Breast Cancer Care Forum

Oh no, that’s such awful timing - mind you there’s no good timing for a secondary diagnosis. A lot will depend on how you’re feeling with the chemo as to whether you feel up to your holidays, so be kind to yourself and make sure you look after No 1 as your main priority . If you do want to travel you could use a single trip Eurotunnel policy for the hen party (assuming it’s not in Jamaica). Travelling across the Atlantic is much more difficult to get insurance for, due to the high health care charges both in USA and Caribbean (they are usually lumped together as a zone). I have used AXA PPP both recently and previously. It is an annual policy (and would therefore cover you also for the hen party trip if you were to do both). You would need to speak to them I think to clarify whether you are covered or not but I can’t see why not. Otherwise you will find many travel insurance companies will not insure secondary BC for USA etc except at an extortionate rate. I hope you had travel insurance in place before your diagnosis for these 2 trips as you would be able to claim for them if you are not able to travel as your current diagnosis wasn’t in place. Good luck Nicky xx ... View more

Hi We’re all entitled to see the scan picture and the written report but I think a lot of ladies don’t want the gory details (as has been said by Janette) so most oncologists don’t give the info out unless expressly asked to. I must admit I didn’t want to see anything like that for several years, the shock of the diagnosis was bad enough! However I do look at the scan picture and understand it more now plus I will read the report on the screen but have seldom asked for a copy of it. My oncologists have changed over the years and I’ve found once they get to know me more they understood  what I want to know. If you request copies of all your letters to your GP you can also get those. I know I do from my cardiologist as I requested them at the time but I don’t for my oncologist, however I have had copies printed off for me by my GP if there’s any particular one I want. As to waiting for the report I understand there is a general shortage of those radiologists/radiographers who can interpret the results, hence the longer wait. Bloomin’ frustrating for all of us though. Good luck everyone whether you’re a newbie or an old hand, we’re all in this together. Nicky x ... View more

In response to the question from silverlining I'm just over 11 years since secondary diagnosis. That was bone mets and I went on to get liver mets about 5 years after. I'm currently waiting for an MRI appointment to come through as my supposedly 'stable' CT scan has shown up a shadow on the liver that the oncologist hadn't seen (the report hadn't been written by the time of my follow up appointment so it just goes to show that the experts who analyse the reports do know exactly what they are looking for, unlike the less trained eye of the oncologist). Nicky x ... View more

Hi Like Helen I have been in IV treatments and still had travel insurance, I was probably the lady you are referring to as saying I’ve never been told I’m terminal, which is true. As someone, who doesn’t have BC has said to me, we’re  all terminal! Eurotunnel don’t ask any questions other than have you been told you are terminal ie no treatments available and weeks to live (their words not mine). They do have about 4 criteria which you have to meet such as are you fit for travel, are you stable, are you seeking treatment abroad which are all standard anyway. They insure single trip or annual for Europe only (as Helen has said, islands are no longer included and presumably neither are cruises) . Last costing I had was about £80 for my husband and myself for an annual policy. I have also travelled further abroad whilst on the treatment you will be continuing on, H and P (at one point in my SBC ‘journey’ I was slightly HER2+) and had no problem at the time getting travel insurance for South Africa or USA, but you do have to shop around for those companies (which are mentioned on the Travel Insurance thread) Good luck and hope you get away soon, a holiday is such an escape from this constant hospital presence! Nicky x ... View more

Hi We all know exactly how you feel when you get a secondary diagnosis, the shock and fear is awful. We do all learn to come to terms with this diagnosis and this often happens once you have a treatment plan in place. At the moment there doesn’t seem to be an active liver mets thread, there used to be, but we do hang out on the Bone mets please join in thread, even if we don’t have bone mets.  I have been living with bone mets since 2008 and liver mets were added into the mix in 2013 so I do have experience of liver mets. Depending on your receptor status for your primary you will follow a treatment path for that unless the oncologist thinks that your secondary is not the same as your primary. As you’ve mentioned HER2+ you will have a treatment plan based around that, unless anything is different. Once you know what that plan is you can look down the list of thread topics to see if there is an active thread where you may be able to find out more about that particular treatment. Otherwise asking other questions etc works. Hopefully you get some other responses as well and you also find out what your treatment will be quite soon, although it sometimes seems to take a while for the oncologists to get everything organised as extra scans can sometimes be needed. Good luck Nicky x ... View more

Hi I haven’t had this myself but there is a Pertuzamab thread that I bumped up for someone else the other day. Have a look out for it and maybe copy and paste your post onto that thread as someone on that combo might be able to help. Otherwise I suggest speaking with your chemo nurses or oncologist but I know they often have no real experience of what to do with non standard SEs! Despite that they are brilliant at the job they do looking after us during chemo. Nicky x ... View more

Bumping up ... View more

Hi Sorry you’ve not had any replies but this often happens if there isn’t anyone currently on the treatment, or trial, that you are on. I think there is a paclociclib (sp?) thread somewhere which I’ll try to find and ‘bump’ up for you to read or post on. As this drug is only available on the NHS for 1st line treatment, and not for old timers like me, there aren’t so many ladies on it as some of the other more established treatments. Nicky x ... View more

Hi alison Ive not had bad neuropathy myself, just very mild however a friend of mine has. Her chemo nurses suggested she iced her feet whilst having the infusion (of a different chemo) and this she said helped. I’ve also heard of some chemo units having ice gloves. All similar in practice to the cold cap. Hope this helps and you’re able to tolerate these SEs Nicky  xx ... View more

A quick update on my last post. It looks like the scan isn’t completely stable ☹️ I had a call, finally from my onc yesterday and I need an MRI to check things out. Will let you know once I know more. As I said to OH yesterday this is not unexpected but it’s certainly unwelcome! Nicky x ... View more

Hi  Going on the ER and PR figures you’ve written it looks like she is 7 out of 8 on the scale of measurement for them. That would make her highly hormone positive, not triple negative. Maybe check with her oncologist about her ‘scoring’ for them both. If she is triple negative I agree that a hormone treatment would not have any benefit. Good luck with the surgery and post recovery. Nicky   ... View more

Bumping up for elliejane ... View more

Hi elliejane I had that combo of chemo back in 2013 when it was assumed I was HER2+(long story). I found the docetaxel bearable, after some severe nerve pain after the first infusion. After that I got the ‘usual’ side effects such as hair loss, tiredness etc. I took the steroids as prescribed and did not suffer any nausea which I was dreading as FECchemo made me feel so nauseous. I did get mouth ulcers but I found by sucking ice cubes during the infusion it stopped them on subsequent cycles. I had learnt this trick from the forum and when it was explained that it was like the cold cap that it freezes the blood vessels I worked out why it worked! I used to freeze a diluted cordial drink into ice cube trays and then put them in a flask to keep cold whilst on the ward. During the infusion I just opped them in one by one to keep my mouth cold. I found taxotere so much more doable than FEC. The other way to check out SEs is to check the main part of the forum where lots of primary BC ladies will be on it (there’s not so many of us secondary ladies having it at present). I learnt all the top tips about what to expect by checking out the tax/docetaxel threads. The only difference is, if I can remember correctly, for the first infusion of all of them they tend to give it over 2 session one day after the other so they can assess if you hace any reaction to any of the 3 drugs. You also have to be observed for several hours after the Herceptin infusion to make sure you have no reaction. This is tedious rather than difficult as you will just want to go home! once you are on the H and P combo it is very straight forward and no noticeable SEs from what I can remember. I hope that helps and I will also try and find the old thread that was called per Pertuzamab/Perjeta which might be worth posting on or at least reading for some insights. Good luck and although it’s a pain losing you hair again (I know, I’ve had this twice as well) you are at least getting on with your treatment and dealing with the pesky mets! Nicky xx ... View more

Hi ladies Another one of us being busy and not having time to post.  I still find this new layout less user friendly and have generally been posting less on the forum therefore I'm not logging on as often. However, here goes. Latest scan results which I got yesterday show I'm still stable - hooray!  This seems very close to the last set of results and it is! It took ages to get the last ones done so it was only 2 months ago I actually got those results (a month after the scan itself).  However I am aware this is down to a shortage of radiologists/radiographers to interpret the scans not just in our area.  As it is my oncologist talked me through the scan itself (it's always on their system within minutes of it being done) but the report itself wasn't available yet.  I just hope he didnt miss anything blindingly obvious! He is going to phone me anyway once he has it.  So I continue with the current treatment which is far easier to cope with than most of the ones I've had. This is of course 11 years on since my secondary diagnosis - almost to the day as of course I was told about it on April Fools Day! So between our holiday and now I've just been keeping busy.  The holiday, as I said, was fab. A great two weeks visiting places we've never seen with beautiful scenery - bright blue seas, wonderful sunsets etc and really brilliant weather.  Lovely and hot but none of the humidity you usually get in Florida.  It did take me a while to get over the juet lag but no doubt the thought of getting another scan done just after I got back didnt help! We had a busy few weeks once we were back, visiting YD at her restaurant in London plus then my birthday and finally son in law's birthday on the same day as Mothers Day.  I ended up doing far too much work on Sunday as poor OH was not feeling well (which is unlike him) with suspected food poisoning.  I would  not have taken on a lunchtime celebration if I'd known I would be cooking and tidying up, hmmmmmmm. Anyway a nice, if busy day.  It all calms down a bit now which is nice and looking forward to some better weather - however we did have a frost last night so I'm not sure when it's going to show it's face again.  The one thing that is plaguing me this year though is the tree pollen, boy am I suffering. This happened last year and my eyes were quite itchy and sore, plus lots of sneezes of course.  This year it's so much worse.  I suspect it's because it's been wetter so the trees are all coming out in blossom all at once in one huge burst.  I will be off to the chemist later to try to get some non drowsy meds, having not suffered with hayfever other than the last couple of years I'm not sure what's what. Hope everyone is doing well.  Sorry to hear about YD, Carole, it seems there's alot of infections around which arent clearing up quickly.  Touching wood that I have missed them so far.  Other than OH feeling rough at the weekend we all have managed to avoid them - bound to get something now! Lily, hope all the family is doing well especially daughter who's cooking the next grandchild!  How is Mum? That goes for you as well Carole. My Mum is doing well but I think now noticing the loneliness in the evenings.  She does have options which we will explore ie some very good retirement homes nearby but at the moment she is OK living in her own home.  It does mean my week is more involved with making sure she is OK as my brothers live further away and work full time.  I'm sure this sounds familiar! Lisa, how are you?  Off to Florida soon?  I know you normally go around Easter time.  Anyway, must sign off, have to get car into the garage for a minor repair to the door handle which has come loose - how odd! Nicky xx ... View more

Hi I am assuming from your message that you have primary BC and looking for support about hiw to live after your treatment has finished. Your post is actually in the secondary BC part of the forum so you may not get many replies from ladies in a similar position to yourself. If you look At the the front page of the forum there is a section called Moving forward after Breast Cancer. If you posted the same comments on there I’m sure you will get more replies. Good luck Nicky.  ... View more

Hi I just wanted to say that your post has gone into the secondaries part of the forum. The title of the section ‘Treatments nd Medical Issues’ is very misleading as I have pointed out before to the site administrators. It’s not that it’s in a place it shouldn’t be but I don’t think you will get many answers, especially those form primary BC ladies. Maybe try posting it again in the main section of the forum, I’m sure there will be many ladies in the same position that can help. Good luck Nocky x ... View more

Hi elliejane I just wanted to add a message of support as I know what I was like when I was waiting to find out my treatment plan for secondaries, I kept checking the forum to see if there was any information I could use or would help. Well that was 11 years ago (yesterday in fact - a lousy April Fools joke!). I had my diagnosis of bone mets in 2008 and a further liver mets diagnosis in 2013. I have been on various treatments since then, some more invasive than others. I am also hormone positive so was on Tamoxifen after my primary and my secondaries showed up whilst I was still taking it. Other hormonal treatments work in different ways to Tamoxifen so it is still possible to have those even though Tamoxifen is no longer effective. Depending on what your scan show your oncologist will recommend the right treatment for you. We are all different and some of us have different treatments at different times, there doesn’t always seem to be a set path to take. I hope after tomorrow’s appointment you have some clear answers nd know what treatment you will be on. Do come back nd ask any questions, someone is bound to be able to help. All the terminology is difficult to understand at first so, again, ask us any questions if some things aren’t clear. Good  luck Nicky x ... View more

Thank you blonde for giving us an update nd also the message of hope that it gives us SBC ladies especially those who are recently diagnosed. I’m glad you are coping with all that life has thrown at you as it sounds like you have had a particularly tough couple of years. Nicky xx ... View more

Hi aggy  Youre right, kidney mets does seem very rare, in fact in my whole time on here since my mets were diagnosed 11 years ago I don’t think I’ve come across anyone with kidney mets from BC. Possibly they could be a primary kidney cancer or mets from another type of cancer which would be more than bad luck. Alternatively as has been said, maybe they are not mets at all. I hope your Mum gets her treatment started for her brain mets nd that any subsequent, and systemic treatment she may have afterwards sorts out any other mets that have shown up. Nicky x ... View more