Recent diagnosis of metastatic breast cancer

Juliecharlie

I had primary breast cancer 11 y ago . Recently found to have mets in ovaries . I had a lobular carcinoma . I wondered if anybody else has been in a similar position .

I will probably be starting verzenio soon which is associated with severe diarrhea. Has anyone else got experience of this ?

Sadiesservant

Hi Julie,

I’m sorry you’re facing this. I don’t have experience with mets on the ovaries but I was also diagnosed as metastatic many years after my original stage II diagnosis. It’s a shock as, at that point, you feel it is behind you. I always remember my RO giving me a hug when I made it to year ten.

There is a thread dedicated to Verzenio called Abemaciclib Verzenio for stage IV. You’ll find a lot of good information there regarding how to manage the side effects. I was on it for about 14 months and did quite well. Not everyone has extreme diarrhea. I had only one or two episodes per week at most. At the beginning I had quite a bit of nausea but we resolved this with a dose reduction. Hopefully you won’t have much trouble and will see good results.

BevJen

Hi, Julie,

I also had a long time between bouts of cancer. On the last go, I went from 2006 until 2019.

I, too, have lobular. You might want to ask your oncologist about pulling in a gynecological oncologist to discuss surgery, in addition to systemic treatment. My first recurrence, in 2006, was on my cervix. There was no other evidence of cancer, but I had a complete hysterectomy and oorphectomy, all done laparoscopically with a relatively easy recovery. Something to consider. Most medical oncologists go first to systemic treatment.

alicia_en_madrid

Hello, my mom was diagnosed in January 2011 also with MBC to her ovary. It was also Lobular. She did have surgery to remove the ovaric mass. It was only in one ovary (not in the other one and not in the tubes) .

After that she was on Aromasin for 8 +1/5 years until she recurred in the same breast in 2019 (but it was Ductal) . She is currently being diagnose with another recurrence (contalateral axilar node, but doctors are checking if it somewhere else) . During these almost 11 years her QOL has been great (as if she wasn't sick).

She was 54 at the time of he MBC diagnosis.

Alicia

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Juliecharlie

Thanks so much for taking the time to reply . I really appreciate it

Juliecharlie

Thanks for the reply

How did you get on with fulvestrant ? I may be starting that

What immunotherapy are you on now and how are you feeling ?

Once again thanks so much for taking the time to reply

prairiesea

JulieCharlie, I'm sorry to hear about your recurrence, and hope you find a treatment that treats you well. I'm in the middle of my 4th cycle of Verzenio, having switched from Ibrance because of low wbc on every dose. I have found the diarrhea, about which I was also very concerned, manageable with Meta Mucil. At the beginning I had it every 9 days and then it increased to every 6 days and then every 3, which was worrying, though two loperamide after each episode stopped it for a few days each time. But I was only taking 2 Meta Mucil capsules twice a day, and not very regularly. I upped it to 4-5 MM capsules twice a day, and have not had an episode in over a month. I do have to self regulate a bit so I don't tip over into constipation, so sometimes only do one 4-5 capsule dose, but it has worked for me. I'm still on the top dose of Verzenio, 150mg twice a day. Main SE is continued low wbc, but MO wanted me to stick with it as he thinks there's so much bony disease, in my bone marrow, that I'll have neutropenia with any CDK4/6 inhibitor, and I didn't really want to switch to other first-line treatments that seemed like they might be less effective for my extensive bone mets. Lately the neutropenia has been less severe; we'll see, I have my monthly appointment and blood work tomorrow. In other respects my situation is very different (denovo diagnosis, ductal cancer, and bone-only mets), but at least with regard to the diarrhea I can offer some experience. Again, best wishes for successful treatment; sounds like other folks here who have had similar mets have some good ideas.

lauri

Hi JulieCharlie -- no advice since like you I just got diagnosed in November so waiting for insurance clearance on Ibrance, but I share your confusion and apprehension.

And yes, also lobular.

Best hopes for both of us.