Tykerb - Fatigue
 

I just started Tykerb yesterday and I am feeling fatigue similar to my worst days of chemo. Does this get better once I am used to drug? Did anyone else have a lot of fatigue?

I kept falling a asleep last evening and finally went to bed at 9:00 I slept until 9:30 AM and then went to work. I had to leave work after a few hours because I could not stay awake.

For me it took about 6-8 weeks for my body to get used to Tykerb/Xeloda... at that point, most of my side effects (which were fairly mild out of the box) wore off. I have been on it for 17 months now and very little side effect. I do have a few days a month when I feel fatigued - but nothing too bad. Just give yourself a little time to get used to it. It might also be a little bit of mental fatigue (and anxiety and relief) of starting a new regimen.

Let us know how you are doing!

Thank you hutchibk, they told me if it gets to be too much that they may be able to reduce my dose. I will see if it improves.

Hi Goops,
That answers my question too. My fatigue level has been noticeable and also the sleepiness. My Dr. started me on 2 and now 3 a day, but the 3 has been harder. I am counting on what hitch says, she is an ole pro. Take care of YOURSELG. MJ

Hi Goops.
I was on Herceptin and did very well with that for about 6 months until they introduced Tykerb into the mix. I was VERY fatigued, as well as broke out in zits, had the shits every day I took tykerb. I was only taking 4 pills a day. After about 6 weeks I told the onc I couldn't handle it anymore and I have been off of it for 4 weeks now, and I have never felt better. I lost a lot of weight because of it as well, and I couldn't eat spicy foods or soda. My taste buds changed and I wasn't hungry and didn't want to eat. I didn't realize how tired it made me feel until I quit taking it. I am so energized now and feel better than I have since my diagnosis in May of 2007. Oh, and another thing, I realized after I quit taking it, that it interferred with my concentration at work. Now I don't feel confused about what I am doing and I don't feel 2nd guessed at my decisions or what I have done. My onc also said I looked the best I have looked since he started seeing me. I may never go back on it, it all depends, but I told him I did not like it at all. It was a horrible, horrible drug for me, and I know, everyone reacts differently to these drugs, but I hate that drug and never want to go back on it again. Good luck with you ! Keep me updated.

Hi justwannaBe
Since you are off Tykerb what are you taking? I appreciate the feed back. I had to back off of the 3 pills I was taking. I had the worst day of my life this week after 7 days of 3. I am now back to 2. Have a rash on my face and something funny in my mouth. Felt better todau after just taking 2 for 2 days.
I am glad to have the confusion confirmed. I think this is worse than the chemo brain I had 7 years ago. thanks for all yall's responses. Thanks Goops, for you note. MJ

JWB- so you were on Tykerb/Herceptin combo? Ahhh - I wonder if you would have had the same side effects from Tykerb alone or in combo with Xeloda? I would venture to guess that your side effects were due to the TY/HERC combination... but everyone reacts differently. We you consuming any grapefruit products while you were on the combo?

MJP -are you on Tykerb alone, or with another chemo? There are threads on here that address treating the rash... it usually goes away after 3-6 weeks, but for some it is tough. Luckily, mine was very minor and cleared up after 2 weeks.

Good luck girls. Let us know how you are doing!

Hi ya'll: I will give you some background...I was on taxol/herceptin until January of 2008.Then I was only on herceptin until April, when they found a tumor in my liver. I had a liver resection done and then started herceptin again in late May. I guess in June, I started taking Tykerb with herceptin. And from the first day of tykerb I had the diaherrea and tried taking immodium, but I couldn't live like that for a year, along with all other awful side effects. No, I did not take anything that had grapefruit in it either. Also, a week after I started tykerb, I started Avastin. So, I was on Herceptin (which I did great on alone), Tykerb (which gave me all those problems) and Avastin. I quit taking the tykerb and all my problems disappeared. I am now on Herceptin and Avastin, at least until my next pet scan, which will be within the next few weeks. I cannot take Xeloda as I am not er/per +. I am doing very well with Herceptin and Avastin. Right now, I am not so concerned as my CTC blood test shows 0, and the her2 new serum test shows 6 (which is in the normal range). I think I am very lucky right now. Also, my tumor markers were and still are all in normal range - go figure.

I am curious where your Xeloda info comes from, as being er/pr negative does not preclude you from taking Xeloda. (however, being triple negative, i.e. HER2,er,pr negative, is a diagnosis that seems to NOT get much benefit from Xeloda.) With the HER2 positive component, and in combo with Tykerb, it is a very effective, synergistic and powerful punch. I, too, am er/pr negative and have been on Xeloda with Tykerb for 17 months with tremendous and fantastic results. Many of us here are er/pr negative and have benefited nicely from Xeloda for long periods of time.

I am not convinced that you would have the same side effect from Tykerb alone or in combo with Xeloda (should you ever need to find a new combo in your fight) as you experienced with Tykerb/Herceptin/Avastin. That is a novel and experimental combination that most definitely can kick anyone's butt until researchers work out the tolerance and dosaging. I don't doubt that taking something out of the mix made you feel ALOT better, but I worry that you have painted Tykerb as the single culprit to the severe side effects, when it has not even been fully tested in that combination....

I hope you might consider giving it another chance someday (in combo with Xeloda) should you ever need it as an option!