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Topic: Lynparza/Olaparib Anyone?

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

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Posted on: Feb 1, 2018 01:18AM - edited Feb 1, 2018 01:19AM by geekness

Posted on: Feb 1, 2018 01:18AM - edited Feb 1, 2018 01:19AM by geekness

geekness wrote:

I'm looking to share side effects or just any updates on Lynparza / Olaparib. I just started targeted therapy on Jan 12th. Aside from a little heartburn at first (helped with OTC pill), I've now started some daily Immodium, which the pharmacy sent WITH the Lynparza. Lol. I've started to just feel plain odd and very emotional. I can usually keep it together. I'm wondering if anyone else is yet on this medication. I'm Brca1 Stage 4 (Triple Negative) with mets to lungs and sacrum/soft tissue. I was doing gemzar/Carbo until December, which was keeping three small modules in lungs stable, but not helping anything in sacrum. So we switched it up and both insurance and pharm are helping me with copays on the meds, which I know I am very lucky to have had happen. It seems I can't find a big group yet that's taking this drug to compare how they might be feeling and I'd love to try and connect with a few people. I think even that might help me get right in my brain for a bit.

Chemotherapy 9/2/2015 AC + T (Taxotere) Dx 8/2017, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 3, 0/15 nodes, ER-/PR-, HER2-
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May 24, 2018 03:38AM Lena_Margaret wrote:

Hello! I just started this treatment. I am sure hoping this gets things back under control. After one week, my counts are great. My only side effects so far are a bit of nausea and continuing relentless constipation.

This regimen sure seems rare for us mbc'ers.

BRCA I deleterious mutation Dx 11/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/8 nodes, ER-/PR-, HER2- Surgery 11/3/2010 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 12/29/2010 AC + T (Taxol) Radiation Therapy 7/25/2011 Whole breast: Breast, Lymph nodes Surgery 1/4/2012 Prophylactic ovary removal Dx 1/2015, ILC, Right, 1cm, Stage IB, Grade 3, ER+/PR+, HER2- Surgery 1/14/2015 Lumpectomy: Right Surgery 2/16/2015 Mastectomy: Left, Right Chemotherapy 7/30/2015 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 1/1/2016 Arimidex (anastrozole) Dx 9/2/2016, IDC, Both breasts, Stage IV, metastasized to other, ER-/PR-, HER2+ Surgery 9/2/2016 Lumpectomy: Left Targeted Therapy 9/15/2016 Herceptin (trastuzumab) Chemotherapy 9/15/2016 Carboplatin (Paraplatin), Taxol (paclitaxel) Targeted Therapy 9/15/2016 Perjeta (pertuzumab) Dx 2/16/2018, IDC, Right, 2cm, Stage IV, metastasized to other, Grade 3, ER+/PR-, HER2+ Chemotherapy 5/15/2018 Other
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May 24, 2018 09:28PM Pagej wrote:

I am supposed to start this drug soon for my mbc... I wonder how tired I will be and constipation sounds terrible. Hopefully can find a decent colonics place nearby.


I hate being tired 😓 but I just really hope it works to get things under control

Dx 6/9/2014, ILC, Right, 1cm, Stage IB, Grade 3, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 7/1/2014 AC + T (Taxol) Surgery 12/4/2014 Lymph node removal; Mastectomy; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 5/24/2016 External: Brain
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May 25, 2018 09:40PM denny123 wrote:

Good news, since I still have a bottle of Lynparza in my cabinet.  Might need it someday.

Kadcyla made me very constipated for 4 years and I am still constipated after stopping Kadcyla in November.  I take a dose of Miralax a night and 250-500 mg of WalMart stool softeners each night.

When that doesn't work, I take a small dose of Phillips MOM.

Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2- Surgery 2/20/2003 Lymph node removal; Lymph node removal (Left); Lymph node removal (Right); Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Latissimus dorsi flap; Reconstruction (Right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/10/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/5/2011 Faslodex (fulvestrant) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy
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Jun 4, 2018 06:32PM - edited Jul 16, 2018 01:04PM by srlilly

Hello! I've been on Lynparza/olaparib for almost 3 weeks. I'm BRCA2 (originally diagnosed Stage 3 ER+/PR+/HER2- in 2011; diagnosed with liver mets in Oct 2015). After almost 2 years of chemo (gemcitabine/carboplatin) successfully holding my mets at bay, my cancer decided to park in a new location: my abdomen. So, I'm trying this new drug. No terrible side effects so far, although I do get very tired in the afternoons. I'll see my oncologist tomorrow to get his thoughts. I will say it's quite nice to take a break from the chemo lounge. I'll report back as I learn more!

Update (July 16): I'm writing to report that after 2 shorts months, my oncologist has taken me off this drug. My latest scan showed disease progression. I'm BRCA2 with hormone positive disease and apparently Lynparza doesn't work very effectively in this population. Best of luck to those who are experiencing success with this treatment. I found it easy to tolerate.

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Jul 5, 2018 07:21PM Nan812 wrote:

hi everyone!!.. I have been taking the parp inhibitor called lymparza for almost a year and a half with those first five months getting IV chemo called havalen too. This was right after a craineotomy when one of my brain tumors went wild and they had to rush to take it out, in fact all my cancer woke up so this was the TX decision, after surgery and more gamma knife to the tumor bed.

my hemoglobin started to really drop to the point that I was getting 1-2 bags of blood every week for about 7-8 weeks (right thru my DD wedding ): so they took me off everything for a month....turns out it was the procrit.....yup the drug they push in your IV to help you build blood....just did the opposite on me and it was so awful to have a bone marrow biopsy done while the doc ( not my doc ) is complaining that he can't find marrow... well DUH!!!!..no blood/no marrow...I screamed at him that they had state of the art technologies and they could use what he got and please don't drill my bone again!!

There's a lot more to that whole story but I'll spare you....for now lol

So after 16 months on the lynparza my lashes,brows, and moustache lol have all grown in like normal. My hair is the right thickness but it's growing sooo slow..I should have at least 3inches but there is only one inch. Now in the past couple weeks I have been nodding off at the strangest times during the day. It's bad, I'm scared to drive cuz if I'm stuck in traffic or even at a light I'm scared that I will just nod off...like the ride home after a chemo infusion (out go the lights) so I'm not sure if it's a SE , after all this time it's cumulative, or if I just have some strange sleeping issues.Oh freaking cancer arrrhhh!!!! Well, knock on wood, it seems like the lynparza is working (considering my prognosis of 3-7 months in march of 2015) so I'll just deal with whatever comes along cuz it's still better than the alternative. Love you guys, keep shining bright!!

.



DX 03/13/15;stg4;TN;BRAC1; both breasts,lymph,lungs,bones,adrenal,spleen,brain; 2x8moths chemo,Abraxane /Cytoxan/Adriamycin 2015; gammaknife 5 brain tumors 2015; GK 1 brain 2016; Rad/adrenal 2016; craniotomy2017; GK2017,havalen & lymparza2017
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Aug 7, 2018 07:50PM franbog wrote:

I have been on Olaparib for 25 months now, for a BRCA 1 related metastatic breast cancer which stopped responding to anti-estrogen therapies, and it has worked beautifully.

But I am curious as to whether other people using it have found the side effects to get progressively worse over time, or if they have remained somewhat stable. I seem to be more fatigued and generally feeling more unwell as time goes on (nausea, malaise, moody), although my labs and scans are good.

I have been using OTC meds to help with nausea (as recommended by my onc), and sometimes ritalin on days when I need to be "on", but find that they are not enough anymore. Although the Olaparib is surely better than chemo and radiation (have done those twice) for side effects, I would love to find a way to feel better than I do now.

The oncologist thinks it might be the Olaparib, the neurologist thinks its might be the anti-migraine meds, and so I am trying to sort this all out. Would be grateful to hear other people's experiences. Thanks for your input.

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Aug 8, 2018 05:33AM NouzayO wrote:

Hi ladies,

This is indeed a very short thread compared to others out there .. lol

I am wondering if anyone is using Lynparza for BRCA mutated tumor not BRCA gene. When I first got diagnosed I did the genetic testing and I was BRCA negative but in two years as other treatments failed I asked to get my biopsies tested for possible treatments and clinical trials using the oundation One test .. the biopsies were all unviable unfortunately and they opted for testing the blood instead .. the only thing that came out of this that has potential is finding that my tumor has mutated to be BRCA positive yet my initial gene test is the same .. hence my MO recommended this drug as a possibility but said that’s not the ideal circumstances to use Lynparza.

Any thoughts ???

Dx 9/15/2016, DCIS/IDC, Right, 1cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2-, Hormonal Therapy 10/2/2016 Femara (letrozole) Targeted Therapy 10/15/2016 Ibrance (palbociclib) Chemotherapy 4/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 12/9/2017 Xeloda (capecitabine) Chemotherapy 2/13/2018 Doxil (doxorubicin) Targeted Therapy 5/13/2018 Verzenio Hormonal Therapy 5/15/2018 Faslodex (fulvestrant) Targeted Therapy 1/11/2019 Lynparza
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Aug 8, 2018 07:31PM denny123 wrote:

NouzayO,

If you read my posts above, my chest tumors tested positive for the BRCA Somatic gene, so that is why I qualified for Lynparza.

But since the Poziotinib clinical trial put me into remission, I am on Xeloda and Herceptin instead.

Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2- Surgery 2/20/2003 Lymph node removal; Lymph node removal (Left); Lymph node removal (Right); Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Latissimus dorsi flap; Reconstruction (Right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/10/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/5/2011 Faslodex (fulvestrant) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy
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Aug 23, 2018 01:17AM NouzayO wrote:

thanks Denny for your reply! I’m thrilled for you being in remission!! Can you tell me more about that clinical trial p

Dx 9/15/2016, DCIS/IDC, Right, 1cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2-, Hormonal Therapy 10/2/2016 Femara (letrozole) Targeted Therapy 10/15/2016 Ibrance (palbociclib) Chemotherapy 4/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 12/9/2017 Xeloda (capecitabine) Chemotherapy 2/13/2018 Doxil (doxorubicin) Targeted Therapy 5/13/2018 Verzenio Hormonal Therapy 5/15/2018 Faslodex (fulvestrant) Targeted Therapy 1/11/2019 Lynparza
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Aug 29, 2018 08:01PM denny123 wrote:

Thanks!   You can keep googling Poziotinib to see when it advances to the phase 3....unless it is available in your area.  The last time I checked- it was only in 4 states.

I am in PA and the Hillman Cancer Center in Pittsburgh was the origination of the trial in my area.

I would definitely go with one pill instead of 2 daily.


Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2- Surgery 2/20/2003 Lymph node removal; Lymph node removal (Left); Lymph node removal (Right); Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Latissimus dorsi flap; Reconstruction (Right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/10/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/5/2011 Faslodex (fulvestrant) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy

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