Update on Lapatinib Clinical Trial

Nicola · 01-05-2006, 10:06 AM

Hello Everyone,

Sorry I haven't posted in a while, I have been busy with the holidays, company and treatments.

DX: Age 36, March 8, 2004 DCIS ERPR++++, lumpectomy with radiation
DX: December 1, 2005 Extensive Liver mets in both lobes and bone mets in the T8 & T9, HER2++++, ERPR- in liver.

Over all I am doing well. I am getting ready to receive my third treatment of Herceptin 2mg/kg and Taxol 80mg/m2, I take Lapatinib 1000mg every day at home in pill form and Zometa once a month.

So far the side effects I have had are: slight waves of nausea on and off, soreness in the joints, fatigue, diarrhea, sinus trouble with drainage and nose bleeds, and the worst one of all is a on going urinary track infection that I can't seem to get cleared up even after being on antibiotics (bactrim, levaquin) twice for it. Just starting to lose my hair.

When I go in for treatment tomorrow they are going to do a urinalysis and depending on what it shows they may send me to a urologist to check the bladder for cancer. I am hoping that it is just a UTI that a stronger antibiotic will clear up.

Has anyone else had these side effects or trouble with on going UTI's?

I should be having another CT scan in about 6 weeks to see if the treatments are working, I can't wait to find out, the waiting is the hardest part.

I hope you are all doing well, I will try to keep you posted on my progress.

Hugs,
Nicola

al from Canada · 01-05-2006, 01:36 PM

Thanks for your update,

Hang in with the side effects bcause they should diminish as time goes on.
Thinking about you,
Al and Linda

hannah · 01-05-2006, 02:50 PM

Have you tried cranberry juice for uti

01-05-2006, 06:17 PM

Thanks for the update; sorry things are going rough. I'll keep praying for you. Maybe the unrinalysis tomorrow will identify what kind of organism you are growing that seemingly is causing your UTI, they they can more appropriately treat you. Hang in there.

01-05-2006, 07:07 PM

Nicola,
I don't remember what the medication was that finally cleared up my UTI, but, the first one I had let it spread to my kidney. THAT sent me to the ER in the worst pain possible. This was when I was on Navelbine/Herceptin and had low counts.

I choose to believe! that this is the problem and will only take a stronger/different anti-biotic to clear up for you.

I do hope you are reporting your list of side effects to you doctor, too.

hugs,
pattyz

Nicola · 01-07-2006, 10:05 AM

Hi Everyone...

Thanks for all of your kind words and support. I am really bummed out, I wasn't able to get my chemo treatment yesterday because of the diarrhea I have been having for several weeks on a daily basis. They want me to take a break from the Herceptin, Taxol and Lapatinib until we get this cleared up. They gave me an antibiotic called Metronidazole 250mg to take along with lots of Imodium. So far it hasn't helped much, I am hoping that after a full day of it that it will start to make a difference. I am not sure if the diarrhea is from the gall bladder surgery I had on Dec. 1 or from the chemo and meds I am on or a combination of them all. I am still having trouble with the UTI also, they did a urinalysis yesterday to try to get a culture so that they know what kind of antibiotic to treat it with, they should have the results back from that on Monday. I am getting so tired of taking all these meds and I am worried that if we don't get this cleared up ASAP that they may take me off of the clinical trial.

Has anyone else experienced extreme diarrhea from Herceptin or Taxol? Any suggestions would be greatly appreciated.

Thanks so much for letting me vent and for all of your support.

Hugs,
Nicola

RobinP · 01-07-2006, 10:52 AM

Hi there,

I can't answer for Taxol causing diarrhea, haven't gotten it. However, I have gotten one dose of Herceptin and it did not cause diarrhea. I have read that Laptinib can cause diarrhea.Some suggestions for diarrhea- cheese can help reduce it. Calcium can constipate so I wonder if little calcium added to your regimen might help- maybe you could talk to your docs about something as simple as a little daily calcium. Hang in there! I have high hopes for you and this trail. And No, I don't think they are going to take you off the trail for something as simple as diarrhea and UTI.

anne · 01-07-2006, 12:19 PM

Nicola,

Try the old fashioned BRAT diet for it.
Bananas
Rice or Noodles
Applesauce
Ginger Ale (you can also make your own at home by soaking ginger in some simple sugar syrup and adding club soda).

Diary especially milk can make it worse, do avoid it for awhile.

Hope you feel better.

XOXO,
Anne

Cathya · 01-07-2006, 02:32 PM

Nicola;

I had diarrhea for a number of months on herceptin. I don't know what cleared it up but it has simply stopped. I took Taxol as well with the first treatment so it could be that combination that continued after the taxol treatments stopped but was still in my system. I do take calcium citrate and vitamin D each day...used to use calcium carbonate but the druggest said citrate absorbes in the body better so switched. My bowels were also very dark and I was concerned about blood in the feces but I saw this as a side effect and stopped worrying. I am watching your posts with great interest and empathy Nicola. I pray you can hang in on this trial. I'll try to think of anything I've forgotten about that diarrhea....now THAT's weird!! lol We're all thinking of you.

Cathy

hannah · 01-07-2006, 03:08 PM

Hi

numerous antibiotics can cause CDT which is a bug n your stomach the antibiotics clear the bowe of all bacteria and allow CDT to grow which presents with a horrible diarrhoea. The treatment for CDt is metronidazole for 14 days and if it doesnt clear up vancomycin, unfortnatley it is a vicious circle.
hpe you feel better soon( try eat bananas as diarrhoea causes drop in potassium)
Hannah

Nicola · 01-08-2006, 12:58 AM

Hi Everyone....

Thank you so much for your support and suggestions. I feel much better after having heard from you all. I am feeling more confident that the antibiotic I am on along with the Brat diet will clear it up. The Metronidazole is actually helping with the UTI too I think. Although I hate Yogurt I am thinking of trying that too to help with the natural balance of enzymes.

I will keep you all posted.

Lots of Love,
Nicola

hope · 01-08-2006, 10:01 PM

I have been on Abraxane since April 2005 and have neuropathy on hands and fingers and now on bottoms of feet. Mostly numbness not pain. Neuropathy has been getting increasingly worse so my onc had lowered the dose of Abraxane by 15% and has perscibed a drug called Neurontin for the neuropathy. Is anyone on this drug? What are the side effects and does it work? Any other remedies for neuropathy? Thanks, Hope

al from Canada · 01-08-2006, 10:11 PM

Dear Hope,

Vit. B-6 100 mg, 2x day may help.
Good luck,
Al

StephN · 01-08-2006, 10:15 PM

I am surprised that your doc has waited this long to give you this drug. I got a lot of relief from it. And no side effects that I can recall.
Maybe you don't remember, but I had 27 treatments of Taxol and navelbine for me mets. I also had got the Neurontin when on the Taxotere for adjuvent that gave me severe body aches.

Lolly · 01-08-2006, 10:29 PM

I was also given Neurontin when on Taxol, to help minimize the nerve damage and pain. It worked pretty well, although I still had a bit of numbness in the ends of my fingers after Taxol was finished. This gradually cleared up.

<3 Lolly

Cindi · 01-10-2006, 07:54 AM

Nicola,

Lapatinib has caused me to have heavy problems with diarrhea. I have been in my Lapatinib trial since 12/27. My Onc. has suggested taking two imodium tablets at the same time I take my Lapatinib. Will try this today.

This is a "different" type of diarrhea than I have ever experienced on previous chemos....very intense. But, my Onc. sees improvement in just two weeks (my mets are to the skin), so she (and I) WILL work hard to get this diarrhea under contol.

Last week, I had to go off the Lapatinib for two days as the diarrhea got so bad, but went back on it after that. HOPEfully your "chemo" break will be brief, This will give your body time to strengthen and your UTI will get better and you'll be back to fighting this darned disease very quickly!!!!!!!!!!!!!!!

God Bless,
Cindi.

Nicola · 01-11-2006, 05:51 PM

Cindi,

Thank you so much for your post. It is good to talk to someone else who is on Lapatinib. The antibiotic Metronidazole seems to be doing the trick. I start back on Lapatinib tomorrow and Herceptin and Taxol on Friday, I am hoping that the diarrhea doesn't start back up again, if it does I will try taking the Imodium along with the Lapatinib in the mornings.

I am glad that the Lapatinib is working so well for you on your skin mets. Are you taking anything else along with the Lapatinib? Please keep me posted on how you are doing.

Big Hugs,
Nicola