Olaparib

Camper62

Hi - I have been on Olaparib since Feb 2021.  Would love to chat with anyone who is also on it. 

Fearless

Hi @Camper62
We have lots of members who are on it or have been on it, myself included.  Some, like me, as part of clinical trials and others using it for maintenance as has been approved for treatment use.  I'm sure there will be others responding to you but in the meantime, if you key in Olaparib or Lynparsa (its trade name) in to the search bar in the upper right of your screen, you'll pull up the discussions and comments on that topic that currently exist. You might find those useful.

I was on the drug for almost two years, but as mentioned on a clinical trial to test its possible effects as an actual treatment for recurrence in patients who are high grade serous advanced, in recurrence but not yet treated, platinum sensitive in first-line treatment but not BRCA positive....instead carry an HRD genetic mutation.  That said, things like side effects are fairly common across all uses of the drug so if there is anything specific on that front I can share for you I'd be happy to. 

Fearless

RobinD

I'm in my 7th month of Lynparza Olaparib. I'm surviving but I have some really rough days. Extreme fatigue. Aches and pains in mid back, joints. I'd love to know if this is normal for others. I'm grateful that there is a drug that is available. But also pissed about quality of life. At my first check up in August, CA125 was 10...Yippee! Next week is checkup two. Nervous. What are others experiencing?

Fearless

Hi @RobinD
Congratulations on your last CA125. But sorry to hear you're having some side effect challenges with the Olaparib.

Have you discussed them with your oncologist?  If not yet, keep a diary of what you're experiencing to share.  It's very helpful to them in assessing your needs.  I had a very similar reaction at the outset of my use of Olaparib..really rough lower back and joint pain.  We tracked it for 2 months and when it only very marginally improved I was moved from a 300mg dose to 250mg and that made a world of difference. 

 I didn't have any added fatigue but I did notice the improvement that I had been experiencing before I started on Olaparib stopped and the that level of fatigue never changed throughout my use of the drug, even after the change dose. It wasn't a huge issue for me though and honestly thought some of it as just good old aging related. 

I do hope you find some relief from the side effects.  For me the drug was not maintenance, but part of a clinical trial and it was truly a miracle for me for almost two years.  Keeping my fingers crossed for you that your next CA125 shows you continuing in that 0 - 35 range we all pray for.

Best wishes and do reach out any time we might be of some help.
  

LynneA

I have been on olaparib for a month.   I feel like I have no stamina an the nausea is always there even with anti nausea meds.  I keep hoping it will improve but am feeling discouraged.   Any tips?

Fearless

@LynneA
I was on Olaparib for two years. The first month or two had some challenges as my body adjusted to it.  For me, ,mostly joint and lower back aches and ongoing fatigue.  What was helpful was a journal I kept daily describing what I'd done that  day, what I'd eaten and what I was feeling morning, afternoon and evening.  Not my brilliant idea LOL. I was on a clinical trial to tracking like that was part of the process. It was enormously helpful to my oncologist in determining what might be normal recovery issues and those that might be directly a result of the Olaparib.  After trying a few hit and miss approaches (like eliminating certain foods or changing up my exercise routine) to see if they had any effects on the symptoms, and letting it go a couple of months to see if the severity of side effects would lessen as I adjusted we decided to change the dose. I started at the max of 300mg a day and dropped it to 250mg and that did the trick. The aches disappeared.  The fatigue lessened but never totally went away.

The key for me was really ensuring my cancer care team was well informed, not just on the symptoms but also on the severity given the huge difference between tolerable and intolerable.

Hope that helps and good luck on the drug.  For me it was a miracle keeping my cancer at bay for so long. 

  

RobinD

What happens after 2 years? Is there a reason for that time period? Never understood. Are you vulnerable again after that?

RobinD

BTW I've had fatigue be my biggest side effect as well. And I feel cold a lot. Nausea has mostly disappeared. I'm good in the am, walk every morning--then about 3pm I'm done! I have noticed that it's about 5 hours after I take my pills that I feel the worst. I take at 10am and 10pm...

Fearless

@RobinD
Generally where there are time limitations on taking a drug they relate to the either the manufacturer or provincial funding models.  I know of women who were involved in the original Olaparib trials out of the UK 18 years ago and are still on the drug with no evidence of recurrence.  In some cases the pharmaceutical company will fund all or a portion of the cost for a period of time.  Same applies to provincial funding models but each province is different.  Your oncologist should be able to provide the appropriate reference to the time period you're asking about. If it is financially driven and means at the end of two years, if the drug continues to be successful, funding reverts to you then that is a discussion to be had with the financial navigator at your cancer center.  Beyond private health insurance coverage or personal liability, there are often other means to get the cost of the drug covered for a longer duration.  

As for your side effects, as I suggested to LynneA, ensure your cancer care team are aware of the issues you've described. They could just be continuing effects of chemo.  Fatigue, some nausea etc. often continue on post primary treatment; often improving over time but sometimes become chronic and need management.  Other times it is the Olaparib so your cancer care team should be able to find ways to help mitigate or control the side effects or just help manage your expectations.  After all you are taking ongoing medication so there will likely always be some level of side effect. It's being able to distinguish between the tolerable and acceptable versus intolerable effects.   Often those disappear on their own as you body adjusts to the drug.  Sometimes a change in dose helps.  

Camper62

I have been on olaparib for 9 months.  My dose was reduced after the first 2 months as my hemoglobin kept dropping requiring transfusions . But since then, I have been feeling basically good.  Thankful for the drug.

LynneA

I will have been on it 2 months next week.   I  sleep 8 plus hours at night and still have a 2 hour nap.   Feeling like all I do is sleep.   Nausea is some better but I still take ondanstron in the morning and gravol at night.  Wondering if this is reason enough to request a reduction in dose.  I really want to get back to work etc.

RobinD

My blood work has been ok, I'm at the bottom range for hemoglobin and WBC but not dangerously so...I can live with all of this, I just worry about after...will the OC just come raging back once I stop? Is their science on that?

Camper62

I give a sigh of relief every month when my oncologist says my blood work is good.

Fearless

@LynneA based on your side effects and the level of discomfort  or effect on daily functioning your oncologist should be determining if a lower dose might prove helpful while not impacting the efficacy of the drug.  If your next check up is not for awhile you shouldn't wait to initiate that discussion.  

@RobinD there is science on what is expected to occur once the Olaparib is discontinued.  As is usual, there is no one-answer. It differs by patient.  But your oncologist should be able to provide that information.  For me, the drug was only discontinued because it stopped working. But the recurrence for me was quite slow before treatment was required.  

LynneA

Just saw my oncologist.   He listened to my concerns and question about a lower dose and told me 300 is the recommended dose and anything less will not be as effective.   Told me that I "have to own " my decision if I want to lower the dose and that this is cancer we  are dealing with as if I had forgotten.   I was stage 2 high grade serous with no evidence of disease after surgery and still after 6 rounds of chemo.   The tumour had a braca 2 mutation which is why I am on olaparib.   He made me feel like recurrence is inevitable and it will be my fault if I don't stay on the full dose for 2 years.  Then he lightened up and said but of course we could try a lower dose  but I was too scared to do that.   Said I would try it for another month.  Feeling really overwhelmed now.

LynneA

What advice have others received about a lower dose?

Fearless

@LynneA wow, I would be looking for a new oncologist were I you.  Clearly he missed his classes on Bedside Manner 101, notwithstanding his advice is contrary to what I was given when on Olaparib and so many others have reported.

Lowering doses of the PARPs like Olaparib and Zejula is commonly used to manage side effects that cause significant discomfort or impede daily functioning.    All I can think of is he's not taking your level of discomfort seriously or doesn't feel it's sufficient to warrant a change in dose. Then again,  you may not have given it enough time for your body to adjust to the drug.  The latter would make sense to me. Do remember that your fatigue may be more related to your original treatment. It's one of the side effects that takes longest to improve during the recovery phase.  The PARP may only add to it and over time and as you your body adjusts to the PARP it will improve.. It can take as long as a year to get back to 'normal' and for some a level of fatigue never goes away.  Try to be patient and give it a bit more time but if the problem persists to the extent it's impacting the quality of your life and you see no improvement then consider a second opinion.  

LynneA

Thanks for the support.   I would love a better oncologist but the pickings seem pretty thin.  Even the information on the lynparza website talks about reducing dosage so I am not sure where he is coming from.   He also said my symptoms from chemo should be gone and I only finished the end of September.   Some days I am feeling better and others are not so great.   Still hoping my body is adjusting.   It helps just having a sympathetic ear to vent to when needed.   Thanks again 

Fearless

@LynneA...for the first time I'm tempted to make a very disparaging comment about your oncologist and his lack of knowledge and empathy.  But at the end of the day it's unfair of me to make judgements hearing only one side of a situation.

I wonder several things in this situation.  Firstly we are all different in our expectations for recovery and what that means, and in our personal tolerance for discomfort.  Are you expectations for how you should be feeling reasonable?  Is the discomfort you're feeling generally considered quite tolerable for others? Those things do have some impact on how your doctors might perceive the support you need. 

That said, what also plagues me is the attitude your doctor demonstrated and his comments about recovery timelines. I have worked with many oncologists....gynecological and medical...and have never heard one generalize or even assume a patient could be fully recovered and symptom free in such a short period of time following surgery and treatment.  I guess my question is...is this oncologist a gynecological oncologist?  each province and often regions within provinces have differing and distinct cancer support models. I'm fortunate that my own cancer centre oncologists are truly specialists in the type of cancer they deal with.  Myself and my OVC sisters here are all treated by one of the 3 gynecological oncologists along with a medical oncologist specializing in gynecological and breast cancer.  But there are models of support where oncology services are pooled among a group of oncologists who might have specialities but it's the luck of the draw to whom you're assigned.  If, as you say, pickings are lean in your area this might be the problem.  If you doctor is not specialized in OVC, he might well be making assumptions about recovery that are not aligned to the complexities of OVC, and he may not have the expertise a medical oncologist would have as it relates to chemical interventions in treatments.   

Your concerns about the advise you're getting are valid. What he's telling you is contrary to any of the published material on our disease. As for his tone in delivery of advice, it may be well intended but our ear is not hearing it that way. That one can possibly just be attributed to a mismatch in personalities and styles.  Whatever the case, I really recommend you push for a second opinion. Picking might be thin in the oncology community where you are but that doesn't negate your right to the best care and advice possible.

I know there is a real discomfort for most in asking though. What about your family physician or gynecologist who referred you in for cancer support?  Can they not help you navigate your dilemma.  That's certainly where I would start.

Please keep us posted. I do hope this all either resolves naturally with time or with another avenue of advice.
  

PatD

LynneA said:

I have been on olaparib for a month.   I feel like I have no stamina an the nausea is always there even with anti nausea meds.  I keep hoping it will improve but am feeling discouraged.   Any tips?

Make an appointment with your oncologist to find out if the dosage can be changed.

jmbarrhaven

Have they checked your hemoglobin?  I had a lot of fatigue with no one offering an explanation.  When I finally wailed that something must be showing up in my blood tests, the doctor finally took a closer look and said "Oh, your severely anemic".  With just of week on an iron supplement I was a new women.  Such an easy fix.  I continue to take the supplement.

PatD

I've been told olaparib should be started less than 8 weeks after last chemo, another doctor said less than 12 weeks. Who's right?  Reminds me of the various answers to other questions (How long in hospital for surgery? How long to get back to normal after surgery?)

LynneA

I was started by 12 weeks.   The nausea finally improved at 4 months but I also found it was better without the anti nausea meds.  Still feeling tired and weak and having muscle cramps but generally ok.   Blood work was good for 4 months so I don't go back for 3 months.   Taking it one day at a time. 

MadBel

@Camper62 I've been on it since December 2020. I guess it's working but I sure lack energy. I always feel better if I have to go off it for some reason. 

Marley2scoops

I have been on olaparib for a year now and was nauseous the first few months but after that felt pretty good.  My blood work has been good too. I’m now having blood work every month but only talk to a Dr. every three months.  I’m finding I’m anxious not hearing from the medical team about if my blood work is ok.  I liked that monthly check in, I guess.  Does any one else feel like this ?  They said they’d call if there was a problem but I worry that I might get over looked.  Am I worrying about nothing?

LynneA

@Marley2scoops I understand as I go through the same thing.   My cancer centre is connected to a program that allows me to see my lab results online.   I  would ask if there is something like that available and if not call and ask for the results.   We don't need more anxiety in our lives.   I will be finishing Olabrib the end of October and will have to decide how often to have a check up.  I  haven't figured that one out yet. Just hoping my energy levels improve.   What have others done?

jmbarrhaven

Hi @Marley2scoops, it looks like you were stressing about this in the middle of the night.  We've all been there.  The fact that you are on olaparib means you are BRCA positive,  which means there is a good probability you will benefit from it.  Monitoring does lessen after the first year.  Yes, it was a bit disconcerting to me, but I also got used to it because it meant everything wasn't always focus on my cancer all the time.  Blood labs automatically flag any problematic results to doctors.   If you experience new symptoms,  then for sure call your health care team for a discussion.   

As a BRCA negative person I have great envy for BRCA positive patients.   The parp inhibitors work really well for you. They did not work at all for me.  I have heard of quite a few patients who have successfully remained in remission on olaparib for many, many years.  As a patient partner with Ovarian Cancer Canada,  I am currently on a research team out of Sunnybrook Hospital exploring pairing olaparib with another drug that they hope will completely kill ovarian cancer cells in a one  two punch, thereby offering a cure.  This may be a possibility for you,  you lucky duck.  

melissa

@jmbarrhaven you caught my attention when you mentioned a research team hoping to pair a drug that could possibly offer a cure. Are you at liberty to name the drug? I ask cause I myself was diagnosed with clear cell ovarian cancer stage 3b in June, I am waiting for my BRCA results but the percentage of clear cell with BRCA mutation is quite low

jmbarrhaven

@melissa Its a Phase 1 Trial still recruiting patients.  The second drug is Navitoclax.  Olaparib is designed to put cancer cells to sleep.  Navitoclax kills the sleepy cells.  The purpose of the Phase 1 trial is the get the right dose.

Strongwoman

@Marley2scoops  Looks like you were up anxious about it and as @jmbarrhaven stated, I believe we have all been there at some point in time.  Sounds like good information that you have been given by the other Teal Sisters.  Asking either to be able to see your blood work results or calling in and asking about the ones that concern you if perfectly ok and normal to ask for.  I don't have your type of OC but call in for a couple of blood markers if they aren't in when I am at the appt. If you feel that the 3 month is difficult for you, have you discussed this with your team?  Perhaps the missing piece is seeing those results and monitoring as to whether they are trending up, stable or downward during that 3 mos period so that you can discuss it with your Oncologist.  I won't say "don't worry" as we all are concerned and focused on certain markers with our diagnosis that is individual to each and every one of us. Hoping that the info the gals reached out and posted and perhaps this post to will help you along your journey.  
 If you are not sleeping nightly on a regular basis, this is something to discuss with your team.
Take care

Marley2scoops

Thanks for all the suggestions.  I see my Dr. In two weeks so will talk to her about getting my blood work results monthly .