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Anyone on lapitinib in the north east

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Re: Anyone on lapitinib in the north east

Hello all - and especially Mary Grace. Sorry I missed your post and kind offer of help in the Midlands. Really kind.

Yes I am finally here and have been for about 6 weeks now. Eventually notes turned up and saw consultant last week. He wants me back on herceptin which had previously stopped - which is fine by me as tolerate that very well - and also have a scan to find out what happening in rest of me. The results of that will determine whether more chemo in offing or not. All fine but these appts take forever so having to chase up.

Moving back up here definitely the best thing I did. Lovely to be with family again and boys have settled in verey well at school.
We've been so lucky with the weather lately too so that does help.

Overall have not been doing too badly but just had a blip with the steroids. Have been reducing but to lowest dose but then headaches and sickness started up so have just had to go back up again. Still better be on them than feel awful.

Hope all feeling as good as poss at the mo
x

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Re: Anyone on lapitinib in the north east

xx

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Re: Anyone on lapitinib in the north east

Just to ask Belinda a question - tomorrow I have to decide which chemo to have now my hormone therapy has stopped working. I am sort of thinking to go for Capecitabine as the lesser of the 3 evils - but what side effects/bad effects have you experienced, if any. Thanks in advance - I am trawling through the site trying to glean information - left it a bit late as just didn't want to be thinking about it!

belinda
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Re: Anyone on lapitinib in the north east

Hi Twinmummy, I just wanted to wish you all the best with your treatment and moving. I'd read some of your older posts as Docetaxol will be my next chemo sometime in the future. I'm not her2+ but I've been on Capecitabine since April 2008, constantly and a high dose, 2 weeks on, 1 week off cycles. For me it's been a good, pretty kind and very effective chemo. I hope you get some good results and a long time with the Lap/Cap combo.
Best Wishes..xx

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Re: Anyone on lapitinib in the north east

Thanks so much Julie and Linda for replying. Interesting to hear your experience of lapatinib Linda, know we are all different though in how we espond. I also had skin mets at time of secondary diagnosis. I had 6 rounds of decetaxol after that which worked quite well, keeping the disease stable and even some shrinkage of liver and lung mets. Such a blow about the brain mets though I am just hoping I get a good response with radiohterapy and new chemo. Lots of family members up in northeast to help out which is why I'mkeen to go up there and have boys under 10 so want to get them established in new school asap. Will keep you up to date as to how I get on. Am dreading more treatment but aim to keep going a lot longer yet!
xx

juliet66
Member

Re: Anyone on lapitinib in the north east

I am sorry to hear news of your recent brain mets. It really is a pile of cr#p.
I am not on the same treatment. I think the lapatinib/capecitabine combination is relatively new , so I suspect you will not get a lot of replies.
I feel for you very much as I presume you have young children (duh).

Please stay in touch and let us know how you get on !!?? I agree with Linda, if any of us can offer any support. x

I have mets in my spine and lungs.

Julie x

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Re: Anyone on lapitinib in the north east

Hi

I don't know if I can help much, but I had a Capcetabine and Lapatinib for 3 months, unfortunately I has a little progression on it so i've moved on to other chemos now, but I got it through my private medical insurance but my Oncologist also works in the NHS at the Northern Centre for Cancer Care in Newcastle.

My mets are in the bones, lungs and skin.

Hope you get the cap/lab and that it works very well for you. You are right, this is so scary, so if I can give you any support at all please let me know.

Best wishes

Linda

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Anyone on lapitinib in the north east

Hi all
I was diagnosed with mets in bones, lungs and liver last May and have now been told I have brain mets. Due to start radiotherapy and afterwards onc wants me to start on capecitabine and lapitinib. I am currently in the midlands but want to move back to the north east asap and particularly when I start the new chemo. I understnad that onc needs to apply to cancer fund to get the lapitininib. Is there anyone in the northeast (newcastle area) that is currently on this drug or had problems getting it? Also how has it worked for you, particularly if you have it with capecitabine and also have brain mets.
Thankful for any advice help on this. This is scary!