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Brachial plexus

41 REPLIES 41
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Re: Brachial plexus

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

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Re: Brachial plexus

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

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Re: Brachial plexus

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

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Re: Brachial plexus

Hi Ramade lovely to hear from you , glad things have improved for you .Am just in a lot of pain from spinal tumour, they are a little undecided, what to do .So let’s get biopsy out of the way and see what it is .Will keep you posted xx
Member

Re: Brachial plexus

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

hugs

ramade x

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Re: Brachial plexus

Hi havnt been on lately, had the dreaded petscan yesterday, was worrying so much came down with a migraine.Nothing was going to stop me having that scan and the dreaded results .My cancer appears to be stable PHEW.Thats the good news still have large tumour on sacrum, biopsy in 2 weeks, which I am not looking forward to .So will update, when I get results, can I really be that unlucky Even if it isn’t cancer , they are still thinking of taking it out xx
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Re: Brachial plexus

Hi Ramade , am sorry Ure Results weren’t better .I don’t know much about cyberknlfe but it’s worth asking about .I have developed a fatty liver and lipids in my blood .Must be the treatment I guess , and awaiting operation date .Its I step forward, and 2steps back .If you can have radiotherapy in Ure neck , am sure that will help .Dam cancer hey , gotta keep going though Havnt we .Let me know how meeting goes , sounds like you are under a good hospital.Lots of hugs
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Re: Brachial plexus

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.

Ramade

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Re: Brachial plexus

Hi Providencez I am under London hospitals , but it’s definitely worth a mention, have written everything down , maybe they trial it here .You have certainly researched everything, it’s so interesting,hope your wife gets on ok
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Re: Brachial plexus

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. Smiley Happy

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Re: Brachial plexus

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.

Member

Re: Brachial plexus

Hi Providencez, I literally looked it up straight away, after seeing your message.Wow you have certainly looked into things for your wife .Am really interested in the immunotherapy, maybe my tumour has to shrink a bit more .Will certainly mention it to my oncologist, thanks so much you have been so helpful.
Member

Re: Brachial plexus

Dear Hannah,

Please look into Keto diet. Get a nutritionist to plan it for you if you are interested. Basically it uses low carb, high fat diet with alot of greens that are proven to be anti-cancer (garlic, carrot, kalp etc..). Alot people gotten their tumors in control alot also gotten their tumors to shrink some lucky few have went into remission.

There are a brave few that rejected chemo and radiation and gotten into remission also but i don't suggest that...
Member

Re: Brachial plexus

Hi Providencez I didn’t lnow about booster jabs or keto diet will look into it .Know a little about immunotherapy, which sounds really hopeful..You seem much more positive today , which is really good . Thanks so much for information, and hopefully you will get 2nd opinion .Take Care
Member

Re: Brachial plexus

Hey Hannah22,

 

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.

Member

Re: Brachial plexus

Hi Ramade , hopefully results not as bad as you think .Will keep you posted about what’s happening, .We Just have to keep going as always , yes do let me know how you get on xxx
Member

Re: Brachial plexus

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

Ramade x

Member

Re: Brachial plexus

Hi Ramade how are things .I seem to take 1 step forward and 2 steps back .More scans needed for me xx
Member

Re: Brachial plexus

Hi Saw consultant last week about spinal tumour, apparently it’s very large , and has to be removed, I have to have another scan to see if it’s cancer , either way it’s coming out .its on my sacrum.Dreading operation, I may have to stop cancer treatment, for a short time , which worries me My white cell count has to be normal , so that’s why .Am beginning to think , I may have faulty gene , as my son was born with a tumour on sacrum.So that’s being looked into .So feeling a little down today , just seems more bad news at the moment
Member

Re: Brachial plexus

Maybe you can get on a trial for Ibrance, good luck for Wednesday,will let u know how I get on Friday .Have you been on letrozole , you probably have told me .Cant remember anything these days 😊
Member

Re: Brachial plexus

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

Member

Re: Brachial plexus

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
Member

Re: Brachial plexus

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 

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Re: Brachial plexus

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

Member

Re: Brachial plexus

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.

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Member

Re: Brachial plexus

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 .😊
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Re: Brachial plexus

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

Member

Re: Brachial plexus

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 😊
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Re: Brachial plexus

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

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Re: Brachial plexus

Ramade Good Luck with your treatment and scans too
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Re: Brachial plexus

good luck with your scans Hannah

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Re: Brachial plexus

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 😊
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Re: Brachial plexus

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

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Re: Brachial plexus

Whoops the reply was meant. For windflower.
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Re: Brachial plexus

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
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Re: Brachial plexus

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

Member

Re: Brachial plexus

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
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Re: Brachial plexus

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?
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Re: Brachial plexus

Thank you for reply it gives me hope x
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Re: Brachial plexus

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
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Re: Brachial plexus

Hi Hannah,

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,

Windflower

Member

Brachial plexus

Had breast cancer 1999 .Have been in remission 18 years , such a shock it has returned..On Ibrance and letrolezole