Breast Cancer Now Forum

Hello Perla.  If you are able to make a post in this group (as you have) then you are a member.  ... View more

Hello Hospitals were required to provide stats on Stage 4 secondary breast cancer from 2013.  Too many of them haven’t, and the government have published none of the statistical information they have received so far.  There is, therefore, no info on how many there are of us, how we progress or what our longevity might be - all the stats are out of date or guesstimates.  New drugs are increasing our longevity, there are many of the cyclic targeted therapy drugs who are 6 - 7 years on and living good (but a different normal) lives.  I hope your wife responds well to her first line of treatment.  ... View more

Hi Aimee I was diagnosed with bone mets on my ileum in March 2020.  I have been on palbocyclib, anastrazole and Zolendronic Acid infusions since, and am stable and doing well on it.  I had a new nodule near my spine earlier this year but had a single blast of radiotherapy for ‘pain management’ which seems to have sorted that.  My hips and my pelvis ache all the time, but it is an ache, not a pain.  My walking and cycling (I don’t drive) have been reduced to about 2 miles but how much of that was due to being so restricted for 2 years by the pandemic and how much by the cancer I don’t know.  And when I do do more thé ache is reduced.  So I guess lots of gentle walking and general exercise might help.  Though there are women with bone mets who run marathons and cycle hundreds of miles!  Hope the treatment works.  And I’m on the make 2nds count facebook page, it’s a friendship group and is brilliant for anyone with a new diagnosis (or an older one). ... View more

Hello Jools.  I have been following it on a facebook page -ErSo Activism for Breast Cancer - and anywhere else I can find  mention of it.  Mainly American as it is still being developed by Systems Oncology but the members are pursuing it regularly and post updates, and are pushing for early trials and subsequent approval by the FDA  in the US.  Nothing concrete yet, but it’s good to see so much activism on the page, and get regular updates.  Couldn’t find a UK page, and don’t have the energy currently to consider setting one up and linking it to the US page/information, or to start a lobbying campaign.  Unlikely to be of help to me, trials and approval take so long but hope for the future though.   ... View more

Hello Lesley. I’m sorry to hear your news.  Hope the tablet contains your cancer.  Like you I’m  hoping they find something for the young people getting it.  It’s heartbreaking when someone young, especially if they have a you d family, is diagnosed with this.   Bad enough for all of us, but we older ones tend to have financial stability and no responsibilities, which I think makes it a bit easier.  I’ve been following (loosely) the development of ErSo, a drug they think might actually kill the cancer for Sbc and ovarian cancers.  Very early stages, human trials may take place next year but it gives hope.  Being developed in America, a facebook group are pursuing and following developments and pushing for early testing/approval there.  Can’t find anything on it in the U.K.  Too late for me by the time trials have taken place and NICE approval is given, I’m 71, Sbc with bone mets, and on palbocyclib, anastrazole and Zolendronic Acid.  It has worked for the last 2 and a half years for me, but new small nodule near my spine on the last CT.  Had a single blast of radiotherapy the beginning of June, as pain management which has worked wonders, hoping it may have blasted the nodule too!!  Though doing that was never mentioned with the radiotherapy.  🤞crossed for you with the tablet, look after yourself.  ... View more

https://www.systemsoncology.com based in Scottsdale, Arizona are researching ErSo according to the Facebook Group ErSo activism.  The majority of the members are American, and seem to have as many difficulties with the FDA as we do with NICE.  But it is a very informative group and the members are active on chasing up progress and information, and lobbying senators and petitioning FDA ... View more

Hi Stargate That’s appalling.  I had a similar experience at a small cancer unit in December 2019, but was transferred to The Christie when my gloomy consultant felt he couldn’t do any more. What  a difference.  By then it was Stage 4 incurable with bone mets, they could manage it, the medication would stop working at some point but there were other options when it did. I listed my previous experience with dates, appointments stretched to the absolute limit and beyond, overcrowded scruffy waiting rooms, etc. to my MP, and she took it to the Minister for Health. We need a properly funded NHS where staff have the time and energy to support us. I hope your change of hospital is as beneficial as mine has been.  Over 2 years on  I am still on targeted therapy (Palbocyclib and Anastrozole).  The Palbocyclib was reduced as I had a period of being utterly exhausted, Letrozole was changed to anastrazole after a bad rash, my bone strengthening injection was changed to a Zolendronic Acid infusion after a small local rash.  In April this year my CT showed something near my spine, so I have had a detailed MRI and it is a small probably cancerous nodule.  The other mets are still stable, so for the time being I am staying on the targeted therapy, but it will be reviewed at my next scan. I send an e mail to the Christie MacMillian and consultants secretary a week before my consultation, asking questions and  telling them how I am generally, and soreness or pain, any side effects (very very few).  The consultant has my e mail to refer to, as do I,  in case we miss anything.  It works well for me, it’s  my way of keeping some control as I have brain fog.  I  am still having telephone consultations at present.  I was offered a single blast of radiotherapy as pain control in response to my last email/the new nodule, had a consultation on the Tuesday, a CT and check for tattoos to use to line up on the Thursday, and the radiotherapy  the following Tuesday.  They said it wouldn’t work, if it did, for 2 weeks - I woke the next morning and my body straightened up for the first time in months.  2 weeks later the soreness has almost all gone - almost.  I feel amazing.  It can last up to a year, I will just enjoy the huge improvement it has made for as long as it does.  There are options, don’t let anyone tell you and your Mum otherwise.  Wishing for the best outcome for her (and you).  ... View more

Anastrazole stops the production of oestrogen and can cause bone pain, so check with your consultant on that too.  It is listed as one of the possible side effects.  I have mets on my ribs and ilium, Stage 4 sbc,  incurable and inoperable, and have bone pain.  I am on Palbocyclib and Anastrazole as targeted therapy, which has worked really well for me for over 2 years now. shrinking the tumours and stopping it from moving elsewhere.  I do have bone pain, and have just e mailed my consultant to ask if there is an alternative, but I think the alternatives are taking the risk of stopping it or taking the risk of changing  treatment. There doesn’t seem to be a lot of info around about the use of it, other than that it can cause bone pain and some suggestions to manage it. If you are having a PET scan prepare yourself for it, it can be quite scary seeing a nurse come in fully PPEd with a little metal box to hook up to you and having to double flush the toilet for 24 hours, but it did pick my mets.  Good luck, fingers crossed it is something and nothing. ... View more

Hi Lancashire Lass, been having password problems so couldn’t access to reply!  I am so sorry you have had bad experiences at the Christie.  I had radiotherapy there in 2000 for primary, and my lovely oncologist extended all his patients check ups from 5 to 10 years.   I felt very very safe when I was referred back thereafter 3 nightmare months at a local Nightingale, every appointment stretched to, and sometimes beyond, limits, not told about appointments and the. told off for not turning up, overcrowded clinics, went from Stage 3 to Stage 4 in 3 months there.  So I was, and am, very relieved to be back under their care.  I, too, am aware how underfunded and understaffed our NHS is, we cannot afford to lose it and should fight every move in that direction.   take care Shocked first time around at how full the waiting rooms are there, but it has been like a ghost town during the last 20 months, busier this week. And you (all of us) are entitled to a rant!   ... View more

I’m sorry to hear about your experience Lancashire Lass.  Mine has been completely different.  I had my first face to face diagnosis of incurable Stage 4 sbc in March 2020, right before lockdown, at the Christie.  After that it was monthly blood tests and 3 monthly CT scans in a very safe and almost empty Christie followed by thorough telephone consultations, with time to talk and ask questions, plus e mail and telephone contact with the consultants secretary and thé MacMillan staff when I was concerned about anything.  After a bad reaction to a bone strengthening infusion thé consultant saw me face to face once.  And I was invited to an Christie annual sbc presentation, on line for the first time in 2020, where 6 hours of presentations  were made by the consultant, MacMillan, dieticians, Maggie’s, and 6 women with sbc - and questions could be submitted and were answered.  So much information and an amazing effort from them, really helped me and my husband.    I am lucky in both my GP and dentist, they are both wonderful.  My GP responds quickly to any Ask My GP requests, and has seen me face to face once for a recurrent earache.  I  always make  sure that they  are thé practioner I see or contact when I need to.  I have also, in the past and during the pandemic, let them, their practices, and the Christie know how grateful I am for the NHS, the training they have done and the service the particular practioner gives.  I do know I am extremely fortunate, but I have also used what controls I have in my choices to make it the best for me.  I know that’s not possible for everyone,   My only difficulty was being unable to see the dentist for about 6 months before I could have a bone strengthening injection.  It hasn’t been good not seeing practioners face to face but we should remember that they have also been at risk of covid, they have worked in hospitals during the pandemic, they have opened their surgeries for covid jabs, mine is doing weekend blood tests to help the local NHS hospital, they  have had increased workloads due to covid, and there is a huge shortage on NHS staff across the board.   I am almost 2 years on, stable mets, cancers shrunk significantly, still incurable but very grateful.  If you can do anything to change your experience to a more positive one please try it.  One of the best pieces of advice on a forum was to take control of what you can, and that has served me well.  ... View more

I have an infusion every 3 months, takes about half an hour in all - 15 minutes for the infusion and then a short wait before leaving.  Take all the advice about drinking water and taking paracetamol thé day before and day after.  I didn’t know and was really really ill for 3 days following the first one but have been OK since.  ... View more

Hello I had my Palbo stopped for 2 weeks, then the Letrozole stopped for the next 2 weeks last year to see if they were causing/contributing to a rash I had.  Macmillan nurse  reassured me that it would not be detrimental and it wasn’t, scans showed everything still stable, so try not to worry.  I am fortunate to be under a wonderful cancer hospital and consultant team along a fantastic Macmillan team, can access any of them any time with any concerns.  ... View more

Hi.  I am 17 months on, started on Palbocyclib, Anastrazole and Denusomab.  First 7 months I was really really well, then I has rashes that lasted 12 weeks - partly my fault for not contacting Macmillan and GP initially - and then a rash around the site of the 3rd denusomab injection.  I am now on 3 monthly Zolendronic infusions - if you change to these  follow all the advice about drinking loads of water and taking paracetamol the day before and note that mine are given on a chemo ward.   The Palbocyclib dosage has been reduced this year as it made me feel very tired/exhausted but other than that and brain fog I am still keeping well.  I can no longer sew for more than 20 minutes a day, or follow complicated texts/novels, etc.,  so I have had to come to terms with what I am now able to do but, you know, everything is still working, I can rest when I’m tired, and the medication has kept everything stable.   ... View more