Hi everyone,
I was initally diagnosed with breast cancer in 2005 at 29yrs old. Since then it has come back twice. I have had lots of surgery, FEC, Taxotere & 2 lots of Herceptin.
Yesterday I was told that I had developed secondaries in my lungs & liver. I am having a bone scan 17th Nov to see if it has spread to my bones. My onc is going to put my case forward & try to get me Lapatinib (although I don’t want to get my hopes up as I know how difficult this could be). Also she is going to try Capecitabine.
I was just wondering if anybody else was in a similar situation to me & what treatment they were offered & was it effective. I am so terrified, I guess I just need to hear some positive stories.
Thankyou in advance, Lisa
Hi Lisa, so sorry to hear your news. Sorry I can’t offer advice re secondaries but just wanted to send you a {{{hug}}}- I’m sure lots of help will be along shortly for you, Di x
Hi Lisa, so sorry to hear about your secondaries. I am in a similar situation to you, in that I have also had lots of surgery, FEC, Taxotere and Herceptin since my primary in 2003 and am due to start Capecitabine with Lapatinib shortly as I have recently been diagnosed with lung mets (i’ve had bone mets since Jan 07). I too would like to hear some positive stories so I hope there are some out there.
Good luck with getting the Lapatinib.
Linda
Hi Linda and Di, sorry you have had to join us. It sounds like you have ben through a lot already. Iwanted to let you know that youre initial shock will subside and that there are lots of treatments still to try. I was diagnosed with primary and lung mets at the same time 2 and a half years ago and still feel relatively well. I have been on herceptin since diagnosis, have had periods on tamoxifen and cabecitobin, and am currently waiting to see if my PCT will fund Abraxane.
There are people on this forum with a wealth of knowledge and I know you will get lots of support.
love Nicky
Hi Lisa, I’m ‘lucky’ in so far as I only have secondaries in my spine, but I’ve had FEC/taxol and op’s so i know already what you’ve been through.
I am on herceptin and pamidronate at the moment and all seems to be stable, a very different story from when i was first diagnosed with secondaries and found myself before and after my spinal op in a wheelchair. I won’t deny that I have neve felt as ‘fit’ as i used to and i am very tired a lot of the time. However I didn’t think at the worse times I would feel this good again either.
I hope you get the treatment you need, and if there is a problem don’t forget that on this site we are proving ourselves to be quite successful in campaigning for things in recent times.
I’m sure you must be feeling pretty dire at the moment, and i do hope you have the support you need, but this site is also very supportive too i have found. I wish you the very best. Do let us know how you get on.
Take good care xx
Thankyou everyone for your speedy responses.
Since I was originally diagnosed, I have found this forum very helpful. I have only recently found the courage to explore the secondaries section & realised I don’t know that much about the treatments etc for secondaries so it’s great to hear from people in similar situations.
Linda- Please can I ask you if you had any difficulty getting Lapatinib?
I’m off to do some research about the other drugs mentioned in these posts, thanks again,
Lisa x
Hello Lisa, I’m sorry to hear of your diagnosis. I don’t have any experience of Lapatinib but I’m on Capecitabine at the moment…and have had no active cancer for a number of months…well over a year…I’m on the tablets until they stop working. I know there are many other posters with secondaries who have had years with Capecitabine. I hope it works really well for you. I was diagnosed with bone mets in 2003. This is a supportive forum and there are some very effective treatments for secondaries…Love Belinda…x
Lisa, I’m so very sorry to hear about your secondaries. You may not remember me, but we were mastectomy “twins” back in 2005 and I’ve followed your posts ever since. I don’t have secondaries myself, but a friend of mine did very well for a long time on Capecitabine and was able to work part-time whilst on it. Wishing your onc success with her efforts to get Lapatinib for you.
Kathy xx
Hi Kathy, Yes I do remember you, I hope you are well. Thankyou for your message, it makes me feel a little more positive xxx
Hi Lisa, I had 10 years from original diagnosis until I found out the disease had spread to my bones, my spine, ribs, thorax and pelvis. The prognosis was not good but 10 year on and I am still hare and new drugs are allowing me to continue with life. I no longer work, retired early but inbetween treatments I do really well and still enjoy life. I am so glad to be here still and see my daughters grow up. I hope your bone scan goes well. It is a relatively easy procedure but if you are not sure what to expect, feel free to ask. I am taking Capacitabine just now and finish the course on Thursday. Am I going to celebrate…you bet I am. Take care, much love Val X
hi 111lisam so sorry to hear your diagnosis ,i got diagnosed with secondarys in lungs and liver in aug this year ,after havin bc 16yrs ago ,i am on herceptin and taxotere,i had a scan last mon and results were very good both tumours have shrunk considerably ,so although am feeling bit under the weather with chemon ,at least i know its doing its job ,take care luv barbara xxx
Hi Freda, I am so glad that you got good results and that the treatment is helping keep the disease under control. Hope it continues. Love Val X
hi val thank you very much ,felt like i`d won the lottery last thurs !well its better than the lottery ",hope your doing well take care luv barb xxx
Hi everyone,
I am not having Capecitebine with Lapatinib as we are still waiting to hear if the Lapatinib will be funded for me. My Onc is going to try Navelbine with more Herceptin. Has anybody else had Navelbine?
Lisa x
Hi Lisa
I’m on Navelbine which I know as vinorelbine, but I’m sure they’re the same. It’s been fine and surprisingly fine. I haven’t lost my hair, and I have a 2 and 4 year old so very busy and can keep up with their busy lives still. Have had 3 cycles so far, pet scan on monday, then see what else. I’ve had nose bleeds due to low platelets and am knackered, but then I’d be knackered anyway with busy life! but that really is all.
I was originally diagnosed in july 07 (wle and axillary clearance 12/15 nodes pos). returned sep 09 in neck, chest and lung.
aparently herceptin and navelbine work really well together - so fingers crossed that our story too.
please let us know how you get on
hx
Hi
I’m on vinorelbine at the moment. I’ve had eight doses so far in eight weeks and I seem to be doing really well on it. I’m having it in capsule form so it’s really easy. My bloods are holding up really well and nothing to report re side effects. I’m also having Herceptin every three weeks. Is anyone else out there having it every week?
I’m told vinorelbine is an effective chemo so fingers crossed.
Previously I was taking capecitabine with lapatinib which worked well for about a year but then stopped working. I did have very sore fingers and toes but I think this was caused by the Capecitabine rather than Lapatinib
xxx
Hi Lisa
Sorry that you have had this dx I was dx with mets to my liver lungs and lymph system at first dx back in 2007 and was given 4 months. But here i am 2 and half years on and surprisingly well. I have had FEC TAxotere and am now Capecitimine. I have also been on Armidex. I am taking loads of pain killers as my lung is painful.
Keeping my fingers crossed for you Caroline
hi everyone i was diagnosed with dcis and invasive ductal i had a lumpectomy and sentinal node disection,i have not had chemo only 3 weeks of radio,and have to take tamoxifen for next 5 years.i was wondering even though it had not spread to my nodes or blood,can i still get secondaries x
Hi cuddles1960,
Welcome to the Breast Cancer Care Discussion Forums.
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Kind regards,
Kate, Facilitator
Hi Lisa,
sorry to hear about your diagosis.
I was diagnosed in June 07 with lung and bone mets. It was not looking good BUT here I am 2 and half years later and I am doing OK. If you need any help or advise we are all here on hand to help out. we have all been where you are and have had the ups and the downs.
It is a good site and you will gain a lot of help and support.
All the best
Fay ;o)