PARP Inhibitors

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Heretoday
Heretoday Member Posts: 11
edited November 2018 in Just Diagnosed With a Recurrence or Metastasis

Is anyone on a PARP inhibitor for Metastatic Breast Cancer

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  • SierraPineapple
    SierraPineapple Member Posts: 47
    edited November 2018

    I just started Lynparza/Olapariband was on a PARP trial in 2016 for Talazoparib (was only stage 3 at that time though).

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  • Heretoday
    Heretoday Member Posts: 11
    edited November 2018

    I am the opposite. Started Talzenna last night. Did the Olaparib trial in 2016. Was also stage 3. What did u think of Talzenna. Are you TNBC or ER+

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  • SierraPineapple
    SierraPineapple Member Posts: 47
    edited November 2018

    I’ve never heard of Talzenna so I can’t offer much insight. I’ll look it up though...always good to know about more treatment options! I’m am TN. The trial you did in 2016...was it the ISPY2 trial by any chance? I hope the Talzenna treats you well :) I’m already having nausea on the Lynparza. Thank goodness for Zofran!
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  • Heretoday
    Heretoday Member Posts: 11
    edited November 2018

    Talzenna is the brand name for Talazoparib. How long have you been on the Lynparza. I found if I took with food I was not nauseated. Have you tried that? I was on the OlimpiAD trial - I believe it was called. I took Olaparib for the year - Stage 3C, BRCA 1 +. What side effects did you have on the Talazoparib? Did you do that prior to chemo? Or after

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  • SierraPineapple
    SierraPineapple Member Posts: 47
    edited November 2018

    Oh well in that case...the Talazoparib was easy to handle! The first infusion was rough and I was layed out of the sofa very nauseated, but after that it got much better. Only slight nausea which was controlled with Zofran and my hair only thinned. I was on it alongside Irenotecan. It cleared up my lymph node as well as a secondary small breast tumor. My large 4.5cm tumor shrunk to 2.5cm in the 3 months of treatment. This was the first treatment I ever had so afterwards I did AC since this wasn’t considered real treatment being a trial and all. I’m not BRCA or any other gene positive, but I feel like I didn’t well on this drug. How was it for you? Did it work well for your tumors (I’m assuming you had one as most studies require it).

    I’ve been on Olaparib for less than 24 hours and did take the pills with food for the first doses. Today I didn’t and it didn’t seem to make much of a difference unfortunately. I’ve notice though with all my treatments, that my body goes through this rebellious shock phase and then mellows out a bit. Usually there is a pattern to treatments and how my body reacts. It just takes time to figure it out. How did you do on the Olaparib? A year is great! I hope I can go that long.

    Are you tolerating the Talzenna well? Do you have any tumors to see if they are shrinking or stable? I’m always glad for stable, but I get frustrated without shrinkage.

    Just saw that a new drug was approved by the FDA today called Vitrakvi, but it only works if you have the NTRK gene mutation.
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  • Heretoday
    Heretoday Member Posts: 11
    edited November 2018

    Oh that’s interesting that you had Talazoparib as an infusion. Was the hair thinning noticeable to on lookers, not that it matters I suppose but, I like to be prepared.

    My story is a bit different. I was diagnosed in 4/2015, had bilateral mastectomy in 5/2015, at which point I was staged 3C. I began chemo in June/2015. 4 rounds A/C followed by 12 rounds of Taxol with Carboplatin every 3rd treatment. Had ovaries removed and 6 weeks radiation. I was deemed cancer free after scans and I did not begin the Olaparib until 4/2016. So I suppose I did not have any tumors at that time. I did the trial for a year. No hair loss, nausea if I took with out food. Biggest issue was low hemoglobin, dose reduce about 4 months in and needed one blood transfusion.

    At the time of my diagnosis I had both ER+/PR+ as well as TN tumors so I had been on an AI for 2.5 years. Then in 3 weeks ago my tumor markers were elevated to about 100, went for scans and biopsy. I have, I guess, not quite tumors per se but cancer cells in my bones, liver and lymph nodes.

    So now I have begun the PARP and we wait.

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  • SierraPineapple
    SierraPineapple Member Posts: 47
    edited November 2018

    Sounds like you have had quite the journey! I don’t think the hair thinning was noticeable to others. How come you did more treatment with the Olaparib after being NED? If you don’t mind me asking. Did you get good tumor shrinkage on the carboplatin? My MO said PARP’s usually work well for those who responded to a platinum based therapy.

    My cancer story started in 2016 also stage 3(b I think). I was always TN, but had high ki-67 at 96%. I did the Talzenna trail, AC chemo, lumpectomy, TC chemo, then radiation. Little did I know I had a local recurrence during radiation. My RO, MO & another MO said my lumps were from radiation & surgery so I finished rads in November 2017 and by February 2018 I had meningeal brain, and lung mets, which is now also skin mets. I’m hoping this PARP inhibitor does something for both of us. Glad they caught yours early enough to not have tumors visible! Do they know if it is still a mix of ER/PR & TN or just one type?

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  • Heretoday
    Heretoday Member Posts: 11
    edited November 2018

    So I was on the Aromatase Inhibitor beginning in January 2016, as that is the standard of care for ER+ BC and that was the cancer that was present in my lymph nodes. The cancer now is essentially TN but is showing 3% ER, apparently that’s a thing. Now I am taking once monthly Faslodex to combat the estrogen.

    Sounds like you have had quite a journey as well. Praying for success with the PARPs for us both.

    How many Talazoparib infusions did you receive

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  • Heretoday
    Heretoday Member Posts: 11
    edited November 2018

    I think I may have misunderstood your question. I did the Olaparib trial because they were looking for people with BRCA + status to test the drug in the neoadjuvent setting. Hard to know if it worked but keeping it at bay for a few years or if it was just waiting until now to rear it’s ugly head. I guess that’s the million $ question. Where r you feom

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  • SierraPineapple
    SierraPineapple Member Posts: 47
    edited November 2018

    Just when you think cancer doesn’t get weirder you turn a corner and find out something new! I had 6 infusions on the first PARP. I was kind of sad to stop that and go to the AC since it seemed so mellow. I’m from California. And million dollar question is right. I wonder if you could go back to the first PARP treatment as a potential option in the future if needed...

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  • Heretoday
    Heretoday Member Posts: 11
    edited November 2018

    Yeah, not sure about that. Was the Parp not working? Or just not working enough? Or was 6 infusions the max they would give

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  • SierraPineapple
    SierraPineapple Member Posts: 47
    edited November 2018

    6 was the max they would give because it wasn’t meant for continued systemic treatment. Plus I think that was part of the study protocol. My MO said being on trial isn’t seen as being treated as it’s not a standard of care. I order to ‘treat’ me I had to do a SoC like AC. Where are you from? I’m hoping as part of the compassionate care act here I can choose to go back to that treatment one day.

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  • Heretoday
    Heretoday Member Posts: 11
    edited November 2018

    I would think so! It was just FDA approved as a pill in mid October. Especially if it worked. But Olaparib is said to work equally as well. I think doctors like to mix it up to “confuse” the tumor. What treatment did you do from January until now?

    I live in Westchester County,about 20 minutes North of NYC.

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  • SierraPineapple
    SierraPineapple Member Posts: 47
    edited November 2018

    I was done with treatment Nov 2017, then we found the brain tumor and I had surgery right away. I went on an Immunotherapy trial. It didn’t go too well! MO took me off for a few months. I was so scared. We decided to keep doing the Immunotherapy without the study oral pill. So far that has kept my breast tumors stable. We added Avastin because I have swelling in my brain for some reason. No one knows why. It’s made me lose about 50% of my vision. The Avastin is very slowing helping to reduce the inflammation, but it might also help on the cancer front as it used to be used for breast cancer. Now we have added the PARP inhibitor to help control the lungs and skin mets.
    I worry about the cancer outsmarting the treatments so if we can confuse it I’m on board!

    I’ve seen that there is a top rated cancer treatment center in NYC. We have a good one here too. It makes me afraid of ever having to move.
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  • Heretoday
    Heretoday Member Posts: 11
    edited November 2018

    That’s good to know about immunotherapy working to keep things stable.

    Did you have symptoms with your brain Mets? Or do they just do a Brain scan along with your other scans?

    This is all such a nightmare.

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  • SierraPineapple
    SierraPineapple Member Posts: 47
    edited November 2018

    I was lucky enough to have symptoms! I had a terrible migraine one day. One of the worst I’ve ever had. It got better each day and it just so happened that I had a RO follow-up exactly 2 weeks from that migraine. I told her how I still had some residual head pain 24/7 and she asked a few questions and was concerned. She ordered an MRI which i scheduled 30 days later. The head pain was so slight I was very close to canceling it! I literally dialed the imaging #, but stick with my motto better safe than sorry. Seeing the tumor on the scan made my MO take my 2 breast lumps seriously at least. We did the full work-up of scans and saw the lung spots (only 1-2mm each at the time).She just didn’t think the cancer would come back during radiation in the area of radiation! Plus she told me I had ‘had sooo much chemo’ so I trusted her like a child trusts a parent. It is a nightmare, but at least we have each other :) as they say misery loves company.

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  • Heretoday
    Heretoday Member Posts: 11
    edited November 2018

    That is what they say. I’m glad you were able to take care of Brain mets! That’s unbelievable!

    It’s odd to sit here having no symptoms knowing there’s cancer inside. I have such fears of the day I’m able to feel it.

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  • SierraPineapple
    SierraPineapple Member Posts: 47
    edited November 2018

    I feel like it’s worse when you can see & feel it!!! I mess with my skin tumors and push around the breast tumors all the time. I can’t forget about cancer even if I wanted to pretend. I’ll PM you though so we can’t keep talking and stay in touch :)

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