Breast Cancer Now Forum

Hi Sorry to hear about your Mum, it’s always feels quite devastating to all when you get a secondary BC diagnosis. However, over time, most of us have learnt to live with it so I’m hoping your Mum will too. As to your question about the mutation I’ve not heard of it on here so you may not get any responses. If it’s something your Mums oncologist has said it would be worth asking them the next time you see them to see how this might affect your Mums treatment. Someone else on the forum might have heard of it and be able to point you in the right direction though. Good luck with the scan and that should show whether the current treatment is being effective. Nicky   ... View more

Hi Jacque, I realise I didn’t reply to you after you’d asked me some questions - how rude of me! I will send you a PM. Nicky x ... View more

Hi Sorry for absence, I never seem to get around to updating on this thread, just give out advice and support on the secondaries board! Generally lots of appointments and things going on to investigate fluid build up. I am hoping to have a drain done next week which should ease things as it is now getting quite uncomfortable. Luckily our hospital seems to still be accepting patients for more routine procedures and not shutting everyone out like some seem to have done. As ever the oncology are being brilliant and being available to answer any questions by text or phone call. Face to face appointments are also being used. So, we soldier on...... Yes, Carole, we’re all back in lockdown again! We didn’t get into any of the Tiers which were more restrictive (like Lily did) where we live so didn’t have a week or more of limitations prior to lockdown so still had our freedom. My brother lives in the Bolton area so had been under strict limitations for weeks ahead of the rest of the country. I am not being shielded this time, as other in the ‘extremely vulnerable’ group were last time, just to be extra careful and make some conscious decisions about what and where. I have resurrected my Tesco deliver slot for the time being but did go out to the smaller supermarket near us on Thursday, the first day of lockdown. It was completely deserted, with just me and one other shopper in it, what bliss, nothing like the queues of people last time (according to what YD used to tell me when she did my shopping). If it stays like that I will go occasionally for odd bits but wouldn’t queue or go in if it was busy, after all we’re wearing masks now and all seem to be observing the ‘keep your distance’ signs.  YD has come out of London again but this is more down to not being able to work from home rather than any other reason. In lockdown 1.0 she was furloughed so had nothing to do in London and came to childmind our grandson, who wasn’t at his own childminders. This time he is (thank goodness for all concerned) and she has a full time job. She’s staying with her sister again as they have space for both of them to be able to work from home. It means we can also see her (plus our other daughter and GS for walks - separately of course) Let’s hope it’s only for 4 weeks! Hope you are all coping, whatever life it throwing at you. Nicky x ... View more

Hi I don’t know enough about a persons individual tumour marker counts but I don’t  believe they can be zero. I think even people without cancer can have a certain ‘score’ although this would not be raised as it is with people who do have cancer. It also doesn’t mean everyone’s tumour markers start off the same number so the baseline may be different in each individual (or so I understand). Oncologists tend to use them to notice the trend rather than a diagnostic tool. If the trend is consistently downwards, as your Mums is, then it indicates that treatment is working. If it starts rising consistently it might mean it isn’t and therefore other investigations may be needed such as a scan. Just because it rises didn’t automatically mean a treatment has stopped being effective,  mine went up once but the scan showed it was still working. As I’ve said, it’s more about the trend. Remission is generally used as a term with primary BC, SBC is always there and almost always needs constant treatment whether it’s chemo, hormone or more targeted treatments (triple negativeBC being the  exception as there can be gaps between chemo if no other treatments are appropriate) You can get No Evidence of Active Disease (NEAD) which is what we all hope our treatments produce, or that the mets (metastases) are stable or shrinking which is also good. Hoping this helps with your question, someone else may be able to add more information. Nicky ... View more

Hi Hannah Sorryto hear you are struggling with your treatment, mouth ulcers can be awful can’t they? Although Ive not had this combo I remember when it first started being used and lots of ladies who were on it complained of mouth ulcers. It might be worth searching for that thread to see what was written? I think that generally the dose of everomilus (not sure if that’s spelt right!) was reduced but can’t be certain. Hope they clear up or you find a way to cope with them soon. Nicky x ... View more

Hi puglia  I didn’t  have any mouth or taste issues as far as I can remember, just the ‘usual’ side effects of sore hands and feet plus the issue with my gut. Again, it might be worth posting on the Xeloda thread as there are other ladies currently on it whereas my treatment with it was quite a few years and I may not remember all the side effects I had.   Chemo brain and all that! Nicky x ... View more

Hi  Sorry to hear you are having problems with capecitabine. I was on this treatment a few years ago and also used to get stomach upsets from time to time, although not as often as you have said you do. It might be worth posting the same information on the Xeloda/Capecitabine thread as any current, or previous users of the treatment might be able to help. I do recall when I was on it that it was quite a common problem and seemed to be more noticeable in the ‘week off’. It might also be worth mentioning to your oncologist, a dose reduction might be all that’s needed to stop these side effects? Nicky x ... View more

Hi Gina, wow that is a big weight loss. I have previously lost weight at certain times of my time of living with SBC, mainly due to stress,  luckily my appetite has returned once I know a treatment is working. I have noticed that I have gained weight whilst on hormone treatments and lost weight whilst on chemo. At the moment the treatment I’m on, an inhibitor drug,has caused my appetite to reduce a lot. I try to eat more earlier in the day when my appetite is bigger but by the evening I’m eating a much smaller portion than I used to. I’ve also noticed that I don’t fancy certain foods nowand can be very particular about what I want to eat.  One of the side effects of this drug is a loss of appetite, as with a lot of treatments according to their fact sheets, but this is the first time I’ve really noticed it. Your dietician should be able to give you high energy supplements like drinks particularly if you don’t want to eat much, maybe ask them for more help if you struggle eating ‘normal’ foods? Nicky x ... View more

Hi Although I’ve not had heart problems on H and P I have had them due to previous chemo. Cutting a very long story short there are heart medications that will help protect the heart during this time. You do need to speak to a cardiologist or ideally a cardio-oncologist who will know which meds to put you on. When I 1st had my problems back in 2013 I was referred to The Brompton Hospital in London that had just set up a cardio-oncology unit for precisely the problems that chemo etc causes for long term, and short term, cancer patients. I was seen by a fantastic consultant who I remain under the care of and oversees my medication that I have continued to take as I am on constant treatment, as all of us secondary ladies are. In fact I’ve recently had a drop in my LVEF on my newest treatment but he is overseeing how my meds are tweaked. So I would get in touch with your oncologist once they are back and insist on a cardiology appointment if he doesn’t know what to do (believe me there can be a lot of not sharing knowledge between the 2 specialist areas), or ask for a referral to a specialist unit if your local hospital is unable to help. There are a few threads about this on the main forum in the Targeted Therapies section and some primary ladies have had similar issues with Herceptin and have had medication prescribed by their local cardiologist or oncologist, it will just depend how well educated your oncologist is about what can be done. Good luck and have faith, you may need to come off H and P for a short time whilst the heart recovers but you should be able to continue with it once suitable heart meds are sorted. Nicky ... View more

Hi It is always a scary time when you’ve had a CT, or other, scan. I’m assuming at the moment you’ve not got the results but just that you know you have a tumour and that 6 nodes are affected? Although it’s difficult try not to think about what that scan results might show, and I’d suggest you don’t Google anything as there’s a lot of information out there that is out of date, I’d wait until you have more information.  Once you do know if it has spread and therefore what you are dealing with you can always come back on here to ask any questions. Someone with the same experiences or treatments as you should be able to help. If you need to ask questions at the moment the nurses on here can help as can speaking to someone on the helpline if you need to talk.  All of the  SBC forum members know what it is like to get a secondary diagnosis but from what you have written so far there may not be any specific areas we can help with at the moment,  other than giving support. Nicky x ... View more

Hi It can sometimes be difficult to determine between bone mets and other degenerative disease but I expect from what your oncologist has said they do think it’s bone mets. A bone scan will help determine this. It isn’t unusual to be diagnosed with primary breast cancer and very soon after (or even at the same time) secondary breast cancer, sometimes it just shows up on a routine scan and quite often the patient doesn’t know the bone mets exist if they have no symptoms. The continuing treatment will be systemic which mean  it will treat the whole body and the only extra treatment I think your Mum would have would be a bone strengthener. Hormone treatments generally work well, given the number of people on them who are on this forum, but occasionally they may not be effective. A scan after 3 months of treatment is usual and would determine if the treatment is effective. If it’s not there are plenty of different ones available for hormone positive, HER2 negative secondary BC. Hopefully this won’t be the case and your Mum will adjust to living with secondary BC and get a long time on this, her first treatment. Nicky ... View more

Hi From what I know about tumour markers (and it’s not a lot!) I’d say obviously the lower they are the better. However what might be one person’s starting point may not be the same as someone else’s. I’ve read that even different laboratories will give different results for the same patient. What the oncologists use them for is a non intrusive sign that a treatment is working as generally the trend will be a reduction in the number. Having said that mine have before now risen when a treatment was still working. My hospital didn’t used to use them but they do now so it doesn’t matter for how long you might have had SBC it will still be the trend they are looking at. Any real anomalies or sharp rises would be invested further generally with scans. As tumour markers are tracked using blood tests they don’t need any further intrusion. Hope that helps and someone else may come along with a more comprehensive explanation. ... View more

Hi Theres no secret I’m afraid, just keep taking the meds! I have always educated myself about the types of treatment I should be having, and extra investigative procedures such as biopsies plus discussing the treatment options with my oncologist. This wasn’t learnt immediately, just over time and isn’t necessarily what everyone would want to do. Nicky x ... View more

Hi Gina Over the 12 years or so since my secondary diagnosis I have maintained a healthy diet and haven’t gone one way or the other with my food choices, the same as pre cancer. Some people choose to change their eating habits dramatically others, like me, stick with what they did before. It’s all up to personal choice. If you’re worried about losing weight maybe a low fat diet isn’t the right way to go. You’re best to speak with a nutritionist or member of your oncology team if you are worried about what diet you should follow. Nicky x ... View more

I agree with Shi. Lots of people read each post but don’t add a comment as they may not have any experience of their own to add. In fact I viewed your post earlier but don’t have TNBCor lymph node involvement and was therefore going to see if anyone who had the same would add their own experience. Weekends are also a very quiet time on the forum, as I’ve noticed over the years of being a member, so you may not get anyone who has the same diagnosis able to share their experiences during this time.  I do hope your treatment works well for you, with few side effects and please use the phone lines available as Shi has suggested if you need to speak to someone. Hopefully someone, in a similar position to you will respond and offer advice. Nicky ... View more

Hi Interesting! Recently our oncology department started using a local private hospital’s CT scanner (due to COVID) and I only had to drink water, not the horrible drink disguised by flavoured squash 🤢. I put it down to  a different type of scanner as I’d also not needed to drink the awful stuff when I had a pre-trial scan at The Marsden many years ago. However my recent scan at my local hospital, using the same scanners as pre COVID, I now just have to drink a litre of water before I get to the hospital to avoid the waiting area and waiting with other patients. My scans still seem to spot the same changes so I’ve no idea - especially after having SBC for over 12 years I’ve had far too many of those awful drinks and could have been spared them! Nicky x ... View more

Hi Westeringhome Good idea to stop reading and quit whilst you’re ahead! There are some inspirational stories on this forum but if you dive into the big Google machine you will read very frightening, and out of date statistics. To be honest they’ve not been updated since I had my secondary diagnosis nearly 13 years ago. So give yourself time to adjust, get to grips with your treatment and read or research whenever you feel you want to. We do have an excellent Bone Mets thread which has been active for many years and is a good place to start if you wanted any advice. It also makes you aware you are not alone with dealing with this dreadful diagnosis, were all in it together. Nicky x ... View more

Hi I haven’t taken Adcal for years and my calcium levels are always slap bang in the middle range. I do have a calcium rich diet I suppose. I hated the tablets when 1st prescribed and went onto the soluble ones but as has been said, that drink was not very nice either. My oncologist has stopped prescribing the tablets for me many years ago. I should be taking a vitamin D supplement I expect as there are other health benefits as well as for cancer. Nicky x ... View more

Hi Pri19 I won’t go on too much about Alpelisib as this is a thread about brain mets (I may start a thread about the treatment if it is available to more of us). However I found anti histamines helped enormously after a terrible rash happened about 10 days after starting on the tablets (other users in USA mention the same). I used them for quite a while but gradually stopped them over time and the rash has not reappeared. Nicky x ... View more

Hi Although I don’t have brain mets I do have liver mets. What I was responding to was the fact you are on Piqray, you’re the first person I’ve come across who is also on this drug. I started it back in June, had lots of ups and downs with the side effects but they seem to have sorted themselves out, for now. Hope you get on with it well and it sorts your various mets out. Nicky x ... View more