Starting Eribulin

[Jhshl512]

Hello everyone

I’m starting my 7th or 8th (I’ve lost count) line of treatment this Friday. I’ve been MBC for 12 years. I was Mets only to my bones until last week. My pet scan showed a spot on my liver. I am er positive and her2 low. Any advice from my friends would help. I feel like I can’t even cry anymore. Thank you for listening and sharing.

The best

Lori

[Kateds]

please hang in there. I have not been on this journey as long as you. Nine years for me. It is constant and wearing. I have no advice, just empathy and solace. And I pray you find the strength to carry on. I’ve had liver Mets from the outset, and I thought I was done for. Surprisingly, they responded well to treatment. I had many, however if you just have one perhaps you could do one of the many interventions they can do with radiation or even surgery. I would ask my onc about some of those. God go with you and keep your fellow journeymen here in the loop. Your fellow MBC friend,

Kate

[Jhshl512 in reply to Kateds]

Thank you Kate

I did ask my Onc about intervention radiology and her response was they only do that when the liver is the primary sight. I love her but think she is wrong, so I will be doing my own research.

Sorry to hear about your Mets to the liver. It gives me great hope that you have been living with this for nine years!! WOW. It’s amazing to hear how we endure so much but keep going. I so much appreciate your response and support 🙏🏻

[NShaft]

This MBC “journey” ( I hate that word. It is not a journey which to me implies a welcome path to learn something. This isn’t that) is exhausting and I’m sorry to hear about your latest findings. Would you mind sharing what treatments you have endured the last 12 years? It might give some hope to those of us who haven’t been at this as long as you have.

[Jhshl512 in reply to NShaft]

Sure, I will try and remember. 2013 diagnosed mbc. 7 years of just faslodex shots every month. 2020, progression. I did ibrance for 5 months then progression. Xeloda for about 7 months then piqray for 1 month. I couldn’t tolerate that one. The next was Truqap I had a horrible reaction to this one which landed me in the hospital My first iv chemo was Enhertu it was a piece of cake for me but unfortunately only lasted about a year. Next was Afinitor which was a pill. That lasted about 6 months. That one was also easy to tolerate. Then I went on IV Taxol. I did very well on that one too. Unfortunately none of these meds lasted very long . Don’t get me wrong, I’m extremely fortunate for the time I’ve been given but I’m also very tired of this road I’m on. I’m now on to my next line which is called Eribulin. I hope this helps.

[Lindoky in reply to Jhshl512]

Hello can I ask where your Mets were in 2013 when first diagnosed with mbc, I’m doing the faslodex shots as well second month it’s all new for me , 2nd cycle kisqali but been off for a couple weeks due to liver enzymes high , I’m scared and hope that the faslodex is still doing something to help with the cancer even without a cdk4/6 inhibitors

[Jhshl512 in reply to Lindoky]

Sure. In 2013 my Mets were found in my spine. A large tumor which was impeding on my spinal cord. It was surgically removed and I was given faslodex shots for 7 years. However, it then was found in my hips, now liver Ugh!!!

[Dragonfly2]

while I want to congratulate you on your long journey with MBC, I also know how exhausting it is to endure the many drugs and procedures … and the longer you survive, the more damage to your body… sometimes I wonder how long I will want to keep trudging down this path if my family, home or financial situation changes. But please hang in there! Everyday there are exciting break throughs in cancer care and improvement in survival. 🥰🥰🥰

[Jhshl512 in reply to Dragonfly2]

Thank you for you encouraging words. They mean a lot🙏🏻

[michelangelina]

Thank you for sharing your story with us, fears and all. Twelve years--that is an inspiration to us all. It has been 7 years for me, and I am fortunate to still be on my first line of treatment (Ibrance/letrozole) but I know that can change at any time. Please know that I am praying for you. You have been through so much--you are obviously a fighter. As Dragonfly2 said above, hang in there!

[Jhshl512 in reply to michelangelina]

Thank you!!🙏🏻.

[Merma]

I’m so sorry to hear of all that you’ve been through dealing with your cancer. I recently read that Enhertu was approved for HER2 low. Is that an option for you?

[Jhshl512 in reply to Merma]

I was on Enhertu for ten months. It was the longest I’ve ever been on a med. I tolerated it very well but then had progression in my spine. Thank you for your suggestion and thank you for thinking of me. I do thank God everyday for my 12 years and always pray for more. Hopefully we all last until there is a cure. Best to you and keep believing 🙏🏻

[Iwasborntodothis]

It sounds like we are in a similar place. I am classified as "heavily treated". My cancer per my December PET is undetectable in my lungs and in the original breast tumors. My bones are showing 'healing" and no new spots. My liver is the problem and has gotten worse.

Erubilin is tough and we have been experimenting with my dose and timing of my dose. I believe the Doc and the hospital pharma staff have more leeway on this because the drug is "old" and no longer bound by original patent approval language. ( I could be way off base so nobody yell at me please)

Despite how bad the side effects were after full dose (low blood counts, low platlets, nausea (lost 10 lbs) having to skip treatment....my CA-15 went down 50 % after first treatment (3000 to 1500)and another 50% (down to 500) yesterday. My liver blood numbers - ALT, AST, and Bili are now within or close to normal range too. We are trying to do a reduced dose every other week and an "on-pro" growth factor shot with both doses because the neutropenia (sorry spelling) after dose one was very scary. I think I have the tools I need now in terms of nausea meds etc to get through this round and we are very hopeful. If this approach doesn't work, we will try 3 weeks on and 1 week off at a smaller dose as Doc says this was a success in a UA trial.

You can message me any questions I'm just not on here much.

Allison

[Jhshl512 in reply to Iwasborntodothis]

Hi Allison. Sorry to hear about the trouble you’re having on Eribulin. My Onc also said this was an old chemo but it supposedly targets the liver. I also had 2 more spots show up on my spine. I have had one infusion so far and getting the second one this Friday. Were you on it awhile or did the side effects start right away. I’m trying to stay strong for my family and myself but it can be exhausting. Please keep your chin up and as always “one day at a time”

Lori