I just wondered if any of you could help me or give me any hope???
I have been on the Tykerb/Xeloda trial for 4 cycles for lung mets and its failed. My scan results how shown further progression and my onc says my cancer is proving to be resistant to all the treatments tried so far… E-CMF, Tamoxifen, Taxotere, Zoladex, Arimidex, Herceptin, Tykerb, Xeloda…
The mets are still confirned to my lungs at the moment, I am feeling very scared and wondered what other treatments any of you might of had to give me some hope?
I dont feel ill, infact i have been feeling pretty good - hardly breathless, only very tired…
Please share your experiences if you think it will help me… my onc is going to refer me to the marsden in london to see if they can come up with a suitable combination to help…
sorry to hear none of the treatments have worked so far there always seems to be new ones coming out so perhaps the royal marsden will know of any that are being trialed. Can i ask if your mets are spread throughout your lungs as i was diagnosed with mets to one lung 4 years ago and i had an op to remove part of mylung in Leeds and then had taxotere as well. I know i was able to have the op as the mets were not widespread in my lung but the combination of op and taxotere worked and i have had no treatment and have felt very well for the last three and a half years.
I hope your onc gets some joy with the royal but i firmly believe a combination of things worked for me such as relaxation, chakra healing cds, reiki and believing i can heal from within. I know this isnt for everyone but Im sending you healing thoughts and lots of hugs xxx
I am sorry you have had more bad news. I just wondered if your onc could ask about trials for Avastin? I think in the states they get it in combination with either herceptin or xeloda. My hospital are trialling it for 1st line mets treatments but I don’t know if anywhere else in the country is carrying out any other trials. It is the only ‘new’ thing I can think of.
Sorry to hear your news, and hope that they find something for you to treat you with that will help. There must be something out there. Good luck at the Marsden and let us know how you get on.
Did you doctors try you on FEC? that was my first line of treatment. Maybe you were not started on it coz your breast cancer was of a different type to me. Mine is IDC HER2 positive just had 3 lots of FEC and started 3 lots of TAc together with herceptin.
Did you read in the paper today about a vaccination for cancer - it’s in the Daily Telegraph - have a look into that - may be useful for you.
Very best of luck
Rebz Amy xxx
Jakki, Hi I’m a lung mettie and live in the states. I saw Jenny’s post about avastin. I did a combo of avastin and abraxane. I don’t believe abraxane is available to you yet. But abraxane is a “taxol chemo”. Ask about a combo of taxol and abraxane. I also see you have not had vinorelbine. Funnyface
Jakki
So sorry - I understand as my lung mets shrink on chemo but regrow rapidly once off it.
Vineralbine did wonders for my lungs and improved my breathing beyond belief and also got rid of the bone pain and shrunk my liver met. I was under the impression but don’t know why that vinorelbine is usually the first option for lung mets as they use it for primary lung cancer.
I can’t remember and know I have asked you before is your lung spread in your lymph system or nodes or lots of tumours or in the pleural spaces? Is that why itis inoperable?
I also have steroids for my lung mets as with the type I’ve got steroids help the inflammation caused by the widespread lymphangitis. Having seen the results of my bronchoscopy and now knowing that my air exchange is only 55% when should be 100% I am very scared too but at the same time feel quite well but my breathing is not good on hills/stairs etc and do get short of breath.
I would definately ask for referral to the marsden and see if you can get onto an avastin trial as well.
Good luck
Kate
thanks so much for the replies… it means so much to me when i am just so desparate to give this cancer a kick up the backside and try and at least stop it in its tracks.
rebzAmy - I did have E- CMF chemo first… which is i believe the same combo as FEC?? correct me if i’m wrong
funnyface - how long have you been on the abraxane? I have mentioned this drug to my onc and he was going to enquire if its possible to get access to it at the mardesn in london.
Kate - I dont know if i have lymph spread in my lungs, All i know is that i have several tumours in both lungs that are in operable, the largest tumour is 3 and half centimeters and i have new ones that are apppearing all the time - well each time i have a scan - there are new ones there… i have lymph spread in my neck so i dont know if that would aply to my lungs… my lymph nodes under my arms were clear, my onc says it spread vasculary.
I am going to ask about the avastin trial… does anyone know if i am refused it in england, is it possible to go to the states for it?
thanks again for all your help… your right too… i havent had vinorelbine either yet… does anyone know if this works the same way as capecitabine or is it a stronger chemo?
I am in a similar position to you, I was diagnosed with lung mets exactly 2 years ago. I have had taxotere, I then had capecitabine with oral vinorelbine last year for 6 months. It progressed in March 07 and I had MV carboplatin which was good at reducing the tumours but nearly finshed me off.
I have been told my condition is so far stable and I am allowed a break from chemo. My tumours are on both lungs and I have multiple lesions and therefore cannot have radio.
Don’t worry you have lots of chemo options left. I was worried that I was going through my chemo options too quickly. In hindsight I wished that I had not gone on the trial and just had capecitabine on its own so that I could fall back on vinerolbine later. They may allow me to have it in IV form perhaps. It is a good idea to get a referal to the Marsden as they are always having trials.
At the moment like you my tumours are in the lungs only with a lymph node in the neck which at the moment not too worried about.
I hope you find the right chemo for you and let us know what they give you
Really hope the marsden comes up with some options.
As Kate says vinorilbine (navelbine) could be one option (it has worked quite well in combnation with xeloda on my triple negative chest wall/supraclav. recurrence.)
Then there are the platinum based chemos…carboplatin and cisplatin…sometimes I think used in combination with gemzar.
Hi there, I am at the Marsden and I told had to come off the Tykerb trail on Wed just gone and it wasn’t working and my breathing was getting bad again. It did work for a few weeks, but then stopped. I start on Herceptin and Vinorelbine tomorrow for 5 cycles.I also have lungs mets and found out today that I also have bone too (spine, ribs and pelvic). It all sounds so scary, but happy to know that I am not the only one. I have read on the internet that this cobination works well, which is what they seem to say about all the others !!! Fingers cross, things will get better, but I just wish they could stop in spreading and give me a few months off !! Been at this for 4 1/2 years now and it is not funny anymore.
Hi there
I would ask about carboplatain - a lady I was intouch with from these boards tried 9 different chemo’s she was 3 neg - but this worked VERY well for her, other friends including myself have all had positive results.
Good luck love Amber xx
I used to read most of your posts when you were a regular contributor to the old version of this site and you were always there with words of advice and encouragment for others. You are in my thoughts. I am sorry that I cannot offer any practical advice.
I received a letter from the Marsden yesterday to say they could not see me as they have no new treatments or alternative drugs to try apart from what my own onc is suggesting… i.e either vinorelbine or carboplatin…
I’m devastated and very scared to say the least… i was hoping that i could be seen by them and have another expert opinion, i figured it may install some confidence in myself of trying to stop this cancer in its tracks…
Again, I am very sorry to hear this update. I really feel for you. I am sure that others will respond with helpful thoughts and advice. I truly hope that there is an answer in one of the suggestions in the earlier posts by those who are wise about the options.
Saw my oncologist yesterday… we are going down the Vinorelbine and Herceptin route. I start next week… He said after that i have an option of a platinum based chemo and then weekly taxol. I really hope that this chemo works this time… i’m not giving in…
Margaret… you said some lovely words… thanks… i dont post so often on this site as i’m not keen on the layout of it now but do have a glance each day.
Now this sounds more positive to me. Some action, that’s what you need. Your attitude is just the right response and I look forward to an occasional post to tell us how you feel and what is happening.
Hi Jakki
I do hope this works for you. I have just started Vinorelbine as my lung mets are threatening to pop into action again. Are you HER2 positive to have Herceptin with it? I asked about Hercetpin last time round but am not HER2 positive
Best Wishes
Kathryn