Breast Cancer Now Forum

Lovely to hear from you Blondie.  I've been following you, with secondaries inc liver since Dec 12.  You've had quite an impact!  Thank you.  Sarah x ... View more

Good luck with it Margo. My 2nd round mirrored the 1st in terms of liver pain & se's.  Hard to tolerate it but it starts to lift on the afternoon of day 7 for me.  So I'm working on adjusting my expectations & reorganising my diary for 1 week of incapacity in 3. I find the nose bleeds, nausea & lack of appetite annoying but it's the abdominal discomfort, digestive system impact & liver pain I'm hating.  Co-codamol recommended + more laxatives!  I do have liver & abdo mets, so maybe Kadcyla's just doing it's job in targeting those areas & working... ... View more

Glad to hear 2nd was better.  I use a saline nasal spray for nose scabs & vaseline at the entrance. I'm on the 3rd day after 1st treatment & still feel pretty sick.  Hey ho... let's hope it's effective.  X  ... View more

@Alloway1  I'm starting Kadcyla soon.  How did your 2nd round go? Sarah   ... View more

Pre-Christmas check in, Crackers... 10 years down...  I'm still stable post last year's brain met drama.  I'm actually feeling rather normal & hence very frustrated about loss of driving licence.  Weirdly I've very little scan-able cancer in the six places it's been found in to date. Marie, I wonder how you are? Love to all and understanding to anyone who prefers to forget the whole thing. Sarah x ... View more

I had the soft brushed look done while on steroids & herceptin, awaiting brain radiotherapy.  It's semi-permanent tattoo, like microblading, but a softer look. My Onc team signed it off, for the therapist's insurance & the MRI team weren't remotely bothered about the minor metal content of the tattooing. ... View more

Jane, I had SABR for oligomet in soft tissue (not bones) at the Royal Surrey in Guildford in 2020.  It was part of a commissioning study that I think they were leading, which was very successful & SABR is being rolled out. It might be worth a call to them to ask if there are other places doing bones.  The consultant was femal with a surname beginning with E, in the Radiology team. Sarah ... View more

Yes, the odd typo, different impression given or sometimes a new area mentioned to keep an eye on, which turns out to be nothing at the next scan. I've concluded it's just the ambiguity in the nature of scans & the pressure the system is under.  Main thing is your team are on top of checking & willing to explore discrepancies.  I know what you mean about wishing someone had told you sooner though. Sarah  ... View more

Hi Irene, I travelled in Europe recently with the insurance that comes with my bank account (excluding cancer, which I've declared) and a GHIC, (replaces expired EHICs).  The GHIC will get you emergency treatment but not repatriation expenses. I couldn't get cover for less than £1150, if at all, owing to recent brain met stereo radio.  Will be trying again including cruise cover when my 1st 3 month scan results are in.  Not having got that far seemed to be the main barrier. It's frustrating if you're having difficulty, given your stability.  I know others have travelled in the past on tablet chemo, pre-pandemic.  I'm interested to hear if you find any options that will cover, given it's my likely next step. I used to get long haul cover for 2-3 weeks for about £270 with Insure Pink pre-pandemic.  They stopped providing it.  I'm going to try Insure Cancer next, as they underwrite cases individually, using scan results. People used to talk about using Eurotunnel insurance for cheap cover that didn't ask questions. Happy travels.  Sarah ... View more

Lovely to hear your update Blondie.  Hope the CLL treatment continues well. Your story kept me going in my early years after stage 4 diagnosis.  I'm now over 9 years down the line, most recently having had sterotactic rad for a brain met. Thank you for continuing to share.  Sarah x ... View more

Hello Summerblue, I haven't but had carboplatin alongside my first chemo docetaxol & herceptin 9 years ago on diagnosis. I understand Tucatinib is newer (didn't realise it had NICE sign off / funding for bc) & can pass blood brain barrier, used for brain mets of other cancers.  Carbo apparently is thought to as well. So, you may not find much experience but wish you luck on it & will be interested to hear how you get on.   ... View more

Carpediem, suggest trying a few of the smaller UK SBC charities eg. - Making Seconds Count, Seconds First.  BCN are one of the big voices, have you tried speaking to their research / influence people? ... View more

I don't think we're really aware of it in the UK and not sure there are trials here for breast cancer.  More info at this link from the US for others.  https://www.nih.gov/news-events/news-releases/nih-study-advances-personalized-immunotherapy-metastatic-breast-cancer   ... View more

  Hello dear girls, how wonderful to find you here, as always.   Scrolling down I see I didn't even  manage to post last Dec.  I recovered from my last aggressive treatments just in time for lockdown Mar 2020.  Categorised clinically extremely vulnerable, I was frustrated, otherwise well & unable to carry out the volunteering I'd trained for.  So, I made scrubs, walked the dogs  collected a list of goods from the fruit & veg shop and dug in like everyone else.   Adventures have been had this year...  after postponing our last planned long haul tour 3 times, we took a loan, bought a motorhome & took off to Scotland.  We've been to Latitude Festival, EdFringe, Wales & Devon.   We also spent 6 months nursing my father at my parents home, dying from advanced prostate cancer and parkinsons at 84.  He refused to go to hospital & we had invaluable time with him.  It was hard but bittersweet too.   I'm glad he's not here for my latest development...  The cancer's finally travelled to my brain, 9 years from original double whammy stage 4 diagnosis.  It's something that can happen when Herceptin has controlled mets well in the body, as it doesn't pass the blood brain barrier.   It's the better end of an unwelcome development - a single tumour in the hippocampus at the back, affecting balance, picked up in a routine scan after reporting symptoms.  I'm waiting for mri confirmation of surgery or radiotherapy treatment which will be followed by systemic treatment changes (more chemo) to slow things down.   The funny thing is, I'm in the best shape I've ever been to deal with this.  3 months ago I started a  exercise plan to build strength & fitness as part of a wonderful group of ladies over 50, supported by expert coaches.  I started singing in a choir and have been following the Second Nature eating plan this year, losing my lockdown stone.  I shall be getting the bus to art group on Wednesdays with my old girlfriends each week. I feel blessed & supported (I'm also on Dex steroids!).   The last 2 years have seen my nephew marry, a second great nephew born, the wedding of my partner's eldest and a grandchild expected in Feb from his youngest.  This time, for the first time, I'm going to focus on being happy while I'm doing this.   I'm sorry to read of new developments for you, Marie.  You'd honestly think we'd have done enough between us!   Hormone treatments are the devil but useful when they work.  I found Letrazole much tougher than Tamoxifen but my breakthrough was being prescribed the original brand, Femara.  It's the difference between 3 hot flushes an hour & unable to move in the morning to moving slowly with 3 flushes a day.  Well worth the £100 a month more it costs the system!   Love to all, feel free to get in touch.  For those who've seen Nomadland (it's streamable)...  see you on down the road.  Sarah xx     ... View more

Hello Crackers,   I'm checking in early this year, so I catch anyone who does, after new news last year for me...   Pleased to say I'm well although it's been a long year of active treatment again.  In Jan a PET scan showed activity in an abdominal lymph node, so radiotherapy following breast recurrence was put on hold.  Instead I did Vinorelbine chemotherapy - a much less awful experience than our various first line chemos.   My clever Onc got me referred for Steteotactic Ablative Body Radiotherapy, funded by an NHS commissioning study in the summer.  It's a very high dose, delivered a few times to a very precise area.  It reduced the size of the node by half, back to normal  so is presumed effective.   That's put the breast radiotherapy back on the table, so I'm doing it now, nearly 7 years since original diagnosis, straight to stage 4!   So I'm a bit ground down, but otherwise well, no rumours showing on CT scans and hoping for a return to remission on Herceptin and Letrazole only next year.    Marie, I hope immunotherapy will be an option in future, but there's not enough progress for breast cancer yet.  There are other treatments still available to me later, including Kadcyla and potentially more SABR if the circumstances are right.   I know I'm a bit of an anomaly in our group, having been diagnosed with liver and lung Mets from the start.  I hope hearing my news helps.  Sarah x ... View more

Hello Jo, Similar regime to you & side effects.  The anger, flushes & aches are likely to be menopause symptoms, particularly linked to letrazole shutting down production of any oestrogen outside the ovaries. I haven't found any tangible solutions but at least knowing & acknowledging what's fueling anger has helped me manage it better & explain it to others. Different brands of letrazole can vary intensity of side effects for different people. Having had progression recently, I'm going to ask my onc about the merits of going back to tamoxifen. Sarah ... View more

Oh Caroline & Pammy, I'm thrilled to see your comments! I'm 3.5 years on Letrazole & empathise with the impact entirely. Caroline, I'd not heard of the rage- but it would explain a lot! I've had several 'unfortunate incidents too. I can certainly understand making the quality of life decision to stop after 5 years. If you look at Jane McLelland's book "How To Starve Cancer", she believes there are other ways to block the oestrogen fuel line. I'm not advocating & don't feel I can risk it, but interesting nonetheless. I'm struggling with weight too. So it helps a lot to hear from you. love & best wishes to all...Xx ... View more

Hello dear Crackers. I didn't realise I'd not posted last year until logging in today. We were renovating a house and it took over everything. But we finally live in our 'together home, having met in April 2012! I finally had some progression, after a blessed 3.5 years of NED remission. It was in the form of local recurrance in the same breast and has been surgically excised with my 3rd lumpectomy! No more chemo for now, thankfully as no new tumours in liver, lungs or elsewhere, according to CT. I'm waiting to see if radiotherapy will be recommended and any changes to my drug regime. I understand the theory is my cancer's becoming more drug resistant but it still has a way to go if only regrowing in the breast for now. It's a tough one psychologically though. I feel I'm back on the slippery slope but dont know how steep or slippery it is. I know putting it in context, I've done incredibly well but somehow that doesn't help enough. I wish you all well and hope a year on from the 5 year mark, this is all becoming a more distant memory. Love Sarah xx ... View more