Want to talk?

[EvaV]

ER + stage four with bone mets since 2012. I'm interested in talking to people who have been diagnosed with any stage of breast cancer.

[SoCalLady]

Hi Eva, welcome back. It's been awhile since you posted. It appears your 7 years out now. Congratulations, you passed the so called "5" year mark. What is your present regiment? My MBC is also to the bones, but I'm only on my third year. Update us on how your coping, etc.

[smithhilliard in reply to SoCalLady]

Hi 17 months on this journey. I also have bone Mets and presently taking doxil. The only thing is that I can't sleep and I am very tired. First diagnosed in 2008 and Mets 2018. I understand that I am older but this tiredness is crazy. I go to the gym twice a week (walk and ride the bike) I would appreciate any help with this journey.

[Barbteeth]

Hi Eva

You’ve done incredibly well and I’m happy for you although looking at it another way...you’ve had to struggle with mbc and meds and side effects for longer than most of us and that is the horrible side to this hideous predicament in which we find ourselves

I’ve been mbc since around May last year...mostly bones but a single liver nodule (recently zapped with SABR radiotherapy) and a few pleural nodules

I was feeling reasonably ok till the radiotherapy and that had wiped me out physically and I feel rubbish

I live on painkillers as bones hurt especially where I have a pathological fracture

Sorry I seem to be moaning about myself

I wish you all the best...I’m sure you have a lot of words of wisdom for us all

Barb xx

[BangorBelle56 in reply to Barbteeth]

Barb, did you contact your oncologist re dexamethasone? X

[backgreen]

Hi

my dear wife was diagnosed with stage 4

Mets to liver ,bone and lung in 2017

unfortunately hormone treatment hasn't worked for her and Xeloda also failed her after a few months hoping to go on a new infusion chemo soon..getting worried now ..are there many more treatments out there?? she is ER+PR- and HR2 Equivocal 2+ not sure if that is positive OR negative

..

[Hidden in reply to backgreen]

Backgreen -

Gosh, I'm truly sorry for what you both/all are going through. And it warms my heart that you are reaching out on behalf of your wife...she is a lucky lady!

I think it would be important to know if the cancer has mutated into negative, or if it's still positive, and the treatments "just" ran their course. If it's mutated to negative, there is a new immunotherapy treatment that might be an option.

If it's still positive, I think an important thing for you to know/consider would be was she diagnosed "de novo", i.e. did not previously do the standard, hardcore chemo treatments, or did she do those in the past, in which case they are no longer options. If she was diagnoxed de novo, please know that these hardcore treatments are very effective, albeit difficult (but not as bad as one might fear). So the docs currently start with the easier treatments, like Ibrance + Letrezole or Faslodex, before bringing out the big guns (very effective guns) of like ACT (I'll muck these up but like Adriamycin, Cytosomething, and taxol). ACT can really make a big difference...again, if she's not done these before...

Also, I recently learned from a great oncologist that Abemaciclib (sp?) , which was initially thought to be interchangeable with Ibrance (palbociclib) and therefore not an additional option, actually interacts with the cancer in a different way, and so might be an option for people who have had to stop Ibrance....Maybe this is something to look into if her cancer is still hormone receptive?

I suppose, not knowing much of the details, I would suggest that you get a second opinion, ideally from (another?) major cancer center. If you're in the U.S., the NCI has a list of "comprehensive cancer centers" that have access to the best treatments and trials.

It's just all so awful, though, right? Again, I'm so sorry for what you're going through...My very best wishes and hopes for you both...

Lynn

[backgreen in reply to Hidden]

Thank you for your very detailed reply

it was much appreciated..we live in Ireland so Clinical trials etc are not as plentiful as would be in the States..

when she was initionally dignosed in 2013 after surgery she was treated with the"red devil" chemo at that stage it was HR positive but with Mets seems to have mutated to negative.

for Mets it was Taxol ,Ibrance/fastolex

then Xeloda now more chemo

what was the immunotherapy treatment that might be available??

I know there are a lot of new developments out there but could take years before they hit d market..

thanks again for your time

[Amm1 in reply to backgreen]

Hi have you checked out Cancer trials Ireland? There’s a list of current trials on it.

[BangorBelle56 in reply to backgreen]

Hi there. I can say snap. I also have the same mets and the hormone treatment and Ibrance did no good for me at all. But there is hope. I had scans (CT AND MRI) after nine weeks on IV Taxol and all my tumours had shrunk quite a bit. Stay positive. It really helps . I have my Taxol weekly, plus denosumab every fifth week and Neulasta when I need it. It is fine. The worst bit is not being able to travel for more than a few days because the treatment is weekly, but it beats the alternative 😁

[NShaft]

I was diagnosed with MBC, mets to bones, De novo in Nov 18 and started Ibrance and Letrozole in Feb 19. I'm on 100mg as we struggled with neutrophils at the higher dose. It seems to be working so far. I've had few side effects after the first few months other than the dreaded fatigue. Of course scan anxiety is horrible and the worry that it will stop working at some point. It is nice to hear from others that have had success in fighting this for many years.

[Presence1 in reply to NShaft]

I too was diagnosed de novo in December 2018 and started letrozole, Xgeva, Ibrance. First PET WAS GREAT, much reduction of bone Mets. Second PET, stable.

I am searching for a way to nullify scan-xiety. I don’t want it to haunt my days. I also worry that every new pain means meds are no longer working. Some days I feel great that’s followed by not feeling good and much fatigue.

Sometimes I feel like I should plan on a 2 year survival rate...if it goes longer great. Otherwise I find I worry about dying.

[NShaft in reply to Presence1]

Many have fought this for many years. Someone on this forum has fought for 15 years. Don't just look ahead for 2 years. Plan for many more than that!

[bubblystream in reply to NShaft]

Dear NShaft,

I have been diagnosed with Breast cancer mets to the bones de novo in January 2015

I have been on Ibrance, Letrozole and Xcheva shots since Februaury 6, 2015. I am having

exceptional results with minor to no side effects. My tumor markers fell from the 800's to

30 to 60's. Been stable at that level for a couple of years. I brance has saved my life.

[mariootsi]

Wow! Seven years. Gives us hope!

[bubblystream in reply to mariootsi]

7 years is awesome! I am at 3 years and 8 months. I am very stable for right now.

[mariootsi in reply to bubblystream]

I wish you stable for a long time!

[SeattleMom]

Hi, Eva,

I was diagnosed with Stage 1B BC in 2000. Opted for double mastectomy. No cancer found in lymph nodes, no follow up treatment, and I figured I was home free.

Then in November 2017, discovered lump in armpit and MBC spread to spine. I began Letrozole/Ibrance combo and have received that treatment ever since.

What is your protocol? Best of luck and God bless! ❤️❤️🙏🏻🙏🏻

Linda

[Barbteeth in reply to SeattleMom]

Hi Linda

My story similar to yours but mine came back 24 yrs later

I’ve been reading lately that ladies with small oestrogen positive tumours that haven’t spread beyond the breast are more likely to come back decades later...30% apparently do

Like you I thought I was cured...bastard isn’t it

Barb xx

[SeattleMom in reply to Barbteeth]

Yes! The hardest parts to accept, for me, were knowing I’d be taking daily meds for the rest of my life and the loss of TIME due to appointments, scans, etc. Just knowing that my life was changed forever. Now a slave to modern medicine.

I always try to keep it all in perspective and be grateful that I’m still treatable! God bless you, Barb! ❤️❤️🙏🏻🙏🏻

[Presence1]

I’d love to have someone to talk to about this dis-ease. I was diagnosed de novo in December 2018 ER+ and started meds January 2019. So I am just finishing my first year. I have many questions on what to expect and how to cope.

Where do you live? I am in Buffalo NY.

[needabreakfromcancer]

I am a stage 4 with bone mets and three liver mets. I am scared as I think it is now spreading to my colon. I am ER+HER-. So far, the aromatase inhibitors haven't worked at all, and neither have Fluvestrant and Ibrance. I am also on Metformin that has helped with skin cancer that I had on my stomach and may possibly be killing the liver mets. I am a borderline diabetic. So far, that's helped more than anything. I really don't know if there is a solution for me. Wishing you well.

[BangorBelle56 in reply to needabreakfromcancer]

What has your oncologist suggested. I am finding Taxol good as other treatments did not work for me either. Sending you a big hug x

[needabreakfromcancer in reply to BangorBelle56]

I had Taxotere chemo in 2012, I hesitate strongly to try other chemo drugs as so far they have done more harm than good. I also have post-polio syndrome, having had all three polio viruses in 1952. I am one of the few people in the world that has survived all three. I now think the tiny amount of blood may be from the constipation I intermittently get with Metformin. I only saw that tiny amount once. I hope to go back to Denver for scans in 2-3 weeks. I also get treated here in Las Vegas, where health care leaves a lot to be desired. I had scans two months ago yesterday in Denver. My bone mets had not progressed at all, and my oncologist thought that one of the liver mets was dying. This is on the Metformin only. When I was on the Fluvestrant, I got the liver mets and the bone mets progressed, when I was on the Ibrance the bone mets progressed and nothing changed with the liver mets. I find it fascinating that when I got on the Metformin that the skin cancer I had (from the breast cancer) that it went away after a week on Metformin. If the liver met is dying, I was on the Metformin for a month at that time. Yet, he and my oncologist here keep saying that Metformin doesn't work. Really?

[Sunny2020]

I was diagnosed Stage 2B in February 2019 then Stage 4 in May 2019, Mets to bones. I had ovaries removed, have been on Ibrance and Letrozole 3 months. My scans showed no progression and stable.

[Amm1]

Hi I was diagnosed with MBC with Mets to lungs (de novo) in April 2014. Was on Anastrozole till April this year when scans weren’t great, then faslodex/Ibrance had to change again in September now on letrozole/Ibrance-due scan this month 🤞🏼