I am currently on Herceptin but onc is talking about putting me on Lapatinib (Tyverb) in conjunction with Capcetibine as my bone mets are getting worse. Also have a lung drain in (2 years in June) after pleural and pericardial effusions and nothing has dried up the fluid so perhaps this could work.
I was briefly on 3000mg of Capcetibine with Herceptin (about 4 months) but gave it up as it really affected my hands/feet and also felt very depressed. Perhaps it was coincidence but when I stopped Capcetibine tablets I felt fine again.
I really am in two minds about the new regime as am dreading the Capcetibine. Wondered how anyone is getting on with this combination, also if you can have Lapatinib on its own. What amount of Capcetibine do you have, the chemo nurse told me it would need to be 3000mg.
Thanks
Hi! Just replied to you on your other posting but will copy my reply here…x
Hi, just wanted to wish you Good Luck, think I’ve already mentioned it on this thread, I’m her2- but I’ve been on capecitabine for 2 years now. I have bone mets that were diagnosed in 2003. For me, Capecitabine has been a very tolerable chemo. I have 2x 2,000mgs a day (so 4,000 mgs in all) The dose can be lowered if you are struggling and then upped again. I use Udderly Smooth cream on hands and feet…would definitely recommend using any cream from the very start before any problems. If you’re interested and google Udderly Smooth you’ll find lots of stockists…lots of us capecitabine users seem to find it a good cream…Good Luck, I hope the combo works well for you…xxx
I had 5 cycles of capecitabine+lapatanib-but unfortunately it achieved nothing for me. Other than horrendous side effects! My feet blistered dreadfully-all around the side and under my toes, to such an extent that I could scarcely walk more than a few yards at a time. I found compeed blister patches helped, along with various other remedies. But even with a dose reduction, I struggled badly. I don’t know if there is anything you can do in advance to try and stop this happening. Creams made no impact at all-I really just had to deal with the symptoms as they arose, which was far from ideal.The problem seems to be taht the side effects to lapatanib are the same as those with capecitabine, so you are literally getting double trouble.
I was also covered in a rash from head to foot! It didn’t hurt-quite itchy, but not sore-although I did get some fumnny looks.
I found the amount of tablets I had to take seemed to upset my stomach too-I felt nauseous a lot of the time.
But…you may be one of the lucky ones, who copes ok. Finally, you can’t have lapatanib on it’s own-it’s only licensed for use with capecitabine. Good luck-if you want any more info, or just a chat, please feel free to drop me a pm-not many people have had this combination, so I would be more than happy to help further, if I can.
Hi,
Just found this thread and I, apparantly, am starting Tyverb with Capecetibine. I had a call from my b.c. nurse last night and my latest scan showed progression to my lung mets and lymph nodes.
This latest development is amazing because the scan I had nine weeks previously showed considerable reduction. I have just finished six cycles of Vinoralbine…talk about a rollercoaster!!I feel totally numb with shock!!
I had Capecetibine last year and apart from sore feet, I felt really well.I used udderley cream and it really helped
My b.c. nurse said they will have to get funding for Tyverb …can this be difficult? Does anyone know anything about it?
Take care,
Jan
Funding can be difficult, Jan. I was being treated privately, so my insurance company picked up the costs.Hope your onc is able to get approval for you.
Jan (Toronto),
Crappy news. I am sorry, its such a tricky disease.I was so pleased that you were going to enjoy your chemo break.
Anyway, here is hoping you can get the funding !!
I hope that you have not let it stop the golfing!!??
You had been on my mind, so it was lovely to see you posting!
julie x
Hi
I’ve had Capectabine with Tyverb and it was successful for me for about a year. I had very sore fingers and toes which were painful at first so I had a break to clear them up and although they came back they weren’t so bad. I was advised to take vitamin b12 (or 6? can’t remember sorry) but it didn’t seem to make any difference. I think it does for some though.
On the whole I found this combination quite easy and except for the fingers and toes I felt very well on it. My dose of Cabecitabine was reduced to deal with the problem fingers and toes and that’s when it stopped working. I didn’t need much in the way of anti-sickness and worked all the way through 4 days a week. Which I have done throughout all my chemo.
As far as I know you can’t have Tyverb on its own, it’s only licensed in combination with Capecitabine. I really hope you can get funding, it’s an absolute disgrace that some drugs readily available in the rest of Europe aren’t available here.
If you think of anything else you’d like to ask don’t hesitate.
Best of luck
Barbara x
Hi
I forgot to put this in my earlier comment. You take 5x250 mg of Lapatinib as one dose for 21 days and the Capecitabine dose is calculated depending on your weight. If you get bad SEs from the Capecitabine, I think I’m right in saying that they can reduce the dose without it being detrimental to the treatment
Barbara
Hi Barbara,
Thank you, Really interested to know if you got Tyverb with Capecetibine on the N.H.S. or were you a private patient.
Also did you have it for twelve months continually or did you have a break?
Julie… great to hear from you and no it hasn`t stopped me golfing I managed to play three times this week, that, and my wonderful grandchildren keep me sane (or half sane!)Hope you are doing well.
Elaine…Looking through past posts it doesn`t look too good as far as funding goes, but will see my onc. on Monday so should learn more then, thanks.
Take care,
Jan
Jan, am pretty certain that my onc has been able to obtain NHS funding for one patient-so if you reach a brick wall, let me know, and I’ll see what I can find out. I’m hoping that in time funding for this will become easier, as it does seem to hold a fair amount of promise. But in the meantime, I think with it being so horrendously expensive, the NHS are dragging their feet. Good luck on Monday-I’ll cross my fingers,toes, eyes, etc, for you!