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Dr. West- Tried this onGrac Talk

1 Recommendation

Dear Dr. West and colleagues,
I started 150 Mg. of Tarceva on Jan. 23 and the fatigue was so bad after 7 days I had to stop taking it. I was in bed 24/7. I am starting a new 100 Mg. dosage today (2/5). Do you have any recommendations for counteracting or controlling the fatigue? I have read many posts and fatigue does not seem to be a side effect of Tarceva, yet it is by far my worst.
Thank you in advance for any advice you can give me.
I hope you are doing well,
Susan L.

28 replies

Fatigue was a problem for my husband as well and the only thing that seemed to help him was taking the pill at nite and going to bed alittle earlier than normal. He was only on a 25 mg dose after the 150 mg was way more than he could handle. That 25 mg dose worked in combination with avastin for nearly two years at holding things pretty much stable.

Yes yes yes fatigue does come with tarceva, my husband is taking 1/2 of 150 one day and 150 the next....he has been taking it for four months and it is working....so fight the battle...it works....he also takes it ab night....good luck

I hope it works for you susan.. god bless and praying that this one works..
hang in there sweetie..
lisa

Susan,
I had terrible fatigue also. I did use coffee and tea to help boost me, but it would only do so much.

After my terrible bout with a Grade 4 rash and having to go off the Tarceva and gradually go back onto it, I started to "play" with the dosage myself. My Onc was not happy, but I had to do something because I was having far too many side effects.

I know I took a chance not taking it at 150 mg all the time but at that point I had no quality of life. I was so disgusted I said to my hubby, "If this is the way I have to live, it isn't worth it." Well, it seems that taking 150 mg a day is not always necessary for MY body because it worked ok. I also remember in the very beginning that my Onc said he wanted me on the 150 mg in order to hit the cancer fast and hard. Obviously it did.

I am hoping that the 100 mg is a little more tolerable. Maybe some caffiene will help.
*****Many Hugs*****
Marylou

Susan,
Thinking of you! I will send some energetic thoughts your way!

Erin

Will be praying for you.
Pam

Susan,
My dad has been taking Tarceva 150mg for 2 months now. he has fatigue and not as active as before, after about 5 weeks and it's one of the side effects the nurse told him. he will see his onc. this monday. will keep everyone posted.
Wishing you the best.

Hi Susan,
I am also on 150 mg it does tire me but not to the extent you seem to be having, As I am working I have to take a couple of short naps when I get the chance in my highly secluded office (haha)
Anyway I hope it gets better for you soon
Warm wishes
micky

Susan:

Many prayers for you. I had a very hard time with this drug and all I can say is hang in there.

MY PRAYERS ARE WITH YOU

GOD BLESS,
LINDA

Marylou. what dosage did you use.
love, susan

Susan:

I was taking 150 mg, but when it got really tough with all the side effects I cut them in half and took a half pill for several days until I could feel a rebound. It usually took about 3 or 4 days on the 75 mg before my body started to feel better. Sometimes I even stayed on the 75 mg for a week before I went back to the 150's.

I sure hope the 100's don't knock you out as much. I do not understand is why they make this drug in 25 mg, and then I think they skip right to the 100 mg and 150 mg. It seems to me that there would be a lot of use in a 50 or 75 mg tablet. Sure hope you feel better soon. I KNOW it's going to work for you.
****Many Hugs****
Marylou

Susan,

Sorry if you're having trouble posting on GRACE. I'd love to fix problems that you and/or others may experience, so please feel free to e-mail info@cancergrace.org to describe problems that we might be able to troubleshoot.

Fatigue is probably the third most common side effect after rash/skin issues and then diarrhea. Aside from dropping the dose and/or taking a break, which is likely to be effective, it's possible to take a medication to boost energy, such as ritalin (yes, it's used for attention deficit disorder and can have a calming effect in them, but in adults, it typically acts as a stimulant), or provigil is another one. Those are both pretty expensive, and some insurance companies may offer some resistance, but they can be effective. Sometimes we'll give a low dose of a steroid like decadron (something like 2 mg per day), but steroids probably aren't a great long-term solution because they have plenty of side effects as well, some short-term and others long-term.

Still, the overall goal is to have a patient be able to manage on a daily tarceva dose that they feel they could manage for a prolonged period of time, if they're fortunate enough to not progress during that time.

-Dr. West

I didn't quite finish the last thought. For many people, a dose reduction is a far more manageable long term strategy. I'd estimate that about 10-20%, and maybe even a higher proportion, do far better after a dose reduction.

-Dr. West

Susan, I was at my primary doctors office yesterday, he is a D.O. I ask how long the fatigue lasts after treatment ends, said could be weeks, months and I added years. He is all big on Mona Via, which is from the Brazillian berry called Acai. He has had patients taking it during chemo treatments and they did not suffer from fatigue and also after the treatments. Says he takes it himself and many other patients of his do too. I have not tried it, it is somewhere around $40. a bottle of about 16oz and you take a couple ounces a day. Sounds pretty expensive to me and I do not know if if would work with the tarceva but it is a thought. Hope it helps with cutting down the dosage for you. Probably just too strong for your body to handle. Good Luck and God bless Arletta

Susan -
This is my 8th day at 150mg and its hard to stay awake. I fully understand the fatigue issue. I'm switching my dose from AM to PM to see if that makes a difference.
Hope your reduced dosage is tolerable and effective - I wish you all the best -

Debbie

Cathy & I wish you well friend!

Dr. West has lots of great information and he always responds to questions.
Susan, remember to laugh......whatever makes you giggle, smile or outright sidesplitting laughter......do it!
Movies, shows, friends.......Laughter makes us full of life energy.
You are in my prayers Susan.

Bill & Cathy

MaryLou. you cut your own pills? i think i needto do that. I'm alredy getting the bad side effects from 100 mg. Maybe if I switch off...
Susan

Thanks Dr. West. I've been on 100 mg for two days and I am already starting the effects.
Would it be reasonable for me to cut my 150 tabs in half and try 75 or somhow do a dosage switch each day?
Susan

Good luck Debbie. I take mine at 4:00pm and I notice around 1:00 the next afternoon I hve to go to bed (not sure about 100 mg). Keep us posted and good luck.
Susan

Though you could probably cut the tabs, they are available in 25 mg tabs as well, so I'd prescribe these to patients who need more flexible dosing and can't tolerate the 100 mg dose well. Some people are just very sensitive, and I'm sure there are people here who have done well for a long time on rather low doses.

-Dr. West

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