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Lynparza/Olaparib Anyone?

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245

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  • NouzayO
    NouzayO Member Posts: 66
    edited June 2019
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    Hi Holly and Jimmy and anyone new to Lynparza! I’m unfortunately off Lynparza after a short 3-4 months but I know how frustrating it is to ask for input on a new drug and only hear crickets!

    Lynparza was really tolerable for me .. initially I had some nausea and vomiting but after I timed my meals around the medication it was quite an easy ride. I really hoped it worked longer because quality of life was amazing!!

    Wishing you all the best and please feel free to ask any

  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited June 2019
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    Nouzay - thank you for responding. I am on day 2 of the drug. I have been eating small snacks before taking the pills. Are you BRCA+? I am assuming you progressed on it, hence the reason you're off of it.

  • NouzayO
    NouzayO Member Posts: 66
    edited June 2019
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    I tested negative for the BRCA gene but my liquid biopsy from Foundation One suggested that My tumor mutated to be BRCA positive so I have a somatic mutation not a genetic one .. even though this is not the ideal situation to use Lynparza, I still went for it because I really didn’t want to go back to IV chemos but if you have the gene you should be better off on this drug.

  • Vidya99
    Vidya99 Member Posts: 10
    edited June 2019
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    Olaparib is not for BRCA1 positive? I thought it works for BRCA1 +ve.

  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited July 2019
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    Vidya, Olaparib is for BRCA+. I don't think it worked for the somatic mutation Nouzay had.

  • Vidiot
    Vidiot Member Posts: 4
    edited July 2019
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    Hi there, I just started Lynparza two weeks ago and so far it has been pretty easy as long as I take it with a little food. I'm BRCA2+ and have had steady progression through Ibrance/Faslodex and Taxol, so hoping for some better luck here! It doesn't seem like there are too many people taking this, but I'm hoping to hear more about others' experiences...

  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited July 2019
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    Vidiot - I just started taking it two and a half weeks ago after faslodex and ibrance failed (3 months). It never worked for me. However, I know olaparib is working because in jusr the short time I have been on it, the lymph node in my supraclav area (which progressed on F/I), has shrunk to where I can't feel it! I am BRCA 2+. Hope that gives you hope! It isn't bad as long as you eat a little before taking the pills.

  • Vidiot
    Vidiot Member Posts: 4
    edited December 2019
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    That's fantastic, Hollyli1202, and I wish you continued success! I just learned that my tumor markers went up again, so I'm tempering my expectations, but it's early yet! Nice to see someone else taking this drug besides me...

  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited December 2019
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    If anyone is reading this thread... I wanted to let you know I have been on Lynparza for 6 months now and it's working. My 3 month scan showed NED. My 6 month scan which was this past week shows I am still stable with NED.

  • Vidiot
    Vidiot Member Posts: 4
    edited November 2020
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    That is such great news — congrats! I too have been on for almost six months and am seeing some good results... significant shrinkage in both large tumors in my last scan. I've also found this treatment very easy in general. Hoping it keeps working for both of us for quite some time.

  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited December 2019
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    vidiot - that is wonderful news!!

  • Batfax
    Batfax Member Posts: 27
    edited December 2019
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    My wife is hopefully starting this soon (her 11th line of treatment) after irinotecan failed, so it's a bit of a hail mary. Her liver is in rough shape--we had a biliary catheter installed after her bilirubin climed to 10.7. Interestingly, she's BRCA negative, but her cancer cells do have the mutation, so we're hopeful it will have some effect.

  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited December 2019
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    batfax - only good thoughts and prayers for your wife. I know researchers are starting to give this drug to more patients who aren’t necessarily BRCA+.

  • Batfax
    Batfax Member Posts: 27
    edited January 2020
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    Holly, thanks. They Lynparza seems to be having some positive effect as it, combined with the biliary catheter have lowered her liver numbers and bilirubin. However, she's started to develop severe ascites that have really impacted her quality of life. She had four liters removed this morning and she's only 5'2" and less than 100 lbs.

  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited January 2020
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    batfax - how is your wife

  • texaslaughter
    texaslaughter Member Posts: 9
    edited January 2020
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    I haven't posted but wanted to add to this thread that I recently started Lynparza about a month ago when first diagnosed with liver and bone mets. I am BRCA +1, TNBC. I didn't start out taking the drug right, I took half dose not realizing it was supposed to be 2 pills twice a day so technically I have only been on the full dose for 2 weeks. I had some nausea with it which is much better as long as I eat food. I had a bad reaction to a bone treatment and other meds when I first started taking it so I didn't know if I would be able to tolerate it. We ended up stopping most other meds and at that point I haven't had any issues. My WBC is low, which I was surprised by since I struggle with anemia I thought it would impact my RBC but it really hasn't. We took blood work 2 weeks in when I was on half dose and my tumor markers had risen 30%, by the time I came back when taking the full dose they had dropped back down 35%. The meds are working, I don't have the bone pain I had, but I do have some liver discomfort at times. There is not a lot of us out there on these meds for MBC so it's hard to get information. I hope these meds continue to work forever - they are so tolerable. I'm still struggling mentally with the diagnosis so I sometimes second guess it but I'm hopeful. Treatment has come a long way in such a short time. When I was first diagnosed 5 years ago I had really 1 option - chemo. And when that was done it was wait and see.

  • Vidya99
    Vidya99 Member Posts: 10
    edited February 2020
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    I am BRCA1 +ve

    In May/June 2018 CT scan showed local recurrence of my breast cancer. It showed two small tumors on chest wall and few lymph nodes were also swollen and active. MO has put me on Olaparib/Lynparza from mid July 2019. The 3 month scan in Oct 2019 showed NED, the tumors were gone and lymph nodes became silent.

    The 6 month scan last week in Jan 2020 showed a hypervascular focus(1.2 cm by 0.8 cm) in a new site. Radiologist says it is non specific and further testing required by ultrasound and maybe biopsy. I am so worried and If it turns out to be another local recurrence I had to go for radiation.

    Are there any other options for me instead of radiation? I am reading about cryoablation or HIFU research. Did anyone try other kind of treatments who is in a same boat as me.



  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited March 2020
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    I have now officially surpassed the PFS median of 7 months for MBC-ers! My MO called today after my scans and said my CT looked good. Yay

  • texaslaughter
    texaslaughter Member Posts: 9
    edited April 2020
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    I wanted to give another quick update for Lynparza - my last scans in Feb showed anywhere from a 25% to 100% reduction in tumors with falling tumor markers. Most recent lab work show tumor markers are normal. Lynparza is my 1st line treatment and 6 months ago I was in a pretty bad place, but once I started taking it, I felt a change taking place. I'm hopeful that it will get me to NED, but I have a long way to go. I have been on the drug for ~4 months.

  • arolsson
    arolsson Member Posts: 94
    edited July 2020
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    Hi everyone, I'm new to this thread.

    about 3.5 weeks ago my MO told me we were out of options and that my liver tumor now covers a third of my liver. So stay on Doxil which might slow things a little or stop everything and wait for a shorter goodbye. Then my Foundation One test showed a PALP2 mutation (hereditary, tho I do not have the BRCA 1 or 2 mutations) but this was enough to convince the tumor board to let me try lynparza. Fingers crossed! I hear it's rough, but so has all the other treatment been.No hand-foot syndrome, chronic diarrhea or hair loss sounds good to me! best to all, arolsson (Sweden)

  • 3-16-2011
    3-16-2011 Member Posts: 279
    edited July 2020
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    I was on lynparza briefly. No side effects at all. There is one other parp inhibitor available Talzenna. If lynparza is not effective.

    Good luck to you.

    Mary

  • Sary
    Sary Member Posts: 43
    edited July 2020
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    Hi there - I'm hoping for a bit of research assistance on the drug Olaparib. I had a liver biopsy sent to Foundation One and found out that I have a BRCA1 mutation. We believe it is a somatic mutation, but through communication with Foundation One and my MO, they have confirmed it is a functional mutation (not 100% sure what that means). My MO thinks this means that the drug will be effective. Questions: 1) Is there any research on this as all I keep reading is that this drug works for germline and not somatic mutations. 2) What is the connection with platinum-based chemos? Is this drug ever used in combination with chemo?

    I realize this thread is not very active, but just thought I'd throw the question out there for those researchers who might stumble upon it. Thanks!

  • arolsson
    arolsson Member Posts: 94
    edited August 2020
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    Hi Sary

    There's lots of research available on the web. I'm no expert but have also recently started Olaparib. My understanding is that is generally used after a platinum based chemo or in combination with same but in my case we are trying it wtihout having used carboplatin. Here is one example of an article that may be useful:

    https://www.nejm.org/doi/full/10.1056/NEJMoa1706450

    After a first week of feeling pretty nauseous and tired I now feel great on Lynparza /Olaparib. Fingers crossed that it will have an effect!

    Not sure if it matters if your mutation is inherited or not. Again, I'm no expert! Let us know how it goes for you!

  • Sary
    Sary Member Posts: 43
    edited August 2020
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    Thank you for sharing your experience so far. I'm glad to hear that you are feeling ok now. I think I am starting on the weekend. I will be sure to post periodically as there don't seem to be many of us on this treatment. I haven't done carboplatin either, so we are in the same boat. Really, really hoping this is effective for both of us.

  • arolsson
    arolsson Member Posts: 94
    edited August 2020
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    Hi Sary and others

    Just a quick update, my blood tests show significant anemia (62, normal range is 117-157) but my tumor marker is cut in half. My MO was pretty excited. Getting 3 units of blood this morning which will hopefully help my fatigue.

  • Hollyli1202
    Hollyli1202 Member Posts: 122
    edited September 2020
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    Hello Ladies,

    This has become an "active" thread.

    Arolsson-that is terrific news that your tumor markers were cut in half. Bummer about the blood tests. Are you on the 150 or 100 tablets? How are you doing now? How is the fatigue?

    Sary - how are you feeling? You've been on Lynparza for a month now.

    I have been on Lynparza since June 2019. I had a tumor in my clavical shoulder/neck area. It also involved several lymph nodes. I was on Ibrance for three months and that did not do the trick - tumor got bigger and more lymph nodes were lighting up. Once I started Lynparza, I began to feel immediate relief. The lymph nodes I could feel were shrinking. I wasn't as tired. I was NEAD by my next scan in September. I am BRCA2+. I've only had A/C/T chemos when I was first diagnosed. The less chemo you have (platinum based), doctors say, the chances are better for Lynparza to help for a longer period of time. My MO was thinking about me doing Lynparza with immunotherapy, but after my scans, we decided against it.

    Good luck, Ladies!

  • arolsson
    arolsson Member Posts: 94
    edited September 2020
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    Hollyli-thanks! Very interesting to hear your story too. I am on 50 mg capsules, 16 a day (8x2). The good news is that I haven't had a blood transfusion in almost 2 weeks. I even went to the gym and am starting up with my weight lifting regime again now that the gym has very strict distancing and hygeine rules.

    I watched some of the "fatigue superconference" last week. It was more oriented to folks with ME or chronic fatigue than with drug induced anemia but nevertheless useful. Interesting debate on whether or not exercise has clinical value or not. Best advice was from a doctor who said patients usually know what works best for them.

    Scan sometime in october to see if the Lynparza is working. Anxious to know and yet would rather not know--you all know the feeling: )


  • Ashlyn
    Ashlyn Member Posts: 93
    edited October 2020
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    hoping to access Lynparza after brain met radiation next week. (Sadly just found out last week my MBC moved

    I’d be getting it through this trial in December fingers crossed


    https://clinicaltrials.gov/ct2/show/NCT04123366

    Olaporib plus immunotherapy


    I would be the first one in Canada I think to join it.

    I’m PALB2+ with huge deletion.

    Nice to see others are managing on this drug. Holly I think we wrote in DMs before. Appreciated hearing your successes.

  • maaaki
    maaaki Member Posts: 105
    edited October 2020
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    Hi, is lymparza working also on bone mets or is it better for soft tissue tumour? I have BRCA2 germlime mutation-probably pathogenic. And I progressed after year on Kisqali and faslodex in two vertebras. I am plannig SBRT and than systemic treatment, however I dont want to start chemo yet, so thinking about Olaparib. Thank you and I wish you great succes with this dru

  • Vidiot
    Vidiot Member Posts: 4
    edited November 2020
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    Checking in... So glad to hear that this is still working for you, Hollyli, and good luck to those that are just starting! Maaaki, I'm not sure about bone mets, but Lynparza has been successful in shrinking my liver mets, two of which are no longer visible. I'm BRCA2+ and have now been on for about 17 months. I've found it mostly very tolerable -- for most of this time the hardest part has been remembering to take the meds! After the first few months, I am even able to take it without food with no ill effects.

    I did suddenly have a bout of severe anemia, with a few rounds of transfusions, about 7 months in. But we lowered the dose (from 150 X 4 to 100 X 4) and that resolved the issue with no loss of benefit until recently. Now one tumor seems to be progressing while the others are stable or shrinking, so I may change treatments. If so, I will be sad to say goodbye to this drug...