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Lung mets - please join in

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Re: Lung mets - please join in

Oh...so pleased and relieved to hear she's ok, if you speak to her again please send her my love and a huge cyberhug!

Bev xxxxx

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Hi,bev,I talked to lulu not long ago. Our lovely lulu has had a rough time with five weeks in hospital.
She knows all our prays and love are with her and she'll hopefully be posting again soon.
She's a wonderful lady who is so strong and an inspiration to all of us.
Xxxxxxx
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Please...has anyone heard how lulu is since she came out of hospital a few weeks ago? She hasnt posted since before she was admitted and I've pm'd her to ask how she is weeks ago but had no reply.
I hope and pray all's ok 💖
Bev xxxx
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Your not being dim at all! Hopefully he should be able to give you some answers as these are valid questions.
Charlotte xxx

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Will have to ask him again...I'm not too sure how this treatment all works? I don't want to stop the cape to have hormones but I thought that when you became stable they would stop the chemo and put you on hormone therapy to stop progression?
If I cant have hormone therapy then what do they give you instead??
Am I just being a bit dim here?
Bev xxxx
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Bev

Glad u feeling better I often have bad days and so difficult to pin it down to what it is as there are so many side effects and sometimes I feel like my body just needs a rest!

I'm not sure why your oncologist wouldn't put you on hormone treatment and really think you should raise this with him to get his reasons and he also may change his mind if you discuss your thoughts with him. It could be that because you on chemo that he thinks that is going to be much more effective so doesn't want to introduce another drug.

It's a tricky one as my onc too doesn't think my letrozole is doing much with me being 4/8 and I tend to agree with him but I have had aggressive growth when my oestrogen levels has been high so it must be doing a little bit surely!?????

Charlotte xxxx

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Hi helen & charlotte... feeling much better today and no effects from both doses of cape today! Hosp says it wasn't likely to be from the chemo...probably a lot to do with the heat and fatigue due to the fact I'd done a long day in work, so good news really. 

 

Do you think my Onc said that hormones wouldn't benefit me as he possibly thinks my prognosis isnt very good??  I still cant get my head around why he said that when my positivity was 3/8.

 

helen...you always make me smile referring to your hosp! Carry on team...haha!

Love & hugs

bev xxxxxx

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Hi, bev,yes,I read the same thing 3/8 is 38%! And some onc say that's still positive! And being under 10% is negative!
Yes,the Faslidex is for ER I think and so is the EE combo. I thought I'd still have them to try too:( I'm praying I'll get years out on cape. Before the big guns chemo.
I'm at North Tyneside General Rake lane or AKA mistake lane !
I have to laugh at my hospital or I would just cry! I'm sure it's run by the carry on team lol.
Huge hugs,Helen xxxxxx
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Hi Bev

Hope you feeling a bit better now it's so hard when we are anxious about treatment and feeling rubbish at same time! Sorry I don't know anything about falsosdex but i would chat to your oncologist again about whether it's worthwhile being on something. Please try not to worry about statistics I just live by the fact that no one really knows and will just see what happens and taking this approach does get easier with time honestly!!

Charlotte

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Hi helen..its strange this ER thing. Ive been looking on the net today and nearly all the oncology sites say 0-2 is negative. 3-8 is pos. I had been hoping for something like the Faslidex injection...or is that for her2 cancer? Ive heard great things about it. Hate to think I'll be stuck on just chemo for the rest of my days 😞

Can I ask by the way what hospital youre under? I know its serious but I cant help smiling at your posts regarding your hosp...it beggars belief doesnt it??

Love bev xxx 

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Hi,bev,I totally understand what you mean. My BC went from 8/8 ER grade two to hardly ER+ and grade 3. It knocked me for six as I thought I had a lot more options available .
Chemo is now my only treatments which I'll start in October.
Lol ,yes,I've got the worst hospital in country. Nurse on onc ward said to me I don't know why we have this reputation at that point I burst out laughing ! Then she went to find some results which hadn't been done. I said you were saying!!!!
Huge hugs,Helen xxxxxxx

Chocolate,sometimes going in when the kids have broken up is great as you can get soooo much done.
Don't work too hard,huge hugs,Helen xxxxxx
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Oh thanks chocolates.  Im just a bit down because the onc said a positivity score of 3/8 meant hormone therapy wouldn't benefit me, I thought a 3 was positive?

I do feel much more positive talking on here...and yes Helen must be under the hospital from hell...but she still keeps upbeat haha!

have a good day at work. Im in today too although im going in a bit later this morning due to me having awful flu like symptoms after my Cape last night...felt realky rough.

love to all...bev xxxx

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Bev, you rant away. That's what we're all here for. However those long term survival rates are based on figures which are a good few years out of date so try not to base too much around these. New treatments, and approaches to treatments are happening all the time. I know it's frightening looking at stats but look at them with caution. I think it's much better to use people on here and their current experiences and then challenge oncs when you feel you're not perhaps getting the most up to date thinking. That's why this forum is a god send. Apart from our lovely Helen of course who seems to be at the worst hospital ever.

I'm off to work this morning even though we've broken up for summer - lots to do. Have a good day everyone and huge hugs to everyone. Let us know results etc when you can xx
Hxx
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Thanks Charlotte, youre certainly on a good mix of drugs there! Thats got to be knovking the little blighters into oblivion!

There does seem to be a wide variety of new drugs available for bone mets all the time and they clearly seem to be very effective.  Hope you continue to do well.

my onc has said its prob only going to be chemo for me because of the "weakly positive" thing and thats what worries me.

I read that the longer term survivors of breast mets are those that have bone mets rather than in an organ, show some oestrogen positivity and have not been told to stop previous hormone therapy like tamoxifen as it stopped working.

Well mine are lung, only weakly pos (my original ptimary 9 yrs ago was TNBC) and they took me off tamoxifen 2 mths ago! 

So that frightened me a bit.

Sorry for the rant!

Love & hugs

bev xxx

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Hi Bev

I was diagnosed with bone secondaries in Nov 2010. I am 4/8 oestrogen positive and I am on letrozole. My oncologist always tells me that he doesn't think that my hormone therapy is doing that much to control the cancer but he does have me on it as the side effects don't seem to be too toxic and surely it must be doing a little bit! He puts much more emphasis on my other drugs which are desonsmab zoladex herceptin and perjeta.

Plus I was diagnosed whilst pregnant and it grew so quickly due to all the oestrogen floating about!!!

Hope this helps!

Charlotte

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Hi ladies...hoping some of you can help out here!

Saw Onc yesterday after first 3 wks of 3 cycles of Capecetabine. He had said initially before treatment started that I was weakly positive like my second primary in 2009 (primary in 2005 was triple neg), and that my treatment would most likely be chemo and hormone therapy. 

Yesterday he said he didnt think hormone therapy would benefit me and when I asked what my ER score was he said it was 4/8 at last primary and now was 3/8.

Well...from what I've read a score of 3 is still weakly positive isnt it?

I just feel a bit let down because it seems that the ladies doing better for longer are on some sort of hormone therapy. 

What are your views? Has anyone else had this score? 

Love...a confused bev xxxx

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Hi Funnyface - sorry to hear your current news but I agree with you - there are still other options. I take huge confidence from your 9 years so far and know that you'll have many more to come. I'm sorry - I have no experience with ground glass opacity so can't help you. I think it was a bit unfair of your onc to say you've lived a charmed life - I wouldn't say anyone with sbc was charmed but as he did say - loads more treatments available and in those 9 years treatments have improved so much. Fingers crossed for your next treatment plan and I hope someone on here comes along soon to help you.

Huge hugs,
Hxx
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Hello..I haven't posted on here in years! I have mets to lungs and chest lymph nodes. My mets were dx in Nov 2005. Today I saw my onc and he said my right lung was stable, this is my worse lung but that my left lung had a new area but he is not sure it is from the cancer. It is ground glass opacity in the left lung upper lobe. He has put me on steroids and will scan again in Oct. If there is no change or worse most likely will be a chemo change for me. I'm bummed because I have been enjoying the last 2 years on xeloda. I felt like a person again not having to go for all the infusions. He did say I have had a charmed ride so far, but there was still a lot of options. That left me with mixed feelings. The charmed ride part left me feeling like he thought the ride was ending..but then he added that I still had options. In this almost 9 year ride I have had abraxane and avastin combo, he stopped it bc it was harsh on me. I can use it again bc it was still working. Then I went to vinorelbine (navelbine) for 5 years. It stopped working and my right lung collapsed. I did radiation and my lung reinflated on its own. Does anyone know if they can radiate ground glass oapacity or if chemo works on it? Thanks Funny Face

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Hi gigli, I was diagnosed when my hip spontaneously fractured. Had a really good replacement and was walking unaided a few weeks later. Since 2008 I have had mets to ovaries, part of the bowel, (although the CT is confused, it could just be the ovary) and I have some nodes to my lungs along with various bone mets. After my last chemo I developed heart failure this Spring so have had ups and downs but just a few months on from this I feel great again....so things can change but then change again. 🙂
Good Luck. X
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Belinda - I'm glad you are doing so well.   I am HER- as well.  Were you diagnosed it to the lungs 11 years ago or has it spead there over a time?  You have really cheered me up.  XX

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Belinda...really glad you "butted in" lol! 11 and half years is amazing! Here's to the next 11 ♡♡
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Just thought to add to my post below re her2- er+ ladies. I had Arimidex 2005-2008 at which point it stopped working. I was re introduced to it last October after a five year break and it kicked in for a second time and at time of writing this it is still working. You can have post menopausal hormonals if like me, pre-meno the first time around, you have an injection to halt your periods.
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I'm not her2+ and have been living with mets, from the start, for eleven and a half years.
Sorry for butting in on the thread but just thought I'd let you know. X
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Hi,bev,that's a good idea. I wish we got more written information when we are diagnosed . I got double whammy diagnosis of primary and mets and absolutely no information. I didn't even know what mets were or what SBC was.
I know we all do it ,but it can be very soul destroying looking on internet. I find this site invaluable as it's "real" people going through the same as you and sometimes are a heck of a lot more knowledgeable on side effects than the oncs! and full of advice and support.They also know how you feel. And won't tell you like my nurse on onc ward that I should be used to it by now as I'd been coming for 10 months ! Not helpful!!
Huge hugs,Helen xxxxx
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Thanks very much Pam...thats really helpful info ♡
Why cant they give us leaflets at the time we start our chemo with exactly that information on lol! I think at the time of our 1st visit we are focusing so much on what the Onc is saying about our dx, and side effects of chemo we don't think to ask the "deeper" questions. If youre like me you just trawl the Internet days later when you're on your own with nothing better to do at the time, googling all these afterthoughts! Hmmm..not always a good idea 😕
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Hi Bev..I recall asking the question regarding throwing different forms of treastment at the cancer at the same time early on in my treatment. He said that the current thinking was that it wasnt helpful because chemotherapy works on dividing cells...and so long as its working....the faster they are dividing (ie the more different they are from ordinary cells ) the more effective the treatment is.....If yyou are taking hormone treatment at the same time it may slow down the rate the cells are dividing and thus make the chemo less effective.....and also reduce treatment options cos the hormone isnt available as a possible future treatment. This is different from EE from example because both these drugs work on different stages in cell division and so (theoretically at least) dont interfere with each other.xx

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Yes youre right Helen about it being a sneaky bugger! Ive been worried that my mets wont respond because of the size. I only have 2 but 5cm and 2.5cm on edge of lung pressing on windpipe and my onc said they arent presenting typically of breast mets in the lung...he said mine are imitating lung cancer. He said its as if its disguising itself as something else!! How sneaky is that?
I've read something like that before..its bizarre.
Mine changed status too. Primary 2005 was TN and second primary 2009 was weakly pos. Now this one is only weakly pos so he said hormone therapy unlikely to benefit me.
Would they not put me on an AI being post menopausal? Think I may have to ask this on tuesday.
Good luck to you all...hope everyone is having a lovely weekend ♡♡♡
Bev xx
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Hi,bev,nobody knows how long anyone will survive regardless of there cancer status.
there are not a lot of treatments for HER a targeted treatment and chemo,lots of hormone treatments for ER and chemos,and basically only chemo for triple negative( triple negative is it has no ER or Her receptors )
I was ER but my cancer has changed to basically triple neg in less than a year. Also different grades of cancer some people has slow growing cancers,some have fast growing. Again mine changed to an aggresive grade. So we go with the flow and pray something will turn up and NICE won't stop us getting it.
Everyone is different and so are all our cancers,they all behave differently ,they all react to treatments differently and you can't really compare to someone else. Cancer is a sneaky bugger and oncs are always trying to keep us one step ahead of it.
Hope this sort of helps,huge hugs,Helen xxxx
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Hope they sort it out for you bc-lass. Re the treatments...I may be wrong but does it seem that the people responding better and surviving long term tend to be Her2+ ? Are there more options for her2 disease?
I dont want to seem negative at all but it was just something I was wondering about. Im really pleased to see so many her2 ladies doing so well here and hope others will do equally well and I just hope they find something that will zap this disease indefinitely for all of us!
We all deserve a breakthrough thats for sure!
Bev ♥♥♥
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Hope so Bev. Mine stopped after I started taking tamoxifen but has reappeared again another with another breast lump 😞 onc organising scans to see what's going on.maybe time for new treatment....
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Yes my cough seems to be worse when pollen count high. Last sun and mon I coughed all day and it was starting to worry me. Im coming to the end of my first 2 weeks on cape on tues and yesterday and today ive noticed cough has almost disappeared so hoping this is a good sign that Cape is starting to work xxx
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Any lung met ladies suffer more with wheeziness/cough when pollen count high? What do you take?
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Hi girls

 

Not much to report other than happy to say cancer markers have lowered considerably and it will be my week off Cape from Monday. 

 

My onc said I'd be on Cape for the foreseeable unless the cancer disappears?  I'm ER+ however no hormone treatment until finished with Cape...

 

Can someone tell me if cancer in the pleura is dramatically different to actual tumours?  Am a little confused and the more I google the more scary it is! I know a couple of ladies have same type ie. having had pleural effusion and malignant cells found.  I do know that surgery on other breast isn't even considered as oncologist looking at secondary cancer and how it  behaves.

 

It's cloudy but warm in Solihull and my partner is researching hotels for our road trip to Italy! 

 

Do hope everyone is well and having a fabulous weekend.

 

Love and light to all

Dani XX

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Chocolates!

Wonderful news and just shows all your positivity is working.

Lots of love and light
Dani XX

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Chocolates, that is fantastic!! You must celebrate!😁😁 love Sheila xx

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Excellent news chocolates really pleased for you xx
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Excelllent news Chocolates,,,hope you are celebrating!....Bev please dont worry as yet as to the effectiveness or otherwise of capecitabine....in each cycle I think the maximal levels are reached at the end of each cycle and for the few days after stopping...so the cape is probably still building up rather than being at a treatment level. xx

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Oh,chocolate ,WOW! Fantastic news.
Huge hugs to you,I'm so pleased for you,Helen xxxxxxxxxx
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I'm so pleased for you Chocolates! Thats the best news. Go and celebrate big time lol!
I'm hoping my results will be as positive when I go for my first ct scan. I'm feeling a bit apprehensive. I know I've only been on Cape for a week but my cough has got worse since Sunday.
Good luck to everyone waiting for results xxxx
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Hi ladies - good news my scan results really positive. That starry sky is disappearing rapidly. Feel like a new woman tonight. Celebrate the good news. Much love to you all xxx
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We had booked the Hotel Sirene in Malcesine at Lake Garda...was a really good price with Thomson xxx
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Hi Bev

It's a good feeling definitely. I'm sure you will get same news after your scan. My scan has been cancelled until another time as blood test came back with good results.

Doing research on hotels to stay at in Italy which I love doing! I'm sure you will have plenty of holidays to come Bev.

Love and light
Dani XX

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dani...great news on monday for you. it must be a lovely feeling when ur told that! hope i get the same news after my first scan.
Your holiday sounds fab! Just after i had this dx I cancelled my hol to Lake Garda in sept as i thought i would be on chemo like on my primary 10 yrs ago (FEC). I had also arranged a trip to venice while i was there.
I wish i hadnt cancelled now but never mind theres always next year!
But cant wait to hear about your trip when u come back!!
love bev xxx
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Dani -replied on other thread. xxx
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Chocolates - sorry I couldn't make the on line chat last night as friend took me out for dinner and missed the deadline to sign in.

 

Hope you and yours all doing well.

 

Love and hugs Dani XX

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Thank you Sheila, Bev and Helen

 

We all need some uplifting news and we all definitely deserve it!

 

Love to all XXX

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That's great news Dani!  And your holiday sounds fantastic.😄 have a lovely time!

Love Sheila.  Xx

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Great news dani!! Whoopee! cant wait to get news like that. How many cycles of Cape have u had over what period of time?
Bev xxx
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hi desi...yes he showed me the 2 fuzzy areas on the ct scan. the surface areas of both lungs were just all "black" and he said multiple nodes usually show up here but my lungs were really healthy and this is good as far as treatment goes. but i could see the blobs near windpipe. its strange how yours are presenting the same..may be worth asking your onc if they are imitating lung cancer?
its crafty the way these cancers behave...trying to disguise themselves as something else! but they wont get the better of us eh?
Helen, thanks for ur positive comnents about Cape...it certainly seems to be doing the job for most people. About how long was it before u felt it was starting to work? onc told me it takes few weeks to start taking effect nit like taxotere which works instantly.
bev xxxxxxx
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Hi,dani,oh wow fantastic news on both fronts,markers and holiday,yippee!!
Huge hugs,Helen xxxxx