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-   -   Back on Tykerb--Still Rough (https://her2support.org/vbulletin/showthread.php?t=66243)

Mtngrl 06-15-2017 02:05 PM

Back on Tykerb--Still Rough
 
I was on Tykerb and Herceptin in 2012. I remember having diarrhea, but I also remember it being manageable with Imodium, and I think I eventually got used to it.

About a year ago I was on Kadcyla and Tykerb. The diarrhea was relentless and constant. After a pretty short time, and trying a dose reduction, my doctor and I threw in the towel.

Now I'm back on it because a lung biopsy and a Foundation One report show some evidence that I might be developing Herceptin resistance, and the tumor board thinks Tykerb/Lapatinib can fix that. I'm also getting Navelbine.

And there's that extensive, stubborn (painful, worrisome, constant) diarrhea again! After 4 doses at 1250 mg per day, I stopped the Tykerb for 4 days. When I went back on, the same day I started the second round of Navelbine, I began taking 1000 mg per day instead of 1250, and took 4 mg of Imodium at the same time, then again 4 hours later.

It's not perfect, but it's better. I also have some Lomotil that was prescribed last year. I alternate one tablet of Lomotil with one tablet of Imodium whenever I have abdominal pain and/or rumbling. I think raw vegetables exacerbate it, so I'm avoiding those. I take a probiotic supplement, and I eat yogurt.

My doctor left the decision up to me. I was willing to try again because I did eventually get used to it 5 years ago, and it seems to be the right drug for me at this time.

I have lung mets. I periodically test my O2 saturation with a little device that reads that plus pulse. My O2 and pulse numbers have been good. I'm sleeping pretty well. In short, there's reason to think this drug combination is a good one for me.

I'm posting this in case it helps someone else who's trying to do Tykerb/Lapatinib. I will let you know what the next scan shows.

Carol Ann 06-15-2017 04:03 PM

Re: Back on Tykerb--Still Rough
 
Hi Amy!

I am so sorry you are having such a rough time. :( I hope it improves for you soon.

And that this combination fights those lung mets back!

Carol Ann

Mtngrl 06-15-2017 04:08 PM

Re: Back on Tykerb--Still Rough
 
Thanks, Carol Ann! It's good to get encouragement.

Hope all is well with you.

Amy

Pamelamary 06-16-2017 10:40 PM

Re: Back on Tykerb--Still Rough
 
Hoping the dreaded diarrhea settles down and that the Tykerb/Navelbine combo sorts out the lung mets.
Best wishes..... Pam

Melissa 06-17-2017 06:06 AM

Re: Back on Tykerb--Still Rough
 
Hello Amy,

Thinking of you and hope you feel better soon!
Hang in there Amy you're so strong!

Juls 06-19-2017 03:12 AM

Re: Back on Tykerb--Still Rough
 
Hi Amy
Agh - the dreaded D!
Hope it calms down soon.

Juls

MaineRottweilers 06-20-2017 06:53 AM

Re: Back on Tykerb--Still Rough
 
Hey, Amy!

I'm glad this combo seems to be doing well by you right now. Diarrhea is the pits, the bowels of hell (haha). It sounds like you are on a plan to make it bearable while you gut makes some adjustments. Keep on moving and make every day count.
Much love and strength to you.
T

Mtngrl 06-21-2017 07:31 PM

Re: Back on Tykerb--Still Rough
 
Hello to the world's best support group! I love you all.

I'm getting by. You can take Tykerb an hour before or an hour after eating. I've decided it's better if I take it after. I'm also sticking pretty close to the "BRAT" diet--banana, rice, applesauce, toast, and cooked carrot. I also eat chicken, eggs and Greek yogurt.

I'm in my 7th year at Stage IV. I know I'm lucky that I'm still alive and still functioning pretty well. Last month I passed all my comprehensive exams for my PhD, and I'm carrying on with a "prospectus"-a book plan for the research and dissertation. I'm studying leadership in United Methodist congregations. A not insignificant reason for staying in school is the excellent health insurance, but I also like the work. I think it's important to have something to do besides be a cancer patient.

But if I have to be a cancer patient, at least I have friends to do it with me. And I have the privilege of offering experience, strength, and hope to other people. We're smarter and stronger together than we would be if we tried to go it alone.

Love and hugs to all.

Pamelamary 06-22-2017 12:21 AM

Re: Back on Tykerb--Still Rough
 
Congratulations on the PhD progress, Amy - you are amazing! Love the sentiments too.
Best wishes..... Pam

Mtngrl 07-15-2017 10:30 AM

Re: Back on Tykerb--Still Rough
 
Well, I gave up on Tykerb. My body just can't hack it. Hopefully I'll be around for one of the new tki's, and it won't be as bad for me.

Amy

Carol Ann 07-15-2017 05:28 PM

Re: Back on Tykerb--Still Rough
 
Hi Amy!

I am so sorry about the Tykerb ... that it gave you such a miserable time! UGH!! That totally sucks!

You have been through so much.

Hoping the Navelbine can still stem the mets tide for you for a long time!

xoxo

Carol Ann

Mtngrl 08-09-2017 04:58 PM

Re: Back on Tykerb--Still Rough
 
I had a good scan! lungs. liver and bone met are stable or healing. brain being radated Done, I hope. Onward.

Carol Ann 08-09-2017 05:29 PM

Re: Back on Tykerb--Still Rough
 
YAY fantastic news!!! So happy and glad for you!!
Wonderful!!

Onward is right!
Carol Ann

Juls 08-10-2017 04:12 AM

Re: Back on Tykerb--Still Rough
 
Hi Amy

Great news!

Juls

jaykay 08-10-2017 05:45 AM

Re: Back on Tykerb--Still Rough
 
great news!

Mother Undercover 08-10-2017 08:33 AM

Re: Back on Tykerb--Still Rough
 
You're an inspiration, Amy! How's the prospectus going? Such good news about your scan.

MaineRottweilers 08-10-2017 05:57 PM

Re: Back on Tykerb--Still Rough
 
Happy dance, Amy! Happy dance!

Laurel 08-12-2017 12:15 PM

Re: Back on Tykerb--Still Rough
 
Amy,

Yesterday I was speaking with a woman whom I do not know, but who is handling the title work for a seller of mine. As we chatted I mentioned that I offer discounted services to anyone associated with the medical center where I was treated. It turned out she was treated there for Her2 BC a year or so before me. She mentioned that she had a recurrence and on the second go 'round they gave her Tykerb. I inquired about her tolerance and she said that she had terrible diarrhea until she realized that it caused her to be lactose intolerant, something she was not prior to and after completion of Tykerb. She said that once she initiated taking Lactaid the diarrhea quickly abated. I have never heard this before, but laughed and said that this information is for someone on my Her2 online support group. I am hoping it was meant for you, Amy, and that it works as wonderfully for you. Her physician and pharmacist saw no interaction with the Tykerb.

StephN 08-15-2017 02:40 PM

Re: Back on Tykerb--Still Rough
 
Hey Laurel! Great information, but Amy announced that she has "given up" on tykerb. However, that might be a good thing to try if she ever does take it again.

Can you start another thread about Tykerb and lactose intolerance? Makes so much sense to me. Other drugs that have the same debilitating effect may be tolerated better with this approach as well.


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