Tykerb: Brain Confusion & Body Aches

[Mary Jeanne Phillips]

Hey Everybody!

My first week on Tykerb (3 Tablets a day taken before bed on an empty stomach) went pretty well...no major side-effects, so far.

But, I am experiencing some real Confusion that feels different than "chemo-brain". Describing the Confusion is difficult - sometimes I loose a thought in the middle of a sentence and sometimes I feel mentally lost.

I was wondering if any of you have had similar experiences and, if so, what helped?

I've also been having full Body Aches and real fatigue. Does this sound familiar to any of you?

I really appreciate all of you sharing...it has meant the world to me and helped me decide to use Tykerb.

Thanks and Hugs, MJ

[JustwannaBE]

Hi MJ: Yes, I had confusion all the time while I took tykerb. I didn't realize it was tykerb until I stopped taking it. But I know the feeling. I would sit there and thought I knew what I was doing and then a second later, didn't know what I was doing. I also was really fatigued. I was only on it for 6 weeks before I quit taking it. I was taking 4 tablets a day (at night like you). I don't know if I will go back on it. I really don't think I will, even if the dr wants me to take only 3 pills. Good luck and let me know what happens with you !

[Mary Jeanne Phillips]

Hi wannabe, thanks so much for the note. I am so glad someone else has the same thing. I never had a reaction to Herceptin. I am on my second year (Dec.) started it after my 1st brain tumor. Had a craniotomy then. Since then I have had 4 tumors zapped by gamma knife. that is the main reason I am taking Tykerb. Hopefully to stop the brain tumors from appearing. It does cross the blood brain barrier. I am still very confused but on 2 I think I can make it!! MJ

[hutchibk]

I have been on Tykerb/Xeloda for 18 months. I can honestly say that I do not have confusion from this combo, that I didn't already have from chemo brain. (also, the forced 'chemo-pause' menopause causes memory issues/mental fogginess.)

I have tolerated it very well... I think it just takes your body some time to get used to it. But everyone is different and it would be a good idea to mention the concern to your doc!

[grandma2]

i'm getting more curious...some of you are on 3 tykerb daily. i'm starting 5 daily...i thought that was the standard dose. i'm starting tonite and nervous after what happened last week with xeloda. how fast do the se's come about. thanks

[Mary Jeanne Phillips]

HI GRANDMA2, Yes 5 is the standard dose but I can barely tolerate 3, so I am my own Dr. I have gone from 2 to 3 and on the 6th and 7th day of 3, I can hardly get out of bed. I have never taken systemic chemo since my first diagnosis in 2001 when I had 2 lumpectomies and did 35 radiations and 5f4u and cytoxin or something like that. I did not take adriamycin, again being my own DR.
My metastasis began in 2004 with liver, lungs, and bones, very dire diagnosis, but took femara for 6 months, which again was all I could stand and changed my diet totally to Macrobiotics (which is a treatment in itself, that many people would prefer to take chemo) Anyway, when I began having the brain tumors we found I was no longer stable in the mets, so I started on Herceptin. I tried xeloda but absolutely could not have quality of life with it, so now I am on Tykerb alone. I don't know if it is helping me or not, but I prefer quality over treatment. I also do diet and hypnosis and massage. I won't have another PET for 3 months but my MRI is due this month for the brain tumor follow up. I am on Tykerb aminly to stop the brain tumors since it has proven to go accross the blood brain barrier. I juice green vegtables every day and drink Green magma and take 3 Tykerbs. Have not had diarhea, but have real fatigue. I am almost 70 and extremely active so I tire out in about 4 hours. Still doing fun stuff FIRST,but do take naps every day.I do take them at night an hour or more after I eat. When I get sick on the 6th or 7th day, I go back to 2. I have been proactive with the disease for 7 years, and I now get Zometa evry 4 weeks as before I got it every 3 weeks. I do believe it has helped in the bone progression. Ibelieve I am cancer free everyday and tell everyone I know to pray for my health and that I feel GREAT!!! I don't want anyone to think of me as being sick or having the big C.
I hope you the best. I do have brain confusion and find it worse when I get tired. sometimes my mind is totally blank. I take ativan for my anxiety and it helps keep me calm. I believe th more stress free we can live the better. I am in the middle of a move, and my mantra almost every minute is : I'm cool, calm, collected, relaxed and easy going." Many people have NO side effects with Tykerb. I am rambling, but I did remember that I do have a slight rash on my face and the finger nails and toe nails are paper thin and the ends of my fingers are very tender. I think that if that is all there is, then I can stand that. I just can't stand not being able to get out of bed every morning.
LOTs of love to you. Write me back or call me 904 881 8428. This is a great site, I have just not been able to get on it recently because I am moving. Love, Mary Jeanne

[kk1]

I am glad you brought this up. I also have the brain confusion/focus problem since I started Tykerb, and I didn't seem to have too much of a problem before. Now I often can't complete a sentence and can get completely and utterly side track by the most minor things. I recently stopped working because I can't stay focused long enough to get anything accomplished or remember what the people I'm supervising are working on or what I told them to do. It's as if I have extreme ADD. Here's an example:

A week ago I was sitting at my desk and needed to get my thumb drive out of my briefcase. At some moment between getting up and looking for the drive my brain decided I was looking for my flip-flops, of course my flip flops were not in my briefcase but I'm getting very frustrated and for several minutes I can't find or hardly remember what it is I'm looking for, Ssuddenly my brain starts to function again and asks itself "why the hell am I looking for my flip flops in my briefcase."..ah that's right I'm looking for my thumb drive, and so the cycle repeats all day long. uggh.

On the bright side it's better than the alternative (nasty chemos) so I figure I shouldn't complain too much.

[grandma2]

mary jeanne, i sent you a long response but it somehow traveled to the ozone layer instead of to you i guess. i'll try to resend. i appreciate your comments, gm