Tykerb Update

[Esther]

I've been on the new treatment of Tykerb/Xeloda for about 2 weeks now, and I can honestly that i feel the best I've felt for the last year.

For me, feeling good physically usually translates into a treatment that is working extremely well for me.

The only side effect I have had is a rash with small pimples, but have since heard from one of the MD's involved in the trials that that is a good thing, as it usually indicated a high responder to the Tykerb.

I am taking the Tykerb at night, and am not experiencing much in the way of fatigue during the day.

How are the rest of you doing with the Tykerb? I am really becoming very optimistic about this new treatment!

[chrisy]

Well, I never hoped for pimples before! And of course will try not to be bummed if I don't get them...crazy mind games...
I took my first dose of Tykerb this morning and feel fine...I was warned about diahhrea and carried immodium in my pocket all day. It was sort of like carrying an umbrella to prevent it from raining...I feel fine (other than the shock of having to change treatments!) and love to hear your optimism. Your gut feelings are usually right!

So I guess one day is not really enough to go on in terms of side effects, but so far so good!

[Zoid]

Esther,

Thanks for mentioning the "acne-like" rash- I've been looking all over the web to find out some info. Did your Doctor give you any advice for it?

-Susie

[Esther]

By the time I asked my oncologist I had already purchased some hydrocortizone cream and begun using it. It did help, and my onc said if it didn't clear up we would use an antibiotic on it.

[Joy]

Number 1: YAY ESTHER! I'm so glad you are noticing some very positive feelings from this treatment. I'm so excited for you and I admit encouraged for us.

Number 2: Would you mind sharing a little bit more about the rash? Like where you are experiencing it (you sure don't have to share, either) and if it is uncomfortable and what can you liken it to? I'm curious as I bet it is in my future before too long. I asked an NP at the center today and she said it seems to manifest on the face and chest and it is even treated like acne with medication. Some folks report that it flairs in the first week or two and then sometimes improves after a month or so. I hope that is true for you. I have also read and the NP confirmed that there is some evidence to the rash equating to the efficacy. And we want efficacy!!!

I have these dumb worries about the rash. I spent so much of life battling acne and have gotten to a place of having the skin I always wanted AND hair again too. I know it is trivial and vain, but when I can at least look okay, like healthy, I'm more positive and encouraged psychologically. I mean I'll do whatever to save my own hiney! I just want to prepare for the effects. thanks for sharing and listening and sharing any more information.

And really, I'm so happy that you are responding to these meds. That is the best news ever!

[Esther]

Joy:

I had the rash on my right upper arm area, and hydrocortizone cream healed it pretty well, you can still see it, though it is healing, but I covered it up with powder foundation in order to wear tank tops and it disguises it so it is invisible.

I had some pimple like eruptions on my face, but there again, I healed it up with hydrocortizone cream and foundation covered it up nicely.

So it is a nuisance, but not so bad that you can't hide it, and noone but you even notices it.

From what my oncologist said, it should disappear within 4-6 weeks, but it is already dissipating and almost gone.

The rash is a GOOD thing though, as it corresponds with those who were the best responders to Tykerb. I'll willingly put up with a short term rash if it means that the Tykerb will work for me.

[hutchibk]

Well then, I am hoping and praying for a rash, a big old mean ugly rash!!
LOL

[SoCalGal]

First, to respond, I had a mild prickly-heat looking rash all over my torso, more on the left side, which is the cancer side of my body, the first week on TY-Z. I knew skin rashes were a side effect, just didn't know they were positive. I did nothing to treat the rash and it went almost all away.

My questions:
I just switched to taking the TYkerb right before I go to sleep and it seems better. I have not been feeling too good, I am always resting, waiting to feel better. Hour by hour I either have nausea, diarrhia and the lastest thing I've noticed is a daily migrane headache. Nothing seems to occur at the same time, or as a result of food. I can wake up feeling okay and by the time I'm out of the shower I need to lay down.

I was wondering if others were experiencing side effects that make you question treatment verses none.

The good news is that my markers went down after just 2 weeks on TY-Z so that gives me hope BUT if everyday I am so depleted and suffering, I don't know what I'm hoping for. This is no life.

My scans will be repeated after 2 months, so I am going to stick with it until then.

Has anyone been on Tykerb/Xeloda for 6 months, and if so, how do you do it? Do the side effects subside or get worse? Any tips? Blessings.
Flori

[hutchibk]

Flori - a similar question was asked on a thread on the main board, just yesterday... I think it might be your dosage of Xeloda that is causing the problem. It can be adjusted. Talk to your doctor.

Here's the other post:

Q:
my mom just had her first cycle of xeloda 3 500mg in the morning and 4 500mg at night. She is feeling terrible, so much that she is thinking of stopping any treatment and trying microbiotics only. She has terrible headaches that won't let her sleep at night, she is exhausted all the time. Very minor nausea and some numbness in her fingers and her toes. On May 4th she is going to see
her doctor and I was suggesting she talks about reducing her dosage. They wanted her to take navelbine with it but they don't have it on approved list of meds so mom needed it to find it herself. I am not sure what to think of that. Mom has lung mets and now liver mets too, after taxol and carboplatin treatment. She did get few herceptin treatments but after 2 months of fighting to get it and after my brother and I said we would pay for it. Now they won't give it to her any more, they said it wasn't working.
Anyone has headaches like that? I would appreciate any help.
-DAUGHTER

A:
It sounds like your Mom may need the dosage reduced and then the headaches will go away. It seems she is on 3500mg a day, and I am on 2500mg a day and don't get headaches, nausea or any of that/ is she taking right after eating and drinking plenty of water?
__________________
"Life is not measured by the number of breaths we take, but by the moments that take our breath away."

Hugs & Blessings
Sheila

[Adriana Mangus]

Hi Esther: May 1, I will be seeing my oncologist; based on the ct chest scan results we may add Tykerb. Are you still receiving Herceptin?

I heard that once you start taking tykerb, herceptin is discontinued. Tykerb can be taken along with Xeloda or perhaps another type of chemo. Is this true?

I don't mind stopping Herceptin if is going to do the job. Just wondering what the norm is.

I trust my doc. but I'm always checking with you guys for advice.

Thank you.

[Esther]

Adriana, prior to starting Tykerb, I consulted with Dr. Pegram at UCLA. He recommended that I take Tykerb with Herceptin.

So that is what I am doing, I am still on Herceptin every 3 weeks, and have added Tykerb and Xeloda to the my schedule.

It was only in the clinical trials that they were asking you to stop the Herceptin, that was the main reason why I did not enter a clinical trial for Tykerb, I was unwilling to stop Herceptin.

Discuss it with your onc, but I'm pretty sure that you will be able to continue Herceptin with the Tykerb if that is what would work best for you.

[Esther]

On the Tykerb website, the recommended dosage of Xeloda when taken with Tykerb is 1000 mg twice a day.

Those of you on higher dosages, might want to check on that and see if a dosage reduction might help the side effects.

I am on the 2000 mg a day of Xeloda, and I feel great.

[SoCalGal]

HI Esther,

How long have you been on this regime? If you don't mind me asking, how much xeloda are you taking? I was on herceptin for 20 months and finished in 2004. It was much easier than I am finding the tykerb/xeloda. I asked my onc about going back on herceptin as well and he did not think my insurance would cover it. I'll ask him again, next visit. I never had progression on herceptin - wasn't metastatic back then. Tomorrow I am supposed to start round two of xeloda. I am on 2 pills twice a day - 2000 milligrams total. How long have you been fighting this? Okay, thanks, as always for posting. It is so helpful to me.
Flori

[SoCalGal]

Hi Esther - just saw your second post with my questions answered

Thanks! Flori