Lapatinib + Xeloda = any hope?

[verainlove]

Long time reading this forum, first time posting. I have many questions which I hope to find some answers for. I hope they will be helpful for me.
Diagnosed with secondary cancer in November 2009. Received Taxotere + Herceptin for 5 months. By the middle of treatment, CA153 dropped from 60 to 20, then started to rise again. So, they stopped the treatment. They're not giving me any hormone treatment or herceptin now. I've been having Xeloda for 4 cycles. CA continues to rise. Now, I've been offered Lapatinib + Xeloda. I'm not quite certain about this treatment because Xeloda hasn't been working. I don't care about my bone mets, but my liver mets have started growing in number.
I'd appreciate if anyone could share their experience with Lapatinib + Xeloda.
Another question I have is this - how reliable are cancer markers? Are they a certain indication of the way the disease progresses?
I'm really grateful to the founders of this website. It's a real help to people like me. God bless!

Galina

[Faith in Him]

I have had great success with this combo. It has competely cleared up my recurrence which showed up as IBC on the chest wall.

I hope it works wonders for you too.

Tonya

[Pam P]

I would ask why you weren't given herceptin along with xeloda. I was on herceptin/xeloda for 2 1/2 years with success. Then tumor marker ca2729 started rising and I switched to xeloda/lapatinib and was on that successfully for another 1 1/2 yrs. So yes there's hope - it's a good combo. I was taken off that & did other tx for a couple of years. When they stopped working I started xeloda again in April this time with both herceptin & lapatinib.... so far so good.

Tumor markers -- they are not always accurate measure, but on some people are very reliable. Scans are the best determiner of status.

[Chelee]

I haven't tried this combo yet...but I was just down to UCLA to see about a phase III clinical trial that compares T-DM1 vs Tykerb/Xeloda. So I am sure it is a good treatment option or they wouldn't run it up against T-DM1. (That's my thoughts on it.) I also know of one woman that told me Tykerb/Xeloda worked great for her and has her back to NED/stable.

As far as tumor markers many oncologist don't like to use them. They aren't always reliable. However they are a very reliable tool for many of us...including my self. My onc runs the CA27.29 and the only time it went up is when I recurred. Then dropped when chemo proved to be working. So for me personally tumor markers work great. Tumor markers should be used as one part of the picture. If scans show progression and markers rise together...chances are you know they work for you. Hope this helps.

Chelee

[Ellie F]

hi
I notice you are in the UK and I suspect that is why you only got xeloda originally. Now there are some trials available that combine it with tykerb (part of the same trials Chelee referred to ) As you are aware NICE do not believe that tykerb is a cost effective option for metastatic breast cancer despite positive views from most of Britain's top breast oncologists.
Good luck, this regime has proved very good hence why it is in trials against T-DM1

Ellie

[hutchibk]

Best wishes with NICE... hopefully you have been offered a trial. I did Tykerb/lapatinib w/ Xeloda for 19 months with fantastic results, but I did not have liver mets... then I moved on to Tykerb with Herceptin which I am on now with Tamoxifen, and still doing extremely well. I have had friends with liver mets who saw great results with Herceptin/Navelbine.

[verainlove]

Thanks so much everyone who tryed to help me.
The thing is here in UK having treatment on NHS limits our options. While I'm still hoping to prolong my life my Onc says their aim to " make me feel well". They would not say but I feel they don't believe in any improvement at this stage. Don't get me wrong they are good and I'm greatful for treatment I got.
I had a lot of chemo, rad, herceptin.After 3 rounds of Taxotere+Herceptin was improvement in liver, CA down,but next 3 ones proved not working- progress in the liver, CA up again. 4 rounds of Xeloda didn't make any differens. Now my CA back to what it was in Dec.(when I was diagnosed with secondary) CT shows great progress in liver.
That's why my Onc would not give me Herceptin any more as he believes it doesn't work for me.By the same reason he refuses to fit me in any trial.
I was offered Tykerb just cos I asked to give me something as I'm not ready to give up, still not sure I'll get it.
Thank all of you again for your kindness and support. I don't feel alone any more and it really helps.
God bless
With love
Galina

[StephN]

Dear Galina -

You just keep on telling them you are NOT ready to give up and insist that you don't want THEM to give up on YOU.

This baloney about wanting you to "feel well" rather than "prolong your life" is just cost cutting. If you are well enough to hit your mets hard, then keep giving it a try. Worked for me, as you will see in my signature below. I had very extensive liver mets, got rid of them and they have never come back.

I send you hope for the energy to keep after your medical team for a different treatment.

[StephN]

P.S. Can they give you more radiation for some of the bone mets?

[verainlove]

Dear Steph
You are an inspiration for me as you went through hell and won. But Herceptin worked for you.
Herceptin stoped working for me although I didn't had it long. So did hormon tabls.
I have HER2+++ and if Herceptin doesn't work not much can be done I suppose. I can see their point.
Yes, thank God, I feel well and not going to give up but they wouldn't even listen to me. They have their guesses about the lenght of my life and nothing will make them to change their mind.
I think it's not right cos they try to play God. He alone knows what's going to happen.
I'm greatful for treatment I got and I can't demand any more as it's FREE here(unlike your country).
Unfortunatly I cannot afford private treatment as my husband got rid of me when I become ill leaving me with nothing.Another sad story, sorry.
I have quite spread of bone mets, the worst in spine(collapsed T2), had 5rad treatments for the spine 7 months ago when just diagnosed with secondary cancer. Now I was told I can receive rad treatment for bones just if I have pain.For now I haven't. So not sure if it's good or bad.
Thank you for your kind support.
Praying for you.
With love
Galina

[yankeebikachic]

Galina,
I have had great results with this combo, see below.

[verainlove]

Thank you for giving me hope.

Not sure that combo works the same way for other kind of mets.

Galina

[Trish]

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]

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]

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]

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]

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.