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Newly diaganosed with secondaries to the lungs & liver

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Re: Newly diaganosed with secondaries to the lungs & liver

Hi Lisa,

Thanks for that info. Was looking at some of the other posts too. I was on my own at my consultation on Weds and I can't remember what I was offered! It all gets a bit much when they are telling you this stuff eh? My Onc did print out a leaflet on Capecitabine though which I've seen mentioned quite favourably. I really need to look into it more but seems like I've been on the phone non-stop since Weds night. Also think I need to change my life-style quite a lot! Thanks for your help and hope to get to use this sight more in the future. Hoppy xx

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Re: Newly diaganosed with secondaries to the lungs & liver

Hi Hoppy,
I know exactly how you feel regarding the chemo. I had 2 recurrences of breast cancer before I was diagnosed with secondaries so I have had FEC & Taxotere & had terrible side effects with both treatments.
I am currently on oral Navelbine & the side effects are nowhere near as bad. I haven't been sick from this chemo & you don't lose your hair (unfortunately I have lost my hair anyway from the WBR)
I am due for a scan next Thurs to see if it has helped at all(fingers crossed).
It might be worth trying?
Lisa x

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Re: Newly diaganosed with secondaries to the lungs & liver

Hi, I've never used the forums before so am very new at this. I was initially dx in March 06 (at age 46) then with secondaries in bone Jan 08. Was told y'day that it's now in liver and lungs. Don't know what to do! Hated chemo before and always said I wouldn't do it again but have a couple of weeks to think about it. Would appreciate any advice.

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Re: Newly diaganosed with secondaries to the lungs & liver

Hi Lisa,
Thanks for your positive response to my post, it gives me hope.
I had FEC when I was first diagnosed with breast cancer in 2005 & had Taxotere when I had my first recurrence in 2008. Obviously they haven't worked & I don't think the Navelbine is working as I feel like my breathlessness is getting worse by the day. I will be seeing my onc on Thurs so hopefully she will be able to recommend something else.
Lisa x

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Re: Newly diaganosed with secondaries to the lungs & liver

Lisa,

Another Lisa here, diagnosed 3.5 years ago with Liver, Lungs and Bones. Had taxotere did not work, Navelbine had in 2000 on a trial with my primary so went straight on to Capceitabine and have been on it for 3.5 years and am doing really well, life is normal, I have my long hair back, good immune system, got rid of my lung mets and liver mets on its way out too, with bones stable.

No one would ever know I was mouldy on the inside. Try and go for Capceitabine first, there are loads of us with success stories and the side effects are so much better than other chemos. Up to your oncologist of course, but I would always recommend it. p.s I am now 37, first diagnosed at 27 with primary.

Hope this helps too.

Lisa

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Re: Newly diaganosed with secondaries to the lungs & liver

Thankyou for your responses to my post. I feel much more hopeful reading your posts, thanks again Lisa xx

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Re: Newly diaganosed with secondaries to the lungs & liver

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)

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Re: Newly diaganosed with secondaries to the lungs & liver

Hi cuddles1960,

Welcome to the Breast Cancer Care Discussion Forums.

If you feel you would like to talk to someone about any specific questions or concerns you have then the Breast Cancer Care Helpline is here for you, offering support and information. Calls to the helpline are free and confidential, lines are usually open Mon to Fri 9am - 5pm and Sat 9am - 2pm Tel: 0808 800 6000

Kind regards,
Kate, Facilitator

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Re: Newly diaganosed with secondaries to the lungs & liver

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

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Newly diaganosed with secondaries to the lungs & liver

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