Lung mets - please join in

[2catlady]

Hi,lovely ladies,thank you so much for all your kind words,they really help. Feeling a little bit scared but will be glad when it's all over. The funny thing is my markers came down lol. I reckon I've scared them lol.
Huge hugs to all of you wonderful ladies,Helen xxxxxxxxxxxxxxxx

[roxy12]

Good luck from me too Helen. Come Wednesday you will be feeling much better. I was much happier once the op was done and it was my birthday the day after! I got a card off the breast surgeon which was nice.

Let us know how you are as soon as you feel up to it.  Love Sheila. Xx

[Tinkerbelle]

Helen,

Hugs and will be thinking of you as well over the next few days. 

Looking forward to hearing how smoothly it all went.

Tink x

[Porkie]

Helen, thinking of you over next few days - I hope all goes well and let us now how you are as soon as you are well enough to do so. Much love xx

[Bevlaar]

Helen...hope all goes well with your op (is it tomorrow?) will be keeping everything crossed for you and sending you huge hugs and love
Bev xxxx

[Chocolates]

Helen, hope all goes smoothly today. Will be thinking of you. Hxxxx

[Bevlaar]

My background is....Chest xray showed lung mets on 2nd may and ct scan week later confirmed. The unfortunate thing is...i had a routine chest xray last aug in local hospital following an overnight admission with cellulitis. I was discharged following day and asked about the xray and was told by nursing staff that if no-one had told me anything then it wd have bn clear. Thats why i wasnt too concerned about the cough. Ive now been told 2 wks ago that the xray in august actually showed 2 very small shadows then!! Ive now been advised by our solicitor to consider litigation and have emailed initial complaint to health board copying in our local MP and the Minister of Health for Wales. I had a reply from health board within 15 mins acknowledging the seriousness of the complaint....i think heads will roll!

[Bevlaar]

Thanks ladies...i'm just a bit worried about my cough. Ive had just an occasional tickly dry cough for about a year and hardly noticed it but in the last fortnight (few weeks after being diagnosed) its got more frequent and more bothersome.
Appt for treatment plan not till tuesday but the bc nurse has said its more than likely going to be chemo.
How quickly will the chemo ease the cough...or do they give you something else for that? And will swimming on hol make it worse if we go?
Sorry for all these questions but my minds in a whirl and im still quite anxious.
Bev xxx

[roxy12]

Hi Bev,

I have had lung Mets for nearly 3years and I go swimming once or twice a week.

I also swam while on chemo. Maybe not wise but I waited until almost 2 weeks after each session when my immune system was on the way back up and I was okay.

Hope you get away, it will do you good!

Love Sheila xx

[Chocolates]

Hi Bev, I agree with Helen. As long as onc says ok then definitely go. It will enable you to fully relax away from all this trauma you are experiencing and you'll be in a much better place to start your treatment when you come back. It will also be good for you hubby too.

Much love,

Hxxx

[2catlady]

Hi,bev,I would okay if with onc. After results if I were you in case I
He changes treatment otherwise I'd go. And it certainly won't be your last time there. If you are on chemo I would not go in the pool as you can pick up infections however clean you think they are from pools.
If you are okayed by onc go and have a fab time as you will feel fantastic when you are there. Especially emotionally . I did florida in January and felt the best I ever have felt emotionally & physically .
Huge hugs and get packing,Helen xxxxxxxxx

[Bevlaar]

Just wondering....i have a dilemma. Hubby and i were due to fly to greece on 16 june for a fortnights holiday...to the same place we've been staying for the last 8 yrs. They are like family to us. We havent decided for definite if we are still going yet and thought we'd decide after the results.
My results of biopsy on lung mets and treatment plan are this tues 10th. How soon after that do u think the Onc will want me to start treatment and will they even say its ok to go?
Up till now the bc nurse has said she cant see any reason why we cant go but ive just got a slight worry about infection...altho ive never had so much as a tummy upset there. Where we stay is spotlessly clean and has won island awards every year for cleanliness and food.
And what about swimming with lung mets? They have a gorgeous pool that we have almost to ourselves as its so quiet there!
I feel i would like to go to relieve somebof the stress weve both been through this last month .....and at the back of my mind i just worry that this could be the last time we go
😞

[Bevlaar]

Thanks everyone for taking time to reply and reassure me...I hope you all have a good weekend. I feel more positive today but know that I'm going to be a nervous wreck again tues morning!

Big hugs to you all ♥

Bev xxx

[Lulu34]

Sorry bev just replied to your pm.... I was just shattered yesterday.

I basically have said the same thing as the others.... Lung doc is looking at the bigger picture.... If they cant prove it is lung they will take it to be mets.

And the chances of it being lung is slim being female and non smoker.

Hoping today is a brighter day for you but i too have had real lows where i just couldnt stop crying so my doc put me on on antidepressants and they have def helped too.

You have basically been told the same as me hunny xxxxxxx

[Bevlaar]

When I had the initial consultation with him 2 wks ago before the biopsy,  he said because I'd had 2 previous breast cancers and never smoked, the likelihood of it being lung cancer was about 1%.... why didnt he just say yesterday that he hadnt had all the results in yet not kick me down again with that news??

[roxy12]

Bev, my husband's tumour was large and was in both lobes of his lung but he had biopsies and pet scans etc and because they couldn't find any signs of spread he had surgery. Don't give up Bev. It will probably be BC but if not your onc needs to refer you to a lung specialist who will hopefully be more positive.

When will you know the results? Hope you don't have to wait long. Love Sheila. Xx

[2catlady]

Bev,hang in there ,we are all here for you and sending you millions of hugs,Helen xxxxx

[Chocolates]

Bev, I'm so sorry to hear your news however don't give up hope. As others have said it could still be bc mets. Our minds just think the worst though don't they. I also think the drs always have to give the worst case scenario just in case. They have to be open. So although those words were so difficult to hear they may still not be true. He just had to make you aware. Keep posting and talking to as many people you can. We are all here for you.

((((((((Bev)))))))

Much love,
Hxxxx

[Bevlaar]

Oh thank you Sheila...its just that the lung doc sounded so bl***y gloomy and said if I had to choose I'd want it to be breast mets as there wdnt be many treatment options for the lung and hinted at probably palliative chemotherapy. 

So I dont think surgery would be an option anyway...it sounds too advanced. Its all such a mess !!  I just want someone to wake me up from a bad dream x

[roxy12]

Hi Bev,

As the others say, I'm sure it will turn out to be BC Mets but I can understand how you are feeling. I just wanted to say although I know it may not help, that my husband was diagnosed with primary lung cancer in Nov 2010. He had his left lung removed Jan 2011 and he is fine. He does get out of breath at times but he rides his bike, goes long walks and works 2 days a week. As I said, I'm sure yours won't be primary lung but if it is there is still hope. Sorry for waffling! Not been up that long but wanted to try and help. Love Sheila. Xx

[Bevlaar]

Tracy...i hope u get good news on ur scan too...we're just going through hell arent we? Sending hugs and love..through my tears xxx

[Bevlaar]

Thank you Tracy and helen...i'm praying with all my heart it isnt primary lung. My nerves are in pieces...ive been up since 3am. Dont think i can cope with anymore of this 😞
Sam thanks...i think i will call the helpline today although ive tried once before and was hanging on half an hour to get through. I just hung up then. Xx

[Desi-2]

Bev I'm so sorry for you I know this is very difficult. I also had inconclusive lung biopsy and having scan at the weekend to see if any change. Wish we could be there in person for you.
Lots of love Tracy xxxxxx

[2catlady]

Oh bev,huge hugs, it's very unlikely to be lung c,try to keep that in your mind. BC is most likely as the little buggers like our lungs too.
The waiting must be agony for you. I wish I could come & give you a huge hug. I'm sending you a massive cyber hug,Helen xxxxxxxxxxxxxxxxx

[Sam_BCC]

Hi Bev1004

I'm sorry to read you're having such a worrying time at the moment.  As well as the support you a receiving here you might find it helpful to give the BCC helpline call.  Here you can share your thoughts and feelings with someone who will offer you a listening ear as well as emotional support and practical information.  The number to call is 0808 800 6000.  Lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator  

[Bevlaar]

Im feeling really desolate and so scared. Saw the lung onc yestday for results of biopsy on breast mets in lung. He said its inconclusive and theyre waiting anothr day or 2 for stains to come back as this could in fact be a lung cancer...which wd be 10 times worse as far as treatmnt and outlook goes 😞
Ive read that i could possibly only have months....i cant stop crying and shaking again. When will this nightmare end for gods sake???

[Chocolates]

Hi Bev, just want to let you know that I'm thinking of you. Huge hugs, hxxx

[Bevlaar]

Lulu...ive sent you a message...im so so scared x

[DaniGirl]

hi Lulu

i was taken off tamox in april after my diagnosis so not sure what the bleeding is about?  Will see my ONC first thing monday so will see what she says.

XXXXX

[Lulu34]

Dani

I think tamox worked well for me as i have had no recurrence of the ER+ Which was dx in 2006. But remember we are all different and respond differently to different meds. But bleeding can be an SE of tamox so always best to get these things checked out xxxxx

[Jo_BCC]

Hi all,

After reading this thread, I wondered if any of you might be interested in joining in our Secondary Live Chat service which runs every Tuesday evening between 8.30pm and 9.30pm?  The session is hosted by a nurse and facilitated by a moderator, so there's always someone to talk to in real time.  The regular users of Secondary Live chat are a wonderful support to one another, being able to 'talk' to each other about things that you might find difficult to talk to those close to you about.  I have put the link to live chat below for you to have a look at.  If you want to give it a try you will be made most welcome, we look forward to seeing you there.

http://www.breastcancercare.org.uk/community/chat

Take care,

Jo, Moderator

[DaniGirl]

Sounds divine! Thanks for the info.

We love walking so hope we can do the clifftop walk..

xx

[pam01]

Yes....Torquay has a beach, Brixham is more a small fishing port....with lots of eateries and drinkeries! Babbacombe is a small town which is nice also a clifftop walk. And a walk or a lift ride down to the sea.....nice pub at sea level if you walk down to babbacombe, sandy beach which you can walk to from Babbacombe at Oddicombe...only about 1/2 a mile...but Im not sure if its all fully open cos there have been some cliff falls.

[DaniGirl]

Yes I kind of figured that as my tummy is more sensitive as soon as I take Cap. I'm using Udderley on my hands and feet but my other half pointed out that it has parabens groan...

I've heard of all of the places you mention, do they have nice coastal area?

XX

[pam01]

Yes....the symptoms I get are sore hands and feet which worsens over time as levels gradually build up and leak through capillaries into the skin...whereas gastrointestinal symptoms tend to be more immediate.....Dartmouth is a lovely place...and then theres Brixham, Torquay and a favourite of mine Babbacombe....all within striking distance.xx

[DaniGirl]

Hi Pam

That's great to know. Thanks so much for your input. Is GI gastrointestinal?

Never been to Dartmouth before and have just looked at some pictures... so looking forward to going there.

xx

[pam01]

Hi Dani....just to say that the first few days of the next cycle are often the time with fewest side effects for me...presumably the last cycle at a very low level and the next cycle not yet built up......it may be different for GI symptoms. Have a great break...dartmouth is lovelyxx

[DaniGirl]

Hi Lulu

Thanks for the input. It does help a lot. Whilst I was on Tamox I did have 1 or 2 periods over a year and thought I was going to bleed to death! Do you think that's an indication of Tamox not having an effect in your opinion?

I am seeing ONC Monday morning on our way to Dartmouth for a week's break. Unfortunately it's the only time we can go due to my other half's work commitments and it's the week I start back on Cap.. doh!

How are you feeling today?

Love and light always
Dani XXX

[Lulu34]

Hi Danigirl

Some people have periods all through their chemo. We are all different.

Its more than likely due to not being on tamox any more. I had the opposite problem and bled like a stuck pig on tamox lol.

But always best to run these things past your team to make sure.

Lxxxxx

[DaniGirl]

Evening all

This morning I started my period.....I was stunned to say the least.  How is that possible whilst on chemo? 

My friend is a BCN so text her straightaway and she said it was nothing to be concerned about but to call my ONC who will probably tell me there's nothing to worry about.  I'm on Cap as you probably already know but not taking any hormorne therapy.  I was taking Tamoxifen up until my second diagnosis which was back in April and ONC said to stop taking it but wouldn't put me on any hormone therapy just Cap.  It's confusing but I have to trust what she says...Yes?

Hope all is well with everyone and enjoying this lovely Summer's day.

Love and light always

XXX

[Lulu34]

Hey Bev

Loads of folk with mets work and lots on chemo but depends which chemo and how it affects you..... I only had a couple of weeks off sick until i got brain mets... But now retiring on ill health.

A cycle is similar to what you would have had with your primary.... Usually its 3 or 4 week cycles but it will depend on the treatment your going to be getting.

I was on a research trial to start with and it was treatment twice a week for 3 weeks then a week off and that was for 12 weeks or 18 treatments.... I took annual leave for the first cycle then worked 2 days a week instead of 3 for the rest of the time.

My next treatment was taxotere which was 1 dose of tax every 3 weeks which i had 3 cycles of.... I got septicaemia twice so but did work 1 week out of two during this time.

Im now on capecitabine.... I just started my second cycle today..... Its an oral chemo you take twice a day for 14 days then have 7 days off.

So as you can see it can be very different.... Some you have on day 1 and again on day 8 then a week off some you have weekly for 3 weeks then a week off.

Some people are on cap for lots of cycles.... Somebody recently posted about having their 27th cycle!

Love Lulu xxxxxx

[Bevlaar]

Oh thanks both! That has definitely made things a bit less confusing. I know I'll get more answers when I see the Onc but its lovely to get some clarity in the meantime.

lulu...when you say 3 or 4 cycles....how long is a cycle? Does it mean youre on chemo most of the time? I was hoping to go back to working for the charity I work for just a day or 2 a week if up to it.  Theyve been marvellous and said they'll be happy for me to go in as and when I want, I normally do 3 days but they said just to go in on the odd morning here and there as I please.

I was hoping the side effects wont be as bad this time round as the 3 combined drugs (FEC).

♥♥ bev ♥♥

[Lulu34]

Hi Bev

Im not sure there is an average.... As there are sooooooo many variables.

However in response to your first question, yes theoretically your tumour could change to Her2+ but i think with two types of BC already this would be pretty unlikely.

Chemo works on all sizes of tumours and at all sites..... What they will normally do is scan you after 3 or 4 cycles to see if its shrinking, staying the same or growing.... Staying the same means its working btw cos its not growing!

Depending which chemo your on will depend how many cycles you have.... But as i say its normally 3/4 cycles then scan.... Then 3/4 cycles then scan. Then they may give you a break for a while and will continue to scan every 3-4 months and monitor you until something progresses and then prob back on chemo.

However a lot is down to whether its hormone pos or neg.... As if ER+ then following any chemo they can often manage you on AIs or tamox..... So more options.

But at this stage there are probably more questions than answers really.

As for rads they may do that but its often something they keep on the back burner until you are actually having some lung problems.

Being in the waiting room is sheer torture hunny but we are all there with you holding your hand xxxxx

[Chocolates]

Hi Bev, I'm no expert but I do know of people who have different mets. I think the main thing is they are being thorough and whatever it is the more they know the better they can treat. So whilst this is the difficult part waiting for the dx it is a very important part. However the waiting is awful - we've all been there and seems like forever. Keep posting - we are all here to support you.
Huge hugs,
Hxxx

[Bevlaar]

Hi chocolates and lulu ....thanks for the comments. Could my mets be her2+ if ive  previously been triple neg then er+?  I'm so worried about what else they could find.
Lulu...does the chemo work just as effectively on 2 large tumors as opposed to multiple small ones? And also how long do u have chemo for exactly?
And....sorry for all the questions...but what is the average time they stay stable for after shrinkage with chemo and do u have to have rads as well?
Love and hugs to you
Bev xxx

[Chocolates]

Hi Dani, I'm feeling a lot better today. I've sent you a private message so when you're up to it I look forward to your reply. So pleased to hear from you. Was getting worried again!! Now look after yourself and enjoy your sleep. It's your body's way of healing so don't fight it. Stay well.

Lots and lots of huge hugs.

Hxxxxx

[Danigirl501]

Hi all

Chocolates how are you today?  I've just read your post from the other day and want to give you a big hug and tell you all will be ok.  Hope you're having a lovely weekend. 

Thank you ladies for your lovely posts and wanted to say that although I feel fatigue I don't feel unwell which is a bonus.  I've yet to go on the Inspire website but will do that at the end of my post.

I'm wishing all you lovely ladies the best of everything and enjoy the NOW,  don't worry about tomorrow.

About to do my medidation which invariably sends me to sleep. 

Love and light always around you all.

Dani

[Chocolates]

Hi Lulu, thank you for all your kind words of support and reassuring info about your friend. Wow - that was some shrinkage - it's amazing isn't it how well some people respond. I was on the inspire website last week and one lady is ned with sbc for 20 yrs. interestingly she was asking the drugs/research companies to come study her. Find out why she has lived for so long. I'm with her on that. We look so much at initial dx but hardly ever at secondaries and certainly not at people who seem to defy all odds.

Today I'm feeling ok - emotions not so high and logical brain kicking back in. We're also off out tonight as a family so that will help. Hope you have a good time out also. Glad to hear you're feeling a little better.

I feel I always need to comment about the weather(I'll be changing my name tag soon!!) so it's overcast here but fairly warm. It would have been sunny but I've hung my washing out - always brings on the rain!!

Take care,

Huge hugs
Hxxxx

[Lulu34]

Bev that is exactly what they told me. And although its not that common it is quite a typical TNBC presentation.

But they couldn't rule out lung primary. But like you I'm a young, female, non-smoker and i was told my risk was even less than 1%. And it has turned out to be the TNBC they thought it was. Most people also respond well to treatment..... And lung mets most common site in tnbc from what i remember..... Just mine thats misbehaving.....

But actually feeling pretty good and off out for lunch today. Then starting my second cycle of capecitabine on sunday. Got new meds to help with the indigestion which the rads have caused and that seems to be working! My next chest/Liver/pelvis CT is due on16th but thats only after 2 cycles and was planned for after 3 so might be the wrong date so checking with my onc.....

But he is also at the ASCO conference in Chicago..... Hope he comes back with loads of info for us all!

good luck with gynae op on wed too.

Btw chocolates my friend is on perjeta and herceptin (was on tax too) for over a year and her mets have really shrunk.... And if you had biopsy of one site i think the risk of changing again at a new site would be incredibly tiny and as the treatment is working then i would think its much more likely you are on the right treatment..... Her liver met is now just like a dried up raisin.... It was 60mm!

Love to all Lulu xxx

[Chocolates]

Hi Bev, this disease just keeps on giving doesn't it? One step forward two steps back at times. I'm really pleased that the suspicious growth in the lining of your uterus was a polyp. That is good news. I hope the removal goes smoothly next week.
As for your lungs - I suppose it's back to the waiting game. I had a bone biopsy but not lung mets so in some ways we are presuming they are all her2+. As they have all responded to treatment (albeit at various degrees of success there is no reason to change course of treatment at mo but as soon as they grow I might ask for another assessment). I do know though that her2+ takes a long time to grow in lab so perhaps they are waiting to see if that is the cancer type. Mine took a good two weeks both times so try not to worry too much. Easier said than done I know but remember there is nothing you can do until you get the results.
The lungs dx is scary though isn't it? I'm not so fussed about bone mets but lung mets really worries me. Thinking of you loads and thanks for reply. Huge hugs, xxxx

Lulu, thanks for the info. Under any other circumstances I would like the sound of starry sky and can picture it all too clearly. It's quite a frightening thought. How are you doing? When are your next scans to ascertain if new treatment plan is working?

Have a good weekend

Huge hugs,

Hxxx