments to mediatinum) from March to May, and chemo (Carboplatin/Taxol every 21 days) from March to August. The good news: so far, 90-days scans show no evidence of disease. The bad news: keep reading.

Returned to work as a medical biller (had been on disability from date of surgery thru 2nd chemo session) in late May. Could work only part-time (5-6 hrs/day; Chemo was on Weds afternoons so on "chemo week" only worked 1/2 week, needed Thu & Fri + weekend to recover) due to weakness, fatigue, & general malaise.

Around the time my chemo was completed, I developed radiation-induced pneumonitis. The recommended 6-week course of oral steriods turned out to be 6 months of oral & inhaled steroids; the symptoms didn't resolve as my pulmonologist anticipated. Well, the steroids took care (temporarily) of the fatigue, but as soon as I weaned off them (approx March, 2005), the exhaustion set in with a vengance.

I spent the next year waiting for the fog to lift. I managed to increase my hours at work (gradually) to 7 1/2 hrs/day, but only by elminiating all non-work-related activities during the week. On one weekend day I would do laundry, on the other, shop for groceries. The rest of my waking hours were spent in my recliner, zoned out. No concentration (unable to read even a magazine), fatigue & shortness of breath following moderate activity (making the bed, walking my dog 1/2 block)...all the energy I had was expended just going to work & getting thru the day.

Finally realized that I was doing myself no good & possibly some harm by pushing so hard every day. Also was concerned about staying awake during the commute home. Bit the bullet & stopped working in April 2006, applied for (& was immediately granted) SSDI, supplemented by employer-paid long-term disability. COBRA will cover until I'm Medicare-eligible, as long as I'm disabled. Financially, doing OK (not great, but OK).

Over the past year, the fatigue has not improved. Still need a nap or two each day. After 3 hours or so of effort (on computer, watch a movie, out to dinner, shopping with friends) the need is so overwhelming that I don't take the nap, the nap takes ME!

The fatigue is not caused by anemia, thyroid, depression, sleep disorder (been thoroughly tested). I've done some googling & found out about "Cancer-Related Fatigue", though it seems I'm unusual in that it's continued so long past treatement. My oncologist's only comment is that my CLL (oh, yeah, forgot to mention I was diagnosed with Stage 0 Chronic Lymphocytic Leukemia in November 2003) might be contributing, but offered no treatment suggestions.

Anyone out there with comments, similar experience, suggestions? Please help....I'm tired of being tired!

 
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Old 06-03-2007, 02:42 PM   #2
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pbj11 HB User
Re: Ongoing fatigue

Welcome Bee!

Sorry you are having so much fatigue. My husband is terribly fatigued, but he is constantly on chemo, so fatigue is a given.

I can only relate my non-cancer fatigue story. I had exploratory surgery for a never-diagnosed colon problem over 13 years ago. I had been in excellent health and recovered quickly. What I never did recover from was the onset of fatigue following the surgery which stays with me to this day. No rhyme or reason -- just tired all the time.

I get what you mean about the "nap taking YOU".

In your case, a secondary cancer could be strongly contributing to continued fatigue. I just don't really know and wish I could find the fatigue answers for myself. They did mention chronic fatigue syndrome to me, but I think that is just a catch-all category which means "we don't really know what the hell is wrong with you!"

Hopefully someone else can post more information for you.

Best wishes,
PBJ

 
Old 06-03-2007, 05:51 PM   #3
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BeeEllGee HB User
Re: Ongoing fatigue

Thanks for reaching out, PBJ.

I've looked up Chronic Fatigue Syndrome, & I agree with your assessment. Besides, I only have 3 of the several symptoms listed - & 4 are generally needed for a CFS diagnosis. Not that it would make a difference - I don't think there's much relief/cure out the for CFS anyway.

I've recently spoken with my primary care doc & we're going to try (again!) to get to the bottom of this. Hopefully, a new doc with a broader view can find something the specialists have missed.

Bee

Last edited by BeeEllGee; 06-03-2007 at 05:52 PM.

 
Old 06-03-2007, 08:28 PM   #4
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Re: Ongoing fatigue

Good luck Bee -- and DO let me know what they have to say.

I probably need to have sleep apnea checked as I wake up tired and have a brother who uses one of those apap things at night.

I sincerely hope you find answers -- fatigue IS the pits.

PBJ

 
Old 06-04-2007, 06:27 AM   #5
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HELLASRULES HB UserHELLASRULES HB User
Re: Ongoing fatigue

Hi Bee,
Well first of all I'm thrilled to hear there is no evidence of the cancer now. That's is great! I'm stage V nsclc, with one more treatment of the carboplatin/taxol to go, so your post brings me hope!
As far as the fatigue, what are they saying about the stage 0 chronic lymphocyctic leukemia? Isn't that a type of cancer of the blood/lymph system? Would that cause the fatigue?
Are you on any medications that could cause the fatigue?
I'm pretty new to this and for me the chemo brings a crashing fatigue with it.
I had a treatment Thurday and felt fine till Saturday at noon, then the fatigue hit me like a brick!
ONce this week is over, I will get back to my walking routine though as that seems to help me a lot! I hadn't exersized in 15 years until I got this diagnosis. Once the brain tumor came out & the radiation was done, I forced myself out to walk every day I could. It started out slow, less than a mile, but I can now do 4-5 miles on a really good day.
The days when I have the most problems getting fatigued and breathless are when my blood counts are low.
I think chemo does some nasty things to the body, so you have to fight it every step of the way. Diet changes, exersize, meditation, anything it takes.
And just keep looking for the answer to what is causing it. Maybe it takes a long time to get over the fatigue, I don't know. Hopefully I'll get to find out!
Just don't give up looking for the answer. I know how awful that fatigue is...I hate it more than anything.
Best Wishes to You.
Faith

 
Old 06-04-2007, 12:44 PM   #6
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Re: Ongoing fatigue

Hi, faith!

Hang in there, it gets better (tho exactly WHEN is up for debate....)

I'm not on any meds now, so that's not an issue. As for the CLL, if I recall correctly anemia is generally associated with a decrease in red blood cells, not specifically a decrease in white, so that's probably not it either. My Internist is ordering an echocardiogram, to see if the chemo has messed with my heart.

The day-&-a-half-before-hitting-the-wall is pretty common with carboplatix/taxol. I think it has to do with the pre-chemo meds (usually steroids) wearing off.

I went thru chemo & radiation at the same time. The thinking is that the chemo boosts the radiation's effect & vice-versa. I thought the fatigue was related to the radiation & waited for it to fade away after completing my 35 sessions, but it persisted all thru the subsequent chemo sessions, so I think that good effects aren't the ONLY thing that got boosted!

Barb

 
Old 06-04-2007, 03:44 PM   #7
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Re: Ongoing fatigue

Hi Barb
You know, I'm no doctor, or scientist or even close....as my old teachers will attest to, but if the red blood carries the oxygen throughout the body, then if you are anemic, wouldn't that lower the amount of oxegyn that is getting pumped around??? Hence making you tired??? I don't know...just a shot in the dark really! LOL!!!
But good to get the heart checked out also. I'll be having my cariologist do a good checkup this summer. I've always had a funky mitral valve, but not bad, so hopefully there are no changes there.
I found that the cyberknife (radiation) I had to my brain had worse effects on me than the chemo. I felt totally awful for quite a few days straight. I haven't had any other radiation, and frankly don't want any from all I've heard.
Hoping the echocardiogram shows only positive results for you. I'll be praying for you.
Take care.
Faith

 
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