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Recent liver progression after stable bone mets. Researching treatments and reaching out. X

Hi beautiful people,

I've recently had progression to my liver after being stable on tamoxifen and xgeva.

My tumours were in my spine, ribs and femurs originally. My spinal ones are currently dormant after radiotherapy and tamoxifen. I the had my primary breast tumour removed and we found it had mutated. I was er+ pr+ HER2 negative. I'm now er+ pr- her2-.

My oncologist has started me on Everolimus and exemestane as Ibrance and faslodex isn't available in the channel islands unless it's first line only.

Can I ask what other lines of treatment others are taking and whether surgery was an option for you? I'm also considering S.I.R.T treatment. Has anyone tried that too?

Sending lots of love to you all and warm hugs.

Ann. X

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Letrozole is supposed to be the best for ER positive BC. I had breast cancer in 2013, had a lumpectomy with clear margins and 31 radiation treatments with beams specifically aimed at my affected breast, and I have had NO recurrence in that breast, so yes, I would say specific beams are VERY effective! ff to 2019 and I found out accidentally that I have several bone mets in femur, pelvis, arm and base of skull that are ER Positive and onc put me on letrozole. I am at the beginning of all this, as my original appt. was in December 2018, but I slipped, fell and broke my femur and it set everything back. I don't know what my onc will say when I go to my next appt. in late March, I'm thinking ibrance because he had mentioned that as the protocol; ibrance and leftrozole, so we shall see. Waiting IS the hardest part <grin> God bless you and I pray you are healed and whole in Jesus name, amen!

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Hi,

Thank you so much for your beaitiful wishes.

I'm so sorry you're going through this too. I hope I can give you some positivity in knowing my bone tumours (14 in total) are all dormant from radiotherapy and tamoxifen. Also Denusobab and Goserellin. My tumours were extremely aggresive as well so we didnt expect for those to have reacted as beautifully as they have.

I also use Reiki, meditation and hypnosis.

I truly believe I will go into remission.

I'm sure that positivity has brought me to where I am now.

Sending you love and healing wishes.

Kindest regards,

Ann.

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You can choose to travel to a different hospital. I live in Dorset but I go to Oxford as that’s where I was diagnosed in A&E. I know it’s a trek but you could try coming to the mainland for initial treatment then seeing if you can get your medication by post? X

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Thank you so much for your advice. It means the world.

My beautiful friends and family have done a fund raising for me to travel to the UK for options.

I believe Southampton general has a fabulous liver team too. Guernsey, although incredible, doesn't have the surgery options/clinical trials that are available in the UK so it is definitely something I will do.

Thank you so so much for taking the time to reply to me.

You have reaffirmed my need to travel to the UK. Xxxx

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Ann, I'm sorry about the liver mets. I had a similar experience. The bone mets resolved on Ibrance and Faslodex but then 4 liver mets showed up within a 3 month period and I went from ER/PR + to triple neg that they discovered through biopsy. My onc. took me off Ibrance and Faslodex right away.

My new treatment started with IV infusion of Gemzar/Taxol, then dropped the Gemzar and now I'm on Taxol and have had 3 infusions of Keytruda. Two weeks ago CT showed tumors decreased in size pretty significantly. My Onc. thinks it's from the taxol since I'd only had one or two infusions of the Keytruda at the time. I'm staying the course until, hopefully, the tumors all resolve. That would be ideal. :-)

Perhaps that gives you a little info. I'd had chemo when first diagnosed in 2012 and this is nowhere near as tough. FWIW.

xo

Lynn

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Dear Lynn,

Thank you for such a beautiful message.

I'm so sorry you're on this journey too, especially with the triple negative mutation.

I can see though that you are responding so wonderfully.

I'm terrified of chemotherapy, I don't know why, I think it's because I feel so unwell already on simple endocrine therapy that I just can't bare the idea of feeling more ill. Exhaustion is a biggy for me, knowing the treatment you're on isn't as bad as the chemo reassures me greatly.

My oncologist wants me to go on chemo tablets, I'd imagine they'd be similar to those you are on.

You have lifted my spirits greatly. I can't thank you enough Lynn.

I'm sending you love and gentle hugs.

Take care and please stay in touch.

Keep up the good work. ❤

Much love, Ann.

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Hi,

Your story is so so similar to mine.

My oncologist has said that radiotherapy to my liver isn't an option for me due to the speckles surrounding it.

I just feel maybe it's worth a shot, although those speckles are there, right now the 1.5cm tumour is the one worth targeting.

Maybe I'm in denial, I don't know, I'm just not wanting to wright off possible options. ❤

Its so sad that these surgeries arent available to people like us. 😓

Taxol keeps coming up in many conversations, it sounds like a good option to me.

Can I ask what side effects if any you have suffered from these medications please?

I'm wishing you much love and positivity on your journey too.

Ann. X

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I'm sending you good vibes that it does 💫

I've found truly believing has been key to my recovery over doubts regarding my prognosis.

I'll speak to my oncologist about taxol, I hope it's available over here. Thank you again. X

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Thanks! Same to you!

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I read a new report that said scientists discovered that our bodies can become immune to treatment and that stopping treatment for 7 weeks "tricks" cancer into a positive response again! Crazy.

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