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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 4 or Mets.

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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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Jun 21, 2019 02:32AM NouzayO wrote:

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

Dx 9/15/2016, DCIS/IDC, Right, 1cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- (FISH) Hormonal Therapy 10/1/2016 Femara (letrozole) Targeted Therapy 10/14/2016 Ibrance (palbociclib) Chemotherapy 3/31/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 12/8/2017 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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Jun 22, 2019 11:07AM Hollyli1202 wrote:

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.

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Jun 22, 2019 10:33PM NouzayO wrote:

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.

Dx 9/15/2016, DCIS/IDC, Right, 1cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- (FISH) Hormonal Therapy 10/1/2016 Femara (letrozole) Targeted Therapy 10/14/2016 Ibrance (palbociclib) Chemotherapy 3/31/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 12/8/2017 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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Jun 28, 2019 10:06PM Vidya99 wrote:

Olaparib is not for BRCA1 positive? I thought it works for BRCA1 +ve.

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Jul 3, 2019 11:05PM Hollyli1202 wrote:

Vidya, Olaparib is for BRCA+. I don't think it worked for the somatic mutation Nouzay had.

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Jul 8, 2019 11:56PM Vidiot wrote:

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...

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Jul 9, 2019 08:17PM Hollyli1202 wrote:

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.

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Jul 11, 2019 01:39AM - edited Dec 8, 2019 04:29AM by Vidiot

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...

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Dec 7, 2019 07:44PM Hollyli1202 wrote:

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.

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Dec 8, 2019 04:32AM - edited Nov 23, 2020 07:08PM by Vidiot

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.

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Dec 11, 2019 11:41PM Hollyli1202 wrote:

vidiot - that is wonderful news!!

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Dec 12, 2019 03:55PM Batfax wrote:

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.

Husband/Care-giver Dx 12/2012, IDC, Stage IIB, ER+/PR-, HER2- Dx 8/2015, IDC, Stage IV, metastasized to liver Dx 12/2015, IDC, Stage IV, metastasized to brain Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy AC + T (Taxol) Radiation Therapy External: Brain Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy Taxol (paclitaxel)
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Dec 21, 2019 09:50AM Hollyli1202 wrote:

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+.

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Jan 2, 2020 11:00AM Batfax wrote:

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.

Husband/Care-giver Dx 12/2012, IDC, Stage IIB, ER+/PR-, HER2- Dx 8/2015, IDC, Stage IV, metastasized to liver Dx 12/2015, IDC, Stage IV, metastasized to brain Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy AC + T (Taxol) Radiation Therapy External: Brain Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy Taxol (paclitaxel)
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Jan 18, 2020 03:12PM Hollyli1202 wrote:

batfax - how is your wife

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Jan 19, 2020 09:46AM texaslaughter wrote:

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.

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Feb 6, 2020 01:26AM - edited Feb 6, 2020 01:26AM by Vidya99

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.



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Mar 4, 2020 12:38AM Hollyli1202 wrote:

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

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Apr 26, 2020 09:53AM - edited Apr 26, 2020 09:55AM by texaslaughter

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.

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Jul 4, 2020 03:49PM arolsson wrote:

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)

Dx 8/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone/liver, 5/5 nodes, ER-/PR-, HER2+ Surgery Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy Halaven (eribulin)
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Jul 4, 2020 04:32PM - edited Jul 4, 2020 04:33PM by 3-16-2011

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

3-16-2011 Dx 3/16/2011, IDC, 2cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Chemotherapy 5/3/2011 AC + T (Taxol) Surgery 10/18/2011 Prophylactic ovary removal Radiation Therapy 11/10/2011 Surgery 10/10/2012 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Dx 11/5/2014, Stage IV, ER+/PR+ Hormonal Therapy 1/1/2015 Aromasin (exemestane) Targeted Therapy 10/15/2015 Afinitor (everolimus)
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Jul 22, 2020 12:08PM Sary wrote:

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!

Age 38 at diagnosis, Oncotype 23 Dx 3/14/2014, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Hormonal Therapy 5/15/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 11/2015, Stage IV, metastasized to lungs Dx 6/2018, IDC, Stage IV, metastasized to liver Dx 11/2018, Stage IV, metastasized to bone Targeted Therapy 5/31/2019 Afinitor (everolimus) Chemotherapy 10/31/2019 Xeloda (capecitabine) Chemotherapy 1/28/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 2/2020, Stage IV, metastasized to brain Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole)
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Aug 5, 2020 04:22AM arolsson wrote:

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!

Dx 8/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone/liver, 5/5 nodes, ER-/PR-, HER2+ Surgery Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy Halaven (eribulin)
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Aug 5, 2020 12:06PM Sary wrote:

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.

Age 38 at diagnosis, Oncotype 23 Dx 3/14/2014, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Hormonal Therapy 5/15/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 11/2015, Stage IV, metastasized to lungs Dx 6/2018, IDC, Stage IV, metastasized to liver Dx 11/2018, Stage IV, metastasized to bone Targeted Therapy 5/31/2019 Afinitor (everolimus) Chemotherapy 10/31/2019 Xeloda (capecitabine) Chemotherapy 1/28/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 2/2020, Stage IV, metastasized to brain Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole)
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Aug 11, 2020 02:32AM arolsson wrote:

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.

Dx 8/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone/liver, 5/5 nodes, ER-/PR-, HER2+ Surgery Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy Halaven (eribulin)
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Sep 11, 2020 06:50PM Hollyli1202 wrote:

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!

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Sep 14, 2020 10:05AM arolsson wrote:

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: )


Dx 8/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone/liver, 5/5 nodes, ER-/PR-, HER2+ Surgery Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy Halaven (eribulin)
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Oct 15, 2020 09:03AM Ashlyn wrote:

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.

** Dec 2020 - Present: MK-7339-007/KEYLYNK-007 trial (Pembro + Olaparib) ** 2012: DX 28 - stage 2B; 2017: DX 34 - stage 4 (lung, mediastinal nodes) 2020: DX: brain mets at 37 • 2018: PALB2+ Mutation A946_W1038del • RECQL VUS (A503V) likely patho Dx 1/3/2012, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, 1/12 nodes, ER+/PR+, HER2- (FISH) Surgery 2/8/2012 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left) Chemotherapy 4/3/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Whole-breast: Breast, Lymph nodes Hormonal Therapy 11/2/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 5/20/2014 Zoladex (goserelin) Hormonal Therapy 9/1/2014 Femara (letrozole) Hormonal Therapy 3/1/2016 Aromasin (exemestane) Dx 7/10/2017, IDC, Left, Stage IV, metastasized to lungs/other, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy 7/12/2017 Zoladex (goserelin) Hormonal Therapy 9/14/2017 Femara (letrozole) Radiation Therapy 9/21/2017 External: Lymph nodes Targeted Therapy 10/15/2017 Ibrance (palbociclib) Hormonal Therapy 11/13/2018 Faslodex (fulvestrant) Targeted Therapy 11/1/2019 Verzenio Chemotherapy 4/17/2020 Xeloda (capecitabine) Dx 9/2020, IDC, Stage IV, metastasized to brain, ER+/PR+ Radiation Therapy 10/23/2020 Radiation Therapy 11/3/2020 Targeted Therapy 12/15/2020 Lynparza Immunotherapy 12/15/2020 Keytruda (pembrolizumab) Surgery 7/9/2021
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Oct 30, 2020 12:35PM - edited Oct 30, 2020 01:08PM by Maaaki

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

Dx 2013, DCIS/IDC, Right, 1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Dx 5/2017, Stage IV, metastasized to bone/liver, Grade 1, ER+/PR-, HER2- Surgery Mastectomy: Right; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Chemotherapy Surgery Hormonal Therapy Aromasin (exemestane) Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy External: Bone Targeted Therapy Kisqali Surgery
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Nov 23, 2020 07:16PM - edited Nov 23, 2020 07:17PM by Vidiot

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...

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