My experience with Lapatinib (Tykerb)
 

Hi all-

I posted my newbie story on the Welcome area.
http://her2support.org/vbulletin/showthread.php?t=38124

But since I am now 4 months into my Tykerb pills, I wanted to share my experience in case it helps anyone else.

I am in a clinical trial through MD Anderson via my oncologist at Baylor Hospital in Dallas. The trial is small with only around 85 people (worldwide I think). The purpose of the study is to see if Lapatinib will improve neoadjuvant breast cancer treament when it is given in addition to standard chemo or when it is substituted for trastuzumab (herceptin). There where 3 arms:

1. Herceptin with FEC 75 and Taxol
2. Lapatinib with FEC 75 and Taxol
3. Both Herceptin and Lapatinib with FEC 75 and Taxol

I was randonly chosen for #2. So in November I started taking 6 pills of Lapatinib a night along with my cycles of FEC 75. Just 3 weeks ago I started weekly Taxol.

I had terrible GI issues with taking the Lapatinib. I was 125 pounds when I was diagnosed. I am now down to 115 pounds. So taking 1,500 mg of Lapatinib did a number on my body. I have had 2 dose reductions because of the diarreah. So my nightly dose now is 1,000 mg.

I am on my 3 "break" from my nightly chemo. I get a couple days off occassionally to give my system a rest. My nightly pills treatment with Lapatinib is for 6 months. Only 2 more to go!!! Please say a prayer they do not have to dose reduce again because then I will be disqualified from the trial.

On to the good news. Yes, the diarreah is bad. But after only TWO weeks on the Lapatinib pills nightly my tumor shrunk considerably. My tumor was 6.8 centimeters to start. Am I wrong or is that pretty big???? Like almost 3 inches. They were amazed at how much it had shrunk in just 2 weeks. Seriously great news!!!

Sorry for the ramble. I just wanted to reach out with this info in case it helps anyone else. Believe me, you all have been a wealth of info for me already. Thank you for that. I am glad I found this site.

Maureen

Maureen,

Thank you for posting. You sound like a warrior to me. Keep us posted on what is happening.

Like you I did neoadjuvant therapy. It is great to hear that the tumor has responded to the treatment. I admire you for participating in the trial.

I will pray that you do not have to reduce the dose any more.

Amelia

My experience with Lapatinib
 

It certainly sounds like you are going in the right direction. Keep up the good work. I am clapping my hands for you.
Mammograms are not always that accurate. Do they have digital mammograms in your area? That might help get clearer pictures in the future. Also you might want to follow up mammograms with breast ultra sounds or breast MRI if that is available in your area.

Maureen, Great news..and yes your tumor was large and now so much smaller. The Tykerb must be working its' magic. Don't worry about rambling, we love to hear stories like yours. They give us all hope. Good luck and I'll be throwing in extra prayers and love for you into the mix. Love, Vickie

Maureen,

Thank you for sharing your experience.

Vickie is right. We love to hear stories from our sisters. And it is basically what this Board is for - so we can lend our support to each other.

I am throwing in 'Texas'-sized prayers for you. Have you checked with the doctors about how to deal with the GI problems? I was taking two different kinds of anti-emetic pills during chemo. They worked wonders. One thing you might want to try is to cook some plain rice soup. (half cup of rice with 2-3 cups of water) Because starch can be digested by our saliva - try to chew it well in your mouth, it will not require too much work on your stomach. And the 'soup' will replenish the lost fluid.

You can cook some sliced sweet potato in the rice soup to add flavor and fiber. You can also stir in an egg in the steaming rice soup in the bowl (without the sweet patato - add salt & pepper for flavor). Eat enough of it you might be able to gain some of the needed weight back. Also, have you tried to drink supplements like 'Ensure'? I know, it is too sweet, but it is easier on the stomach than vitamin pills.

Terrific news, Maureen! And ramble on, girl! I love your story and am cheering about your success. Best wishes and again welcome! ma

I am just restarting the meds again (I am on day 3 as of today) and I remember in the past I worked hard finding food that was digestively compatible.

I will be working on the same type of challenges as well. I had set myself up a little "cook book" just special to help me with problems and offering solutions but it is long gone.

Please feel free to get in touch if you would like as I am sure that eating differently will be one of the priorities for me at this point as well.

Oh, oh Maureen,

I'm thrilled your tumor has shrunk. I started Tykerb alone in February after flunking all the standard therapies including whole brain radiation therapy 101.

Now I'm waiting till the end of April for another MRI to see if my single brain met has shrunk. I feel like I'm thumb twiddling, waiting, waiting.....

Your results give me hope.

Carla

Hello Maureen

it is great to hear about the response you're getting. I think I was in the same trial (only in Italy), but I got both Herceptin and Lapatinib and did Taxol first, and FEC75 after.

I also had to reduce the tykerb dose, from 4 tablets to 3, because of terrible diarrhea.

And I also had fantastic results, in that I achieved a complete pathological response by the time I had surgery. Just one word of caution though, in my case I think it was the chemo more than lapatinib/herceptin to do the trick as my tumour (originally 5cm), had started shrinking on taxol but also started growing again in the 3 week break I had between taxol and FEC, this despite continuing with herceptin and lapatinib. SO, while I'm grateful I've had the chance to have tykerb too, I'm not so sure it was down to it. FEC definitely wiped the rest of the cancer away.

I thought it was brilliant though, because chemo it's so awful, but you see it working before your eyes (my tumour was poking out so I could actually SEE it disappear), and it makes it all worthwhile.

Whatever it is that's killing it though, I wish you the best, and to achieve a great result at the end!

good luck
chiara