Tykerb Side Effects

[Muldoonmom]

Hi All,
I started Tykerb last Tuesday and I started experiencing pretty severe diarrhea the next day. With Imodium D, it abated for a few days and then hit me like a ton of bricks on Sunday morning (2:30 am) until 10:00 am. The Imodium took that long to work. Today I'm much better.
Has anyone else had a similar experience? I'm not taking Xeloda with the Tykerb. In fact, my last chemo (taxotere) was almost 4 weeks ago and the only other drug I take is Zometa (also 4 weeks ago.) However, I did start a course of prednisone last Tuesday also to address a chronic cough that I've had since my pleuradesis last January. The prednisone is working like a charm - thankfully. But I don't think it causes diarrhea.
I'm so happy to finally be on Tykerb but I hope that the diarrhea doesn't become a chronic problem.
Oy - if its not one thing, its another, in the immortal words of Gilda!

[MaritaM]

Hi - you say you take Tykerb only. Is it working? Does it affect the red/white blood cells. Any info would be appreciated. Thank you.

[chrisy]

I started Tykerb last Wednesday - with Avastin. I had been warned about the diarrhea by the pharmacist, who recommended immodium. So I carried immodium around in my pocket for the next few days - sort of like carrying an umbrella to "prevent" it from raining! I so far haven't had serious problems...
Hope things improve for you soon! When I was on Herceptin alone and started getting the triple dose, I did have diarrhea the first day. After a while I guess my body adjusted and I never had any problems after that. Hopefully you will find this happens for you with the Tykerb.

[SoCalGal]

Day 26 tykerb, etc. - was supposed to start round 2 of xeloda but am so chronically low grade nauseas that I didn't start it this morning. I am also dealing with diarrhia, which I've tried imodium but I don't think it works. And I'm pretty sure the imodium makes me dizzy. Okay, this is my report for today. Ladies, I'm not sure where the quality of life comes in. These side effects suck. Maybe I'll xeloda after dinner. I'd really like one night's sleep. There is not enough ativan in the world for me:)

[SoCalGal]

My two least favorite words to try and spell are:

diarrhea and nausea

[Odette]

Oh Flori,

I feel bad about not writing earlier, but even when I did not write I was thinking of you and hoping that you were OK. Then I saw about your migranes, but I could not relate to that because I have not even been able to start the T + X yet. By the way how are the migranes now?
Most importantly I'm sorry that this chemo is so hard on you. But remember the idea is that it will put you into remission and hopefully never will have to take the nasty stuff again!
How long does your oncologist want you to stay on the Xeloda? Maybe 4 or 6 cycles? You have one down of those, so hopefully by mid summer you will be off?! Maybe you'll stay on the Tykerb for a while, but that should not be quite so bad. I understand the Xeloda side effects go away once you stop it.

I wish I had something more to offer to cheer you up, let me know how are you doing!

Hugs and prayers,

Odette

[SoCalGal]

Odette,
Thank you, your words really comforted me. ARe you still waiting for the insurance approval? Or the pharmacy? I had to call them and stop being polite and they overnighted my meds. Maybe I should be incharge of all such calls, it would be a positive use of my anger:).

Thank god, my headaches have gone. I am going to start xeloda again today, because you reminded me that this won't last forever. I guess I thought that I'd be on chemo like this forever because with mets they don't really go away, right? I should ask my onc. I know he said xeloda for 6 months. I wish I knew how to find out if a reduced dose of tykerb, 4 pills verses 5, would have effectiveness yet be more easy on my system.

I am a tough crazy passionate woman, but my body has never handled meds well. They always knock me on my ass.

Okay, wishing you a great day today. Hugs and prayers to you, too. Flori

[Esther]

Flori, after my initial chemo when diagnosed stage 4, I spent 2 years on just Herceptin, before starting the Tykerb/Xeloda combination 3 weeks ago.

So you can get to a spot where you go for periods of time without chemo.

[Lori S]

To those experiencing diarrhea on T&X I just wanted to share my experience with this protocol. I started with 3,300 mg of Xeloda and 5 pills of Tykerb. I too experienced severe diarrhea during the first and second cycles. I had diarrhea so much the second go around that my colon became inflammed and I was having bloody stools. It turns out I was dehydrated so please make sure you keep up on your fluids. On my third cycle my onc decreased the Xeloda to 2,300 mg. I only had diarrhea twice during the third cycle and it was less severe. I am currently on my second week of Xeloda for the 4th cycle and so far I have not had any diarrhea - knock on wood!!

If you can hang in there and ask about reducing the X before stopping the protocol. In my case my onc believes that the Tykerb is providing the benefits now. That is it is keeping my mets stable in my lungs.

Lori

[Odette]

Hey Flori,

you have been through so much and you are a tough brave and passionate woman and you will just hang in there until they find a medication that will wipe out all the mets and micromets in your body.
I do also believe that the Xeloda is the one that causes more problems, maybe your doctor can reduce your dose like Lori's was reduced.

From what I hear the Tykerb 1250 mg is pretty much the effective dose.
I hope you have a good day today, when will you next see your doctor?

I promised myself that I will not let this get to me, but I'm quite upset that I am still dealing with the insurance company. (First they said OK to Xeloda, then they revoked it.) Monday my social worker sent in an appeal form, but I cannot get an answer from them. The office that has the info won't even talk to the patient, so I had to call the social worker to call them. And she is out of town etc. Ugh.
Until then I cannot send in my Tykerb Application for Assistance form. Coming to think of it I'll just send it in anyways and if the insurance does cover it I'll just cancel it.

Best wishes to you, hope your weekend goes well. I'm going to a breast cancer retreat Sunday and Monday in Amish Country. There'll be yoga and Taichi.

Your daughter probably has prom and other fun.
I remember it was pretty hard last year to just have been diagnosed and face the end of the year celebrations.

More hugs and prayers,

Odette

[Muldoonmom]

Hi,
I did have another taxotere tx with the Tykerb and the side effects were awful. That was 9 days ago. I stopped the tykerb for the time being while I recover from the side effects. So I'll restart the tykerb next week without any chemo.
I also developed some facial pimples from the tykerb. Not very pretty but my onc tells me that it indicates that I am highly receptive to the tykerb.
Once I feel like myself again and the taxotere is completely out of my system, I'll get back on the tykerb horse!!

[SoCalGal]

Each day I log on I am struck by the enormity of what is required of us to survive. Most people barely take a Tylenol if they need it - let alone the arsenal of drugs that we take, willingly, with courage and hope. And we do so in a matter-of-fact way, even with grace, over time.

We discuss the most severe side effects, the ones the drug commercials mockingly disclaim, in a speeded up murmur, a barely perceived whisper. Those whispers define our lives - and determine how our days will play out. To us, it's all about affects and effects. That we are willing to try whatever it takes to survive, out of our love for life and our families and friends, it is truly remarkable and maybe that's part of how we survive.

Here's another update on what MIGHT be helpful to side effects – it seems to have helped me for two days. (I am on day 29 of Tykerb and round 2, day 3 of Xeloda).

For the past 2 days I have stayed on 1/4 pill (1/4 of a 1 mg tablet) of ativan every 3.5 to 4 hours for nausea and 1 Imodium same schedule for the runs. Taking this as a preventative gave me a much better day with a lot less nausea and less severe diarrhea. Also, yesterday the rash returned so it must be from the combo since I had it when I first started the regime. This rash is contained on my torso, looks like prickly heat and isn't too itchy.

For the record, I spoke with my doc and he wants me to stop the Tykerb for a day or so to try and calm my system down. I'm going to skip it today and stay on the Xeloda. Maybe that will let me catch my breath and get out of the house this weekend.

The transcript from Barbara2 with Dr Pegram helped me a lot - answered many questions.

There is so much strength and love on this website - it is astonishing to me. I wish you all a good day today. -Flori

[hutchibk]

Thanks for the fantastic words, Flori! Wonderful insight.

And thanks for the suggestion on keeping ahead of side effects. I am currently on Xeloda only until Tykerb arrives in the mail. I took my first full day of X yesterday. No yucky side effects at all. I don't feel 100 % perfect mind you, but no nausea, which was my biggest apprehension. Of course I did take Zofran preventatively and it could have negated any nausea. The most noticeable side effects for me have been all the same things that I always feel a little after a chemo tx: 1. the shrivled, dehydrated feeling, 2. a little bit of a fluttery heartbeat about an hour after taking, 3. a little shaky for a couple of hours after taking, and occasional lightheadedness, 4. fatigue, already! - woke up this AM feeling like my body weighed 500 lbs. - I guess that is the fatigue... 5. stiff fingers, knees and ankles.

All in all, not a bad start. No nausea, no headache. I consider that a huge victory! Now all that's left is the anxiety about adding the Tykerb to the mix...

[SoCalGal]

Hi Brenda,
I was on xeloda one time before, and I don't remember nausea being a big factor. For me, it's the gastro stuff. The fatigue for sure, loss of appetite. Loss of feeling like me AND all the anxiety. I always joke that there is not enough Ativan in the world for me. But seriously, I think Ativan is really good for anxiety and it also has anti-nausea properties. A small amount goes a long way. Have you ever tried it? I've used it routinely at night to sleep for many years. Ambien makes me dizzy so that's why the ativan for sleep. And for nausea, zofran gives me such a headache that it's not worth the trade - ditto for kytrel.

Try and stay distracted (need to take my own advice today:)Wish I had the energy for some retail therapy...Flori

[hutchibk]

Have not tried ativan... I have my xanax for anxiety, but only need to take it sparingly - rarely. Sometimes when my brain won't turn off, it can really help me sleep. Otherwise, I also sparingly take Lunesta for sleepless nights. It works wonderfully for me.

Did not take Zofran today and I have no nausea. Whew.

Take care! I am out the door to run a few errands before I run down...