Added Tykerb to Herceptin (w/o Xeloda)

ausborn · 01-19-2009, 01:20 AM

I've recently been put on tykerb along with herceptin (over 5 years) and faslodex (2 1/2 years). Onc started me in December 5 tykerb tabs in the am. After less than a week I was vomiting with diarrhea and couldn't get a handle on it. After a couple of liters of fluid and visit with onc, we decided to stop the tykerb for about week...which was great because it gave me a good Christmas week. Upon restarting the tykerb, we decided to ramp up the dosage and change to taking it at night. Started with 2 pills and every 3-4 days add another one. Well I am at 4 pills and having a time with diarrhea everyday and just occassional nausea. Got a rx for lomotil which helps a little with the diarrhea. I am upset that I haven't been able to go up to the 5 a day my oncs wants. And this diarrhea will just be something I will have to live with. I've noticed the nausea seems to be more of an issue when I take my extended release pain med. It doesn't seem to matter what I eat...following the BRAT diet didn't help.

Couple of questions:
Anyone else just doing tykerb w/o xeloda?
Any ideas to reduce the diarrhea?

My QOL has been pretty good since my bone mets dx over five years ago. Recent progression to existing rib met and couple of new ribs showed up on last scans in December. Hence adding the tykerb to see if it would boost effectiveness of herceptin. I am really down about my declining QOL recently. Today was the last straw when I didn't make it to the bathroom..humiliating. If just adding tykerb has this kind of effect on me...how the heck am I going to handle chemo..the next step.
A very down day...I will see onc in about 12 hours. I'll see what she says.
Hugs,
Aus

Mary Anne in TX · 01-19-2009, 06:19 AM

Hey Aus!
I believe that the brain power on this site will help you find a way to do the Tykerb and still have good QOL! I think Brenda is the master of Tykerb QOL, but others will have ideas for you too. I think that this site is so much smarter than the side effects and mets that attack us. Get all these brain cells crackin' and magic occurs.
Don't give in to that awful stuff girl. Believe that help is on the way for you.
If Kurt Warner can get to the super bowl, you can defeat those mets and still have good QOL.
I'm believin' and prayin' for ya! ma

Georgia girl · 01-19-2009, 07:37 AM

Aus - I'm taking only 2 Tykerb pills/day. I started with 5/day, but se were too severe - not only diarrhea, but infected fingers & toes that would not heal. I had to stop herceptin because of congestive heart failure, so Tykerb was my only option. My mets are under control so far (4 1/2 years), even with only 2 pills/day. I do get faslodex every month, and zometa every other month. My point is, don't fret about not being able to take all 5 pills/day - a lesser dose may work just as well without all the difficult side effects.
Hang in there,
Beth

jmoore0819 · 01-19-2009, 10:02 AM

I'm taking four Tykerb a day and I do still have trouble with diarrhea. Immodium does help but have to take several before it works. You may want to try it.

ausborn · 01-19-2009, 07:33 PM

Thank you so much for your replies. I met with onc today and here's what we decided. I am going to stop the tykerb for a few days and start back only taking three and stay at three tykerb a day. I am so happy with this plan. Four of these horse pills a day is just a bit too much for me.
I was taking imodium like candy, but a rx for lomotil has helped more. Zofran has helped too..no more vomiting..just some nausea.

Beth, so glad you mentioned the fingers/toes. Just today I have a 'split' open place on the end of my thumb. I was chalking it up to artic blast cold we've had in here in the south recently. I've never had this happen before..so perhaps it is the tykerb. Didn't think to mention it to onc.

My attitude is so much better today. I was afraid the onc would not want me to just do the lower dose. SO happy she suggested it!

I am so happy to be connecting with other tykerbies. On another site, everyone who posts seem to be doing xeloda with tykerb.

Thanks so much! I look forward to helping each other as we kick our mets to the 'kerb'.

Kathy T · 01-20-2009, 07:54 PM

Hi,
I take both Tykerb (5 per day) with Herceptin. I have occasional diarrhea but not bad. I am having problems with infected toes and splitting skin around nails. You might try taking Tykerb at night--that seems better for me.
Kathy T

yankeebikachic · 01-21-2009, 08:04 AM

Hang in there! The cracked skin on your thumb is from the tykerb. I have 6 cracks on my fingers now, and tons on my feet. I just keep going with lotion, antibiotic cream and keeping them covered. I have had good results so far with tykerb so keep trying. It was hard for me at 1st, too, but now I think my body is finally adapting (after 5 months) with only the occasional yikes.
Keep up the great work!

sally · 01-22-2009, 04:20 PM

I was on Tykerb with xeloda about a year and half ago and had a terrible time with it. I had to go off due to progression and side effects. I was currently put on tykerb with Gemzar. I started with 2 pills a day for about 2 weeks, then 3pills for 2 weeks and I am now at 4 pills perday with no side effects yet. I take my pills a couple hours after breakfast and an hour before lunch. The first time I was on tykerb I took it at night and it kept rising up in my throat when I layed down. I hope your system gets used to it soon. It's O.K. to back down a pill here and there if it is going to make you sick. If the tykerb is running right through you or you are vomiting, you can't be absorbing it as much as you probably should be. I hope your feeling better soon. Sally

hutchibk · 01-25-2009, 07:38 PM

I was on 5 Tykerb a day with Xeloda for 18 months and did fantastic, no sickness of any kind.

Then, in October the doc switched me from Xeloda to Herceptin with the Tykerb and one would have thought I had e-coli poisoning or something. Diarrhea and gastro problems were terrible. After about 3 weeks, we dropped the dose to only 4 Tykerb and whew, all was well again. My doc says that 4 is actually now the recommended dose with Herceptin, with more than adequate efficacy.

I think your plan to try 3 and maybe ramp up to 4 from there is a good one. Don't worry too much about 5 - you are getting plenty of Tykerb.

And many of us have had success taking it at bedtime.

CourtneyL · 01-29-2009, 02:53 PM

Might I also suggest acupuncture? I can not say enough about the wonderful acupuncturist that practices at my onc's office. I am convinced she is the reason my side effects to all of the drugs I have been on have been so mild. It is really amazing what acupuncture can do for digestion, nausea, and even emotional problems (anxiety).

I've only been on Tykerb for about 4 weeks and other than a rash on my skin (which the Suki Lotion took care of - thanks VickieH!) and the cracking on my fingers (which a thick application of salve every night seems to be taking care of), all has been good.

Hoping you find some relief soon!

ausborn · 01-29-2009, 03:22 PM

I found the greatest thing for the 'split' places on my fingers. Liquid bandage!! I got a store brand..not the name brand. Not only do I have the benefit of keeping germs out, by sealing it, it stopped the pain I was experiencing every time I touched something and the split would reopen. This has been an amazing 'cure' for me. I hope it will help those of you having this side effect on your fingers and/or feet.
Hugs,
Aus