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.
Whats going to happen next
as the heading states what next. I want to be the mum I was before metastatic BC came along tonight I just want to find somewhere to roll up into a ball and cry with the unfairness of it all. If i could Just get life to stand still or at least for once be nice. It seems the whole family is falling apart. 1st daughter is waiting for shoulder reconstruction she has in layman’s terms laxity of the joints already had a knee reconstruction this surgery Dr cant say its going to completely successful 2nd daughter is having major health issues (she has chrons disease, a heart problem plus other complicated health problems all of which are acting up at the same time. She carries a letter for emergency so they don’t have to ask so many questions My Only Son is now on short list for surgery for a shoulder that’s hanging on by a thread of just 1 tendon. ( came off his bike). His wife got admitted to hospital yesterday with several Kidney stones that are not going to pass so she’s in there waiting for a stent then follow up surgery to have them blasted. I’m back on my palbociclib and trying to adjust to the side effects again after such a long break. To top it off I have a new lump on a different rib which wasn’t painful before but now is hot to touch and radiating pain around it. Oncologist had a feel and immediately wrote up a referral for a bone scan asap and I am still trying to recover from the GB surgery Its a bit of where do I go, how do I spread myself around to them all, I want to divide myself into pieces so I can help them all. then my body reminds me I’m not 100% fit either.
Rising tumour markers, and advice needed regarding breast care nurse
I am now 71/2 months along since my diagnosis, and it's been one hell of a ride. I was started on Ribociclin but it affected my liver so I had to stop that, then I was on Palbociclin which last month showed a positive response to treatment with visibility of the tumours basically undetected. Now my blood tests have shown a slight increase in the tumour marker, from 86 to 92, instead of going down. So now I have to have ct scans, MRI's, and a possible pet scan to see what's going on. So here comes the anxiety again, wondering what's happening. I was told that it would be very beneficial to have a breast care nurse that is trained in all of this, and who I can contact when it's all feeling overwhelming. My oncologist works out of the Olivia Newton John centre, so I would preferably want a nurse who works from there. Does anyone know who I can contact about this, and has anyone been through something similar that could possibly reassure me about my situation. You were all so wonderful and so helpful when I was first diagnosed, and I'm hoping I can ask for your help one more time.
Treatment
I have recently been given the diagnosis we all dread, metastatic her2+++ in my liver I started treatment with Pacitaxel with pertuzumab and trastuzumab. I had a reaction after 7 minutes of pacitaxel so it was stopped the next week when I went for next treatment I was informed that they were changing the treatment to trastuzumab and vinorelbine in three weeks time. I am really anxious about the whole situation the oncologist that I have been seeing for past eight years has been on leave and I have dealt with three different oncologists since receiving the diagnosis four weeks ago and it seems impossible to get information about the change of treatment. When first diagnosed with breast cancer in 2012 I was given lots of information and support this time it feels like all I am getting is pity and am all alone and anxiety is eating me alive I am trying to be positive but it seems so much harder this time around.
2 years - Ribociclib/Anastrolze
Hi Everyone, I just wanted to share some positivity and hope for any of you that are on the Ribociclib & Anastrolze combo.I have just completed 2 years and feeling pretty good. Hair is thinning at crown, the feet are disgustingly dry and the hands and nails are peeling BUT ... who cares, I can live with it... I’m well and enjoying life. I hope you are all doing ok and really wish you the very best of health for 2021 xxx
Metastatic cancer
God I’m over feeling the way I do started Letrozole and Palbociclib tablets this morn and have t been sick but god it’s taking toll on body feeling bit buggered ... stomach is full nerves as suffer from anxiety and panic so get feeling of word and scared like u want to b sick then it goes ... is this normal will it get better each day or worse I keep thinking worse try to relax and I can’t god wish I could turn back time don’t even know how I’m gonna take tablets in morn if I keep feeling like this plus need to get calcium tablet god only knows how I’m gonna take that too feel like giving up alreadyDiagnosed Metastatic BC August 2020/nab Paclitxel (chemo) & Atezolizumab (Immunotherapy)
I just want to share my story. High risk R side breast cancer diagnosed in August 2016. oestrgon + progestrone/HER2 neg. Treated with surgery/chemotherapy x 2 and on Letrozole daily. Four years of good health and back to work. Come August 2020 found hard lump right base of neck. GP ultrasound organized. Referral was then sent to my oncologist who ordered an ultrasound biopsy and PET/CT scan. On 6th August this is when I found out I had metastatic breast cancer triple Neg. Terminal with not a good prognosis. Results showed I had a large tumor R supraclavicular Lymph node with multiple enlarged internal mammary nodes (hots spots). Bone Mets in T8 spine and R iliac bone (hotspots). On the 20th August I commences Chemo-nab Paclitaxel days 1, 8, 15 and Immunotherapy Atezolizumab days 1, 15 and one week off. Follow up PET/CT scan 3 monthly. I have completed my first 3 months and had my PET/CT scan on the 9th November and couldn't be happier or at least some hope. (I must admit it ha been a real struggle with lots of lows and crying leading up to this for not just myself but also my husband.) Results showed Marked decrease in size of the R supraclavicular mass, with most of the mammary lymph nodes, bone Mets and R mass in the neck's SUV have reduced by over half. Conclusion: There is evidence of a positive response to therapy. No new metastasis. At this stage I have only had minor side effects from the chemo/immuno though this can change mainly with the immunotherapy.Newly diagnosed - Just need some positivity and hope
Hi Everyone. This is my first post. I am trying to navigate this network, because I know I need help. I was diagnosed with metastatic breast cancer only 5 days ago. I have many tests coming up, and treatment options. But for now, I can't seem to find the strength. I just need to hear some positive stories, some good stories, some hopeful stories, so that I can muster enough determination to stop crying for one thing, and to get my anxiety level down. I have an amazing family, and they also need some hope. I am 56, and was originally diagnosed 13 years ago with early breast cancer, and was told "you are cured"???? I am sorry to sound so desperate, but I'm still in that place where my world feels like it's ending. Thank you for reading, and I send hugs to everyone.
Newbie with pain
Hi, Would appreciate advice on coping with pain continually getting worsening. Diagnosed in Feb this year with small mets in thoracic and lumbar verebrae and since then 1 dose of palliative radiotherapy and monthly denosumab. My concern is how quickly my oral targin and fentanyl patch have had to be increased to cover my pain. Is this normal? Do I have to let go of the fact that you are weak if you need lots of meds and accept it is what it is? Thanks , Lesley
