Brachial plexus

[ramade]

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.

ramade x

[Hannah22]

Hi Ramade , we both replied at same time to Providencez .So that’s 3 of us now , with brachial plexus cancer .How are you doing , any appointments coming up .I have appointment Friday, checking out spinal tumour, been waiting awhile for this one .Am trying to remain positive, hopefully you can get on a trial , or different drugs .Keep Well xx

[Hannah22]

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 

[ramade]

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.

best wishes

Ramade

[Providencez]

Dear Hannah22,

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.

[Hannah22]

Hi Ramade , am glad Ure not in so much pain now , I was exactly the same , just couldn’t sleep at night .Pain was in shoulder and shoulder blade , and all down arm .Its not so bad now , still waiting for scan on sacrum can u believe.My next pet scan isn’t until February, unless tumour markers go up considerably.My next appointment is on 25th if this month .Try not to worry Ramade , I know it’s hard ,but there are so many lovely and supportive people on this site , it really helps . Please let me know how your scan goes , will be keeping fingers crossed for you .😊

[ramade]

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?

big hugs 

Ramade xx

[Hannah22]

Hi Ramade , Have also had the chemo radiotherapy,and have been on tamoxifen too. Where I’m at now , cancer still in plexus, on chest wall ,plus there is a tumour on sacrum .They don’t seem too concerned with sacrum , as no hot spots showed up on it .But am waiting for appointment to get it checked out .It took hospital, quite a while to find cancer in plexus, as it is unusual apparently. Apart from mouth ulcers and fatigue, am ok .You will be fine on Tamoxifen,I didn’t have side effects,what I can remember .Will keep taking the tablets and keep you posted, will look out for posts on your progress too 😊

[ramade]

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.

Ramade xx

[Hannah22]

Ramade Good Luck with your treatment and scans too

[ramade]

good luck with your scans Hannah

[Hannah22]

Hi Ramade Havnt come across many people with secondaries in brachial plexus. It took 6 months to find mine ,as you said scans miss it .Was devastated to find cancer had returned after 18 years ,but now on treatment, had a scan 2 weeks ago , results were promising, so am coping a bit better now 😊

[ramade]

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

Ramade

[Hannah22]

Whoops the reply was meant. For windflower.

[Hannah22]

Hi Mermaid , it’s good that medication is working really well for you .I started to feel pain in my upper arm last December.I knew something wasn’t right , but never thought cancer had returned. It took until May for it to be found .Apparently very unusual place .I am hoping that scan on 30th will indicate drugs are working

[windflower]

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.

Windflower

[Hannah22]

Hi Mermaid mine has come back in brachial plexus , which is just under collar bone .Also I have a few areas on chest wall .So it’s wrapped itself around nerves on brachial So inoperable.just Hoping these drugs can help

[Mermaid007]

Hello Hanna and Windflower,
I too was diagnosed 1999 and extensive bone mets discovered Dec 2014. Been stable on Exemestane just awaiting new MRI and CT results. It’s such a shock after all those years. Are you both bone mets only?

[Hannah22]

Thank you for reply it gives me hope x

[Hannah22]

Hi Windflower thanks for reply , really thought I had beaten it .So glad you are doing well .Am having pet scan on 30th , just hope for good results fingers crossed x