Lung mets - please join in

[DaniGirl]

Hi all

Beautiful day here in Solihull!

Yoga done, pineapple and B17 eaten and now off to visit my uncle who's recovering from hernia operation,

Good news, saw my Onc on Monday and blood test shows cancer markers dramatically reduced!  Cape is working then.  Feeling amazing and looking forward to healthy happy days!

Also my partner has booked road trip to Italy which i'm more than excstatic about!  Flying to Venice, hiring car and drivin to Lake Garda, Florence, Rome then Amalfi Coast finishing in Rome again where we fly back to UK.  I have family in Rome so will be staying with them in the Pizzeria Ristorante!  Yum!

Hope everyone is feeling well and happy!

Love and light always around you,

Dani XX

[2catlady]

Hi,Tracy,good luck with operation . God,it just shows how adaptive and sneaky C is.
Hang in there,massive hugs,Helen xxxxxxxxxx

Hi,bev,welcome back from you hols xxxx
Yes,cap,will knock the little squatters on the head.
Take care,huge hugs,Helen xxxxxx

[Desi-2]

Bev that is so strange I saw the surgeon Monday I'm due to have op next week to remove a lung tumour as they don't know whether it's lung or breast, biopsy was inconclusive. He said it looks like primary lung! But from what you are saying that could be misleading! Wow he didn't seem aware of this imitation possibility. X

[Bevlaar]

Chris, so pleased for you! Seems eribulin is the way forward eh? I started on Capecetabine today.  hope it will work for me. My Onc said he doesnt think hormone therapy will fo much for me being weakly positive so looks like it'll just be chemo,

He showed me my ct scan and explained that I have only 2 mets but they're not exactly in the lung but mainly round the windpipe. He also said that they arent the typical breast mets presentation but in fact they are imitating lung cancer although he knows they are definitely breast mets because of the biopsy results. 

He also said that they will still treat them the same regardless of presentation.  I wondered if anyone else has anything similar to this? 

I felt a bit worried in case the chemo isnt effective and they keep growing, what will eventualky happen if I cant breathe?? He did say that if that did happen way down the line, they may have to intervene with surgery but there are lots of options to try first. 

Love bev xxxx

[Steris]

Thanks Tracey things are improving and pain levels have decreased thank good do something is definitely happening. Having a scan on the 29th July after two cycles thought that was a bit soon but I'm on the observational study so they're keep a eye on me.

Hope everyone is doing well on treatments and good luck anyone waiting for scan results.

Much love
Chris x x x x

[Desi-2]

Chris if it helps any I have recently heard of a lady on an other group that has had amazing results from Eribulin. Hope you do too.

Best wishes Tracy xxx

[Steris]

Thanks Shelia & Helen, because of so much progression and further spread its very scary stuff. I tried and thinking it's still the same cells and hope that eribulin will know uggers on the head. I imagine the space invader machine and that they're getting zapped.

Hope everyone's coping with all your treatments. Lulu, you are in my thoughts and you are one amazing lady.
Much love n hugs all round
Chris xxx

[2catlady]

Hi,bev,look on bone mets thread Julie gave me an update yesterday. Lulu is doing okay after her opp.
Helen xxxx

[Bevlaar]

Just still a bit concerned that I havent heard anything from lulu for last couple of weeks....has anyone heard how she is since her last hospital admission few weeks ago? Hope all's ok with her. Sending her lots of love and cyber hugs  xxx

love bev xxxxx

[roxy12]

Hi Chris,

Sorry to hear you have had progression. It's a shock when you find it has moved to another area isn't it. Hope the eribulin works wonders! I have had enlarged lymph nodes in my lungs for about two years and they haven't got any bigger.

Take care. Love Sheila xx

[2catlady]

Hi,Chris,great to hear from you,but not great news. Yes,the new treatment will bash the buggers.
Rest up and conserve your strength.
Huge hugs and take care,Helen xxxxxxxxx

[Steris]

Hi ladies,

Sorry I haven't been on for a while. I've read your posts and I'm so sorry to hear that you've been struggling. I think after initially shock and with treatment plans in place you star t to feel a little better. I'd like to wish you all excellent results with those.

I've had secondaries for 5 years sometimes it feels like forever with the treatments. I've been on. My scan results were very good unfortunately. I h.ad lots of progression and thickening in the pleural which has caused me a lot of pain. I had to have radiotherapy for my spine Mets L2 and new pelvic region S1 which knocked me for six. The other results were I now have liver met to join the party. My oncologist was concerned about a large lymph node on my neck which I couldn't feel but I have lots around my lung area too. Tumours. In my lung have also increased so theyve been having one hell of a party and without my knowledge how rude!

I've started eribulin chemo on the 16th to start and halt the progression so fingers crossed it zaps the little huggers in their tracks. I'm feeling fatigued and not really sleeping but the good news is that the pain has decreased which is a huge bonus and great start.

Hope you lovely ladies are having a good day and you've enjoying your holiday chocolate you so deserve it.

Love
Chris xxx

[DaniGirl]

Hi Chocolates!

I've figured it out and have explained all in my message!  I feel a little silly now!!

Hugs

Dani XX

[Chocolates]

I've messaged you dani to this new account xxxxxxx

[MiniBee]

I'm so sorry to hear your news, but I'm in the same situation and I'm writing to give you some hope. I was diagnosed with HER2+++ BC in November last year. At the same time as my diagnosis, they found that I had multiple lung nodules and lots of lymph nodes involved. I dreaded the CT scans and the oncologists were completing forms for my treatment which said palliative care. I was very scared. However, I was put on a trial for my type of BC, Docitaxel, Herceptin and Pertuzimab. After 3 cycles, I had an excellent response to treatment, and my lung nodules had decreased significantly. Also, my original lump which was very large had melted away. I have now finished my chemo, and I'm on a 3 weekly maintenance dose of Herceptin and Pertuzimab. My lung nodules are stable, and they are not even sure if it's not just scar tissue. Either way, I could not have imagined such a positive outcome a few months ago. I know what it's like to be in that very dark place, but there are lots of positive stories out there which give so much hope. Wishing you all the best and hope you're getting lots of support xx

[Danigirl501]

Message to Chocolates

I logged into my account today and all my recent messages have disappeared but in place of those are messages that relate to 2012!!  If you've sent me a message let me know. XXX

BCC please can you reinstate my recent messages?  Why has this happened?

Regards

Dani

[DaniGirl]

Hi

I can't say I wheeze but I do clear my throat a lot although I have mets in pleural lining which are just cells and not tumours. 

I'm on Cape and have a scan in approx. 2 weeks so will see if it's had any effect as I have new primary in "good" breast which is the same dx Grade 2 estrogen + and with a little added progesterone which wasn't in original dx.  Her2- so no Herceptin for me.  In fact onc said no hormone therapy whilst on Cape. 

It's my 2nd month running where I've had a period which concerned me but doesn't seem to be bothering my onc.  I do however have a blood test this coming Friday for full blood count and to see if ovaries are back in action.

I was on Tamoxifen from Sep 2012 until April this year as it had no effect on stopping cancer from returning in other breast.

Has anyone heard from Lulu?

Love and light to all
Dani XXX

[roxy12]

Hi BC lass,

I have lung Mets and do get a wheeze sometimes. Usually when I wake up in the morning. I listen to it as I lie in bed. It goes as I start moving around. It does seem to be a bit better at the moment. I wonder sometimes if it is due to the Evorilmus I was taking until Dec as it can give you lung problems. I have some non cancerous granulomas on my lungs which i didnt have before and my lung Mets have been fairly stable since they were found in 2011. 

I haven't taken anything for it as it isn't that bad.

Hope you get it sorted. Are you due to see your onc in the near future?

Love Sheila xx

?

[bc-lass]

Does anyone with lung mets get a wheeze? What do you take for it?

[Bevlaar]

Thanks Helen...really appreciate all the uplifting comments posted on here. I have so many worries with being newly diagnosed...like what if I dont respond to the treatments and how many are there exactly?? And I so much want to be one of you lovely ladies that go on for years on treatment but I have known 2 ladies locally who only survived around 2 years after dx....so sad and very worrying.

Why didnt treatments work for them?

Anyway have to stop speculating...it'll drive me round the twist! Looking forward to another hot sunny day by the pool and yes...I did treat myself to a lovely cocktail last night!

love to all♥♥♥

Bev xxx

[Bevlaar]

Hi Sally...I was dx with lung mets too 6 wks ago.  On holiday in Zakynthos at the moment for 2 weeks but back on 30th and starting chemo 2 days later!  I had 2 mets 5cm and 2.5cm in right lung. Will be starting capecetabine orally but also offered taxotere as alternative.  Onc said no difference in efficiency but obviously no hair loss with Cape or very minimal.  

Hoping my tumors will shrink as starting to feel some rib pain now where the larger one is at base of lung near ribs. Feels like cracked rib when I breathe but 2 paracetamol eases it quite a lot. Glad to hear youre doing well and I love swimming too...looking forward to getting in that pool today!

How long since your dx?

Love Bev xxxx

[2catlady]

Hi,bev,it does get easier and cancer is not the first thought of the day every day. We all have down days and this is totally normal and this is where the wonderful ladies help you by giving you a cyber hug.
You haven't made anyone miserable it's an awful disease to live with and we all understand.
Have a wonderful holiday and try to put C to the back of your mind even for a little while. Sending you massive cyber hugs all the way to Greece and have a large glass of wine,Helen xxxxxxxxxxxx

[Bevlaar]

Thanks pam and lakeslover...thats a relief! Actually i kmow its only our 3rd day today but ive hardly coughed! Abdvwhen i have occasionally brought something up its either clear or pale green....so something to be said for the greek air 🙂
The one thing i hate tho is having to wake up every day with the same thing on my mind and its all i can think about all day...is having this dx. I wish i could think of other things. Only just over a month ago i was happy that my daughter and her boyfriend had bought a house and we were all busy with that.
When do these thoughts of "having cancer" go away? Will i ever think "normal things" again??
Sorry for the downer ladies but this seems to come over me in waves everyday. I just want them to find a cure or something to put us all in remission until we are very old ladies....is it an unlikely concept?
Sending u all hugs and love and hope i havent made you miserable
Bev xxxxxxxx

[pam01]

Hi Bev. When you have a bleed into a space like lung (or stomach etc, etc) the blood starts off red. but then it begins to get broken down and reabsorbed. As it gets broken down by enzymes etc it begins to go brown in colour...if you cough this up it suggests its old blood rather than from an active bleed. However it will eventually be reabsorbed.....Glad you are feeling ok...relax and enjoy the holiday!xx

[Lakeslover]

Yes, probably a bleed from earlier that clotted in the lung and now you have dislodged it.

OH and I went to Greece while he was waiting for diagnosis last year and his cough improved while we were away. Maybe the climate?

Enjoy your holiday.

[Bevlaar]

Thanks lakeslover. I did google it earlier and youre right...it says old or dried blood. Nothing to say if serious so maybe worrying for nothing. What is old blood tho? Is it blood thats just sitting around the lung waiting to be coughed up?? Bit graphic sorry lol! Cant understand where its come from. I need Lulu's expert advice. Hope shes ok now...
Anyway not coughed up anything nasty since arriving in greece...in fact hubby says i've hardly coughed since being here xxxxx

[Lakeslover]

Brown rather than red would suggest to me probably an older bleed, rather than fresh bleeding. It can also apply to partially digested blood, but I doubt that could be the case here.

However I'm not an expert.

[Bevlaar]

Thank you...will ask when I get home. Had an unnerving morning while waiting to board our plane. Started coughing just a little but felt it a bit loose and when I spat out the saliva into a tissue it was brownish coloured not the red that it was previously. Up until now ive only coughed a small amount of blood (less than 10p piece size) just 3 times in the last 6 wks but this change of colour today has me worried. I text my bc nurse to tell her and she replied that if I am still feeling well, then I just have to go with it for now. Can anyone help ease my mind please?

Love Bev xxxx

[Lakeslover]

Hi bev,

I don't know if this will help but my OH has lung cancer and had a bad cough when diagnosed. His GP prescribed a short course of steroids to reduce inflammation and it did help.

So it might be worth a chat to your GP if you haven't already tried that.

[pam01]

Sorry no particular info re coughs....but bon voyage...have a fantastic holiday and come back refreshed!xx

[Bevlaar]

Hi ladies...anyone with lung mets who have or had a cough....until i start chemo in 2 weeks is there anything u can have to ease the coughing at all temporarily? Flying to greece on monday and am a bit conscious that i'll prob have a coughing fit on the plane...
Thanks
Love and hugs
Bev xxxxxxx

[Hilsy]

Hi again, your comments have helped massively thanks, I feel for you all too of course. Although we all have people around us and love us, like they say, they can't imagine how we all feel yet you all can. It's horrid to think others are going through similar but there are inspiring and hope giving stories and we can stick our middle fingers up to statistics!!! X

[Chocolates]

Hi Hilsy, so sorry to hear your dx today. It must have been a dreadful shock. As other ladies have said please do not give up hope. There are so really inspiring stories. Your onc should not be giving you statistics about how long - they really don't know as all stats are out of date. There are many new treatments added regularly so try not to worry. Quite a few ladies seem to have had brain mets removed successfully - I have lung mets and after chemo they are much reduced. I have at least 20 and it was scary when I first found out but knowing the chemo has shrunk them is a huge boost. I'm back to work part time now having finished the chemo 8 weeks ago. I'm on herceptin, perjeta and denansomab bone injection now as maintenance. Will find out soon if I'm stable after next scan. (I have bone mets too). Of course today you are in shock but hopefully once you've had your brain mets sorted and started your treatment plan you will feel a lot more positive.

Huge hugs

Hxxx

[Macie40]

Hi ladies sorry to delete my earlier post but I think I put to much information and would not want to cause embarrassment to the person concerned if anybody should be posting on here and recognise the person concerned through information that I had posted,so will have to be more careful in future. Hope you are all enjoying the lovely sunshine Love Macie xx

[Bevlaar]

Oh hilsy...so sorry to hear of your diagnosis but no-one was more scared than me 6 wks ago when i was dx with lung mets. Look at my previous posts kn here...i was terified! Ive had loads of encouragement from the other ladies on here and yes...there are loads of things they can try today!
I saw my Onc this wk for my results and i was very surprised at how "upbeat" he was talking about new developments...he said there were quite a few interesting new drugs on the near horizon that will be available.
Im not on herceptin but ive had 2 previous bc's....first in 2005 then 2009. Dont believe for one minute that youve only got a couple of years! There are lots of lovely ladies here on herceptin wo can prove otherwise 🙂
Please keep positive and keep strong.
Sending a big hug
Bev xxxxxxxxx

[SueCheshire]

I was on Herceptin 3 and half years before I got progression and their are now other good drugs to go on after Herceptin. Had her2 secondaries for 6 years now.
There are lots of new drugs being developed all the time- have hope xx

[Hilsy]

Hi all, I was told today I have lung mets. I'm 35 and had her2 positive bc 2 years ago. I have a brain tumour as well which they are dealing with first and are going to re start herceptin to deal with lung mets which at present are not big but scattered on my lungs and presenting no symptoms yet. I'm wondering of any good stories as I was told I would probably only live a couple of years. I wonder how long herceptin can prolong life?! Truly terrified and devastated thanks xxx

[Macie40]

So pleased that you took out the extra cover Bev now you can go away with peace of mind and be refreshed for whatever waits when you get back.
Have a wonderful holiday lots of love Macie x x

[Desi-2]

That's great Bev hope you really enjoy your holiday! Xx

[Bevlaar]

Yay!! Thanks ladies...what would i have done without you?? Rung Eurotunnel Insurance for a quote to travel next Monday telling them of my dx and that i was due to start chemo as soon as i returned. Quoted me for annual insurance for both of us to europe...£71.50!!
Paid for it there and then, rang Onc and told him. He said he was happy for us to go now that i was properly covered and can start cape 2 days after i get back. He even got his Sec to do a letter for me saying i was fit to travel. I just feel ive been thro so much distress these last 5 wks and 2 invasive procedures 6 days ago, 1 general anaesthetic andva local within 24hrs of each other...i feel im too exhausted to start chemo in a few days! I'll have more fight in me after 2 wks away just chillin!
Thanks again for your valuable advice
Bev xxx

[Chocolates]

Hi Bev, my initial reaction is to say go. I haven't had cape but I do know that when I was first dx we cancelled our holiday and now I realise we could have gone and I think we would have all been in a better place to cope with the treatment. However I completely agree with the insurance bit. You must make sure you are covered. To double check could you get hold of your onc on the phone and talk through it again with him/her? I think I would give it a go. If he/she agrees that you are covered and can go then I would definitely go. Hope you manage to make a decision soon.
Huge hugs
Hxx

[SueCheshire]

I would go on holiday and start treatment when I got back, wish I hadn't cancelled in March 2013. Do you feel ok, I didn't have any symtons

[Bevlaar]

Hi sue...sorry I should have been clearer, If I was still travelling next monday I wouldn't start the chemo till the week I come back. Thats my dilemma really...do I delay treatment 3 wks to have hol first? xxxx

[nicky08]

Hi Bev

I agree with SueC that I also felt awful (also with same problem!) after my first cycle.  However things settled down after a few cycles and I find I can travel etc and get on with life in general whilst on Capecitabine.  I hope that you are able to travel after you have finished with it as I read your post as meaning you will only be having 3 cycles?  I would also back up the other post (Pam? - sorry, can't read back on this bloomin' forum!) to say take out Eurotunnel insurance.  The newest wording of their policy is that if you are fit to travel etc you will be covered for pre existing conditions - and it doesn't cost the earth!  Hope you get on well with the Cape and you get your holiday - boy,  do we all deserve them.

Nicky x

[SueCheshire]

I wouldn't travel to Greece next week, I went away on 1st cycle (uk) and had awful diarrhea. Once things settled into a routine it was better. I travelled to Egypt on cycle 6, was a bit tired a few days but I just rested. Finished after cycle 8 and went to Israel 2 weeks later and was fine. Everybody is different but that was my experience
Sue x

[pam01]

Bev I have replied re my views on the other thread...........Even though you already have travel insurance it may be worth having additional insurance from eurotunnel to cover breast cancer if you consider travelling next week.xx

[Bevlaar]

Advice needed quickly please from Capecetabine ladies! Due to me starting Capecetabine next wed my holiday next monday to greece has to be postponed.  

Having 3 cycles and the last ends on13 august. I can switch dates of flight to fly on 25 Aug.  

Will I be sufficiently recovered from any side effects by then and be able to travel??  Ive only got till Saturday to change dates with travel company. My onc has said that I am medically fit to travel next week but was worried that if I became ill while away (and cancer related illness excluded from my insurance) then the cost to get me home would be around £30,000!

Your advice greatly appreciated xxx

Love to you all and hope youre all doing well in fighting the fight!

Bev xxx

[Chocolates]

Hi Helen, glad today was ok and markers down - wow!!! Best wishes for tomorrow and you'll be fine. Looking forward to having you back on here when you're ready. Now rest up lovely lady. Huge hugs,
Hxxx

[Bevlaar]

Hi helen..catlady. just wanted to wish you good luck this week...hope all goes really well. Will be thinking of you xxxxxx

Bev xxx