Lung mets - please join in

[dennymac]

Thanks Nicky I appreciate it, I've had a look and it seems people have had a good result with perjeta which makes it harder for me cause means il have my treatment away from my family xx

[nicky08]

Hi dennymac

You mentioned a couple of posts down this page that you are starting Taxotere, Perjeta and Herceptin in a few days.  Although I don't have lung mets I do have bone and liver mets and have recently finished the chemo side of this treatment.  There is a thread on here called 'Pertuzamab' if you want to look at that for more info and experiences of other ladies who have had this combination.  Sorry I can't help with any lung mets queries and I hope this treatment works well for you.

Again, sorry I can't help with your query Bev.  As Porkie has ssaid maybe mention it to your team?  Could it be something to do with the steroids as they're only given at the beginning of each cycle although you probably weren't having any whilst on Capecitabine.

Take care

Nicky x

[Porkie]

Hi Bev I havent got lung mets although I do have some pleural fluid apparently. When I had docetaxol last year I had some episodes similar to you but this stopped when chemo stopped and I have not had any other adverse effects. I would mention it to my oncology team when you go if I were you unless you find it gets worse then perhaps worth a phone call. Hope you are feeling better today.xx

[Bevlaar]

Does anyone  with  lung mets get this at all?

For the week following  each chemo  I've  had since july ....Capecitabine, docetaxol and now with carboplatin. ...my breathing gets noisy for the week again..and...i wake up during the night to cough because I  can  feel something  rising  in my throat. I sit up to cough it out but most times it just slips back  down (sorry!)  But if i am successful in spitting it into a tissue its a small piece of brownish red sinew that comes up....only about half an inch to an inch of it but it worries me, as it only happens the week after ive had chemo. 

By the end of the first week the breathing gets back to normal and the coughing stops at night.

Hope you can help .....bev xxxxxxx

[Bevlaar]

On my tablet. Clicked  your icon  alongside here but cant get to see profile page then. Just list of your tags a nd threads. Will keep trying xxx

[sarahlousie]

Whoops on new smart phone can't post link try looking at my bio click ony name xxxx

[sarahlousie]

Hi Bev sounds like your doing all the right things and make sure your bloods are good for Chemo here's a link to blog site see side bar for nutrition and complementary stuff

[Bevlaar]

I juice, take manuka honey especially the week before my chemo and while on chemo i eat foods high in iron and vitamins to boost immune system.. Last night i had liver onions broccoli and sprouts and small amount of mash.
How do i see your blog page Sarah? xxx

[sarahlousie]

Hi ladies, so glad I shared my story with you I know what a harrowing time it is when first DX and wanted to share some hope. Bev - Its hard to stay positive when your going through such trauma like I said before you have to throw everything at this including unconventional I jped on the computer and kept researching for the first 2 yes as well as Chemo I also juice take supplements go for spiritual healing its all on my blog link on my profile page. Believe something WILL work you will find the right combination. Xxxx

[dennymac]

Fingers crossed bev U find the treatment that kicks the ass of this cancer! Xxx

[Bevlaar]

Hi sarahlouise.

So encouraged by  your  story  and wanted to say how thrilled i am for you to have had such success with your  treatment.  Im desperate  for good results myself, i started Capecitabine  in july for 2 large lung mets 5cm and 2 cm in right lung,  following primary 2005 TNBC then new primary same spot 2009 weakly pos. had chemo and rads first time then just tamoxifen  after 2nd.  

Dx may last year with the lung mets.

Sadly i had progression  after 3 capecetabine...of 20-30% of original mets so Cape  stopped and started docetaxol  end nov. CT scan 2 weeks ago also showed docetaxol  not working  as there is now spread into other lung....onc said lots of small tumors between 1mm and 10mm. Also few more enlarged  lymph nodes  that werent there before! Although the 2 original  mets  have not changed since last scan.

I feel desolate that I'm  now having  to start a third chemo....carboplatin  but with letrozole. Had my first in friday and feeling quite  ropey today.

Im worried that I'm going  through my  options  too fast. Its frightening. 

Im amazed how  good your results are and hope and pray i eventually get to that. 

If you have any advice it would be  welcome!!

Love and hugs to you .....bev xxxx  😊

[dennymac]

Thanks sarahlousie your story is amazing I hope I have the success you've had 🙂 xx

[dennymac]

Thanks lemon nice to hear from you! This time has been so long, it's only a few weeks and my life has changed so much!!

[sarahlousie]

Hi D you've found the right thread for your DX and I'm sorry you've had too join our club. I hope you gain some hope from my story. 4 years ago I was DX with both primary and secondary BC all within 2 weeks I had multiple mets to both lungs I did Chemo then surgery and finally radio therapy ever since then I am on herceptin, tamoxifen and , arimidex my last scan was in Nov and the mets to both lungs have completely disappeared I have something suspect ony liver but that is stable and has been for a long time. The drugs do work I also take complementary and alternatives (if you are interested please go to.my blog site for info) see on my profile page. The chemo your about to start are very effective they reduced my primary from 6.5cm to. 2 mil. If you ever want a private chat just message me remember we are all here to help understand and support you. Love and light to you xxxx

[LemonDrizzle]

I bet you are! We've all felt like that so it's very normal. I had the same treatment plan but with Zometa for the bones added and there's a few other ladies on here going through the same. It's an awful stressful time, but you honestly will begin to feel better when treatment starts. I still can't believe I can write that as, this time last year, I was just about to go to the doctor and begin this nightmare roller coaster and never thought I'd get my head round it all. Good luck and let us know how you get on. I'm sure I've replied to you on another thread so I hope I've not repeated myself!
LD x

[dennymac]

Hey everyone 🙂

This thread seems to have got quite quiet so thought I'd try and give it a boost! There's not a lot of lung mets threads on here so thought I'd introduce myself. I was diagnosed in the first week of Jan this year with grade 3 bc, had a bone scan and CT and this dx was changed to grade 4 bc with a couple of small lung mets and possibly a spine met (which is inconclusive as could just be degeneration as bone scan clear). I'm 32 and this has come as a massive shock and just wanted to chat to people going through the same. I am moderately ER+ and PR+ as well as HER2+ which I suppose is good as they have more drugs to throw at it. Due to start chemo in 9 days (tax, herceptin and perjeta) and need a follow up CT in 3 cycles to see if it's working.

Crapping myself! D xx

[carolsav]

Well that def sounnds promising for you. Hope u feel a little better now you have some answers. X

[funnyface]

Helen, I do feel better with a new POA.  Hoping gemcitabine does the trick. Funnyface

[2catlady]

Glad you got some answers funny face. Hopefully that's put your mind at rest .
Huge hugs ,Helen xxxxxx

[funnyface]

Home from drs. Well we had a lovely chat. Talked to him about whether or not he though the cancer was in the lung lymphatic system. He said it could be but might be new, said it was "differential". Not sure what that was supposed to mean. He did say that can be a cause. Then we talked about treatment options. He said he wasn't sure that increasing the xeloda would do much and leaned towards changing treatment. I agreed it was time to try something else so good-bye xeloda hello gem..whatever it is called. I did ask him if it was in the lungs lymphatic system since my cancer is slow growing could I live longer than the poor prognosis I've been reading. He said he thinks I will be here a long time. I said more than a year and he said yes..as long as nothing unusual happened. Thanks for all the well wishes! Funnyface

[2catlady]

Good,luck today funny face xxxxx

[carolsav]

Hi funnyface. Gd luck today at the hospital. I have never heard about ground glass either. Pls let us know how you get on.
Carol x

[2catlady]

Hi,funny face,so sorry your scared. I don't know anything about what the ground glass is. My tumours in lungs are many all over. So I can't really offer any advice . If your onc isn't concerned it mightn't be what this person has told you.
You need to ask on Wednesday as the worry will eat you up I know it's hard but at least you will know what's what then.
Massive hugs coming your way and good luck on Wednesday ,Helen xxxxxxxxx

[funnyface]

Hello ladies, I'm freaking out. I got a phone report from my oncologist about my CT. It shows the tumors are the same, but the ground glass opacity has increased. I talked to someone who is very well versed in breast cancer and she told me that ground glass opacity can come from pulmonary lymphoganitic spread. My oncologist had said he still wasn't convinced that the ground glass was from the cancer. I have an appointment Wed. morning and I'm scared to death to go and ask questions. Funnyface

[Barton]

Hello, Helen. Barton from Cap thread here. Sorry to butt in on Lung thread, hope you all don't mind! Just thought I would add to your comment on breathlessness on Cap. I too am very breathless on Cap. I was breathless on Anastrazole (the hormone therapy tablets), and was glad to come off them for that reason, although not for the Secondary diagnosis reason! I have become extremely breathless on Cap.and can only walk very slowly. Not sure that I've noticed feeling better on week off, though. Will have to think about that as I have just started cycle 5 week off.  Barton.x

[2catlady]

Hi,Hilsy,yes,you may be chesty as antibiotics kick in and loosen everything up. Hope you are back to normal soon. My breathlessness is definitely getting worse,but hubby said I he's noticed I'm worse while on cap! and better on week off ,go figure
Huge hugs,Helen xxxxx

[Bevlaar]

Hilsy...my cough and breathlessness is worse too when I'm talking or moving around. This is probably why i dont wake up during night coughing. I sleep all night usually and the coughing only starts again when i get up!
Love bev xxx

[Hilsy]

Hi Helen! Still a bit chesty but it seems to flare up the more I do or talk which is a great excuse for me to sit down and shut up! How's you doing and your chestyness? I've been on the anti b's 2 days too so it may clear a bit soon. It's not bothering me too much it's that kinda well done chesty feeling you get donuts prob all the other stuff I have going on! Bloody c word!!! X

[2catlady]

Hi,Hilsy,how are you doing? Have antibiotics helped?

Bev,glad to hear antibiotics are helping. I don't blame hubby telling. You to rest !!!! Never mind about work ,have the rest of week off,do I have to put angry eyes back on!!!! Your body needs rest.
Take care lovely ladies,huge hugs,Helen xxxxxxxxxxx

[Hilsy]

It's awful hey, so reassuring that others have similar experiences and can share but it does devastate that we all have to deal with this at the same time. And I find it hard for loved ones to watch the deterioration too when they're used to you being fun and spiritely, like you say...like a party! My party now Is steroids and cake mostly!!! Lol x

[Bevlaar]

Hilsy...I'm (a young!) 57 dx with primary at 48 then another new primary at 52. Yes it certainly zaps your energy!
I was very active and fit...swimming and walking weekly. Never smoked and only drink occasional glass of wine (although in my 20s and 30s drank a fair bit more...liked to party!)
Its so cruel and unfair isnt it?
You probably suffer with the fatigue like me.
Love and hugz... bev xxxxx

[Hilsy]

Great to hear and reassuring re blood though still horrid! How okd are you may I ask? I'm 35 and feel like I'm 90! X

[carolsav]

Gd to hear u r feeling better. Take care and dont do too much too soon.
Carol x

[Bevlaar]

Hi...pleased to say feeling a lot better now that the antibiotics have kicked in! The cough is improving and although still raspy (and sounds like I'm on 40 a day!!) I'm coughing less. Onc and registrar i saw seem to think the blood in saliva is purely down to the severe coughing fits that i was having at the time and caused by the trauma and strain. It hasnt happened since the weekend. Missed work yesterday. ..ordered to rest by hubby! But will go in tomorrow.
Hope everyone else is ok xxxxxx

[Hilsy]

Bless you both thsnks, doc said chest sounds pretty good and prescdibed anti b as precaution ooooh I love the idea of it being the cap zapping the buggers Helen!!! Blimey bev how you doing now, coughing up blood etc you poor love that sounds scary.i really hope you're soon feeling much better x

[Bevlaar]

Hi hilsy. Ive had a bad wheezy raspy cough for a week and increased breathlessness. Also been coughing up saliva and blood for 3 days with the coughing. Was very worried but had chest xray today and theyre sure its an infection and said a lot of ladies are suffering at the mo...and virus will be worse because of the lung mets. Given me antibiotics. See if you can get gp to listen to your chest.
Love bev xxxx

[2catlady]

Hi,Hilsy,I'm not sure,I feel a little tight chested with mine but nothing like yours. It could be a chest infection so please get it checked out or it could be the cap zapping the squatters .
Huge hugs,Helen xxxx

[Hilsy]

Hi all! Brief question....can lung mets feel like chest infection?... I have lung mets among others and on 3rd round of capecitebine so still don't know of it's working. last couple of days I've found after talking quite a bit my voice is practically gone and chest burny and feels like chest infection but don't know if this could just be cancer or infection if that makes sense. Thanks hope you're all ok x

[Steris]

Hi Dani,

I've beem on eribulin since June and have found it pretty tough on the fatigue side and also it has depleted ,y white blood count. The oncologist has prescribed FSG injection to boost my white blood count. This has so far been effective as before I was on the way to having neutropenia which is the last thing I wanted.

It seems to be keeping everything stable at present and the fluid was starting to re accumulate. I due to have a scan on the 27th September so fingers crossed it still keeping the uggers at bay.

Have you decided which treatment you are going to have? If I can be of an help just let me know.

Hope everyone is doing as well as possible.
Love
Chris xx

[DaniGirl]

Hi Nicky

I have a good think about it all and the arrows all point to IV chemo which makes me wonder why it wasn't given when I was originally diagnosed with secondary in lung in the first place?  Anyway I can't think about the past I have to be in the now and do what I think is best for me.  I hated IV chemo the first time around back in 2012 but I did manage a regime of 3 x Fec and 3 x Tax.  As the progression is in my sternum and pelvic joints I will have to have a bone injection too.  Oh and the wonderful steroids.

Thank you ladies for you being there.

Love and light

Dani XXXX

[nicky08]

Hi Dani

Sorry to hear about your stay in hospital - never a good place to be for a long time is it? Even though they do a fab job, you just want to get out! I dont usually post on the lung mets thread but I also saw a copy of this post on another thread so thought I'd add my experience.

I had FEC chemo (iv) 6 years ago and then went onto hormonal treatment which kept my bone mets stable for nearly 5 years.  I then had progression and went onto Capectitabine. After being on this for 18 months I then had further progression and have now gone onto another iv chemo (docetaxol/Taxotere). I found Capecitabine was very doable, once I got settled with it as, at first, I really felt quite rough on it, and it doesn't 'interfere' with your life quite as much as the side effects of the iv chemo does.  It did shrink my liver mets but quite slowly, presumably as they are slow growing as the post on the Liver mets thread described.  I have found the iv chemo harsher, especially the first dose, but the second one has been much easier to handle - or the side effects have!  Plus the Prof I saw at the Marsden (for a second opinion regarding treatment) felt that my liver mets would be 'ablated' in his words - something I don't think Capecitabine would have achieved (for me anyway). So, having had both oral and iv chemo, I feel the iv chemo is the best chance of reducing my liver mets to the smallest they've ever been to give me longer without having chemo again. Having iv chemo definitely isn't easy but I am still finding it doable.  I hope you find the same if you go down that route and that you get some good results for your lung mets.

Nicky x

[Bevlaar]

Hi dani....hope youre getting plenty of rest now youre home...it takes time to get over these procedures. As for the chemo options,  not sure if I'm in a position to advise but it may be something that will be relevant to me in time as I've been on Cape now since july as a first line treatment.  I'm hoping that it will work for a long time as I'm dreading going down the I.v. road too. 

Ive h

eard too that vinorelbine is another oral option but hadnt heard about its effectiveness,  I suppose if my onc advised me to start on I.v. then I would probably take his guidance on that especially if there was progression. Difficult though.

Also think hard about non conventional treatments at this stage....could possibly hinder your treatment.

Sending you love and hugz .....bev xxx

[DaniGirl]

Hi there

I am back home after a 2 week NHS hospital stay with a return of pleural effusion and feeling overwhelmed with anxiety and concern regarding my onc appointment.  I spoke with her today before leaving hospital and she has advised that I should try Eribulin which is IV chemo.  Something I swore i would never go through again.  She said there is the option to go  back on oral chemo (previously on Cape but stopped working) called Vinorelbine which has less toxicity but less effectiveness that studies have shown.  She said to hurry with the decision and not to wait longer than 2 weeks to decide.  She also pushed for me to try the IV chemo over the oral one as they have just received funding for this and she wanted me to try it.  I asked about trials etc. but nothing doing.  Hormone treatment alone is something she doesn't feel would help.

I feel bewildered by it all as never expected for the Cape to stop working after a few months.  Progression is now in sternum and sacroilliac.  I don't have any confidence in the chemotherapy option at all and wondered if anyone feels the same way?

I'm Her2 neg and est pos.

I do have non conventional option to try but is not ready yet.

Love and light

Dani

[funnyface]

Lulu, I'm sorry you are having a difficult time. I hope they can get you more comfy soon and out of pain. Hugs! Funnhface

[funnyface]

Chocolates sorry just found your post. I typed to you last night and it's not here. I'm trying to keep busy with planning a big party to celebrate my 60th plus plans for a vacation. I live in the USA in Pennsylvania near Philadelphia. Hubby I are driving across country to Albuquerque, New Mexico for a big balloon festival. We both need to visit 3 states to have visited all 48 continental states. I'm anxious to get answers about my lungs but don't want them before vacation. I don't want to make any changes til I return. Thanks for responding.

[2catlady]

Oh lovely lulu,fantastic to hear from you xxxxx
You have really been through the wringer,poor you. I just want to give you a massive hug.
I'm so glad you have started painting again and managed to get to your friends 40th.i will have given you a boost.
Have a lovely lunch at work.
Sending you massive hugs lovely lady,you stay strong ready for next round in this fight. All my love ,Helen xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[Bevlaar]

Welcome back lulu!  Good to have your post  but sorry youve had such a rough time of it..this disease is bad enough without all the little extras that come with it eh?

Hope they get those lung mets under control and shrink the little uggers into oblivion!  Do they know why they're still growing after rads?

Dont worry about posting here regularly....you have enough to contend with.  Just get plenty of rest and enjoy that painting!!

Big hug for you ♥♥♥♥

Love bev xxxx

[Lulu34]

Just a wee update from me before I have my 2nd cycle of carboplatin on Thursday.

Apologies for the radio silence... Also i haven't read all your posts so will have to do some catching up.... However i do hope you are all doing ok... I know a few of you have joined us on the dark side on facebook but I've not been on there much either.

Anyway back to my update.... I was at the diabetes clinic on wed and was seeing my Onc on fri.

The diabetes doc is quite happy with me but has increased my insulin as I have blurred vision and she thinks this may help.... Although it could be down to the steroids or the diabetes or the brain mets.

My Onc has clarified some of the results from my last CT scan which I was querying. I have a nodule in the right pleura which is def cancer, I have a suspicious nodule in left pleura which could be cancer and fluid build up in right pleural space which may or may not be cancer.

And my original tumour is still progressing in the upper right lobe, which is now 7.9cm down from 8.2cm but has grown quite a bit since i had my lung rads when it shrunk to 5.8cm.

The good news is I don't have a chest infection and my bloods are good but I have low protein and low vit D.

I still have a bit pain and I'm taking morphine 30mg twice a day and it's really helping.

I do still cough up blood quite a lot and I'm taking oromorph as cough suppressant more than for breakthrough pain. But obv helps with pain too esp as coughing is painful.

I'm getting a brain, chest and abdo CT in 4 weeks and seeing Onc for results on 19th sept.

I also started painting again and done my first pic in about 3 years! It was for my lovely friend's 40th birthday and I even managed along to her birthday BBQ yesterday for a couple of hours too.

Im also going into work tomorrow for lunch so having a resting today.

Especially as i have swollen and which get worse when I'm on my feet. So my Onc upped my water tablets too but still waiting for them to kick in.

Love and hugs to you all.
💛💚💙💜💗❤️

[roxy12]

Hi, I would like to pass on my good wishes too. Hope she is soon feeling much better. Xx

[Desi-2]

Hi Bev she responded to one of my posts on Facebook just this morning. I will pop back on and pass on your good wishes xx