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
Advice on ceasing treatment
Hi everyone I hope someone can help me, this journey is horrible. My mum was successfully treated for breast cancer 9 years ago. Last year it returned with aggression. It attacked her intestine, peritoneal region ending in emergency surgery. She had 12 cycles of abraxane chemotherapy and was in remission. So placed on Femaras as maintenance. Four months later, markers began rising rapidly. PET /CT showed new activity all through the peritoneal region. We opted for the Ibrance + Examestene. At this time Ibrance was $5k per month but as it had such good resulted. We paid for it. Ibrance had no impact on tumour markers, they continued rising and mum got sicker and very nauseated. Another PET/CT after 3 months treatment with Ibrance showed extensive liver mets. So many they couldn't count. And disease in the peritoneal region widespread. She was immediately taken off ibrance and placed on Eribulin chemotherapy. Markers started dropping and liver function was improving. We were told things were stabling and we shared a sigh of relief. They said she could stay on eribulin as long as it work. Then suddenly she wasn't tolerating it as well. Fatigued, dizzy, just laying on an armchair everyday with no energy and she lost 4kg rapidly. They repeated blood work but everything was fine. Then she started to feel a pulling ache in her right side so they did a CT scan and found her liver was massively enlarged, deformed and so bad that they couldn't even make out what was inside of it.. Upon seeing that image and seeing how unwell my mum was the oncologist advised he saw no reason to continue treatment. That her quality of life was poor and for the liver to be in such a bad state it's likely full of cancer and she will die soon. He couldn't say when she will die. Just soon. So he sent us home and called palliative care.to set things up for mum to die at home. This was 20 days ago. In the meantime, mum was happy to be off chemo.. Her energy returned, her apetitite returned. She began doing things around the house again, we went out, she gained 3kg.. And looks so much better. We decided for a second opinion and saw a new oncologist . He re did blood work and her tumour markers have risen, and her liver function is now very much deranged.. And has deteriorated in virtually a month . Chemo toxicity cannot be fully blamed when she hasn't been on chemo for a month. He advised she could try a tablet chemotherapy called xeloda which he said would be well tolerated and may buy time. Without treatment he said she would die in a matter of weeks as the liver function is heading toward failure. I can't understand how all this is happening when she looks so good and has had the best 20 days in a very long time. But she is dying. Mum doesn't know whether to enjoy what is left drug free, or whether to take the drugs which may buy time but how will it impact her quality of life? This is a nightmare I don't want to let her go but I don't want her to suffer. Her metastatic journey has only been 15 months . Not even the average and even with trying brand new drugs.. I'm just shattered. My dad wants to try CBD oil which we have legal through a doctor but it's apparently metabolised via the liver and can impact liver function. This oncologist doesn't want her to have it. I'm heart broken.
