Hi Everyone, I was told by my oncologist on Wednesday that I have multiple secondary mets in both lungs and surrounding lymph. I only had original diagnosis in may last year, i had lumpectomy in November, and radio finished in Feb. Th CT scan i had in December to map the radio was clear, so it has come on really fast. i started coughing in May, 4 lots of antibiotics didnt shift it. so routine chest xray done, and then CT scan to confirm. She has told me it is very rare for this to happen whilst I am still receiving Herceptin. (I have had 16 out of 18 now). Has this happened to anyone else?
Apparently I was weakly HER2 positive, I did not know this at my original diagnosis, so now I am wondering if I have had all the Herceptin for nothing. I have asked my Onc the “how long have I got question” but she is unwilling to give me an answer at this stage - “just lets see what happens with treatments”. She wants to give me Taxoter, (which I never felt worked as well on primary breast tumour, compared to the FEC), along with Herceptin (which might not be working as I have secondaries while on it anyway), and she want to seek approval for funding for a new drug ( I don’t know what it is, but apparently they have had some success in clinical trials). But whoever makes the decision is not too generous so may not get it anyway.
Honestly I am scared to death. I have a 4 year old boy who is my world and the thought of him growing up without a mum, is worse than anything I have endured so far. It’s all I can think about. My oncologist has suggested I apply for Disability Living Allowance as my sick pay through work is about to come to an end, and to consider cashing in my NHS pension by retiring on ill health (I am only 38). Do you think this means she is telling me stuff without actually telling me?
My husband refuses to discuss anything, except all his conspiracy theories about ‘miracle cures’ (hemp oil, vitamin B17, sour sop juice etc), which just winds me up - the wrong way!! I want to be positive, I really do, I was so good through all previous treatments but I can’t stop thinking that i am going to die soon - there is no cure, so nothing they can do. I feel like i need to prepare and make arrangements that I know won’t get done when I’m gone - what do people do to get through it. Am i alone in this, how long do people live with lung mets? so many questions, no one to talk to. I take diazepam to sleep, but that can’t go on forever, and I feel like I have a breeze block strapped to my chest whenever I Lie down. Worried, scared and angry!!
Dear Head in the Sand
I am sorry to read that you are having such a worrying time, I am sure your fellow users will be along with support and shared experiences very soon
You may find some of the information in our secondaries pages helpful, here’s the link where you will also find lots more support services, such as our helpline and secondary live chat, from BCC:
Take care
Lucy
Dear head in the Sand
Am very sorry to read your post and having such a worrying time. I can appreciate how easy it is to read in to what is being said to you by others. I am only at the beginning of this journey so cant appreciate quite where you are coming from but in my experiences with others, they are giving you advice which is good from the point of view of being able to claim any benefits that are available and also getting your NHS Pension is a good idea this will allow you to have what is rightfully yours, regardless of what happens to you in the future. I am unable to comment re Herceptin as I am negative so would not have it anyway, so cannot help you with that. Please remember all of us on here are in the same situation and can so support each other so well. I can not understand your personal journey as I am not you but am sending you very best wishes and positive thoughts Meg x
Thanks for your comments Coco0896 (Meg), I hope things go well for you on your journey, and your treatment is successful. Kind Regards, Tracy x
Dear Head in the Sand, I have been living with secondaries for over 14 years now. My secondaries however are in my bones. Do you know there is a great thread on here with other people with lung mets? Look on the left hand column, go down to the second one reading LIVING WITH SECONDARY BREAST CANCER and you should be able to find it. YOu will be able to talk to poeple in a similar situation as yourself. I go on to the BONE METS PLEASE JOIN IN thread which you can read and ask questions too.
I agree that you shouod apply for DLA. It is very helpful to have the extra cash. I saved my life as far as bills were concerned. You can ask your Consultant if he would be willing to complete a special form for you and the MCMillan nurses can help you to complete it, or speak to your breast care nurse, and your GP could help. Get back to us on here if you have questions as you go.
I am sorry that you have had this sudden diagnosis. It takes a long time to get your head round it all. We are here to lend you a helping hand. Sometimes we do not want ot upset those closest to us both family and friends and that is why the forums are so good. You can tell us exactly how you feel and ask as many questions that come along.
You may also be able to get a BLUE BADGE. You can use this to park yur own car but if you do not have a car and someone is taking you out in their car you can take the card with you to get access to parking spaces. Wishing you all the best, I agree with you that I am not with these new suggested wacky cures for cancer that people keep bringing up I hold trust in my team of specialist doactors and nurses at my own hospital. Val
Dear Head in the Sand
We with secondaries know what youre going through, its so difficult at first.
People can live a long time with Lung mets, Ive now got cancer in the lung, mine is called Lymphangitis (the lymph lines in the lung) and Ive responded well to treatment. I was first diagnosed in 2008 I decided after all my sick pay to retired on ill health and Ive had a fabulous 5 years and I mean to go on a lot longer.
I was very Her+ but stopped responding after 3 and 1/2years. I’m now on tablet chemo but the cancer is moving very slow after moving fast at the beginning.
Do apply for DLA now called PIP but do contact the Macmillian benefits advisor if you have one at your hospital (your nurse should be able to arrange it for you) I needed a referral from the chemo nurse. The benefits advisor took all the forms and filled them in for me under special rules DS1500.
Let us know the treatment you are going to have (the trail drugs) and remember its easy to get a second opinion if you want one.
Its a difficult time, life is very difficult sometimes but things will get better.
With love and best wishes
Sue
Dear head in the sand, am so sorry you have foynd yourself here. I was diagnosed last year with primary n secondary bone mets last year at age of 41. I have joined the Younger Breast Cancer Network (UK), where there is a secret group of younger women with secondaries. They are really supportive and understand what you are feelng and going through. If you message them someone will add you to the main group. I also asked to join secondary group too. I hope this maybe of some support for you. Buffy xxx
Hi Tracey,
ive had a similar timescale to you, dx july 2012 fec.t i felt fec was shrinking it but the tax seemed to make it harder. Had mx in jan and rads finished march. Started coughing may, onc and doctor thought it was hay fever. Routine scan june showed mets in one lung. Im triple negative and devastated. Im struglling daily and dare not ask the question. This weekni started exeloda chemo tablets. But i have terrible leg pain which is puzzling my onc. Told me jst to take paracetomel. I think i may have pulled a muscle coughing, but it this pain thats dragging me down as unable to go about my daily life. I hope you get the answers you are looking for and the treatment. Inhavent really found anybody with secondary in lungs either.
take care
lola54 x
Hi Head in the sand and Lollie.
My primary diagnosis was 13 years ago aged 36. Three years ago I was diagnosed with mets to lungs and in my lung pleura. although I am not her positive, I have been relatively good. I had 3 litres of fluid drained in the beginning but I have been lucky since. It’s really tough when you have your secondary diagnosis, I couldn’t see myself being here for long. You will find lots of support on the site. There are some truly remarkable ladies on here. X
DearDear Lollie54,
i am having pain in the legs too. Outside ankles, inside knees, and hips with dull ache radiating throughout legs. Blood test does not indicate bone mets at this stage but I’m having bone scan soon to rule it out. I have found Ibruprofen is working wonders as I am able to get on with things much better than I was before with the pain. It may help you too, worth a try. my Onc says it may be inflammatory response to what is going on inside - tabs seems to be working anyway. Hope it helps you too x
Should have said that the group is on facebook xxx
Head in the Sand, i’m very sorry to read about your situation. You are no doubt particularly worried that this progression occurred while you were taking Herceptin.
Unfortunatlely although Herceptin is an excellent drug and has prolonged survival in many patients, it doesn’t work for everybody. There are estimates that it doesn’t work for about 40% of patients.
I have a few suggestions that you could explore:
(1) You say your cancer is only mildy her2+ Does this mean your cancer is also hormone sensitive? If so are you receiving endocrine therapy, and if you are, would you benefit from a different type of endocrine therapy?
(2) Has your doctor discussed swithching you to a drug called Lapatanib? This drug also treats Her2 BC but works from within the cancer cell rather than the surface. This drug also treats Her1, Her2, Her3 and Her4 cancers). If you’re an NHS patient your doctor will have to get funding approval, but this is usually straight forward ( I received the drug within two weeks).
(3) Has your doctor discussed the TDM1 Trial with you? TDM1 is a modified form of Herceptin. The difference is it uses Herceptin as a vehicle to locate Her 2 receptive cancer cells, and then deliver a chemotherapy drug directly into the cancer cell. TDM1 is already licensed for use in the US, where it is called Kadcyla. I’m posting a link to an article below which I strongly suggest you read, as it addresses the problem you now have, and describes the TDM1 Trial.
Hope these suggestions help.
healthyliving.msn.com/diseases/breast-cancer/is-tdm-1-a-miracle-drug-for-advanced-breast-cancer-1
Hi LemonGrove, no I am not hormone positive, and no she has not discussed switching me from Herceptin she want to rebook at original tumour first.
she says I am not eligible for clinical trial (not sure what drug) but is seeking approval for new unfunded drug. I will ring tomorrow to find out what it is called and let you know. Thanks for your comments and support. X
Hi Tracy, so sorry to hear your news, my heart goes out to you. It’s good to hear the positive stories from the other ladies on here who also have mets., hopefully this will help you. I am also her2 + and I worry about recurrence , awaiting result just now of MRI done for lump near scar.
lemongrove,
i read on wikipedia that around 40% of people do not respond to herceptin, I was not sure if this was true, are there any other stats or research that you know of?
tracy, fingers crossed for the drug that is being considered xxx
Hi Tracy, so sorry to hear your news, my heart goes out to you. It’s good to hear the positive stories from the other ladies on here who also have mets., hopefully this will help you. I am also her2 + and I worry about recurrence , awaiting result just now of MRI done for lump near scar.
lemongrove,
i read on wikipedia that around 40% of people do not respond to herceptin, I was not sure if this was true, are there any other stats or research that you know of?
tracy, fingers crossed for the drug that is being considered xxx
Hi LemonGrove, I have just read the link you sent and yes it does sound very promising. I have looked into the clinical trials, via the link that was found on the page you sent and there is a centre near me that is participating (Swansea), although this is not the centre that I am currently receiving my treatment (Cardiff). However amongst all the mass of information my Onc gave me last week I do remember her saying something about ?going to Swansea for treatment, but at the time it was all a bit too much to take in, so I gonna ask her about it again next week. The only thing is this particular trial in Swansea is for people who had adjuvant chemo previously and mine was neoadjuvant. Not that that is in the exclusion criteria either but will need to check.
thanks very much for this interesting read - gives a little hope, where there was little before. tracy x
hi head in the sand, i have just read you post and i am in the same sort of situation i have been on and off herceptin since 2010 dec because its affects my heart, i have had lung mets since 2012 and i got them when i was having a break from the herceptin, plus i have skin mets on chest and one in lymph node so the herceptin have work when i am on it on and off because far its not in any of my other organs so far. but now i will be seeing my onc on wed to dicuss clinical trials and eribulin is one of them if it is funded for me, i am interested in the clincal trials that you have been told about in swansea has i have had about 6 different chemos so far and i am srongley her2 positive my treatment is also in the valindre my onc is rosie stevens. i would nice to hear from you and let me know what your treatment plan is. lorraine xx
Hi Head in the Sand, I’m really sorry to read your news. Everyone has already given you some great advice and info. All I can add is don’t worry your Onc is mentioning retirement and the DLA. I think she’s being helpful rather than thinking anything else. Some of us have been receiving DLA for many years. I was diagnosed stage 4 from the beginning, I was just a couple of years older than you at diagnosis and this was in 2003. I don’t believe cancer cells know what frame of mind you’re in so don’t feel you have to ‘think positive’ every waking moment. Between us we have lots of info and experience of treatments, do keep in touch. x