Breast Cancer Now Forum

Hi Gillyflower Sending you a big hug as I know what it’s like to have progression and any changes that that might bring. Back in 2013 my bone mets had gone from a very few (2 or 3) to extensive, mainly because I wasn’t scanned more frequently which meant the spread as not caught early - at least yours has been. I then started on Denosumab, having been on bisphosphonates up until then. This has held the bone mets stable since then even though my liver mets have changed and therefore treatment has changed. It’s tough getting your head around this, I have also had a situation where I haven’t been told the full story, of the CT results - maybe they just want to spare us the detail, which doesn’t help in the long run. I would definitely get a second opinion which I have felt has helped me in the past either to back up what my own oncologist has said or to give me other options. A difficult time but I’m sure in a few days you will come out with a more positive view, you do seem normally so positive, so give yourself time. Nicky x ... View more

Hi again  Sorry if it sounded like I was saying you need to use a generic names for the treatments it was just if you wanted to search on here for certain terms or names used you may not find many references if you use the licensed name. Also I believe in the USA you can get a liquid biopsy done as more of a routine than we can here in the UK? That will give more information about your particular BC in terms of genetic mutations etc, I think biopsies done on solid tumours still only check for a broad band of receptors etc. I only know this as in the UK I have had a liquid biopsy done (in essence a particular blood test rather than anything this unusual!) which has picked up certain gene mutations which have not been picked up previously on a solid tumour biopsy. Treatments in the USA are generally ahead of us (in the UK) so it could be that a different treatment would be available to you if certain mutations were found. The main reason for this is that we have a national health service which is ‘free’ for all (we do fund it through taxes) and therefore a cost effectiveness has to be determined for each type of treatment that we can access. Newer treatments cost more and therefore aren’t readily available until the cost price of the drug comes down enough.   Nicky x ... View more

Hi and welcome to the forum Im guessing from the fact you wrote ‘Mom’ that you are in the states or Canada? This forum is based in the UK but everyone is welcome from wherever they are and we there are other users from over the pond on here! The only difference will be is that we will probably respond in the middle of your night and vice versa. The other difference, which I’ve noticed, is that in the UK we often use the generic name of a drug rather than the manufacturers name. So you may need to look on threads about anastrozole (Arimidex) or  palbociclib (Ibrance) for other users on here having the same treatment as you. You have had a difficult time family wise with this awful disease but it will make you aware to be extra vigilant with any changes. I expect some time in the future other genetic mutations will be discovered that link all your family cancers together, as yet only the BRCA1 and 2 are identified as such. There are lots of treatments available for your type of cancer, it is the same type as I have and many others on this forum have so there will be lots of users who can share their experiences of the treatments you are on. To add comments or ask a question to any other thread on here you just need to ‘Reply’ to the last comment or to an earlier comment, your post will be added as the next one. Be careful how much private information you give as well, this is an open forum and can be read by anyone, although only added to if you are logged on. Good luck with your treatment Nicky x ... View more

Hi Gina Dont say where your mets are so it’s difficult to say what could be happening or why. Sometime there can be referred pain in the shoulder from liver mets but that might be something that isn’t affecting you, it could just be a bit of overdoing things. If you’re concerned I would speak to your oncologist and either request a scan or check your tumour markers (if you have them measured).  Sorry I can’t be of more help but I know that any extra aches or pains cause us increased anxiety so I just thought I’d reply with what info I’ve come across. Nicky x  ... View more

Hi Melinoa  Sorry to hear of your recent spread. I have had liver mets for the past 7 years and haven’t had any problems with appetite etc so I can only assume it’s the spread to your pancreas that is causing this. Hopefully the stent will give some, if not a lot, of improvement. To regain weight you can always speak to a nutritionist who will be part of the oncology team. There could be some supplements that help without filling you up too much if you appetite is small. If the liver is also causing problems hopefully whichever treatment you move onto will help with the liver and once that is more controlled your appetite will pick up. I must say that for the 12 or so years I’ve been a member of this forum (since being diagnosed with mets in 2008) I haven’t come across anyone with spread to the pancreas so I’m not sure if you will get any specific answers relating to that. However plenty of ladies unfortunately have had or do have spread to the liver so there may be some more help or advice from one of them. Nicky x ... View more

Hi ladies, especially Angel eyes who is gathering good info about ports. Personally I’d say you shouldn’t do housework - but not because of the port ha ha - it’s just bad for you! For me I can do anything I had done before, no problems lifting or anything. A friend who had one fitted for her primary said ‘ that’s the end of sleeping on your front’ but even with my fairly prominent one I can do without it troubling me or me noticing it. Even the seatbelt issue I mentioned at the beginning went way after the wound had healed - although it’s still annoying where it is sited for both this reason and being more noticeable. I also had quite a bit of bruising, but no pain afterwards and it was used probably about a week after it was put it, but only because I had been able to get it done in plenty of time before changing treatments. Other ladies I know who had one in had theirs used a just a day or so after, as some of you have, so it doesn’t seem to matter about when it’s done. As lovemama has sent a photo of her port and where the tubing goes I would say mine just looks like a slightly prominent vein but only if you really looked hard for it. The tubing is very fine and although it had to go over my clavicle it is a tiny bump at that point.  Nicky x ... View more

Hi Gillyflower I have had the ‘liquid biopsy’ done a couple of times. The first time was at The Marsden when I was applying for a trial and was done without me really understanding what it was for. Anyway it picked up 2 mutations one for CDK 4/6 and one for PI3K. Unfortunately I wasn’t able to start the trial due to problems with my overall blood counts at the time - trials have very strict criteria. Moving on 3 years my oncologist said I could have a liquid biopsy done, at a cost of £2500,  but I thought it was too high a price but mentioned to him that I thought I’d had one done a few years ago at The Marsden which had picked up these mutations. At the time I started on a new chemo so the mutation side wasn’t important. Once that was shown not to be working (earlier this year) I was offered another liquid biopsy , this time on the NHS and presumably done to COVID as it’s obviously less intrusive than a physical biopsy. This again came back showing the two mutations and from that I have since started Alpelisib which targets the PI3K mutation. I think the liquid biopsies look for mutations for which treatments have been developed for, maybe in future they will find other mutations? From the Novartis website (pharma company who developed Alpelisib) this mutation is seen in about 30% of BC, so quite high. Just to say I have also had several physical biopsies done, on my liver lesion, at none of them mention these mutations. The liquid biopsies pick up ‘circulating DNA’ from what I’ve been told. Also when I saw my oncologist to sign the paperwork for consent for Alpelisib, he was very chatty and read out an article from a recent oncology conference where one of the leading speakers was asked about whether these liquid biopsies should be offered as a matter of course. The answer was ‘only if the patient is able to access the drug’ which unfortunately at the moment most of us can’t. Nicky x ... View more

Hi Angel Eyes Just jumping in here about the port. Some hospitals fit them on the arm (under the skin) and have done fir many years. A lot of others fit them in the chest, with the line (again under the skin) going straight up to the neck. It will depend on where your hospital prefers to fit them. I had a very old style port fitted fitted, not one of the newer, smaller power ports, so mine is visible but I disguise it with the right necklines etc. The newer ones, which my hospital started fitting soon after I’d had mine done are not visible. In fact the only benefit of mine is the chemo nurses don’t have to search for it, it’s staring them right in the face (!), whereas quite often they have to feel for the smaller ports, which means they are pretty well covered/located in the breast. Maybe one of the ladies who’ve just had one fitted can put your mind at feast if you choose to have one. Nicky x ... View more

Hi Hannah i started alpelisib at the end of June. I was fine for about 10 days then came out with a horrendous  rash which was classed as Grade 3 which was pretty bad. I had to stop alpelisib for 10 days and put on high dosage steroids to calm it all down. I restarted the drug but suffered from awful itching later that day for about 24 hours but didn’t get the rash. I stopped it again for about 3 days before starting again on the slightly lower dose of 250mg per day plus masses of anti histamines. I have weaned myself off the antihistamines and now have no side effects, or none that are needing further medications.  I have been given a blood glucose monitor as that is also a big side effect (for about 50% of the trial population) but my levels are completely normal. The other major SE is diarrhoea, again affecting about 50% of the trial population, but fingers crossed that hasn’t got me yet! Just giving you some information about what to expect. In all I’ve been on it 2 and a half months but with a few gaps in between. My last scan showed about 25% improvement with my liver mets and tumour markers have continued to fall substantially so it is something that is working for me at present. If eventually you also start on this drug, and hopefully so does BecksD we can start up an identifiable thread in the Treatments section as this current, shared information is rather hidden away in this thread. Nicky x ... View more

Hi Becks Sorry you find yourself in a similar position to me. I don’t know about the wording of the request that my oncologist sent but he basically wrote to all of the pharma companies about all the inhibitors, both the CDK and PIKc3a ones as I have mutations to both genes. He didn’t think he’d get any positive replies but did from Novartis (for Apelisib) and one of the others for a CDK inhibitor. It has been given to me on compassionate grounds (which I had heard of in the past). It might be because of the number of treatments that I’ve now exhausted due to the number of years I’ve been living with SBC. Maybe if you’ve not had quite so many the company feels there are other options available? I’m currently on about line 10 or 11 of treatment. Im really sorry I can’t be of more help, I know how difficult this is. I hope you get some other angle that you can explore or try again? Nicky x ... View more

Hi Yes it is well known about the effect of certain chemos and Herceptin on heart function but what isn’t known is that having cancer itself can change your heart function. I have been under the care of experts at the cardio-oncology unit at The Royal Brompton Hospital for over 7 years now. My heart function was so impaired by having FEC chemo I needed a lot of treatment (both medications and ‘procedures’) done to get it back to normal function. The unit is/was a research unit specifically set up to see patients with cancer who experienced heart failure or other problems. It was all done for me under the NHS after my oncologist referred me there, following a TIA (mini-stroke).  I have spoken about their work before both on here, on the radio and in the national newspapers but it’s good to mention it again so thank you for bringing it to other members attention. There are regular cardio oncology seminars worldwide so the news and research should be more widely available at a local level now whereas at the beginning it was only London and I think somewhere up North. In fact my case has been referred to at these global conferences (pre-COVID) as what can be done given the right cardio treatment. I joke with my consultant that I’m his No1 guinea pig as I’ve had it all thrown at me! However I’m so grateful for the work they’ve done and to have been able for them to use my case for research purposes with a view to what I’ve had done becoming more widely available for cancer patients. Nicky x ... View more

Hi ems I haven’t had this happen myself but just wanted to say how frustrating and disappointing this must be after 6 cycles of chemo. Quite often when a treatment is more targeted to a particular receptor this can happen as it is possible to have different types of Breast Cancer present at the same time because it can mutate. I know this happens as I am classed as hormone positive, HER2 negative but at times have shown to be HER2 positive and, when I had my liver resection done the lesion was triple negative. However with chemo I think it’s more unusual. The good news is the tumour markers have dropped a lot and the follow on treatment should continue that trend.  Maybe someone else will have more experience of this and be able to help but just thought I’d reply.   Nicky x ... View more

Hi Gloria Annoyingly I’ve just typed a reply and it didn’t save or let me copy it so here goes with my 2nd attempt. The title of Community Champion is given to forum members who have been active, and pro active, over several months or years. As such I didn’t have a say in becoming one and have no extra insight to other forum members profiles etc that anyone else would have. Having said that I have also realised that funnyface hasn’t posted for some time now and was wondering about her. Sometimes individuals or groups of  forum users choose to communicate on other forums, mainly when this forum has had another re-incarnation which makes it less user friendly. Maybe she has moved to another forum or uses one in the USA where she is based? Sorry can’t be if more help. Nickyx   ... View more

Hi Lucy Im guessing that there are no current members of the forum who have skin mets which is why you’ve not had any shared experiences. From time to time there has been members with skin mets but at the moment I can’t recall anyone who has written about them recently. I hope kadcyla works well for you, it is a systemic treatment as all chemos are, so it should tackle your skin mets along with any other mets that you have been diagnosed with (I recall from other posts that you do have other mets, I just can’t remember the details). Good luck with all of it. Nicky x ... View more

Hi As someone who had this regime I’d say that you will find that it having chemo is really noticeable in your energy levels and general fatigue. I had this a few years back (when I was weakly HER2+ so unfortunately it wasn’t the right regime for me - a long story!) and once I got onto just the H and P element of the treatment I realised how much I had been ‘coping’ with the chemo , but it had really affected me, more so than I thought. Therefore 3 weekly infusions of Hand P, which I found didn’t give any undue side effects was so much easier.  As to whether your scan will show NED it’s difficult to say. Bone mets, whether they are healing or not, always show up on scans so technically they can’t be NED (maybe NEAD - no evidence of active disease) would be a better description of them. The liver mets, lung nodules and breast lump should still continue to respond to the Hand P so even if they are still visible they would hopefully continue to shrink or stay stable. Nicky x ... View more

Hi helenahen Sorry to have you join us on the secondary part of the forum - and thanks for the mention in your post, I’m glad I’ve been of help! There is a current thread on the Treatments and Medical Issues part (in the secondaries section) called Paclitaxel Buddies which you may want to join in on. You can always copy and paste your post from here if you are tech savvy! Saves you typing it all again.  If you are able I would get a biopsy done and take part in the research. Although the drugs may not be available yet there could be something in the future, or that is already in the trial stage, that could be used further along the line. Starting on chemo (paclitaxel) at this stage is quite appropriate as several other treatments haven’t got rid of the nugget little lymph nodules, chemo will hopefully knock them right back and you can then be on a hormone treatment to keep them that way. Or that’s what’s worked with me in the past. Good luck with the treatment and taking the steroids, they are such a pain regarding not sleeping but obviously help a lot with the side effects from the chemo. A necessary evil. Nicky x  ... View more

Hi Thanks for sharing.  I have a friend who has had secondaries for at least 15 years, probably nearer 20 and when she was first diagnosed she wasnt even tested for HER2 status (in fact neither was I for my primary back in 2003). After a recurrence the biopsy showed the HER2 status as being positive but she had to fund it herself via private health insurance as it wasn't available on the NHS.  She eventually became a 'named patient' which is what happened in those days to get the drug on the NHS. She has always said to be that her history should give some sort of clue as to why she is a long term survivor, 'just' on Herceptin and no further spread except for the original sites in her bones.  However it's never been documented or used in any form of feedback or research study.  The one thing she has learnt though is long term use of bone strengtheners has caused her bones to become very brittle, she had her leg pinned about 2 months ago as there was a fracture there. I think the long term use of these drugs wasn't anticipated initially whereas there are more studies (and more patients) to see what their effect is.  This I think is why there's quite a few different opinions about the frequency of the doses and how long we should stay on them. Nicky x ... View more

Hi Carole My brothers are generally pretty good but boy do you have to nudge a man to do - or see - anything!  Unfortunately my younger brother lives in the Greater Manchester area which is the centre of a local lockdown/restrictions otherwise he would have been down to visit before now.  my elder brother, bless him, seems to think the sole purpose of a visit is to take Mum out for lunch.  Which, although very nice and thoughtful, doesn't get the sorting out done!  I did leave him a long list of things to do last week which seem to have been done. I have spelt it out in no certain terms that I can't be relied on to help on any given day, whether organised beforehand or not, so they do both know.  It's just they live either an hour and a half away or 4 hours away so they can hardly pop in like I can.  I'm sure it will be done in time for the actual move, yikes! As to your Mum, the dreaded urine infection!  Isn't it odd how it affects the elderly in such a way.  In fact I'd heard about it in elderly ladies but only realised it affects elderly men as well when my FIL had one just before he was re-admitted to the care home.  Completely off his trolley until the antibiotics kicked in! Good luck to your daughter, I hope she gets accepted as a supply teacher and it's nearby if she does. Nicky x ... View more

Let’s hope so too! By the way I just re-read my post and the stupid corrective text changed ‘taxane’ to ‘taxing’ , just in case you wondered what on earth I was writing about! Nicky x ... View more