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Lung mets - please join in

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Re: Lung mets - please join in

Hi Pam, I was DX just over a year ago with IBC and Lung Mets, to say I was devastated was an understatement! I had multiple mets, too many to count on both Lungs, I just could not see a good outcome at the time.
However I had 6 tax chemo with Carboplatin and herceptin, as I have IBC my onc would not do a scan until after my chemo was finished, amazingly the Lung mets were reduced to just one ! its so small it can't be measured, The Tax was very hard, it made me quite ill BUT it worked, so worthwhile in the end. The SEs were much the same as other chemo's I think but the tiredness was worse, also aching legs and feet. The way you are having is different to how I had it so maybe it will be kinder to you, I hope so.
You may find the Tax also helps kill the bug you have in Mx site !
Your not moaning ,your just worried and stressed, once your treatment gets started and gets working you'll feel better about things.
Really hope you feel better soon, we are here to help so don't be afraid to come on here and ask anything !
Good luck for friday
Jean x

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Haven`t felt much like posting for a while, but here goes. It is BC that has spread to lung and spine. Having a one off blast of radiotherapy to my spine tomorrow then start chemo on Friday, they are giving me Tax which I didn`t have last time, one a week for 3 weeks then a week off, I`m dreading the SE`s. I`m also having an infusion for my bones every 4 weeks. Any hints for SE`s would be most welcome. I have been feeling the `pits` as I still can`t manage to eat properly and seem to be living on complan and bits and I know I need my strength to get through this. Onn top of this the chemo unit phoned me yesterday to say I still had a `bug` in my open mastectomy wound just hope they can get it sorted out.
Sorry to be a bit of a moaner but I know I can moan to like minded people on this site, I just need some positive vibes.
Pam

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Re: Lung mets - please join in

Aww pam so sorry to hear that i know when your first dx it's a shock it scared the hell out of me but once you get a treatment plan and getting going you feel a little better my chemo as shrunk my mets loads I was dx a yr ago now never thought I'd get to see Xmas its very scary we are all here for you kp posting do you know what chemo y having gd luck Laura

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My worst fears have been realized, saw the Respiratory Consultant today who confirmed cancer in the lung but also on my spine, they haven`t got the full biopsy results yet to confirm if it is BC mets or new primary. I see BC onc at 9am and apparently the spine is the most important for treatment and they are hoping I can start radiotherapy for that this week but are unsure with the holidays. As you can see from the time the sleeping tablets and valium are doing me no good tonight.
Pam

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Re: Lung mets - please join in

extending my hand to you Pam, wish I could do more, really understand what your going through and like Laura has said if it is cancer then there are lots of chemo's to try, really hope it's something else tho.
Thinking of you
Love and light
Sarahlouise xx

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Hi Pam, I went through what you are going throough 2 and half years ago. Mine started with a cough that wouldn't go for several months, followed by x ray that showed a shadow, followed by ct scan which confirmed a white lesion on side of lung. I was then sent to chest clinic for a ct guided biopsy, which wasn't very nice and that confirmed it was breast cancer. I was in utter turmoil and upset for ages. I was put on letrozole and up till now my condition has remained stable and I am leading a fairly normal life, and enjoying it. Lets hope you have good news tomorrow Pam, just wanted to let you know things do get better once you are over the initial shock of it returning (if it has). Do let us know how you get on, will be thinking of you tomorrow, you can pm me anytime if it helps.

Good luck tomorrow
Marina xx

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Re: Lung mets - please join in

Hi Pam,

I'm sure there'll be some of your fellow forum users along soon to give you some support, but please do use the helpline here, they're here to support you as much as possible through this. Lines are open again in the morning at 9am, calls are free, 0808 800 6000

Take care,
Jo, Facilitator

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I feel battered from pillow to post and don`t know if I can take any more.
I had MRI on my spine this morning, all I seem to have done over the past two weeks is visit hospital for tests and keep breaking down crying, can`t eat and living on valium and sleeping pills. I see the Respiratory Consultant tomorrow where he will tell me all the results and on Thursday I see my BC onc. This is worse than the 1st time round. I know all these things have to be done but dread the outcome, my husband and daughters are coming to the hospital with me but I hate the thought of them being upset.
Please send me some positive vibes.
Pam

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Thanks once again ladies for your support, I had a bad night last night after the broncoscopy and did a lot of coughing but it seems easier today.
Now having lots of pain on my mastectomy side on the left but the lung problem is on the right. Had lots of problems at mx site and it has been opened up 4 times since for various procedures, over the past year have been seeing PS as the wound wouldn`t heal. It has finally almost healed but was having a lot of discomfort which the PS said was scar tissue and to massage it. In the past 2 weeks it has become a pain running across the top of my chest, doesn`t hurt when I cough but when I move or try to lift anything it is hell. I`ve been taking strong pain relief but not got any better. Spoke to BCN today on the phone and we are wondering if I have pulled something with all the breathing tests I have had in the past couple of weeks and it really hurt when I did them. BCN is going to try and be around when I see lung specialist next Wednesday and is making me an appointment to see my BC onc on Thursday so there won`t be any delay over the holidays.
Once again thanks to you all for your support and hugs, they do me the power of good.
Pam. xx

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Hi pam I've got lung mets with centre chest node inv it's intreasting how dif hos do dif things I was dx by a x ray and ct the wldnt give me a bronc as sd was to risky maybe they are not really sure if your is cancer which will be gd also if unf it is there are loads of chemo out there and we are all here for you tc big hug Laura xx

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Hi Pam,
Sorry to hear it was a nightmare getting the needle in again, I've also got problem veins and have experienced the very same shed tears etc thankfully thats over now like you said its the waiting room, when do you get your results? I was dx with both primary and secondary lung mets all at the same time, I had a Mamo, MRI, bone scan, CT scan then heart scan along with blood tests all in the same week, at the end of it I was exhausted, stressed and on the edge of a nervous breakdown, but got through it with the support of my best friend and OH, its hard but try and take your mind off the waiting, go out for a long walk, or treat yourself to some lunch, watch a funny movie, have a hot bubbly bath and pamper yourself, this is what I did whilst waiting and have too say it really did help me. Good luck with everything, remember we are all here virtual hand holding across the net for you.
Love and light
sarahlousie xx

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Thanks for your support ladies, had the broncoscopy this afternoon, but got myself all upset as they couldn`t get the needle in for the sedative, last week they couldn`t get the needle in for the CT scan. My husband was with me and he said afterwards he was ready to pick me up and take me home because I was crying so much. Anyway its another hurdle over, just the waiting room again until next Wednesday. I have the feeling its a new primary with all the tests they are doing, or did you all have these tests.
Don`t know what I`d do without the support of all you ladies on this site, its easier for me to put everything down on here with people that are going through the same thing, family and friends are brilliant but don`t understand your real feelings.
Pam. x

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Fantastic news Lisa, wishing you well, good luck to you Pam for this afternoons appointment, will be thinking of you and praying for good results.

Sending all my love and light to you
sarahlousie xx

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That is fantastic news Lisa! I bet you feel good x

Pam170 I am thinking about you for this pm. Hope it goes well and that you too get some good news next week or at least a good treatment plan x

Suzanne xxxx

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So pleased for you Lisa, I shall be having my broncoscopy this afternoon so not looking forward to that.
My appointment with Consultant is next Wednesday and as you did fear the worst.
Your wedding will be some special occasion now and you can enjoy without worry hanging over you.
Reading your post has given me a boost, just to know there is some good news after all.
Pam.xx

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Well i am a rather happy person since Tuesday after my consultation at Guys hospital London with my lovely consultant. She gave me news that the tumours (in various places) have shrunk considerably since i started my medication of monthly zoladex injections and daily exemestane tablets. Instead of tears of sadness i had ended up with tears of joy so my wedding in June will now be a massive party! Although still 'living' with cancer i feel a little like the weight has lifted all my shoulders 🙂

I just hope all the lovely ladies on this forum receives good news like mine. Sending you all lots of luck......

Lisa xxxxxxx

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Well the sleeping tablets and Valium are doing their job, I`ve been on another planet since I started taking them and sleeping most of the time, typical of me missing this glorious weather.
Just want the broncoscopy over tomorrow and the meeting with the Consultant next Wednesday to get all the findings and if anything or what can be done for me.
Pam

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Hi Ladies, well I had to see GP yesterday as I couldn`t cope. She was lovely and talked to me for ages, my husband and daughter were with me. She has put me on low dose valium during the day and sleeping tablets at night just short term until I see the Consultant again next Wednesday. I spoke to my BCN today who was lovely and had a word with the Lung nurse. After the MDT today the Lung nurse phoned and the CT is not looking good and I have to have a broncoscopy and biopsy on Thursday followed by an MRI on my spine asap. I`m not sure now whether is mets or a new primary.
My Son who lives in Hampshire has come up to stay with us in Yorkshire for a week which has given us a boost. No one can believe how I am not coping as I`m usually the strong one.
Snowdrop, just hope you get good news soon.
Pam

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Hi Pam and Sarahlouise
Thanks for your lovely messages. Its so hard to be positive but my hubby to be is doing his best to keep my spirits up. Like your husband Pam, my partner never shows his true feelings but i know via his mother that he gets upset when he speaks to her. I think he's trying to shield me from his feelings which at times is good but others, why oh why won't he share his feelings with me.

Praying for all ladies in our position for positive results of ct scans.

Lisa (aka Snowdrop)

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Hi Pam170 and Snowdrop,

Just wishing you both the best for your ct results, I know how hard it is not too worry but do try and keep your spirits up all is not lost even if your worst fears are realized, hope lives on within us lung mets ladies I am year down the line since my dx (primary and secondaries lung mets dx at same time) and feel fine currently doing tamoxifen/herceptin. The waiting room is worst placed to be and I really sympathize with you both
Snowdrop - Cyberknife treatment does work on lung mets, although I have been told I have too many to go down that route, fingers and toes crossed for you with that, a lady by the name of Lemongrove has had cyberknife treatment she's very approachable and I'm sure wont mind answering any questions you may have on this treatment.
Pam170 - really feel for you and that image of the scans in your mind, my onc asked me if I wanted to see mine and I flat refused being an artist I have a fertile enough imagination without having that image beded in my mind. Try to focus on the fact that your cough has gone and your breathlessness has improved, I also had a terrible cough which developed half way through treatment it turned out to be just a virus and eventually went away of its own accord, the suspicious mark on your lung could just be scar tissue from having a virus. I also suffer with breathlessness but don't believe it has anything to do with the mets on my lungs I think its the herceptin also can cause coughing.

Sending you both love and light
sarahlousie xx

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Hi 5n0wdr0p, we are both in the same place. I can`t sleep or eat and my mind is on another planet. My husband is trying to be positive for me but he broke down this morning which is unheard of, even when I had my initial diagnosis of BC he never let his true feelings show in front of me. Every time I close my eyes I see the X ray that the Resiratory Consultant showed me with the suspicious mark on my lung. Like you I had an awful time with chemo first time round and don`t know if I will cope again. The stupid thing is, I no longer have the cough which I went to the GP`s with in the first place and the breathlessness seems a bit better (I don`t think I would have gone to see GP with the symptoms as they are at the moment).
Lung nurse will phone me on Tuesday after MDT meeting but I don`t think she will be able to tell me much. I see the Consultant on the 4th April which will be 2 weeks after my CT scan.
I hope and mpray you have good results for your CT scan.
Pam

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Feeling extremely nervous, maybe that's why my heart feels like it keeps missing a beat. I am due to get the results of my ct scan which i've had to wait nearly two weeks for the results. My hubby to be is doing his best to keep my spirits up but its very hard. If results aren't good i know oncologist will start talking to me about chemo but as i was extremely ill the first time i undertake chemo back in 2000 i really don't want to go down that route, however i will be asking them about the cyberknife treatment. EVERYTHING is crossed for good results.

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Re: Lung mets - please join in

Bumping for Loulu

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Hi pam so sorry your finding it hard yes I had chemo max and rads with my prim dx then a yr after fin rads was dx with mets I've had 2 chemos now in a yr but I just want to say they have shrunk the mets I think went y dx it's a massive shock but when you get y treatment plan it helps you to feel like I'm gona get these buggers I never got to see my x ray as gp done it I've changed onc and now get treated at the Marsden I'm on oral chemo which at the moe is great no se or sickness no hairloss and I can live a norm life do housework go out which is great as like u I was so sick and ill on chemo but they are not all like then gd luck pm me if u wanna chat anytime tc Laura

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Well its 3.15am and mind still working overtime. Finally had some sleep last night after nearly 48 hours without a wink. Fell asleep on sofa trying to watch TV, OH had covered me with a duvet and left me there and looking at the time I must have had about 4 to 5 hours. Of course the minute I wake my mind is on lung mets. I now have the horrible waiting time until the MDT on Tuesday when the nurse will phone, I don`t expect her to tell me much apart from I will need a biopsy then it will be another wait. Had lots of people phone yesterday with their concern but find there are only some I can talk to without getting upset so OH is now taking all the calls. This b****y disease is driving me mad, thought I was going to be OK when it got to over 2 years since active treatment ended.
Thanks to all you lung met ladies for the support and BCC team for letting me know they are there to talk to, unfortunately at the moment I am finding talking about it difficult.
Pam

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Hi sarahlousie, thanks for your input. I have just got back from having CT scan, the first one ever and don`t know why I never had one before. They couldn`t get the needle in my arm and tried lots of places, I was ready to burst into tears as I am exhausted through no sleep and worry. Finally did the scan and I wouldn`t stop bleeding so had to spend an extra hour there. The Consultant actually had my x rays on screen yesterday and pointed it out to me so I had no way of avoiding looking.
So glad you are stable at the moment, I dread having to have chemo again as I was so ill when I had it originally, but your mets on the lungs have shrunk so I suppose I will have to take everything they offer. Yes the cough has gone but the breathlessness is really getting to me.
Pam

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Hi Pam,

So sorry too hear your having to deal with all this, I also have lung mets dx from the start with primary in march last year. Have done chemo, surgery, and finished rads in Jan this year, my last ct scan done in Oct last year showed that the multiple mets on my lungs had shrunk and were unchanged since the previous ct of june last year so classed as now stable (at least until next ct scan which will be soon hopefully).

I have been told that not all shadows on the lungs are cancer you could have some scarring on your lungs from the rads (as you have had previous BC treatment) or from an infection, I know its hard but by the sounds of it (you said your cough has gone) it may of just been a bad chest infection, please don't think the worst. I had a routine CT scan back in the beginning of being dx this showed multiple mets to both of my lungs :0( my onc did offer to show me the scans but I refused I really don't need that image in my mind. I've had a few blips ie: cough, breathlessness but that has all gone now and I am presently without symptoms long may it continue :0)

If you want to ask any other questions or just a chat please feel free to PM (private message me).

Lots of hugs
love and light
sarahlousie xxx

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Re: Lung mets - please join in

Dear Pam

I am sorry to read that you are having such a worrying time, our helpliners are here to lend an ear and can offer further support ideas on 0808 800 6000, the lines are open 9-5 weekdays and 9-2 Sat

Take care
Lucy

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Thanks for replying Laura64, had you previously gone through chemo etc. for your BC. Did they show you your x ray?
My mind is in overdrive at the moment and of course I`m looking on the black side.
Pam

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Aww pam wat a worry for you I've got lung mets I had a cough but a silly little one for a while saw my onc but sd no I was ok but my gp made me go for a x ray thank god he did they found a shadow on each lung then I had to have a ct which confirmed my fears lung mets in both lungs that was nearly a yr ago I've been on off chemo since then doing well and shrinking mets i do also know it can be for lots of other reasons chest inf bla bla gd luck lets hope it's nothing let us know how u get on love Laura

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Hi ladies, I have posted on the secondaries page, but now at 2am I have read through this thread and hoping for some support.
Diagnosed March 2009 and had lumpectomy, then mastectomy with node clearance. Went on to have chemo and radiotherapy and been on Arimadex since. Had a few problems along the way with suspected recurrence at mastectomy site which was clear, unfortunately wound burst open and 16 months down the line I still have a small open wound.
In January whilst on holiday in Tenerife I developed a cough and on returning home in Feb to -13 degrees I had a problemm getting my breath. Went to the GP a few days later as I was wheezy, she thought it was a virus and told me to go back in 2 weeks. I returned as I wasn`t much better and she sent me for a chest x ray, blood tests and spirometry. Bloods were ok and don`t know results of spirometry but the x ray showed a white mark on my right lung (BC was on the left). She arranged an urgent appointment with a Respiratory Consultant which I had today, I had another x ray and spirometry, the Consultant showed me both x rays which were the same and he is concerned about the white mark and told me it could be cancer, he has arranged a CT for tomorrow and will phone next Tuesday after they have had MDT meeting and I will have to have a broncoscopy quite urgently.
As you can imagine I am going out of my mind, my cough has gone by the way. How did you find out about lung mets? Did you see the x ray? The Consultant did say it might be something else but it didn`t seem convincing and from before I was diagnosed with BC I was told it might not be.
Pam

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I had a lung met diagnosed in Jan. Am on EC chemo and will have a further CT scan after 4th cycle. Feel well and no symptoms.

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hi,
i have lung mets dx five weeks ago, on herceptin and taxol.

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I have lymphangitus (sp) in lungs as well as liver & bone/lymphatic mets. I have had 8 paclitaxol and just have results of CT scan that is showing a significant improved with lungs. So another 4 paclitaxol to do and then I think the plan was to go on a hormone therapy. So just hoping this improvement is going to give me as much quality time as possible. As at the moment struggling with chemo.

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Hi Tina,
I've recently had four litres of fluid drained from a left pleural effusion & feel a hundred times better for it! If you want to PM me any questions I'll be happy to help.
Take care,
Penny

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Hello ladies
can I ask for some advice? I have widespread TN mets including troublesome nodes in pleura + early lung mets. My breathing has been wheezy for many months now despite nothing too drastic showing on scans til recently. Anyway, my breathing is deteriourating + it scaring me somewhat. I've just completed wbr for newly dx brain mets yet my lungs are my main concern. Had a bad night last night, chest feels a bit wet + the cough was relentless. Starting to worry about developing a pleural effusion or infection. Seeing onc on Tuesday + starting capecetabine then but wondering if any of you can recommend anything that helps settle your symptoms especially at night? I'm desperate for some decent rest especially after the fortnight I've just had + would appreciate any suggestion. I have oramorph at home + will try that tonight to see if it helps. I'm currently taking low dose Valium, zopiclone + co codamol before bed.
Many thanks
Tina x

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hi ladies,
i was dx with lungs mets three weeks ago having taxol every week + back on herceptin, i am feeling fine at the moment. original d was 2010 sept.
lorraine x

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Bump for lexxie

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bump

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hi i also was dx i sept 2010, had a few local reccurances ow four weeks ago was d with lungs mets on both lungs started o taxol three weeks ago every week, and also back on herceptin, ibc is waht i was dx with.

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I too have lung mets ( multiple small mets in both lungs). I was diagnosed in Sept 2010 as secondary from the start. Felt dire for about 2 months, but after the first then second scan started to fell more positive. I am being treated with letrozole too and every scan since diagnosis has shown a reduction in the mets.
I live life as normal ( with a niggly ever present in the back of my mind!) have been skiing 3 times this winter, walk miles with my puppy and have a busy social life. The drugs give me a few aches and pains but I can live with that.
Once treatment starts and you have a positive response things will be better.
BTW my initial scams were every 3 months but are now every 6 months. My onc said that there would little change in a 3 month period as the tablets work quite slowly, so bigger changes could be noted by scanning every 6 months.
You need a positive mental attitude (hard at times I know)

Good luck, Glo xx

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Hi ladies,

Just bumping up this thread for lexxie, would also like to ask the other ladies on here how often do you have CT scans with lung mets? cause I've only had 2 since dx last march and am anxious to have another ct scan to see how well the radiotherapy treatment has worked etc.

Love and hugs to all
sarahlousie xx

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Hi Lexxie,

I was diagnosed with lung mets in September 2009, I was beside myself, realy couldn't believe it and was very scared. I was put on letrozole, as I am ER positive, and so far all has remained stable, I had CT scan on Wednesday and will get results next Wednesday. We all know exactly how you are feeling but believe me once you speak to your oncologist today and get a treatment plan you will start to feel better. As you can see from all the posts on here we are all doing fineand getting on and enjoying our lives again.

Good luck today, and keep us informed, you will get lots of support from the wonderful ladies on here.

Love Marina x

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Hi Lexxie

I had my primary diagnosis in January and then after a CT scan in Feb was told that I had mets in both lungs. I posted about it elsewhere on the boards and the responses I had from Tillybob and Sarahlouise were fantastic - I hope you find them as heartening as I did.

As a result of my diagnosis my planned mx has been put off so I can start on chemo straight away. I had my first 'juicing' on Monday.

Of course I'm still very worried but have had fantastic support from this forum.

Hugs
D x

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Hi Lexxie, like Sarahlousie, I have had a good response to treatments, I was Dx in Feb last year with IBC and Lung mets to both Lungs(Multiple).
Currently I am almost NED , just one tiny met left too small to measure.It is easy for me to talk about this now but a year ago I was in bits, thought my life was about to end but I have come out of the dark tunnel and there is light at the end !!
We do know how you are feeling but if there is anything you want to ask or just need a hand to hold we are always here for you.
Jean

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Hi Lexxie,

So sorry you are going through this but you have found the right thread for help and support, I was also dx a year ago with both primary and secondary BC on both lungs, after chemo the primary lump shrunk from 6cm to 2mil and the mets on my lungs are now tiny and stable, I am currently on a combo of tamoxifen/herceptin which is keeping everything on my lungs under control or stable, you can live well with this dx, I know at the moment you are probably feeling terrible I remember the space where you are now and its terrifying, but there is hope and quite a lot of us lung ladies are doing well, if you want to pm (private message) please do any questions you want to ask me please ask away, any help at all just contact me.
sending you lots of hugs
love and light

sarahlouisexx

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Hello lexxie303

I'm sorry to hear that, may I suggest that talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information.
The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.

Best wishes
June, moderator

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Hi eveyone was told on Tuesday that my cancer has moced to my lungs. Have appoint with onc today. Terrified, don't know what to do with myself. Any help, anyone?

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Unfortunately I can now join your club..... diagnosed with lymphagitas (SP) of the lungs as well as bone and liver with lymphatics involved also - I don't do things by half...... 4 weeks ago. Had primary diagnosed mastectomy and the works (slashed/poisoned.burnt) eight years ago . Still getting my head around the poor prognosis. I've started paclitaxol 12 probably planned and zometa for bones. I asked oncologist today why lots of people seem to be on Xeloda and her reply was that could be next step...... Just had 5th chemo today and feeling increasingly fatigued....

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Thanks FranCescap29

It's good to hear positive stories, and thanks for the trial information, i have written it down. The reason my onc was so blunt is because I have inflammatory breast cancer, with no response tonFEC-T, so her theory is most chemos are unlikely to work in her ibc experience. However, she is looking at trials, and if my Avastin application is turned down she has another inhibitor in early trial stage she will try and get me on.

Started on the Xeloda now and been throwing up magnificently, so husband off to GP to get stronger anti-emetics. My onc also suggested it was time to look at doing memory boxes for the kids as there is nothing more tragic than being hospitalized and not have time to do them..... I know she is trying to be pragmatic, but a bit scary!

I am really hoping this or one of the next 3 chemos she has outlined for after this will do the trick.

Thanks to everyone for their support, i've learned a lot by reading all your posts.
Sue x