Looking for hope

Looking for hope

Looking for hope Hi

I was diagnosed with multiple lung secondaries yesterday (see profile) and right now I am feeling very frightened. This has come as a complete shock to me as I have no symptoms.

Can anyone share any experience with me, give me any hope?

Please…

Love to everyone

Jakki
xx

So sorry, Jakki This must be such a shock to you. I’m afraid I haven’t any personal experience to share with you, but I’ve followed your posts about your supraclavicular nodes and wanted you to know I’m thinking about you and hoping that the next treatment will be really successful.

Kathy xxx

Hello Jakki You must be scared right now but don’t despair. I was diagnosed with lung mets almost 2 years ago and I have had numerous treatments. The current one has been working for 9 months with very few side effects.
We are all different in our diagnosis and treatments so I don’t want to second guess what your onc will give you but there was away ahead for me and I am sure there will be for you.
Good Luck with your treatment

Panda xx

Hello Jakki I have been following some of your posts on the Younger Womens forum and just wanted to say how very sorry i am you have to join us. It is going to take some time for you to come to terms with such a horrid dx but you will and you musnt give up. I havent got lung secondaries but i have just been told that part of my lumbar spine has partially collapsed and i am going to need surgery - a real shock for me as i have been stable for nearly 3 years.

There are many ladies on here who have lung secondaries and are living good lives - i know they will respond.

There are bucketfulls of treatments out there that will help you and they will - Has your onc told you what she will be putting you on next.?

Remember keep on keeping on.

So sorry Jakki I’ve also been following your posts.

Can imagine what a hard time this is right now and hope you can take encouragement from the messages from those who’ve been living with lung mets for a while.

best wishes

Jane

Hope Hi,
I just wanted to repeat what the others have said. I remember the awful fear you feel when first diagnosed and so really sympathise. I was diagnosed with bone liver and lung secondries over 2 years ago. My lungs were so bad that I kept getting pleural effusion in the right lung and ended up in hospital for a pleurodesis operation. I made an amazing recovery and the various treatments have kept the mets generally stable.
Within a year I went from barely being able to walk a few yards up my road (as I was so breathless),to training for and completing the Moonwalk (26miles) in May 06.
There are lots of treatments and lots of us living well with lung mets …so it’s natural to feel frightened (we all do) but don’t give up hope.

Keep posting here - you will get lots of support.
Lots of luck,
Flojas

For daisypink Hello Jakki,

I am sorry to hear of your diagnosis of metastatic breast cancer which has spread to the lungs. Could Breast Cancer Care offer you some further support through our telephone support services? If you are interested we run a weekly telephone support group hosted by health care professionals. If you are interested in this service the helpline staff will be able to give you further details on 0808 800 6000, and are there if you want a one to one chat in confidence.

Also there is the Live Chat sessions for people with Secondary breast cancer, each Tuesday evening 8.30pm to 9.30pm again this is hosted by a health care professionals. Just follow the links from the chat forums to log on to this service.

I hope this is of help to you Jakki.

Kind regards
BCC Host

Thanks Hi there

I’m amazed at the replies I have had to my post… Its really touched me and already given me some hope so I want to thank each and everyone of you for your encouraging stories. I couldnt believe how many of you said you had been following my posts…

Kathyf - Thanks for your good wishes, hope you are currently well.

Panda - Thats fab that you are currently well 2 years on… Can I ask what drugs you have had in this time?

Domino - Also great that your still doing well 3 years on with the bone mets, good luck with your op, hope all goes well… which i’m sure it will.

JaneRA - Thanks for the private message, your not intruding at all, i will reply to you shortly and i’m just about to post you a reply on your query with the nodes.

Flojas - Thats also brilliant that 2 years on you are still doing well. Sounds like tykerb is the way to go!

My Oncologist is waiting to hear if my hospital is going to get a trial for Tykerb, There is currently me and another 5 ladies who are waiting to hear, we should know mid may. If The hospital gets it, I will be on tykerb along with Xeloda. Failing that , i’ll stay on herceptin and he’ll give me vinorbline. The most frightening thing for me is the worry of not being able to breathe… how do you ladies cope? can you give me any tips of how to get through the anxious times and worry?

Got my macmillan nurse coming round tomorrow so hopefully i’ll get some help from her…

Once again… thanks a lot… please keep those encouraging stories coming…

Lots of love

Jakki
x

For Daisypink Hi Jakki,

Have just read your post and I am so very, very sorry about your results yesterday. I was only speaking to Julie yesterday in the chemo department at Stafford and she told me you were receiving the results of your tests yesterday afternoon. We were both really hoping that you would have some good news.

I know when you are first diagnosed with secondaries it is absolutely terrifying but as others on this secondary forum have said, there are lots of treatments available and after a while you do find you can lead an almost normal life.

I was only diagnosed with secondaries in my bones (spine and hip) and have had no progression for almost 2 year, however, I do seem to feel a little breathless every now and again and have a bit of a cough so am half expecting to find my cancer had spread to my lungs too. However, having read so many posts here from women with secondaries in their lungs, not half so worried as I would probably have been otherwise.

So try to keep your chin up and you never know, we may meet up in the chemo department at Stafford yet.

Take care.

Best wishes
Jojo

Hello Jakki, I’m sorry to hear your news. I’ve been living with mets since 2003, take heart, there are lots of good treatments out there.
xx

Hi Jakki I had progression to my lungs confirmed in Jan 07 and am nearly finished FEC, glad to say lungs reported as being “almost back to normal”. I had some breathlessness going up stairs but cycle one of chemo made such a difference that I now have little probs with breathing.

Sorry to read your news, good luck with your treatment.

Love Twinkle xoxo

I have had quite a few treatments, Jakki When first diagnosed I had FEC which I worked through. I found it an OK chemo. Sadly it didn’t work and I got my mets diagnosis a few months later when a blood clot was found in my (very swollen) arm . The CT scan showed mets in my lung and ribs and sternum.
I was then put on herceptin which didn’t work either. I then had taxotere which I had a very bad reaction to.
As I am ER + I have also tried tamoxifen which I came off because of the blood clot and arimidex which didn’t work either. I am now on xeloda and femara which so far has supressed the cancer for 9 months or so.
My onc told me that are still things to try. I tried to get on the tyverb trial last year but I wasn’t eligible.
I am also on warfarin, morphine and a nausea drug which controls my side effects very well.
So you see there are alot of drugs out there for you and what doesn’t suit one person will another.

Good Luck Jakki

Love Bev xx ( Panda )

Hang in there Jakki! Cant give you any advice on lung mets, mine is in my brain. It sounds like there is alot of women out there who are living long lives. Take care Jakki, hope the treatment goes well this time!
Love Suzy

Jakki Jakki,

I don’t come to the BCC forums very often, these days, but someone’s just told be of your latest diagnosis, so I had to come find you, to say… well, I don’t know. What can I say?

I went to the other forum first, incase you’d posted there. But I couldn’t see anything, so I came here.

I know how frightened you must be feeling at the minute. And I really can’t say much that hasn’t already been said.
I just want you to know I’m thinking about you, and willing some love & hope your way.

Lots of love & hugs,
Dee
xxx

Hi
I’m so sorry to read about your news. It’s so unfair as you’ve been through so much in such a short time.
Reading your profile, we were diagnosed with primary and secondaries at roughly the same time but I am 45 now!! I can understand your fears of the way it has spread so quickly.
I’ve got wide spread lung mets but mine are in my lymph system in my lungs and were diagnosed in September 06 (although I’d been breathless since diagnosis despite loads of CT/VQ/Xrays showing nothing!!!)
At times I’ve been very breathless but have learnt to cope with it Don’t get me wrong - I do get frightened at times but I’ve discussed my fears with the onc and macmillan nurse who have all reassured me about treatments they can offer and so I feel so much better. I’ve learnt to live within my capablities which is hard but better than over exerting my self and making myself ill!
I had vineralbine from September 06 to January 07 and it really improved my breathing. (although 9 weeks later, I was back to square one and got breathless and my chest xray was as bad as in September but I’ve started capecetabine and now on my second cycle and already feel better!! I’m also trying to get on the tykerb trial but with no success at present.
Sorry, I feel I’ve come across as very hard hearted which I didn’t mean to do. I remember my fear when I was told about my lung mets and was really scared about getting more breathless. However, with the chemo it has improved it and as you’ve read here there are many women who’ve had chemo and are doing well despite lung mets.
I think there are many options of chemo that you can have and that will reduce these mets. Hopefully you will get on the tykerb trial and that will make the difference to you.
I think getting told you have a secondary is so hard and it takes a long time to sink in. hopefully, they will find a treatment that works for you and they will shrink.
Thinking of you at this time
Kate

Thanks Hi

Just wanted to thank you some more for the replies again… just finding it very hard at the minute. I have feelings that i cant cope and i’m scared to be on my own… did any of you feel like this?

My macmillan nurses came round today and they helped, they changed my pain meds so i am on constant slow release morphine, hopefully that will help to take my pains away and ive also been given lorezepam to ease the anxiety. Have any of you had this? How did you find it?

Suzy, I cant imagine how you must feel about your mets, sounds like the WBR did some good… i’m over the moon for you…hope you are feeling well.

Dee - hows you? I should know mid may if i get my Tykerb, are you any further foward with yours?

I really dont know what i would do if i didnt have this site… ive met some amazing friends who i love to bits and now gaining more encouragement from other ladies who unfortunately have been dealt a cruel hand… so thanks girls… my family too have been reading your encouraging posts and its given them some hope too.

Sending you all lots of love and thanks for thinking of me.

Love Jakki
xx

“I have feelings that i cant cope and i’m scared to be on my own… did any of you feel like this?”

Absolutely…
It was worse in the very early days, but I still have times when I feel I just can’t cope. I started seeing a counsellor last week, for this and other reasons.

I was scared to be on my own too. Partly because I dwelled on everything when I was on my own, and it all got too much. And partly because I was scared something would happen, and I’d be on my own.
I went through a period of not wanting to go out anywhere on my own, incase I keeled over or something.

Things are ok here at the minute, thanks Jakki :o)
I finished taxotere 3 weeks ago, and I’ll be seeing the onc from Weston Park hospital, tomorrow. So will speak to him about Tykerb… though I don’t think I’ll get it until I have further disease progression, if I’d even be able to get it then.

Lots of love to you, Jakki.
Dee
xxx

Daisypink

I have just read your profile and I am so sorry that you have had to join us but I am so glad that you have. To take the time out to send encouragement to another forum user, as you have done, when you are going through so much yourself says a lot about you.

Please take heart from all the posts from those who also have lung mets and the rest of us who wish you well.

Hang on

blondie

Jakki Jakki, I cringe when I see a new posting and remember how scared I was and hate it that some else has to feel this. I will tell you that I was dx with lung mets and supraclavicular nodes and quite a few more nodes in Nov 05. It has been 18 months since dx. I live in the US and tried lupron (prostap in UK) injections first to put me in menopause. The tumors progressed so they put me on a combo of abraxane and avastin for 6 months. My onc believes in trying chemo for 6 months and then taking a break until the tumors progress. My tumors have remained stable for 9 months and I go in May for a CT. My onc send me every two months for a CT. This combo worked well for me. I had quite a few side effects but made it thru. I will be able to use these drugs again since when I stopped they were still shrinking the tumors. I still work, laugh, play and enjoy life. You will find away to get yourself through. It takes time. It took me many months to have days without panic!! Believe me we all still have those days. Come here and vent anytime we all understand. Funnyface