From bad to worse, but getting better.
I remember writing in these forums when I first had early breast cancer. I’m back! I was diagnosed MBC last year in March. It’s been a crazy roller coaster! My original cancer was triple positive IBC. It came back in my liver only. It was riddled with them and some were huge. And just six weeks after my reconstruction, when I was “putting cancer behind me”. Anyway I had an amazing response to 3 months of THP and a holiday in Greece last year and they vanished. There was an unfortunate incident involving a hot water bottle that gave me third degree burns to my reconstructed breast. I also had to get a seroma drained ten times (it’s still there). In November I had two small tumours come back, progressing after just six weeks on HP. I went to USA and accessed a new treatment called histotripsy that blows up tumours using only sound. We blew them up and they were gone and I moved onto Enhertu. After six months we saw new progression so I went back to USA in June and blew up the biggest two, which had grown so fast (to 3cm from nothing in two months since a clear MRI). I still have a few in there but hopefully less aggressive ones. Now I am facing a situation where I have discovered I was not offered or given the first line treatment after chemotherapy, and now, I am not entitled to ever receive it on the PBS. I am self funding Perjeta for now but hoping my appeals to the PBS people and to others might help in getting it subsidised or under compassionate access. I feel I am being penalised for my oncologists “mistake”. The truth is I think he did it (called my cancer HER2 only and treated it as such to give me the best chance to access T-Dxd early in the piece I have also now been advised to consider Palbociclib based on the Patina results but this is also not on the PBS for my type of cancer. So somehow on top of the 150k I have spent on blowing up tumours I am expected to find another 100k per year for medicine? Or just accept inferior treatments? Life with MBC can be hard. This week I got an MRI that was interpreted as major progression. I cried I ran off to the hospital to fill the palbo prescription then came home and realised the lesions (extremely suspicious for metastatic progression) were actually the three treatment zones I had targeted (phew). So there are only babies that will hopefully now start shrinking from standard of care 15 months late and largely on me. I’m considering going to India for cheap palbo or back to California for more liver bombing. I never knew cancer would turn me into a jetsetter. I am also a mother of two girls 10 and 13. Keen to hang around as long as I can. Well that was a long story! I remember I got some good support here when I was going through it the first time. I’d love to meet others in the same boat in Melbourne.
Signs & Symptoms of Secondary Cancer
Nobody 'wants' to get a secondary cancer .... but if you know 'what to look out for' - if it does occur - you should be able to get it diagnosed and treated earlier, hopefully, with a better outcome. If you are experiencing ongoing pain/discomfort or any symptoms mentioned on this website ..... See your GP or Breast Care Nurse. https://breastcancernow.org/information-support/facing-breast-cancer/secondary-metastatic-breast-cancer/secondary-breast-cancer-symptoms My motto has always been - If In Doubt, Get Checked Out. (This is a UK site - so the phone numbers don't apply to us - but the tips on what to keep an eye out for re physical changes in your body, may help further down the line.) Take careVideo re Mets BC .... EVERYONE needs to watch it
My sister just shared this video on Facebook - this video went viral in 2015 in the USA and around the world, currently with 54,000,000+ views on Facebook alone. Holley Kitchen passed away in January, 2016, from Mets BC, age 43. 30% of those diagnosed with 'early, treatable, non spread' BC who have been told there is NED (No Evidence of Disease) will go on to be diagnosed with Metastatic BC - whether they have had their breasts removed or not. Most with BC are not made aware of this possibility in consultations with their surgeon or Oncs - but you NEED TO KNOW - so that if you DO GET unexplained ACHES & PAINS in the coming years - GET CHECKED OUT! It COULD be an indication of a problem. https://www.youtube.com/watch?v=QDQ0FjP7J-c And her follow up video a few weeks later - a 40% increase in awareness of Mets BC due to her earlier video. https://www.youtube.com/watch?v=63yTZxj7FOk An interview with Holley Kitchen re Mets BC https://www.youtube.com/watch?v=ijN11LLteTw There needs to be more research into Mets BC - to be able to identify it earlier & treat it better.New USA Drug Trial at preventing cancer cells going to bones
I've put this in the Mets Discussion area as well as general discussion - so that everyone can follow it. This could be a really important development for EVERYONE with BC to follow. This new trial sounds REALLY promising .... how good if this works & can be fast tracked all round the world. This trial comes from a leukemia background and is now being tested on BC patients with HR+ Mets - hopefully even preventing cancer cells getting into bone marrow on patients who are currently NED (No Evidence of Disease, but who may still have cancer cells circulating in the body that may turn nasty up to 5, 10, 15 years later) as some NED patients may go on to develop mets anyway. It has worked in Mouse Studies - stopping cancer cells from turning to bone mets. Now time to test it on humans. Duke Cancer Institute investigators Dorothy Sipkins, MD, PhD, associate professor of medicine, pharmacology and cancer biology, and P. Kelly Marcom, MD, professor of medicine, have just launched a proof-of-concept clinical trial of a new drug for hormone receptor positive breast cancer patients whose disease has spread to the bone. http://www.dukecancerinstitute.org/news/phase-1-trial-new-metastatic-breast-cancer-drug-launchesTrials of new Mets Drug at Duke Cancer Institute - Bone Mets
This sounds promising .... This trial comes from a leukemia background and is now being tested on BC patients with HR+ Mets - hopefully even preventing cancer cells getting into bone marrow on patients who are currently NED (but may still have cancer cells circulating in the body.) Up to 30% of NED patients may go on to develop mets. It has worked in Mouse Studies. Duke Cancer Institute investigators Dorothy Sipkins, MD, PhD, associate professor of medicine, pharmacology and cancer biology, and P. Kelly Marcom, MD, professor of medicine, have just launched a proof-of-concept clinical trial of a new drug for hormone receptor positive breast cancer patients whose disease has spread to the bone. http://www.dukecancerinstitute.org/news/phase-1-trial-new-metastatic-breast-cancer-drug-launches
Recurrence in rib
Hi I have recently found that my cancer has spread to one of my ribs. I was diagnosed with stage 3a in Feb 2018. Had double mastectomy, chemo, radiation, and reconstruction in May this year. How does this happen? I have just completed radiation to the rib, and started on letrozole. I will start Kisqualis soon aswell. Very nervous about the whole thing. Is there anyone out there who has experienced something similar?
Recurrence in lymph nodes
Hi everyone, I was diagnosed with TN Inflammatory BC in late Oct 2017. Treatment was 5 mths of Chemo ( 8wks fortnightly A/C, followed by 12 weeks weekly Taxol) then modified radical mastectomy (rt breast and 3 lymph nodes) which showed only a tiny amount (1.3mm) of residual disease with excellent margins. There had been evidence of activity in the lymphnodes. Surgery was followed by 5 weeks radiation and then I had what I refer to as my bonus chemo - 4 months of Capecitabine (Xeloda). That all took me to Christmas 2018. Since then I have been feeling better each day and looking fabulous (according to my dear friends and family!). On an o/s trip in early June I noticed the onset of lymphoedema in the right arm - sad but not completely unexpected after the radiation. As soon as I got home I booked in to see my surgeon, who is wonderful and always says to see him asap if anything changes. He sent me for an ultrasound, having said he didn't expect anything sinister. Unfortunately the ultrasound shows at least three lymphnodes appear enlarged and diseased - I go back on Wednesday for a Fine Needle Biopsy, but the radiologist made it pretty clear she thinks it's not going to be good news. I have to wait until next Monday 22nd for the results and to know what I'm looking at in the way of further diagnostics/prognosis/a treatment plan etc. I know there's not much advice anyone can give at this stage, but am just having a little freak out and trying very hard to stay calm for my darling husband, so I thought you would all understand if I had a little figurative scream in this forum!! I am searching my self for the inner strength to do this all again - in some ways easier when you know what it entails, and in some ways so much harder for the same reason. Worried and sad, but trying to be strong. Sally
Will I see my girls grow up
only finished my treatment in November. Chemo and radiotherapy as preventative treatment after successful lumpectomy that had spread to 2 lymph nodes. Now on holidays in Queensland and after a freak accident at Movie World that hurt my ribs I had a CT scan to check for damage I have received the devastating news that I have 8 - 10 tumours in my lungs! I can't help but assume the worst. How long will I realistically have before I die?
Immuniotheraphy - my last resort!
I have just begun an Immuniotheraphy drug (Keytruda) for mTNBC as I have hit the final wall without success after my beginning in July 2104. I have been on several chemos & I was on a targeted trial for TNBC last year and early this year that looked promising, but after 8 months the cancer has again spread this time to my lungs. I'm interested in contacting anyone that has trialed or is using an Immuniotheraphy drug.
