Lung mets - please join in

[Marirose]

Bumping up for Marion P

[Mumsp]

Hi! thanks for the answers!

Finally femara stopped only 5 months after taking it.. it was sad because was working awesome.. in the first scan all tumours shrinked and the smallest disappeared (left lung is """"free"""" tumour now thanks to femara)... CEA from l 45 to 15 but anyway, in the last scanner, one node is 2 mm bigger and one tumour 5 mm so my mum was asked for a clinical essay: examestane plus palbociclib vs. capecitabine ["sadly" (who really knows) she was selected to capecitabine]

So she is taking 4 pills in the morning and another 4 in the evening.. isnt it too much? she is 1.61m and 60kg  (in the uk i think its 5'3'' and 132 lb), 53 years old.. 2 weeks on treatment and 1 free... 

Hugs from Spain !

[rosie53]

Thank you Sarahlouise for your info/advice.  I have been googlin the side effects of denosumab and that has made me feel a lot better as some of them sound similar to how I have been feeling!!

Take care Janette xxxx 

[sarahlousie]

Kittycat, Yes I also wish they had taken my ovaries and the other breast at the same time as Masectomy but my surgeon refused to take a healthy breast regardless of the fact I had secondaries. I recently had an Onc. appt. where I asked about having ovaries out and they flat out refused and said the Zoladex was doing a good job so no need for ovary removal. Personally I would rather they took both ovaries and the left breast as I am now like you said a lot heavier gone from an 8 - 18 and the remaining breast is very heavy and makes me look lopsided. I can't wear a bra with prosthetic as I have lymphedema on my rhs torso rather than the usual arm. So it looks dreadful.  Symphathise with you Kittycat xxxxx

[kittycat40]

Hi Sarah Louise my periods returned about 3 years after initial treatment but nobody seemed concerned. I often wish I had had my ovaries removed back then. As soon as I was diagnosed with secondaries in 2012 they took them out! I also have put 4.5 stone on!! Was size 10 and now 16-18! All the very best xx

[sarahlousie]

Hi janette, Sounds like you have a plan seeing Onc. next week you can discuss the cough with her. I am on Arimidex with Zoladex shots 3 monthly and every three weeks herceptin. The menopausal symptoms have recently become a lot worse since starting on Zoladex. I had to have zoladex because I had a period after nearly 4 and a half years!!!!! Yes it certainly is a nightmare but we are winning all we can do is to carry on doing what we are doing, something is clearly working in both our cases eh!! I'm also trying to lose weight as I put on a whooping 5 stone since being on treatments and the forced early menopause. Been cutting out carbs and lost 6lb in a week!!! So no pastries, bread, white potatoes, sweet treats, chocolate, and diary just been eating organic steak, fish, salad, avocado's, vegetables, fruit, feel better for it and got everything crossed more of that horrible weight will fall off. Anytime you want to chat you can always private message me. Lots of love to you xx

[rosie53]

Hi Sarahlouise, thank you for your reply, think I've calmed down a bit now! I usually do try not to get paranoid about every little ache and pain but I think it's because of the weight loss as well....However I have been trying to cut down as we go to Cyprus in 3wks so hopefully it will be that. It's a nightmare living with this horrible disease isn't it!!! I am on tamoxifen and have zoladex and denosumab injections monthly, my onc did say that she may change my tamoxifen to letrozole as my markers have been slowly rising. Can't wait to speak to her next week.

Hugs Janette xxxx 

[sarahlousie]

HI Janette, It is hard but try not to worry too much about this, as your previous scan was as recent as July I don't reckon it can be lung mets we all worry when we get any new unexplained symptoms aches and pains but most of the time its the normal bugs and infections that everyone gets. If it is a nasty bug then GP might be able to precribe anti-biotics. I had multiple mets to lungs which have disappeared with ongoing treatments which I am on forever. I've also had scary coughs but its always turned out to be something 'normal' like flu/colds bugs etc. Also Herceptin can cause unexplained coughs which I get on and off an unusual side effect but never the less still a side effect. Hope you get some help with this soon. I would try some cough mixture as a first port of call see if that settles it while you wait to see Onc. next week. You could try phoning onc.s secretary and booking an appt. xxxx

[rosie53]

Hi ladies, I usually just hang on the bone mets thread. 

Would just like a bit of advice please, dx with bone mets last year and have been stable since but for the last couple of months I have had a bit of a tickly cough also throat and chest feel dry and tight, I weighted myself this morning and have lost 4lbs since last week. My onc is away til Tuesday also my bcn is away til next Thursday so don't know what to do.....totally convincing myself that I have progression to my lungs 😦 had a CT in July which was fine though. My hubby has said to go and see my GP but I don't really see the point as I think he will say to contact my onc???

Thanks Janette xx 

[Helen_12]

Thankyou ladies for your kind words ,I think stress does play a part ,my doctor thinks that maybe the mets in my ribs causing muscle spasm wich can cause difficulty in breathing who knows! Mad how every ache pain or new symptom mskes is panic into thinking worse case scenario am sure there will be something else that will get me hitting the panic button again !! Take care Helen xxx

[kittycat40]

Hi everyone I had some breathlessness last year and was admitted into hospital as they were concerned if it was a clot. Anyway all clear and no answer to breathlessness. I think stress and worry does more to our bodies than we realise! Take care & love to everyone xx

[Mixy Patsy]

That's great news Helen. I have a good oncologist too.  Couple of months ago I was admitted to hospital with a suspected clot on my lung. I had scan the following day then was told I could go home and come back next day for results. I was concerned about that as my son in law was away and I would have no way of getting back. My oncologist appeared on the ward at that point. She realised why I was worried and said don't worry I'll sort that. She was back in half an hour with the results no clot so I could go home. Breathlessness was put down to a virus. 

[sarahlousie]

Helen that is such a great Onc to do all that so quickly and thankfully for you it was a good clear scan. As for the breathlessness I would assume its the drugs your on, I get breathless and as the lung mets have disappeared I put it down to the Herceptin after speaking to the nurses they have told me other ladies suffer the same side effect, maybe look further into the side effects. So pleased for your good results. x

[Helen_12]

Hi Pat,yes I saw my oncologist Friday who managed to arrange a chest scan for that afternoon ,he tried to call me Friday eve and then Saturday but was trying my old nuber !he got me this morning to say scan was clear of clots and spread so huge relief ,but still unsure as to what causing breathlessness ! Feel lucky to have onc who sorted scan so quickly then to ring results through himself xx

[Mixy Patsy]

Hi Helen just wondering how you are feeling now. Hope something positive came out of your meeting with the oncologist 

[Helen_12]

Hi pat ,yes seeing my oncologist in the morning so hopefully he may decide to do some sort of test /Scan .sounds like you have really ben through the mill.i have had bone mets in ribs and spine for three years and been fairly stable ,but always panic when new pains etc arise as the fear of further progresson is always present .helen xx

[Mixy Patsy]

Hi Helen hope you got to speak to your oncologist secretary yesterday and that they were able to reassure you. Pat x

[Lucy_BCC]

Hi Helen I am sorry to read that you are feeling so worried at the moment, along with the support you have here, you are welcome to call our helpliners to talk your concerns through, lines are open today 9-5 and Sat 10-2 on 0808 800 6000 ( weekdays 9-5)

Take care

Lucy BCC

[dennymac]

Aww Helen try not to get too worked up, call them tomorrow and let them know you are getting really worried and anxious. Hopefully they will rush your X-ray then so you aren't kept waiting too long xx

[Helen_12]

I'm having an x Ray ,but think I will ring oncologist s secretary also ,I'm getting myself into a right state xx

[sarahlousie]

Ditto I also had lung met dx from start with both secondary and primary. I had multiple Mets to both lungs did chemo surgery and rads now on herceptin forever and was on tamoxifen now arimidex as well as zoladex to shut ovaries down. I never had any symptoms but worried every time I got a cough if you are on other medications they can sometimes cause the breathlessness and cough herceptin side effect. You should ask for a ct scan they are the best to show lungs. I have one every 3 months . xxx

[dennymac]

I have lung Mets and never had any symptoms.. Dunno if that'll help or not! They giving u a CT scan or just a chest X-ray?

[Helen_12]

Thankyou dennymac ,just panicking as feel I can't fully breathe in and out properly and also experiencing a tickle cough and thinking that this maybe spread saw doctor today who is organising a chest x Ray but worried sick xx

[Mixy Patsy]

I was in a similar situation to you. Very close to my daughter who had a rare lung disease. We kept each other going texting and messaging on days when we couldn't get together. Sadly she died in June aged 47 now i am staying positive whilst living with SBC for the sake of her 3 boys. Like you I have many good friends who help out with lifts to hospital for scans etc.

i hope everything goes well for your daughter.

[myplace]

Hi

Not sure if this helps, but I am a Mum with SBC. My daughter and I are also close and I have said to her (and everyone else) just treat me as normal. Never tell me I'm brave, I.m not. If I need help give it, i.e. couple of hospital stays recently, but otherwise carry on as normal. I am lucky enought to have lovely friends who accommpany me to Chemo sessiions.

Unfortunately. my daughter has recently been diagnosed with BC and she has said the same, treat me as normal.

Privately of coursed I prey she can be cured, not least because she and her husband have a beautiful 10 month  old.

[formymum]

HI,

I just wanted to say Hi as I too am someone on her because my mum has secondary breast cancer.. tough isn't it?!

How is your mum doing now?

My mum is on tamoxifen and has secondaries in lungs and bones.. she is doing well but I sometimes find it hard to know what to say and how to react. we are very close and it's horrible watching her going through this.

positive thoughts your way.. 

[dennymac]

Nice to meet u mixy patsy I'm not on these injections myself but I'm sure someone will be able to answer your question soon!

Helen_12 if you're feeling breathless there could be a few different things it could be, chemo and cancer can increase our chance of clots in lungs which can also cause breathlessness so u should inform your team and they can do the appropriate investigations xx

[Mixy Patsy]

I'm new on here. I thought I would introduce myself. I was diagnosed with breast cancer in 2004 and had a radical mastectomy followed by chemotherapy. In 2011 i had a collapsed lung and the CT scan revealed the presence of cancer cells. I had secondaries in my lung. I was put on letrozole in August 2011 and this kept the cancer under control until January 2014 i was then given a course of chemo and after that i went on to Exemastane. In May this year I found a lump in my remaining breast. An ultra sound found 3 lumps in the breast area. I am now on Fulvestrant injections.  Hoping this will bring the cancer back under control.

is anyone else on the injections? 

[Helen_12]

Hi ,I have had bone mets for 3 years and lately have been quite breathless and was wandering about symptoms and if I may have got spread to my lungs just wanting to pick your brains ,Helen x

[Glo]

I was diagnosed with lung mets from the start in aug 2010 and only took ketrozole for 4 years. In that time I became NED until it stopped working in Sept 2014.
Glo xx

[Mumsp]

Hi!, i tried to reply this topic but i think i did something wrong!

I wanted to ask you how long letrozole worked for you??? My mum has been taking letrozole for 5 months.. it was working for her.. the smallest tumors dissappeared and the others reduced. Tumor markers went from 45 to 15 but 2 days ago the tumor marker has increased from 15.6 to 25.4 so the onco said she wants to check a new scanner because the letrozole could have stopped working or its just for something random...

I am lost with that because if its not working.. letrozole only would have worked like  4 months.. 

My mum secondaries are er+ pr- her2-  she wasnt on homonotherapy when she was diagnosed in 2008 

Thank you!

[Mumsp]

Hi, i wanted to ask you how long letrozole worked for you? my mum has been taking letrozole for 5 months. It was working for her.. tumor markers went from 45 to 15. The smallest tumors dissappeared and the others reduced but 2 days ago de marker went from 15.6 go 25.4.. the onco wants a scaner to know if it stopped working or just tumor marker increased for something random

Thank you!

[sod6162]

iMac55, the waiting is really the worst part, and you've already received lots of good info on this wonderful forum. Just want to add, if you have a BCC help-support centre near you, call and make appointment to see welfare advisor. They will help you get extra funding via PIP after your confirmed diagnosis. Also poss income support if you've paid NI (sure you will have). Don't be shy about asking for help. Also, my surgery also offered me advisor appointment if I needed financial help (the forms can be tough). Sorry that you are dealing with so much at once, and also caring for those around you but glad that you have a big family...good luck with all of it x Sheila

[imac55]

Thanks Chocolates. The cold is strange, feels just the same 2 weeks on, and the tight chest is def more on the right side. But not getting worse. Still have elements of doubts re this, but trying not to think too much about that. I did only see a registrar, which I am never really confident about. Next app 30th June, nurse said today she will try and get this moved earlier as had PET so quickly. Thanks for replying.

[Chocolates]

iMac, things are moving quickly for you which is pleasing and reassuring. I'm really glad you can feel your mood lifting. Just remember though to take one day at a time and rest as much as possible. You will soon have a treatment plan and this will hopefully ease things more. Now get rid of that cold so you are ready for yur treatment. Huge hugs xx

[imac55]

Feeling less frightened after hospital visit. Few tests done. Mentioned my symptoms, apparently I have a cold! Assumed the worst. My breathing tests showed not cancer causing current symptoms. Had blood test for tumour markers and refered for PET scan. Had a cancellation so going for that tomorrow. Need ct on head and poss biopsy. ct on chest confirmed cancer. Most likely BC. Lots of love around me. The darkness is lifting, for now.

[imac55]

Thanks yes app came through for Tue 16 th. Feel like I am going down hill rapidly. Been ill and undiagnosed for mths, hence my current frame of mind.

[Chocolates]

Good morning imac55, what a scary time you have had and now all this to cope with. I'm so sorry. I have lung and bone mets - I tend to hang out on the bone mets thread but occasionally pop in here. Please do not give up. You are at the scariest part. Once you have seen your onc and have a plan in place things will settle down. Also, things are changing now re end of life care and people's pain tend to be better managed and more dignified. You are naturally thinking the worst but some people are on here having lived with mets for over ten years so you still have some living left to do yet. The most important thing is to see your onc and get some treatments started. Telling close family is always difficult but it might be wise to wait until you fully know what is going on as they will ask lots of questions and you may become more stressed as you don't know the answers. They might also Google and that is the worst thing to do. If you are currently struggling to get your head round this all then please ring the helpline - they are really good and will listen to everything you say.
I hope your gp has made a very urgent referral and you get to see someone this week - did he say how long it would be? I'm sending yu a huge hug and am thinking of you.
Hxxxx

[Mariecay]

Thank you Edwina that helps a lot 🙂 I've been really worried as my symptoms seem to be getting worse not better and because I already know that it's spreading rapidly it's making me more anxious! I'm only 3 1/2 weeks into treatment so hopefully will pick up soon x

[imac55]

I've copied my thread here from another section as suggested by a contributor. Still in a haze. Gutted.

My BC diagnosis and treatment started in Oct 2006.

After mths of blood tests then 3 dif scans, I now have a diagnosis of lung cancer, presuming BC mets. No biopsy yet, but scan conclusive. All of these tests were done via my GP, who today refered me to a consultant. I am devastated. Shocked that it took so long to get to this point, and very worried now that it could be too late for affective treatment. I've had severe fatigue, aches and pains, but no cough etc, until this week when I have suddenly got a lot of phlegm, a cough and tight chest.

My mind is racing. I am a teacher, and know if I can hang on for a short while longer, I'll get paid over the summer, and I need this cash, as husband also ill and I'm the only breadwinner and only part time as it is. Its a private school so no protection or long term full pay etc. But I resent my shortened life being taken over by this all consuming crazy job. I so do not want to go in to work next week.

When do I tell my grown up kids? My Dad died from Lung Cancer, it was a horrible death, I am so scared. But also. I was desperate to spend as much time as possible with him, and think they will be upset if I don't tell them sooner rather than later, but I know they will take it really bad, as will my older grandchildren. We are very close.

Its so dam unfair. Just offloading to those who know. Because of my Dad, I've even though about assisted dying. He lost all his dignity, which was so cruel, I can't bare that thought.

Thanks for reading

[edwina64]

Hi maricay I have bone and lung secondaries.  When I first went on hormone treatment  

 I had  a flare up of my bone secondaries  in my ribs a few weeks into it and pain breathing. They checked it out because rarely you can get a blood clot. All was ok an it took more than 6 weeks for the treatment to start to work. Hope this helps x

[nicky08]

Bumping up

[dennymac]

Hi mariecay! I have had weird pains in my chest after getting chemo, wasn't really painful but was odd twinges and I've had a cough too which comes and goes. Just finished chemo and continuing on herceptin and perjeta and got my ct scan results on Friday and my lung mets are gone (and a small pleural effusion I had was gone too) so was nothing sinister causing the twinges. I put it down to the chemo attacking the bad stuff. If u are worried though talk to your oncologist cause they really know best xxxx

[belinda]

Hi Mariecay, I don't have an answer to your question but just bumping up the thread as it was beginning to slip down the page so hoping someone will see this and can help, has had some experience of this. I hope you may find exemestane is working for you, it does take quite a while to kick in doesn't it? Keep in touch, best wishes. X

[Mariecay]

Hi I was looking for some advice...initial diagnosis nov 2013, lumpectomy, node clearance, 6 cycles of TAC and 3 weeks of rads. I have been breathless since march 2014 and been told it was down to the chemo. However this January they decided maybe something wasn't right so sent me for a CT scan in fab this year. The scan showed 2 very small dots on the lower right lung which they said could be an infection. I was given antibiotics and re scanned at the beginning of April. The scan in April showed what looked like snow flakes with spiders fingers branching off covering approx 3/4 of the right lung and also 1/4 of the left lung plus 2 nodes in the chest! At this point they said it still looked like an infection so sent me for a bronchoscopy 3 weeks ago. The results of the bronchoscopy showed that the lungs were very inflamed and they were struggling to take biopsies as they weren't sure what was cancer and what was inflamation. What they did determine though is that it was breast cancer cells. Since the bronchoscopy I have been left with a cough and a pain in my throat/esophegus which is extremely painful when breathing in...I've been given medication for thrush as they think this may be the cause. I have been on this for 7 days and there is still no improvement. Has anyone else experienced this?
My ONC has put me on exemstane and zoladex injections and sent me for some baseline scans on bone, full body and brain a week last Monday. These scans were clear but showed that the lungs had got worse plus the mammary gland were all swollen. My ONC then suggested because of this I would probably b better having chemo, however I told her that apart from the pain in the throat/esophegus I had noticed I had started to feel better and less breathless so she agreed that It may be better to leave me on the hormone treatment for another 4 weeks and see how it goes.
My question is (I'm really sorry for the long post but thought it would be better to provide full details) the last few days (3 weeks on the hormone therapy) I've started to feel a little more breathless, not as bad as before, and the cough seems to be getting a little worse, plus very slight chest pain. I have heard that you can get a tumour flare in the first few weeks of starting treatment but not sure if this can apply to the lungs....has anyone had any experience of the above? If so I would be really grateful for your advice....thank you for taking the time to read this post and once again I'm really sorry for the length of it x

[desperado]

Thanks Catlady and Pippy, just hope that it is breast cancer,  am fed up with the chemo and want a break. Thoughts with you all who are on this **bleep**ty journey, it is such a tough journey and appreciate your input. Hugs to you all.

[Pippie]

Hi Desperado - I haven't had the same experience as you but I have just spent 3 months being passed around whilst it was being confirmed whether or not I have SBC in lung or primary in lung - nobody seemed to agree but finally it was confirmed as SBC mets and I finally started treatment last week. As my mets on the lungs are small, I am on Anastrozole for now with denosumab injections for my bone mets.

Hope it all resolves it's self soon for you.

Pippie x

[2catlady]

Hi,Desperado, there has been a lady on here who's BC was imitating lung cancer. She found out by a biopsy .Breast cancer can be a sneaky B.
I'm sorry but I can't remember who it was.
Huge hugs,Helen xxxx

[desperado]

Thank you Nicky, hope some one can help, am her+ and on herceptin.  Am tired of chemo and hope I don't have to stay on it longer than necessary.

[nicky08]

Hi
Sorry I can't help you desperado but I just wanted to say don't apologise for putting any of your concerns on the forum and it looks like you've come to the right thread anyway. I'm sure someone else, with lung mets, will come along and offer advice later in the day but it can be a bit quieter in here over the weekend. Take care
Nicky x