Lapatinib + Xeloda = any hope?

Trish · 07-31-2010, 04:29 AM

Hi Galina
I was on Tykerb (Lapatanib)and Xeloda (Capcitabine) combination for liver mets for about a year and it was very successful, but I did show regression after a time. I live in Australia and we have a government Pharmaceutical Benefits Scheme that funds treatments that are rigorously evaluated. Lapatanib is only funded in combination with Capcitabine (Xeloda) as they consider that gives the best result.
Liver mets were found Dec 2006 (CA 15-3 was nearly 2000 at that time) and I had Herceptin alone and in a range of combinations. Herceptin/Taxol combo was the most effective and TMs dropped to 68 before they started climbing again. Herceptin was subsequently paired with Gemcitabine, Navelbine and Vinoralbine, Carboplatin and Taxol, but by December 2008 CA15-3 was 819.At that point I switched to the Tykerb/Xeloda combination. By mid January CA 15-3 had dropped to 228 but unfortunately during that time I had been hospitalised twice with dehydration owing to severe mucositis resulting in vomiting, diarrhoea and mouth ulcers. Once the dose was dropped (from 5 Tykerb daily i.e. 1250mg to 4 daily i.e. 1000 daily and Capcitabine from 4 to 3 daily the vomiting ceased and the diarrhoea became manageable.I did have hand/ foot syndrome and some worsening of my peripheral neuropathy in my fingers and toes that I originally contracted when I was on Taxol. However I found all these side effects tolerable. By Jan 2010 the liver mets had again progressed and CA15-3 had risen from a low of 58 in Oct 2009 to 124 in Feb 2010. I was started on Herceptin in combination with a trial drug but progression continued until April 2010 when I commenced Herceptin and Tykerb in combination. Unfortunately there has been further progression (CA 15-3 most recently 512) and I am now considering an Abraxane/Tykerb combination. In short I would recommend try the Tykerb/Xeloda combination as it gave me a progression-free year. I am now prepared to pay for Tykerb myself as it seems to have benefit for me. I would only suggest you ask if there are any trials of TDM-1 that you would be eligible for before you begin. I am hopeful that one day I will have access to TDM-1 as from reading this site it looks very promising. I plan to do what I can to remain healthy enough to benefit from that drug.
I wish you the very best for your treatment.I have had enormous benefit from my treatments to date and am enjoying every day with my husband, children, extended family and friends.
Trish from Melbourne ,Australia.

verainlove · 08-02-2010, 02:06 PM

Thank you Trish so much. The information you given is really helpful to me.

Wish you to find the right treatment to have many years to enjoy.

Praying for you and your family.

With love

Galina

StephN · 08-03-2010, 12:30 PM

Hello Galina -
How are you coming with getting Tykerb? Any movement in that direction.

If "pain" is the only symptom under which your bone mets can be radiated, maybe you should develop some "pain." Why wait until you start to have trouble walking or start to loose feeling in your legs?

Also, I am sorry to hear that you had a bad egg for a husband. There are several members of this site who had similar experience where their man could not/would not deal with the cancer and left the relationship. Very sad when they are so selfish.

Lots of prayers being said for you.

verainlove · 08-03-2010, 02:53 PM

Hi Steph

So glad to hear from you as most of the time I'm on my own. My children live abroad, they visit me whenever they can, so do I and we speak by Skype.

Still not sure I'll get my Tykerb as it was refused and now I have to wait if appeal will work. No treatment for 3 weeks already, just may guess what's going on with my CA.

Yes, I had a hard time with my husband, used to cry a lot as I was going through the treatment at the same time, but now feeling better. Moving closer to God helped greately, also having antidepressants.

About "pain" I know you're right, this is good advice, just having difficultes with pretending. Still will think.

Thanks and all my love from my greatful heart.

Galina

StephN · 08-03-2010, 06:08 PM

Dear Galina -
I am glad to hear you have children who communicate with you.

About the idea of "pretending" we have a symptom. With this disease, we need to use all the possibilities. Some of the members here developed "headaches" so they could have an MRI to check their brain. A few of these ladies DID actually have tumors WITHOUT symptoms.

Just pointing this out as we can have dangerous tumors that do not cause pain. In my case I had two tumors in my brain and I had NO symptoms. Never had any kind of headache.

These tumors can respond to treatment, and the most dangerous tumors should be treated.

The health care system is going to do the minimum unless we push them for more.