Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Tomivosertib trial

GG27
GG27 Member Posts: 1,308
edited February 2022 in Stage IV/Metastatic Breast Cancer ONLY

Hi all!

I was looking for some information about Tomivosertib and there doesn't seem to be any here on BCO, so I will start a new thread, hopefully others will join me.

I will be starting a trial of this drug in a few weeks, it is given with Paclitaxol.

here is a link to the US trial information Tomivosertib trial

Comments

  • GG27
    GG27 Member Posts: 1,308

    I'm still looking for trial mates to share wisdom with SE's etc on this trial. I will be starting on Tuesday after liver biopsy and labs on Monday. Anyone else? I connected with one other person who has been on the trial for a couple of months, but otherwise I have heard or read nothing about it. I'm a bit scared and a lot hopeful.

    cheers, dee

  • GG27
    GG27 Member Posts: 1,308

    I'm going to update this thread so that anyone who may go on this trial will have some reference.

    I had a bad reaction to Paclitaxol, 4 times I had an anaphylatic reaction so they have now put me on weekly Abraxance, 3 weeks on/ 1 week off. No reaction, easier infusion.

    The trial drug gave me a very itchy rash so I am now on 50% dose, so 1 capsule a day & that seems to be fine, but I was feeling very poorly for quite a while & thought I would have to drop out of the trial. Nausea, SOB, cough, shaky, overall just feeling very unwell, unable to eat, I lost about 10 lbs in 2 weeks, due to GERD or acid reflux. I am now taking Pantoprazole daily & all those symptoms are gone. The other trial participant that I know had the same reaction & she is taking the same medication to control it.

  • fuzzysocks
    fuzzysocks Member Posts: 13

    I’m currently on the trial. Only a few minor side effects so far including a very slight tremor in my hands. I’ve been taking it for about a month now and have had 3 taxol infusions so far. Fingers crossed that this does the trick

  • GG27
    GG27 Member Posts: 1,308

    Fuzzysocks, thank you for chiming in about your experience. I'm so glad that you are having very few SE's. I know one other person who is on the trial & she had tremors as well as did I, but mine went away when I was dose reduced to 50%.

    The anaphylaxis seems to be somewhat related to BC Cancer Agency as they changed the delivery system & my MO told me that they are having way more of these serious reactions since they changed to this new system.

    best of luck to you! let me know how you're doing, cheers, dee

  • cure-ious
    cure-ious Member Posts: 2,897

    Fuzzy, Can you post some info about your cancer subtype? Thanks for letting us know how this trial goes, its such valuable info..

  • GG27
    GG27 Member Posts: 1,308

    So I'm just checking in here in case there are any lurkers. My trial RN tell me that I am the only patient left on this trial at BC Cancer. I will be starting cycle 10 as my last CT scan was mainly stable with the largest liver tumour becoming necrotic. It's not been a walk in the park, with the trial drug being dose reduced by 50% and after 4 anaphylatic reactions to paclitaxol I was changed over to nab-paclitaxol at 90% every 2 weeks instead of 3 weeks on/ one week off.

    The neuropathy on my feet is increasing bad but I have been able to keep it somewhat under control with gabapentin, foot soaks in epsom salts every night & my pharmacist compounded an ointment which helps.

  • moth
    moth Member Posts: 3,293

    GG are you icing for the nab pacli? So glad this combo is working for you. I have a mutation which supposedly meant a kinase inhibitor might be a good choice for me. My onc tried to access ipatasertib for me but wasn't successful (that was my clinical trial but i'd been randomized to placebo. When trial ended, she wanted me to try the real drug but we couldn't get over the regulatory hurdles) Is your trial still enrolling?

  • GG27
    GG27 Member Posts: 1,308

    hi Moth,

    No, I'm not icing because of the stupid timing of labs & chemo. I have to travel to Vancouver & I've tried getting my ice socks to chemo but with a 4-5 hour road trip/ ferry trip then labs, then 3-4 hours later chemo, the socks are just cool, even in this weather. Icing worked really well for me with taxol. Even when I stay in Vancouver it's too long to keep the socks cool. Maybe I will just take ice packs with me & see if that helps any. Thanks for reminding me to try again.

    I just looked it up & it says it's "pending" so I'm not sure what that means. I will try to remember to ask my trial RN on Monday. Will let you know what she says. cheers, dee

  • moth
    moth Member Posts: 3,293

    I use gel ice packs which i put socks/gloves over. I keep them in a medium sized cooler stuffed with hard ice packs all around. I have it all on a luggage cart so I wheel it all in. Well, I was.... I'm off abraxane now so icing is over.

  • GG27
    GG27 Member Posts: 1,308

    Moth, thanks for the tips, I will try again tomorrow to see if I can keep the ice cold enough.

    I asked my trial RN and she says it’s still open plus there may be a couple more open to you. Just have you MO have a look, she says they all should have a good understanding of what’s available. But then I realized I don’t know if you’re at Vancouver BCCA or not.

    Good luck, cheers dee

  • newgardener
    newgardener Member Posts: 103

    Hi Dee, I just noticed your update. I'm glad to hear that the tomivosertib combo has kept things stable for so long. Hope it continues a lot longer.

    I hope you can sort out an icing solution. The cancer centre I went to in Ottawa was quite helpful on this front when I was on paclitaxel - pre covid they provided booties (!) and post covid they provided ice.

  • GG27
    GG27 Member Posts: 1,308

    So I had a late email from my trial RN, my TM's have gone up another 90 points from 4 weeks ago, so all may not be well on this trial. She indicated that MO may want to put go back onto 3 weeks on, one week off which we switched from because of SE's. Not sure my feet can handle much more neuropathy as Moth indicated was a major reason for going off nab-paclitaxol. I am going to try accupuncture and see if that can help at all.

  • GG27
    GG27 Member Posts: 1,308

    Tumour marker results today, they are stable at 490 which is the same as January. While I would like them to drop, anytime I am stable I'm happy.

    I asked about BC Cancer supplying icing supplies & they only offer gloves & it's only for one single chemo agent. I was able to buy a couple of extra ice packs & take the ice socks with me, they still aren't frozen solid when I get there but better than nothing.

    The trial has been closed, my trial RN told me on Monday. They gave no notice that it was going to close, but she said they made their numbers so didn't need any more participants. Hopefully this will get approval soon. They will continue to supply me with the drug as long as I am stable. My next CT is on the 22nd of February so we shall see what happens then. I started cycle 11 on Tuesday, fingers crossed for more stability.

    cheers, dee


  • iwrite
    iwrite Member Posts: 746

    Stableis great news, Dee! Hope things stay that way for you :)

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.