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Posts: 47
Registered: ‎18-08-2018

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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Posts: 217
Registered: ‎30-03-2017

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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Posts: 5
Registered: ‎07-11-2018

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

[ Edited ]

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.

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Posts: 47
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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.
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Posts: 5
Registered: ‎07-11-2018

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...
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Posts: 47
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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
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Posts: 5
Registered: ‎07-11-2018

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.

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Posts: 47
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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
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Posts: 217
Registered: ‎30-03-2017

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

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Posts: 47
Registered: ‎18-08-2018

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
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Posts: 47
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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
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Posts: 47
Registered: ‎18-08-2018

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 😊
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Posts: 217
Registered: ‎30-03-2017

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

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Posts: 47
Registered: ‎18-08-2018

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
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Posts: 47
Registered: ‎18-08-2018

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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Posts: 217
Registered: ‎30-03-2017

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
Posts: 5
Registered: ‎07-11-2018

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.

Member
Posts: 47
Registered: ‎18-08-2018

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 .😊