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Hi Everyone i'm a Newbie with Mets to Bone , Lymph Node and Liver?

Recently Diagnosed Stage 4 Breast Cancer to Bone , Lymph Node and Liver? in March 2018.

Started on Ibrance , Letrozole and Denosumab and due to have first scan soon , which i think is going to be the scary part. Hearing good things about Ibrance , so staying positive this will work for me also.

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Hallo, I am a ‘newbie’ too....and stage 4 BC with tumour in breast again near original site, lungs, spine, neck nodes. Been on Ibrance and Letrozole for two weeks and doing ok. Yes I will be scared too when I have ct scan done in three months.......but keep positive, it may be great news!!! It is still early days but any improvement will be good. Good luck!!!

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Hi Natz71,

You will find lots of support here!

I was diagnosed in March as well with mets to the bones. I receive a monthly injection of denosumab and Lupron. I’ve been on letrozole for three months and just finished my second cycle of ibrance (with very few side effects). I’m feeling much better ( I had severe pain from mets) and my tumor markers are rapidly trending down.

Best,

Jade

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Hello, Try and stay positive. I was diag Feb 2017, ER/PR+ Her-, Breast (4 tumors), Lymph Nodes, Liver (6), Spine (2). 4 cycles dose dense IV Chemo, then 15 cycles of Ibrance & Letrozole. Not sure how much longer my Doc will keep on this regiment...due to potential long-term side effects. I have been NED (no evidence of disease) since Aug 2017. I am having PETS every 3-4 months. They tend to be a lot stressful, luckily I get my results the same day, We have hope....but must also live in reality. My close friend (diag Mar 2017 stage 4 ER/PR- HER2+) she also became NED in Aug 2017. That was short as it came back this time as ER-, PR+, HER2-). Crazy right! She just had a double mastectomy and has started radiation. What I have learned over the past year and half is that treatment options are changing every month. My first oncologist told me surgery and radiation would never be an option - only chemo...(this is where I had 4 cycles of IV chemo) then got a second option and switched to Mayo. New stuff is happening everyday. I met a lady at the Mayo cancer conference that had rib replacement surgery. Be your own advocate, in the beginning I was in so much shock...I couldn't do. They told me if I did nothing my liver would fail in 6 months. It took me a couple of months....but put on my big boy pants and did a lot of research and finally took charge of my care.

To all my Breast Cancer Friends you are in my Prays, make everyday count

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Good for you yes we have to be proactive and advocate for ourselves, where do you go to do to research thanks, God bless you

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Hi there

I’ve just been diagnosed with mets in bone and pleural nodules..after 24 yrs it came back!

I’ve been put on the same medication as you..have already taken letrazole for a month and Ibrance one week..was dreading side effects but so far I feel ok..tired and a bit breathless but I was like that before!!

I’ve calmed down now I have treatment plan but it’s very difficult to be in this horrible situation

I wish you well

Barb

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Hi Natz! I am 54 and live in N England . I too will be having a first scan in September and praying for good results . I have been on Ibrance (125mg) and Letrozole for 6 months now and so far tolerating it well . My white blood cells and neutrophils have been ok when tested at the end of each monthly cycle and my tumour markers stable for 6 months at 20-22. I have mets to two areas of the pelvis but I am not in any pain ... just a bit stiff after sitting down for a while (from the letrozole). And as time goes on I notice I’m not as tired as at the beginning . Recommend keeping hydrated and keep moving ... my 2 King Charles spaniels do that for me ! Stay positive and hope it goes well for you x

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Hi

I live in Nottingham but originally from Hartlepool

I hope I cope as well as you have done with the medication..not many ladies apparently manage on Ibrance 125mg due to neutropenia

I’m planning to get back in the saddle..miss my horse so much..animals are the best therapy

Hope all goes well for you

C

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Thanks Barbteeth ! Hope you get inspiration from all the wonderful ladies on this site as I have found it a great help, especially from those in the U.S. who have been on the Ibrance treatment a lot longer . Also you realise there are many alternative treatments when one treatment stops working . Stay positive and keep moving x

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Hi, you live in Nottingham, I live in Gt Gonerby near Grantham. Are you under City?

Glad to know I am not alone and not far. Best of luck, perhaps we shall see each other at the hospital?

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Hi

I’m not going to City Hosp as hubby has private insurance so I see Dr Anand at the park hospital..she’s lovely and very kind

One of my daughters teaches in Grantham..small world

Hope you’re doing ok with your treatment

B xx

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Hi B, my previous surgeries were at BMI in Canterbury as hubby also had private insurance but now we are retired it ceased. One of my daughter in laws worked at The Park, it’s good as they too have dedicated cancer unit. She is now back in Canterbury. Yes it is a small world.

Thank, doing ok so far but it is early days. How about you?

R xx

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Hi R

I’ve been on letrazole now for 6 weeks and Ibrance for 2 weeks..doing ok but I guess it’s early days ..after reading about the side effects I was dreading it

It’s 24years since my initial breast cancer and this was a terrible shock..however after hiding myself away I’m now on holiday with hubby in Suffolk..fab weather and we’ve been walking a bit which has made me feel ‘normal!’.. the health benefits of sea air and sun have perked me up

I too am retired..a bit earlier than planned but couldn’t continue after the diagnosis

I wish you good health

B x

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Many thanks. You too....enjoy your time in Suffolk, such a pretty county and the weather is great at present!!

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