Tykerb only

[adrien]

Hi,
I am on Tykerb only (no xeloda) as I'm having radiotherapy for skin tumours.
I do not have any diarreoha. I do have skin rashes but would be interested to know if there was anyone else out there on Tykerb ONLY and what side effects they have experienced.
Are the dreaded runs a result of the combo or Tykerb alone?
Adrien
http://her2support.org/vbulletin/images/statusicon/user_online.gif http://her2support.org/vbulletin/images/buttons/report.gif (http://her2support.org/vbulletin/report.php?p=140977) http://her2support.org/vbulletin/images/misc/progress.gif http://her2support.org/vbulletin/images/buttons/edit.gif (http://her2support.org/vbulletin/editpost.php?do=editpost&p=140977)

[hutchibk]

Looks like you worked it out, Adrien, putting up the post.

You should get a few answers from some who have been in the Tykerb Only trials...

[Connie Jean]

I have been on Tykerb only since August, 5 pills a day. I had some minor diarhea in the beginning. I had a small outbreak of the rash last week but it is gone now. I have had a general feeling of tiredness and have not had as much energy as on herceptin. My onc says tykerb peeks about the 3rd month and then levels off as far as the side effects are concerned.

[chrisy]

Hey I'm close - I'm on Tykerb+Avastin. I can assure you, the fun run is due to the Tykerb, for sure. For me, it was never debilitating but has not completely stopped. It is occasional (but on those occasions, it's, well, insistent!) and responds well to immodium if I really need it. Which is basically if I'm getting on a plane or something LOL.

[hutchibk]

hahaha, 'fun run' - that is hilarious, Chrisy!

[Georgia girl]

I am on Tykerb only since May, 07. Other than the diarrhea, initially I had some "hand and foot" syndrome, which disappeared. The worst side effect was and still is very sore toes (like ingrown toenails) and a few infected fingers. I have also had some hair thinning, but it seems to have stopped. The toe issues are definitely the worst problem - treat your feet very well. Doc reduced my dose to 3 pills/day, but it hasn't helped the toes.

[adrien]

yes will take note of your warniing re look after your feet as I'm developing cracks -both feet and fingers. Started using Golden Seal (herb) ointment for cracks and sores. Good stuff.
face now settled phew! teenage angst all over again.
Adrien

[Vanessa]

I am trying to ramp up my dosage of Tykerb, but I am only on 1 and I am extremely sick at my stomach and can barely eat, that is really the only side effect I am having. I did eat some dinner last night, but lost it when I brushed my teeth. Somehow brusing my teeth triggers that. I am going to move up to 2 Tykerb's tonight, but I am a little scared. Tykerb is the only thing I am on right now, but I start back on abraxane on Friday.

[adrien]

Hi Vanessa, Can you tell me what Abraxane is?
Thanks Adrien

[tousled1]

Adrien,

Abraxane is the newest of the Taxanes. It's different from Taxatere and Taxol in that it uses no chemical solvents. That means it's easier on your system -- no premeds required. The side effects are basically the same as with the other Taxane drugs. Abraxane is for metastatic breast cancer after failure of a chemo combo for mets or a relapse within 6 months. You should also have had prior treatment with an anthracycline.

[michka]

Hi Adrien,
I hope you are doing OK. I started Tykerb alone almost three weeks ago. I started with 2 pills for 5 days, then 3 for 5 days and I am now on 5 pills a day. I started by feeling very thirsty. Especially at night. Now I have the "hand and feet syndrome". I hope this will pass because it is additional pain I do not need (this is stupid: who needs it!). I also feel very very tired and it is getting worse. I read from other posts that these side effects might disappear after a few weeks.
Michka

[hutchibk]

Abraxane is paclitaxel (which is what Taxol is) with a different, less toxic, and a seemingly more effective "delivery system."

"Abraxane® is the first albumin-bound taxane particle
of approximately 130 nanometers that takes advantage
of albumin, a natural carrier of water-insoluble
molecules (e.g., various nutrients, vitamins, and
hormones) found in humans. Albumin is a protein
that acts as the body's key transporter of nutrients
and other water-insoluble molecules and selectively
accumulates in tumor tissues."

http://www.abraxisbio.com/products_abraxane.htm

[Susan2]

I started on Xeloda and Tykerb together. The side effects were bad enough to drop the Xeloda and reduce Tykerb to 4 a day. The side effects went away for the most part. So, I was on Tykerb only for about 3 months. However, my tumor markers started back up. So, we started back on the combination. The side effects (all the usual) are coming back. So for me, Tykerb only - 4 pills seem to have minimal side effects. I tried a couple of times to increase back to 5, but the side effects came back.

[michka]

I am posting again on the Tykerb alone thread.
I feel very very tired since I started Tykerb. I was not that tired on Herceptine. Nobody seems to be complaining about this. What is your experience? (and I still have a horrible dry mouth).
Michka

[adrien]

Yes I'm very tired on Tykerb and I try to keep fit by swimming and yoga but need to watch my energy output. I don't have dry mouth but I'm photosensitive, particularly on my face so even with factor 30 I end up scarlet- not a good look.
Adrien

[Joannie]

I am on the TEACH trial since May. It is Tykerb alone. I believe that I have the real thing vs placebo. I have had the following side effects:

diarrhea first 3 months
mouth sores in first two weeks
tingling hands/feet during first month
problem with ingrown toenail but not sure if it's related to Tykerb
some rapid heart palpitations but only for a couple of weeks. Echo shows normal every 3 months.
No noticeable fatigue
Light nausea in the beginning
Terrible acne/whiteheads for first three months; it has since subsided.For me it has been quite tolerable. I have little or no trouble with the diarrhea at this time. The acne was pretty bad for quite some time. I went on antibiotics for the ingrown toenail and right after that the acne cleared up. Hasn't come back.

That's what I know for now! Hope it helps!

[Becca]

I take Tykerb and Xeloda--the fatigue is a problem for me. I must pace myself with frequent rests throughout the day. Sometimes I wake in the mornings still tired, yet later in the day feel more energetic. I have never heard anyone complain of a stale, metallic taste--I have that at times. It makes water, food taste flat, bitter.

[Georgia girl]

I have been on Tykerb only since May with the same problems everyone else is experiencing - diarrhea, infected fingers and toes, acne around the nose, etc. I do have some fatigue, but hadn't thought of it as a side effect of Tykerb - just a busy schedule. The fingernail/toenail issue remains the worst problem for me - antibiotics didn't help, but I did stop getting tips on my fingernails. I now get only gel polish applied to my real nails and the infections have cleared up. I am experiencing some nail "lifting" - hopefully I won't lose the whole nail. I dropped from 5 pills/day to 3, which seems to work best for me. My tumor markers were up slightly last quarter - will have them done again next week, so we'll see.

[nywam]

Does anyone know any information about the possible heart side effects of Tykerb - what they are and how serious they are? I am thinking about the TEACH trial but am very worried about possible heart side effects.....

[Georgia girl]

Actually my heart function has improved on Tykerb. Herceptin resulted in a decrease to 19%, and after 6 months on Tykerb, it has improved to 56%. My cardiologist is very happy with this result. Good luck.

[Roz]

Hi, While I am on the T/X combo, I am pleased to announce NED scans today!! I am on 4 and a half Tykerb tabs and still have the rash on my arms. Adrien, I was interested that you are still photosensitive, i thought perhaps I was because I still have the rash. I was thinking of dropping back to 4 tabs of Tykerb, but perhaps not, as i will still probably experience the photosensitivity (and summer has just started!).

[Becca]

Roz, great news about your scans. Terrific way to start 2008!

[EstherO]

Hi ladies - brand new member.
Have been taking taxol with herceptin for the last 3 months. Now was told to continue with herceptin for a year - but I have been reading about tykerb - and thinking perhaps I should switch but my onc not recommending.
Heard Tykerb is easier on the heart - but hve been reading about side effects. While on taxol/herceptin for the last 3 months - hardly any reaction - except tingling on the toes only for the last 2 weeks. no stomach problems - slight heart palpitation and cough.
I am inquiring whether should continue with herceptin or change to Ty.
Any comments - thanks.
Esher

[CurlyGirly]

Hi
I'm possibly on Tykerb (TEACH trial) and was wondering if anyone on the drug has been getting an unusual number of cold sore like things on their lips and really nasty tongue sores?
Jan

[Georgia girl]

I have been on Tykerb since May, and have also experienced the "runs" as a side effect. The issues everyone else has with acne, finger and toenails, etc. have also been a problem for me. I have never taken Xeloda - but was on herceptin for 3 years until I developed congestive heart failure.

My heart function has drastically improved on Tykerb, but I much preferred the herceptin because I had no side effects at all from it.

My onocologist is very up to date on the latest research, and I trust him completely, so I'll endure the problems to stay as healthy as I can.

[Melissa]

Michka,

If you don't mind me asking... How did you get Tykerb after finishing Herceptin? Are you on some type of trail. I asked my onc for it and he said I couldn't receive it since I have had herceptin, unless I have some type of reoccurance. Thanks Melissa

[turbo]

I am on the tykerb/ avastin trial and have no fatigue,occasional rash(rare) a little nausea after the pills for a short time...rare diarhea,nail cracking and sore. Is tykerb approved to be used alone?