Hi
Had operation to remove a local recurrence on Thursday. Oncologist was hoping to give me Lapitinib (and Capecitabine) (as have been on Herceptin for a while, yet still had recurrence) - it has been refused by the PCT as in my circumstances it only has modest benefits and is not cost effective. Just wondered if anyone else has managed to secure funding for Lapitinib or is already taking it?
Hello,
Our stories are similar.
I’ve been on the LEAP trial since april 2008 at the London Marsden. Initially when referred there for a second opinion Dr Johnston said Lapatinib would be ideal for me as Herceptin had probably failed, however I did not meet the trial criteria at that time (Jan 08) as there had been no progression. By April there was so I got on the trial and so far have had a good response. My local onc, I see him 3 monthly, told me they also have the trial locally now but that NICE were unlikely to licence Lapatinib!
Could you enquire about any trials in your area or ring the Mardsen?
Good Luck,
Jackie x
Sorry Jackie - I thought that I had replied to your post.
The pharmacist at Lincoln County Hospital is looking into whether there are any trials - he did suggest one, but because I have already had the tumour removed I cannot go onto that one.
I see the oncologist again on 18th Feb to see what my best options are, as he should have the HER-2 histology by then.
What treatment have you had?
Sally
Hello Sally,
I’m an IBC girl so had chemo beofre surgery in 2006 (Fec and taxotere). My local recurrence appeared during rads and was quite tiny but because I had noticed it I had a WLE and got clear margins.
I think the liklihood of me getting a recurence with IBC was quite high and prior to my mastectomy the cancer had begun to attack my skin so I think this made it even more likely!
I had herceptin with my tax wich was stopped after the recurrence.I was also taken off tamoxifen at that time and put on Femera along with monthly zoladex implants! Phew!!
I went on to develop tiny skin mets, again fairly typical for IBC but carried on with the hormonals until there was progression. I was then referred to London Marsden for second opinion and was put on the LEAP trial, the criteria being herceptin having failed (probably) and my progression.
Doing well on this combo, started in April 08. But big toes are suffering enormously. Have had a slight reduction of xeloda, which helped at first, but they’re pretty bad again mid cycle.
I don’t know of any trials still open for Lapainib so hope you were successful locally. Please let me know,
Take Care,
Jackie x
Quick update
I’ve been taken off the LEAP trial as the chemo stopped working and the side effects were getting too much.
Hope everyone else is faring better,
Jackie x