Managing Lynparza side effects

LynneA

Hi I just started Lynparza yesterday and the nausea and general feeling of being unwell is as bad or worse than chemo.   Any suggestions on how to manage the side effects?

Fearless

Hi @LynneA
I'm sorry you're having such a challenging reaction to the Lynparza.  I was on it for two years in a clinical trial and fortunately nausea was very milld for me, But I did have constant aches and pains and new fatigue, almost flu like symptoms at first.  My oncologist provided some meds for the nausea, and recommended Tylenol for the rest ...short term.... while we waited to see if the side effects would remain, increase or diminish.  And I kept a daily journal of how I was feeling, which was part of the requirement for my trial but useful regardless.  

As we approached the end of two months the use of meds for nausea had all but disappeared and that seemed to have resolved itself.  But the joint and muscle pain was worse.  I was on a 300mg dose so she dropped that to 250mg and lo and behold all side effects pretty well disappeared.  

The key to success with the PARPs is ensuring you keep your cancer care team informed, especially at the beginning. There are all manner of things they have available to make the experience more palatable.  And don't worry if they recommend a reduction in dose as one of the strategies.  For some reason, it doesn't seem to have any major effect on the efficacy of the drug.  

Lynparza (Olaparib) is a very effective maintenance drug so I do hope you will be able to tolerate the use of it over time.  I know the Olanzapine for nausea and the Tylenol worked for me temporarily but don't take anything without consultation with your cancer care team.  We all respond differently in our treatments so what might work for one, may be detrimental to another.  Rely on their guidance throughout the course of treatment.  Right now it may just be your body reacting to something new having been introduced and needs time to adjust.  I know it's the weekend, but for immediate relief if the nausea is unbearable, your cancer centre should have an on-call oncologist to talk to.  Otherwise, if you can try to grin and bear it over the weekend,  get to your own oncologist if you're still challenged on Monday.

  

LynneA

Thanks that is really helpful.   I think I am also battling the fear of feeling sick for the next 2 years.   I just want to feel well again.   

Fearless

@LynneA
Anxiety is our worst enemy through recovery.  You will feel better.  It just takes time.  Your body is battle weary right now so allow it to heal at it's own pace.  You'll get there....just be patient, and reach out to us anytime you have questions or just need a shoulder to lean on that 'gets it'.  
  

Shortie

I too have had intense aches and pains on Lynparza.   Been on it for a year now and it has not Improved….Tylenol, Advil takes a bit of the edge off but I’m constantly feeling like I have the flu and I am 100 years old when I’m 55…. 

I have stage 4 serous carcinoma ovarian cancer - had hysterectomy, appendectomy, omnectomy and part of my bowel removed…it’s in bowel left lung and bladder…. I have one year left on this med……does anyone know lifespan after ending this med….anxiety is very real, loneliness is huge it’s almost like once I was diagnosed and going through two years of hell - and lived through it…..I sometimes feel I should have died and family and friends inadvertently make me feel like that—— I know they don’t but to me it feels like that.  I am talking to a therapist once a month to help.

I bought a cubii jr to try and strengthen my legs but still can’t walk very far it’s crazy…my life is still upside down

Strongwoman

@Shortie
  I hear you and feel for you. Your feelings are valid and real. I have sat where you are sitting with your feelings. It is very difficult to watch the world around you carry on, for family/friends to go on like nothing happened to you and act like it won't. I feel that many carry on in that manner because they don't like the projected future/outcome and that it is a coping mechanism for them.  I go back to what my girlfriend learned in a support group for her hubby which are the 3 C's. "I didn’t CAUSE it. I can’t CURE it. I can’t CONTROL it."  I do my best to remember this when things don't seem to be okay. All I can do is control my reactions and actions. It is also best to remember YOU are the center and everyone else is supposed to help YOU!  I also feel that some go through Compassion/Caregiver Fatigue which is real.  It is important to stress to your loved ones the need for "other" supports for themselves beyond yourself as we as the ill are at our max with what we can handle. Does any of that make sense or help you?
  I do my best to focus on my Legacy work and filling my time with things that bring myself joy and happiness and not rely solely on my family to provide that for me.  I am around the same age as yourself as well was originally diagnosed with Stage 3C primary peritoneal cancer (treated same as ovarian), declared NED and then had reoccurrence last year and deemed "palliative". I was given (because I asked) a timeline and was informed 1 1/2 yrs. We are now past the year mark and my cancer is continuing to progress.  With LGSC there are not as many options for treatment and unless something new comes out quickly, am on the last of what is available to me for treatment.  
  I can and have fallen into the "they would be better off" scenario same as you and usually when I feel really crappy and experiencing an 'acute' episode.  It's hard, we don't feel well and you see all of their faces and reactions. What we don't see is what is really going on inside their head's which sometimes does not match their actions/expressions at all.  
  You have come to the right spot. If you feel any of this helpful, great. You can continue on this message thread or message me privately if you would like.  Just know you are NOT alone in how you are feeling.
Take care of YOU!  

Strongwoman

@Shortie Hello!  It has been far too long since we have heard from you!  I would really like to know how you are doing and where you are in this journey of yours.  How are you feeling these days? Emotionally? Physically?  What course of treatment are you on?  How are you feeling in general?  Time has escaped and I am doing my best to make sure I haven't missed anyone in the last little bit.  So, please, let us know how you are doing as I do truly care and would love if you would like to share your journey with us all.
Take care

Strongwoman

@Shortie Thought I would check in as I didn't see a reply from my last post to you.  I am wondering how you are doing and if you wanted to give an update.  When I don't see replies from fellow Teal Sisters, it concerns me greatly.  I do my best to not let myself "go down the rabbit hole" with it and try to imagine that you are busy and forget to post instead.  If you can update us soon, I, for one would love to hear how you are doing.
Take care 

Shortie

strongwomen Hi thank you for checking on me!  I’m still feeling the effects of the drug. aches pains tired all the time.  It’s crazy!  But so far physically things are still keeping cancer level low.  I’m concerned though as it will be two years in July on meds and I know most can only take it for two years.

I just had my breast MRI and that was an epic failure-  having to lay face down with my arms back by my sides with an IV in your arm and squeezed into a tunnel that is squeezing my shoulders so bad it feels like my collarbones are breaking man i lasted 9 minutes and had to stop. i was either passing out or vomiting from the pressure from the bar’s pushing on my chest bone, upper abdomen, my arms.  i was in so much pain 

I’m also dealing with the news my sister has finally been told she is brca1 positive as well.
she had a breast removed in 2013, a hysterectomy at the same time I did for ovarian cancer but the cancer clinic did not test her.  She was not checked regularly no blood work, internal checks nothing after her operation- 2 years later she has buy a test and send it away to find out she is brca1.  They tell her to remove the other breast so she gets sent to cancer surgery in her province gets it removed but they find ovarian cancer in a lymph node.  tell her it’s low grade serous carcinoma and there is nothing that can treat that not even chemo.  but could not find any tumors in her ct scan so nothing that needs immediate attention.  fast forward two weeks and they are calling her saying ct scan shows lymph nodes around stomach are swollen and kidneys are pressurized and there is a lesion in her stomach- they send her for endoscopy- there is a 3 cm tumor that is cancer. we are waiting to hear what is next.

I am devastated- we thought we saved her with the hysterectomy- they didn’t have to do chemo then everything was supposed to be contained- now they are taking palliative care.

im freaking out!

Strongwoman

Oh @shortie you do have your plate full, don't you?  It sounds like you are taking on some of what your sister is going through and no doubt, I don't know how one would not.  What I can tell you is that I have low grade serous and there are treatments available.  As for Palliative Care, I have been under that for over a year now.  I think of it as my person who is there for me, will listen and follow through with what my wishes are and will make sure I am as comfortable as possible.  Palliative care can still be sought even if you are still working with other health professionals.  In fact, they are an integral part of the team.  Mine is the one that got me the SRK kit to have at home to eliminate multiple trips to the EMERG and setting up the Bayshore Nursing for same reason.  When I run into trouble, we call them and try things at home before rushing to the hospital. It has saved me numerous trips to EMERG and probably being admitted as well.  It is something to mention to your sister when she speaks with her Palliative Doctor.  It is all happening so quickly that it sounds like you are all not having the time to be able to digest and process the info coming in.  That the anticipatory grief part of it, has not been allowed to "be".  Often when we hear the word palliative we link it with death but that is not always the case.  I feel this will be a good addition to her team and her care.  It must be so hard for you as you sit in your own journey and are watching this all unfold as well.  Tell me, how can we support you through this?  What is it you need?  Whatever it is, feel comfortable in sharing knowing it is a safe space to do so and that we will do our best to support you and your sister through this (should she choose to join our group).  In the meantime, let the grief do what it needs to do and let tears be shed or sorrow creep in, it is okay.  It doesn't mean it will sit with you long haul, you need time to heal and it will in its own due course.  Reach out anytime you need to, we will be here by your side anytime you need. 
Take care of you. 

Shortie

Thank you!  I have talked with my sister and right now she doesn’t want to join right now.  she is being bombarded right now with every one coming at her with ideas and treatments she said she needs to digest things for now.

I have no idea what I need - I’m in the middle of just wanting to be alone so i don’t have to pretend everything is ok when it’s not!  But I don’t want to push people away- but at the same time I don’t have a huge amount of people trying to be with me either-so there’s that

Im so very concerned and devastated by my sister. she lives 5 hours away and I don’t drive. I want to be with her but on the other hand I don’t as not sure i’m strong enough 

Strongwoman

Well @Shortie that is all you can do. Provide the info and let your sister sit with it, herself, to decide when she is ready.  It is hard to watch when you know something can provide some positive to all the "advice giving laden info" from others.  I recall that time and it is heavy.  It is why I was thankful that I had this group so that I could turn a deaf ear to those that were not going through it and find a sense of community in this forum that I could turn to.  All in due time for her, as it is her journey.  We will be here when and if she is ready. 
Now back to you. You sound like you are at a cross road not knowing where to go or which road to take. I am saddened that you feel or do have "not a huge amount of people trying to be with me either".  Do you want to elaborate on that?  Are they all rushing to your sister or is this was how it has been since the onset of your journey? 
You have every right to want to be alone when you need to be. Part of this is recognizing those times in our lives and allowing ourselves "to be".  By no means should we EVER have to feel like we should be pretending for others that everything is okay.  I have found that those that showed disinterest are okay with you saying "I'm ok" as an answer to how you are doing. My experience has shown, they don't either know what to say or do or are doing it for themselves.  I have slowly removed them from my life.  I don't need it as I go through my own journey.  You will need to determine how much you let them in yours and when, if you want them to be part of your life.  It is your journey and your process not anyone else's.
There are many great resources on Wellspring.ca that you can check out for yourself if you want.  There is a wealth of information on this forum as well when you type certain key words into the search bar. 
We are here for you for whatever you need and however we can support you.  You let us know how we can do that for you.
I cannot imagine how difficult it must be to be going through your own journey and wanting to support and be there for your sister as well with barriers in the way.  Including distance, your own diagnosis, your own journey and your sister's wishes with her own journey.  It would be tough and heart wrenching at times, I am sure.  You would not only be going through anticipatory grief of your own diagnosis but for what everything means for your sister too.  So tough to be in and navigate through. The advice I can give you is get yourself as good as you can be, for you, mainly but you can't be there for your sister if you aren't.  Like what they tell you in the plane about masks and little ones....you know ...put yours on and then assist others. 
So, my fellow Teal Sister, let us know how we can help you at your time of need and help you get through some of this in your own way and your own time.  We are all here, when you are ready to be open and vulnerable to share in a safe space as you navigate your journey going forward. 
Take care of you, rest and think about the words in the post. They come from a place of wanting to help wherever possible to make the other's journeys more bearable and for them to not feel alone during any of it.   

Alwayslearning

Hello community,

I'm curious about any recent users of Lynparza/Olaparib. How have you managed your side effects (if any)? I'm almost a month into usage. I experienced daily nausea for the first 20 days, and some fatigue. For the nausea I was able to manage it using ginger Gravol. I had Olanzapine (prescribed anti-nausea drug) however wanted to manage using something more natural. The Gravol seemed to do the trick. The nausea is tapering off. I also had some mouth ulcers that were managed with a prescription mouth wash.

My red/white blood cells took a hit per my last blood work. They weren't in dangerous levels so we continued the meds. I have repeat blood work again this Friday (fingers crossed they have stayed stable/not declined further).

Have others experienced similar side effects and impact on red/white blood cells? Do you have any coping mechanisms to share and/or suggestions for managing side effects. What did you do when your red/white cells took a hit? Thanks in advance.

Always learning.