Clinical Trial - LSZ102 with Ribociclib

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  • zarovka
    zarovka Member Posts: 3,607
    edited November 2017

    Animal Crackers - I am huge fan of you. Figuring out your gut is another "personal journey". The only thing I am sure of is that these treatments screw up the flora and that will guarantee problems. How to fix it is a big question. The program I am in stresses diet. I do experiment with probiotics and pre-biotics. Most recently in Japan I picked up this a product which contains the metabolites of good bacteria. Seemed like a good idea if you have to take drugs the continually disrupt the gut flora. These cancer treatments are not like an antibiotic that you can recover from when you finish the course.

    >Z<

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  • SonyaS
    SonyaS Member Posts: 11
    edited November 2017

    Cathy

    I was just looking to see how long I have been on . It's really only been one week and two days. Feels longer. Interesting you mentioned anxiety and insomnia. I am having trouble with this as well. I was just starting to think it may be the LSZ102. The research nurse suggested Gasex for my stomach discomfort. Not really cutting it. Given that you are experiencing similar side effects, I'm starting to think it may be the trial meds. I'm going in Thursday for labs and my second biopsy. My first biopsy confirmed that I am still very ER+ (95%) PR+ (%)%) and this time they checked AR which was also very + (90%). Its frustrating that I didn't respond longer to standard hormonal tx. 'm not due until December for my first scan. Not sure how I feel about waiting that long. I was wondering if they can peek when they do the biopsy. They did a mini ct scan with the first biopsy. I'm sure I would be able to better handle any side effects if I knew the tx was working. I'm just really nervous that what I am feeling is progression.. but it may be too soon to tell. UGH. I hope you have less gastro issues once starting up again. I didn't know it was an option to pause.. hmm


    Best,

    Sonya

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  • SonyaS
    SonyaS Member Posts: 11
    edited November 2017

    Hi Cathy,

    Thinking about you today.. I think you had your follow up with onc? Hope it went well.

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited November 2017

    Hi SonyaS - thanks for checking in on me.  Sorry I haven't responded sooner.  I've been procrastinating updating this thread since I am now officially off the clinical trial and working on decisions for the next treatment plan.  My next post will have the full update.  Hope to have it up at some point today.

    How have you been doing on this protocol?  Have you had more side effects and what are they?  I actually didn't experience any intolerable side effects in the first 4 months on this treatment.  I was very happy with how I felt.  But the last two months have been a different story.  I was experiencing extreme bloating (but not gas) in my belly along with some nausea and burning.  I had no trouble with bowel movements which is unusual for me as I am typically constipated, but the bloating was just awful.   In addition my back and ribs were hurting.  And for the first time in over 3 years my CEA tumor markers climbed a bit.  I was due for my surveillance scans on Nov. 27 but in light of my issues my onco said lets do them now.  So I had CT Scans on Nov. 16 and the bone scan on Monday, Nov. 20 and met with my onc Monday.  Low and behold - there was progression in my liver met(s) and in a couple areas in my bone mets.  So not only was I not tolerating the treatment well anymore but it actually had stopped working.  

    Let me know how you are doing.  I hope this treatment is working better for you!

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  • SonyaS
    SonyaS Member Posts: 11
    edited November 2017

    Cathy,

    I also did not fair well on this trial. I had nausea and vomiting. I also had an earlier scan to find out my liver progressed. My CEA went through the roof!. So I am now on Gemzar and feeling much better (ironic since I"m back on chemo) . Hoping that it works. Would like to consider adding Carbo but my onc is concerned about my counts. I have had issues with my platelets. I guess we will have to wait and see. .. Hoping there will be something new and exciting down the pike. Look forward to hearing what you try next.


    Sonya

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited November 2017

    Cathy, I am sorry to hear about your progression. I do thank you for keep us informed during your participation in the trial. As you know, education from others with MBC is always welcome and useful. Have you been presented with options for your next treatment plan or are you waiting for more info from your MO?

    Hugs and prayers from, Lynne


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