pet scan

[dasypien]

took a pet scan results came back not so good another lesion appeared on my liver so the ibrance i guess stooped working after a year and 1/2 so seeing doctor wed on next steps. I am not so happy right now.

[Hidden]

Oh, gosh, dasypien, I'm so sorry! No doubt this is stressful. My heart goes out to you, I know these junctures can be just awful. If it's any comfort, please know that what is typically the next treatment works well for a good period of time. Sometimes even better than the first treatment. The docs line up treatments, A-B-C, based on averages, whereas sometimes "B" works better for one person, "C" for another, etc. Take care, be well.

[nstonerocks]

Can these lesions be ablated? I’m sorry you didn’t get a great report but am sure there are several options here. To put a positive spin on it, there is one new lesion. Not what you want to hear, but it is one. My fingers crossed for the next plan of action 💕

[klhowe]

From what I've read they might keep Ibrance and switch the letrazole to faslodex shots which work well on liver tumors and you don't get all the joint pain that came with the letrazole. Don't worry, there are many combinations ahead.

[Have-faith in reply to klhowe]

Yes. I agree. This is a possibility as this is what happened to me. Ibrance and Letrozole ceased working. Letrozole was replaced with Faslodex. Faith

[nstonerocks in reply to klhowe]

Except for having to travel for the shots I feel much better on faslodex.

[Southside25]

Here's a link to an article about research from Dana Farber Research about reversing Ibrance resistance.

dana-farber.org/newsroom/ne...

[Barbteeth]

I’m on Ibrance which seems to be helping with my bone mets but I have a liver met which has grown...I’m having SABR radiotherapy on that lesion in order to remain on Ibrance while it’s working

Looks like it’s not very effective on liver for some ladies

Has your oncologist mentioned this treatment?...it depends on the number of liver mets...I was told five were the most that can be done with this

It’s very disappointing to find this out...I was very upset about my progression but feel better now something is being done

I wish you well

Barb xx

[kearnan in reply to Barbteeth]

I know a woman with stage iv which spread to her liver. (This was years after she first had breast cancer,both removed, chemo and radiation.) 10 years later cancer was back and was now stage iv. She was on clinical trial for Ibrance and here it is three years later and no progression and she still works full-time as a elementary school teacher.

[Barbteeth in reply to kearnan]

What a fantastic result from Ibrance...I’m pleased I can stay on it for longer

My mbc returned after 24 years

Barb xx

[kearnan in reply to Barbteeth]

The odd thing is that she has three sisters. Two other of her sisters also got breast cancer, not stage four and different types and they all tested and they do not have the gene for it. The block I grew up on as a child in Brooklyn, FOUR of us got breast cancer. I was told 1 in 8 women. That is alot of women getting breast cancer.

[Barbteeth in reply to kearnan]

It’s very scary...maybe there are other factors going on there...impossible to know

Awful though

Barb xx

[Mindysooty]

Sorry to hear this. It must be scary but Ive read on here quite a few people have changed mefs which then work. Its hard but try to stay positive. Crossing everything for you. Take care. Xx

[Have-faith]

Hi Dasypien. Your feelings of upset are normal. Nobody likes to hear the current meds are not working. The first time we hear this is tough as we don't know what happens next. Your onc will have a plan. Many of us have had to change meds and some of the "next" regimes have been easier to tolerate and, or more effective. Have Faith. Try not to get down. Easier said then done I know. You will have your answers soon. Unfortunately, this seems to be the pattern, meds stop working, regime changes,but again hearing it for the first time is hard. Faith

[Kimr2081]

I know how frustrating this is. Hang in there. There are many other options for you.

Kim

[mariootsi]

I will be thinking of you on Wednesday. Sending hugs and positive vibes for a good visit.

[dasypien]

Thank you so much

[Marieleb]

So so sorry to hear that. I too had progression on ibrance ( after 9 months )... They waited another 2 months to confirm but sadly confirmation came loud and clear ( new bone met tripled in 8 weeks and new one on vertebrae). They suggested 2 possible treatments ( it might be different for you as I have bone Mets not liver). First one was Afinitor /Exemastane combo, the second was one has just been approved alpelisib used with fulvestrant . The second one is only suitable if you have PIK3CA mutation so they are using the 2 weeks to check my suitability) ... I too am meeting with my oncologist on Wednesday...So will be thinking of you when I wait in waiting room ( we can compare notes Thursday!).If your new met is on the liver they might offer you the treatment Barb is on and keep you on Ibrance ...

How very disheartening it is to hear the treatment is no longer effective... For me it somehow took me back to first diagnosis feelings just over 1 year ago ... A sense of " deja Vu"... It meant another 3 months of total uncertainty as to whether the ( new) treatment is working, another 3 months of dealing with new side effect, another 3 months of trying to read my body with X-ray vision and fear the worse (" my arm ache, I am feeling sick, coughing too much... Does it mean??!!!??")... It sucks, it totally does... I try to get my spirit back by thinking that the regular monitoring by medical staff who know their stuff actually makes us one step ahead... Yes the b. Is progressing but it hasn't gone unoticed for long and a new battalion is ready for the new fight... Mind you it took me about week to get in that space so you might still be in the understandably "FFS- give it a break " phase...

All the best

[blms]

I’m not sure where you live, but can you get DNA testing on your cancer? If so I would strongly suggest it to find out what will work for you

[Mimigram]

There are other options so stay positive.

Prayers

Mimi

[lynnhbtb]

I"'m sorry. Same thing happened to me on Ibrance. I"m not on IV Taxol and keytruda. Not so bad for chemotherapy. Please don't fret, there's lots of other options out there.

[jstickrod]

Sorry to hear Ibrance stopped working. Mine also stopped after 18 months of Ibrance. It's a scary transition to the new drug, but stay positive and maybe it will be for the better. I was switched to Xeloda, and so far, the side effects have been pretty minimal. I am on my third month of Xeloda. Hang in there!

[SeattleMom]

So sorry to read this dasypien. I have my next pet scan on July 22. It will be about 1 year, 8 months since I started the letrozole/Ibrance combo. Always so scary to get the results back, no matter how well you're feeling or how much you pray for the calm. Please let me know what your next protocol will be; I may be in same boat as you. God bless you and give you peace, comfort, and good meds for the road ahead! XO Linda

[needabreakfromcancer]

I have only had two rounds of Ibrance. I have mets in my spine, pelvis, skull and liver mets too. My numbers went way up on Ibrance but my dr. wants me to try it again. Because I am a borderline diabetic, I got my primary physician to order Metformin for me. Fluvestrant worked for just a month or two. I suspect that because I am a borderline diabetic that it makes it harder for these drugs to work. I was diagnosed as a borderline diabetic a little over 40 years ago, by a specialist. He tested me with the 8-hour glucose testing right before they switched to the 3-hour testing. He told me that I am definitely a borderline diabetic. He also stressed to me that the 3-hour testing is inadequate. He said that a lot of people that are borderline diabetics will be missed. I can't help but wonder how many people are borderline diabetics with cancer, but aren't aware of it. I am hoping that the metformin will also help to starve cancer cells. I hope you have read the June 23rd New York Times article in England about how they are using metformin to fight breast cancer. In Life Extension Magazine there is an article called "Can a Diabetes Drug Prevent Cancer Death?" "In one of the largest studies of its kind, a team of scientists analyzed cancer risk among diabetes treated with metformin. Over a 10-year period, they observed a 54% lower incidence of all cancers compared to the general population." "Metformin not only exerted a major protective effect against cancer development, but those who developed cancer exhibited a significantly higher survival rate, including those with malignant cancers of the lung, colon and breast." I am not in the medical field but I come from a family with diabetes. I wonder if the reason the drugs may stop working or not work to begin with, is because of undetected borderline diabetes. If you suspect diabetes or come from a family with diabetes, I think that you should mention it to your doctors. Please remember though that the 3-hour testing is not long enough to expose the borderline diabetes. It's frustrating because they no longer use the 8-hour testing which exposes it. That's what my diabetic doctor told me when he diagnosed me. Wishing you well!

[Merma]

Sending love and good wishes. We're living with cancer. Our doctors have many options in how to treat it. It's so disappointing and hard to hear this tough news, but be kind to yourself. Make time to enjoy the things you love.