Tykerb - Fatigue

goops · 08-20-2008, 08:17 PM

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.

hutchibk · 08-20-2008, 08:38 PM

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!

goops · 08-21-2008, 07:05 AM

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.

Mary Jeanne Phillips · 08-23-2008, 05:41 AM

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

JustwannaBE · 08-23-2008, 07:44 PM

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.

Mary Jeanne Phillips · 08-23-2008, 09:02 PM

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

hutchibk · 08-23-2008, 11:31 PM

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!

JustwannaBE · 08-24-2008, 12:27 PM

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.

hutchibk · 08-24-2008, 02:49 PM

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!