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Comments

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited January 2022

    Ok, my biopsy results are partly in. I’m now ER-, was ER+, still PR-, and HER2 eqivocal (2+) with amplification in progress. That’s similar sounding to original biopsy which turned out HER2-. I’m wondering what MO will do now, because both Fulvestrant and Verzenio, which I just started are for ER+. I guess the ER flip explains the progression

  • s3k5
    s3k5 Member Posts: 411
    edited January 2022

    MO called me with MRI of liver report. Immunotherapy is not working, there is an increase in the size of the liver lesions. I have gone through 15 lines of treatment so far. My choices are limited.

    MO suggested Eribulin starting next week. I know some of you were on this drug for a long time - was it tolerable? What was the worst side effect you had? Has anyone tried icing for peripheral neuropathy and hair loss? Any tips and suggestions to deal with the side effects would be welcome.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    S3...sorry for progression... 1st time I did Halaven my only side effects were GERD and Lost my hair... the 2nd time I did it I got fevers and felt HORRIBLE...and reduced to 50% and progressed. I hope you do well on it.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited January 2022

    Hi S3K5. I'm sorry to hear about the progression. I have just started Eribulin - second infusion of the first cycle tomorrow. I found the first infusion very tolerable with no nausea or issues. Biggest thing for me is fatigue which I really felt from about day 3-5 and then improved. I also had headaches which are a known SE but they weren't debilitating and, on day 4, woke with some achiness which again, is manageable. I know some have premeds but they don't do that here and I haven't needed them. The chemo nurse indicated that most people who have hair issues have thinning, not total hair loss although that's not something that I am particularly worried about. As to neuropathy, I haven't experienced it yet. While I've been on many treatments my time on Taxol was short and five years ago. I was on Vinorelbine for three months which can cause neuropathy but so far so good.

    There are some that have been on Eribulin for quite awhile. Wishing you success on it.

  • moth
    moth Member Posts: 3,293
    edited January 2022

    S3K5, that's disappointing news. I'm sorry that your cancer is being such a dick. I hope the eribulin works super well for you.

    I'm still waiting to hear on approval for Trodelvy. Getting impatient but not much I can do on my end. I suspect everything is backlogged first from Christmas and now from covid absences. Every dept seems to be running short.

  • s3k5
    s3k5 Member Posts: 411
    edited January 2022

    NicoleRod , sorry to hear about your SEs with Eribulin. Are you on the same drug or has your MO switched you to a different drug? Hope you get on the treatment that is tolerable.

    Sadiesservant , I am glad you didn't have overwhelming side effects after your first dose. Hope your other doses are equally easy. We'll keep each other updated on the Halaven thread.

    Moth, thanks for your response. I go to Sloan Memorial Kettering Cancer center and the staff shortage is all over. Wait times are longer but my MO is kind of aggressive in terms of treatments. I hope you start Trodelvy soon and it does wonders for you.

    Has anyone heard from Grannax or AlabamaDee?

  • susaninsf
    susaninsf Member Posts: 1,099
    edited January 2022

    S3K5,

    Wow. I thought I had been on a lot of treatments! On my 11th now. I'm pretty much out of options too which is why I went on a Phase 1b clinical trial. Phase 1 trials are the only trials that will take heavily pretreated people. Thanks to my MO, I was able to get on the trial without taking any extra time off between treatments. I'm hoping that I can stay on this trial until something new gets approved, like Enobosarm (recently fast-tracked) or one of the oral SERDS (don't know why they are taking so long). Since you are at MSK, you must have access to a lot of trials.

    I am feeling hopeful despite the many limitations.

    Hugs, Susan

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    S3 I stopped Eribulin back in Nov or Dec...I had 2 infusions of Trodelvy in Dec...then got covid and have not had any treatment since. So right now we are suppose to go back to Trodelvy....

  • candy-678
    candy-678 Member Posts: 4,171
    edited January 2022

    Looks like Grannax has not been seen since November. Anyone remember the name of the organization that she modeled for? I was going to see if I could track down her real name. I knew it at one point, but have forgotten.

  • moth
    moth Member Posts: 3,293
    edited January 2022

    sent you a PM, candy

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    Has anyone PM'd Grannax? I can and will if no one has yet.

  • candy-678
    candy-678 Member Posts: 4,171
    edited January 2022

    Nicole- I have not PM'd her. You go ahead and see if she responds. From what I can tell, she has not logged onto BCO since Nov.

  • chico
    chico Member Posts: 197
    edited January 2022

    I do hope that Grannax is just taking a break. Also has anyone seen Snooky1954

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    Hi all REF: Grannax...

    I wrote to her and she asked me to share this with you all:

    I found out the trial is not working so I told them I would not participate anymore. Also, I had the talk with my primary oncologist. I decided to do no more TX.

    I am going to have a PleurX put in. The procedure is scheduled for January 20

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited January 2022

    And what about Alabama Dee? I know there was some trouble with her account on BCO. Is anyone in touch with her

  • BevJen
    BevJen Member Posts: 2,341
    edited January 2022

    Nicole,

    Thanks for the info about Grannax, even though it's not great news.

  • elderberry
    elderberry Member Posts: 1,068
    edited January 2022

    Nicole: Thank you for the update on Grannax. I was hoping for better news.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    Rosie...Dee is doing ok I have been in touch with her via email. :)

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited January 2022

    Nicole, thanks for the info on Grannax (sad to hear) and Dee. I thought Dee might come back under a new account, but glad to hear she’s doing ok. If you write back to Grannax, please let her know we’re thinking about her and hope she’s comfortable.

  • candy-678
    candy-678 Member Posts: 4,171
    edited January 2022

    Thank you Nicole for letting us know about Grannax and Alabama Dee. I respect everyone's wishes for their future, but I do wish that they would just post a "goodbye" post that they are not going to post here anymore. To just drop off is scary and sad.

    Wonder about HopeandGratitude too. She last posted in the summer I think. She was having progression and posted about that and then nothing.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    Candy...I agree and I will definitely post a goodbye when I go on hospice and stop treatment.

    Also HopeandGrattitude...I know I am crushed over not hearing from her and I did reach out a couple of times since her last post.

  • s3k5
    s3k5 Member Posts: 411
    edited January 2022

    Nicole, thanks for the update from Grannax. Sad to hear that she has decided to stop treatments.
    I agree with Candy - a post to say goodbye would be good.

    Many have stopped posting which is scary.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    Hi ALL ... Alabama Dee wanted me to let you all know she misses you all ! :)

  • susaninsf
    susaninsf Member Posts: 1,099
    edited January 2022

    Thanks Nicole! Please let AlabamaDee know that we miss her terribly and hope she can join us again soon. Is she at least able to read the postings?

  • bsandra
    bsandra Member Posts: 1,030
    edited January 2022

    Uh, Grannax... nooo, I still hope she'd try some other treatment. Ahh...

    Saulius

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited January 2022

    (cross posted with Mel's Living Room)

    I had an interesting appointment with my MO about what my next treatment will be. I've recently flipped to triple negative. MO reviewed her two most likely recommendations (Xeloda and Taxol) and a clinical trial being done in my hospital system studying a notch protein in triple negative bc. She still wants to get the info from Foundation One before deciding on a next step. My contact info has been given to the clinical trial staff and I would need to qualify by being tested for this notch protein that's common with triple negative. That's about all I know about the trial other than it's been going for some time and accruing some positive results. I'm up for going further and finding out specifics and whether I qualify. Two weeks till next appointment and although I'm concerned about the new lesions, I could really use two weeks to recover from my hip/leg pain and my lack of appetite issue before starting a new treatment.

    Edit: found the infohttps://clinicaltrials.gov/ct2/show/NCT04461600


  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    So Rosie I just looked at that trial and a person cannot have had more than 3 lines of systemic treatment...that leaves me out....

    1. Documented tumor progression following no more than 3 lines of systemic chemotherapy, PARP inhibitor therapy or immunotherapy for metastatic disease, as appropriate. Of note, neoadjuvant and adjuvant therapy will not count as prior lines of therapy.


  • Rosie24
    Rosie24 Member Posts: 1,026
    edited January 2022

    Sorry to hear that, Nicole. I wasn’t sure what exactly neoadjuvant or adjuvant meant. I think neoadjuvant is before any other treatment, like to shrink tumor for surgery? I’ve had only Ibrance/Letrozole so far. Almost 3 years. My MO thought I’d be a long responder but I guess it wasn’t to be. I hope you have a great response to Trodelvy. If I remember right you’ve already had a good scan with it?

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    No rosie..I only had 2 treatments of Trodelvy and then Covid and had to stop for a month I re-started today so I don't think I will be scanning till March. If you got 3 years out of Ibrance that is a LONG run...my goodness I have not gotten more than 3 months on a treatment...

  • B-A-P
    B-A-P Member Posts: 409
    edited January 2022

    So I got my Pet report back Yesterday and surprisingly NED from three cycles of Ibrance and Fulvestrant. So happy! The only thing is, is that the pseudocirrhosis is progressing and I still have portal hypertension and ascites. We didn't really talk about that part except that my liver went from being enlarged to smaller, and that pseudocirrhosis looks like cirrhosis on imagine but not on labs. I have read only bad things about it and it's bringing me down even though i'm NED. But that's cause I was in failure in August/Sept and had the bleeds as well.

    I know Husband's wife has it and I'm hoping he will chime in on If his wifes pseudocirrhosis eventually slowed down or is still progressing without loss of function as I know she's done quite well despite. Sigh.. Wish I could just take the good news and run with it instead of stressing about the other stuff.

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