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OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis ([email protected]).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis ([email protected]).
Managing Lynparza side effects
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?
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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.
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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.0
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@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'.
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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 down0 -
@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!1