Hi Ramade was getting worried about you .Yes all treatment was stopped, until I felt stronger .Back on letrozole only .Having biopsy March 14th , will let you know how it goes. Hope your feeling a lot better too .They now think tumour on spine , might be low grade cancer . Will wait and see .Speak to you soon xxx
oh Hannah so sorry to hear that, i hope you are feeling better now. i have been in hospital for a week with dehydration, stomach infection and gastritis due to capesitabine. Not back on until 7th March to allow me to recover. Hopefully they are giving you a break too.
hugs Ramade xx
Hi Ramade not been too good , have been in hospital with pneumonia.Am home now , but still feel quite weak .So oviously spinal surgery and cancer treatment have been on hold .Hoping to have biopsy on tumour in March .So just got to get myself better. How are you doing , better than me I hope xxx
Hi Hannah, ggod to hear from you. Don't worry about the biopsy, I had one deep into the neck, he anaethatised the area first and i only felt pressure.
i,m hanging round the treatments thread at the moment struggling with capecitabine side effects but pleased it seems to be working.
good luck to you
Hi HANnah, my results were not good yesterday. Huge lump in neck, doctor is asking about radiation possibilities. Looks like I'll be on harsh chemo all over Christmas and most of year, it's paclitaxol that I had 18years ago with my primary. They are having a team meeting next week and I am to go in on Thursday to see what decision has been made.
Is it you that talked about cyber knife possibility and is that the same as proton beam? I thought I would ask if that is a possibility because the neck sounds a bit risky to be.
Hope you're not having heavy chemo too, you thought you might.
There is 1 immunotherapy that gotten a patient with stage 4 breast cancer "cured" it has been 2 years + and there is no sign of cancer coming back. It was headed by Steven Rosenberg at National Cancer Institute (USA). You should check that out. Unfortunately i cant apply for my wife as it is open to USA citizens only.
Current immunotherapy (CAR-T cells) only work best on liquid tumor. The immunotherapy i mentioned is under phase-I trial by Stanford University School of Medicine only.
Thank you and Ramade for the reply.
Didn't they have booster jab to boost the production of white blood cell or blood transfusion? If stopping treatment to have whiteblood cells going back normal won't it take quite awhile?
Anyway my wife tumors on Brachial plexus are all only 1mm to 2mm. So i'm sure they are not wrapped around the nerves. Maybe is due to the difficulties that the doctor does not dare to operate. Anyway i will be visiting her tomorrow. I will try persuade my in-laws to seek 2nd opinion...
Did you guys try Keto diet?
Also are you guys aware that there is a new immunotherapy on CpG with Anti-OX40 (Cancer Vaccines) that cleared all solid tumors (Breast & Colon. Single or Metastasized) on 90 mice. 87 of them have all their tumors cleared and the 3 of them have theirs cleared too after 2nd treatment and have no recurrence. Now it is in phase 1 trial on Lymphoma patients only and results will be out Oct 2020.
Hi Hannah, so sorry to hear this. Hopefully if they do operate they will take it all away from the sacrum and you will feel more comfortable. i had mri on Wednesday whole spine and brachial plexus, i know it's got worse just hoping they can do something and not a heavy chemo all over Christmas. i'll let you know.
thinking of you
hi Hannah,good luck on Friday i will be thinking of you. My mri is next Wednesday but unfortunately the pain has spread up my neck so they've brought the scan forward. doesn't look like tamoxifen has worked at the moment. never been on ibrance, i'm told it's not available for me on nhs.
Hi Providencez ,i was told inoperable because cancer in my brachial plexus is wrapped around important nerves .I was in terrible pain .from my shoulder ,down my right arm,couldnt even sleep.Am on Ibrance and Letrozole,and results are promising.been on it 6 months .I dont know many people ,with cancer in the brachial,but my hope is ,that if it shrinks enough it could be removed .I have also been told it would be a very challenging operation ,so not sure if it could be done .My pain has really improved so treatment has helped .Hope this is of some help
Hello Providence, i hope it's ok with you if i reply as i have cancer in the brachial plexus like H annah. There are not many of us. I have widespread cancer in bones aswell and a spread from the top spine across to shoulder where there is a big lump and right across chest.
We did ask about getting the lump removed but were told that there are whole bundles of nerves in the brachial plexus and it would be impossible.
However your wifw's pain should be treated, i have a lot of pain killers because nerve pain is dreadful.
Hope this helps.
Hope you are doing fine.
I would like know more about why secondary at Brachial plexus is inoperable.
My wife cancer came back less than a year after treatment for stage 2B breast cancer at the left breast and nymph node. Now it has spread to left lung (1cm) and i heard there is quite a few at Brachial Plexus on the left. I'm currently not sure if it is operatable or not. Just want to get more insight on this condition before i suggest my in-law to get her to another doctor for 2nd opinion as she is in pain almost every night...
I not too aware of the lastest condition is also due to communication issue as she is a south korean and i am a singaporean. She also doesnt like to talk about her condition to me and my in-laws doesnt speak english.
Thanks in advance.
Hi Hannah, how are you doing?
Having been quite worried since several treatments plus 6 months of a horrible chemo all failed i am taking tamoxifen which i never had before and the lumps in my neck are starting to soften and a big one on my shoulder is finally going down. phew, huge sigh of relief because they had become painful and i couldn't lie on my left side. Scan next month, however they always say how hard it is to see if it has moved but i also have cancer in most of my bones so maybe that will show something has changed.
Thinking of you, when is your next scan?
Thanks Hannah. MRI showed same spread but because it is deep in the chest and neck he said it is difficult to see. on Tamoxifen now as i have never had it before. Been through several gruelling chemo's and other treatments so i feel glad to have a bit of respite. Also quite extensive in bones. Hope you have a good appointment, am thinking of you.
hi all, i am so pleased to read this thread because i have secondaries in brachial plexus. i keep having mri's because apparently the ct's don't show the spread in the soft tissue very well. i have been on a lot of different treatments, having a struggle to hold it back with me at the moment.
love and hugs to you all
Hi Mermaid (and Hannah)
My secondary cancer was discovered (in 2015) because it had spread to my peritoneum and blocked my bowel, so I had to have an ileostomy. Scan reports don't mention the peritoneum now, so either it has shrunk a lot with the chemotherapy or is now microscopic. The bone mets were discovered a few months later and are "multiple" but don't cause me any pain and have remained "stable" ever since. It was assumed that they had been present for some time, but not discovered. My original scan wasn't looking for cancer, but the cause of my abdominal pain and sickness, so that might be why they weren't seen then. I see from this site (mainly the "bone" thread), that many, many people have lived for a long time after their mets were discovered. A nurse also told me that "two to three years was average for secondaries" after I'd related the experiences of a friend of mine who had sadly died. You would think that by now their training would have been updated.
Just to let you know my original breast cancer was in 1995 and I was diagnosed with secondaries in 2015 with no problems in between. I also was very shocked, but it seems that this can happen. I am on Anastrozole and Denosumab and am doing well. Best wishes,