Hi, I am finished my chemo treatments as of November 1st. I have stage 3 ovarian cancer. Tumour was removed followed by chemo. I am so anxious now because they want me to start a drug to keep me in remission. The drug is Zejula. This drug sounds worse than chemo - the side effects. I just keep thinking I am going to die and I can't seem to shake it. I did great on chemo and my attitude was awesome. Any comments would help.
@Elgin55, you made it through the tumor removal and chemo...congratulations!
Check out the discussions regarding Zejula on this site through the search engine.
I was on Zejula for a short time...the only side effect I had was insomnia which, of course, led to fatigue, but it was manageable. Everyone is different and your healthcare team will be with you every step of the way.
Bombard your healthcare team with all of the questions you have and ask about proactive steps you can take prior to starting Zejula. Don't forget to touch on diet, exercise, and OTC meds, if needed. Also be sure to discuss the schedule for follow-ups...blood work, CA125, scans, etc. This would also be a good time to discuss the what-ifs...what happens if my blood count is low or my platelets drop, etc.
Prepare for potential side effects. Have those anti-nausea meds handy in case you need them. Purchase a blood pressure monitor. My blood pressure did go up, but not to alarming levels. I was very thankful we had one at home and was able to use it to monitor my blood pressure whenever I wanted - just to put my mind at ease.
Most hospitals have patient portals that allow you to view your test results (bloodwork, meds, radiology, etc.) all in one place. I find it handy to have the info all in one place, it frees me from having to keep copious notes with dates and numbers and medical terms!
I, too, have had my ups and downs regarding my diagnosis and my future. All part of the process for this diagnosis. I still have bouts of fear and sadness, but then I realize that I am still here and there are still options available to me. Options = HOPE. I am proactive, prepare for the next steps through research, and I am very determined to get through this!
I just joined this forum recently and have found my anxiety level lessened after having searched everything that had been weighing on my mind. We are not alone. The stories and experiences others have shared, have given me even more hope. I have also found information that will lead to questions for my healthcare team as we move forward.
Positive thinking and your awesome attitude will get you through.3
It is a tough spot to be sitting in as fear can overtake a big part of our lives. Some of that fear is identifying where it is coming from and seeing if you can find ways to deal with what that identifier is. The other part is going through the process of understanding that you are coming to the time that you find yourself "living with cancer" and all the thoughts etc that go with it. Sometimes, I feel choices in treatment are knowing what it looks like if you don't do it (worst case scenario) and what it will look like if you do and best outcomes. You will find you will be somewhere in the middle should you choose to do treatment. There is a high probability there will be side effects as that comes with a lot of medications out there and how a body responds. Do you have to like those side effects? Nope! I currently don't like the ones I am experiencing but I also know that beyond this drug I have nothing left should the Letrozole on it's own stop working. But those were my choices based on my own situation. @GloHo is correct. Ask, research, write down your questions and make sure you get your answers AND understand them. You do NOT have to make a decision that day. If you need time to think about it and process all the information, then do so. Even if they feel it is urgent, they will tell you a timeline and give you time to process. This disease SUCKS! I won't sugar coat it because it is the truth.
I found a quote in a book I read entitled "When Bad Things Happen to Good People" : "We may not understand why we suffer or be able to control the forces that cause our suffering, but we can have a lot to say about what the suffering does to us, and what sort of people we become because of it. Pain makes some people bitter and envious. It makes others sensitive and compassionate. It is the result, not the cause, of pain that makes some experiences of pain meaningful and others empty and destructive."
Take time for you and you will find that you will come to an end result that is right for you.
Hi there. I am on Zejula and have experienced no nausea. I find the side effects to be tolerable... The only complaint I have is having trouble sleeping. However, although I don't sleep well, I am not "tired" the next day. I have a very active mind and have returned to work. My CA125 number is between 35-40. Would like it to be zero. Everyone is different.
I had 9 chemo sessions; the last was August 15. I did not have any side effects from chemo either. The only two side effects were hair loss and fatigue. I guess I feel lucky that the treatments did not affect me much. That is the one positive thing I can say. Perhaps that is why Zejula does not bother me much either.1
You also need to remember also that they talk about ALL the POSSIBLE side effects
@6771 thanks for sharing your experience. You're absolutely correct. The list of POSSIBLE side effects is long and not everyone experiences all or some of the effects listed. Our experience is unique to us and like you, I tolerate chemo and other drugs I've taken very easily while many of my sisters have less than pleasant experience to share. I'm always a believer in trying whatever is recommended, allow my team to adjust dosage or do whatever to make the treatment more tolerable if needed and at the end of the day, stop if reactions are severe and can't be modified. So glad to hear Zejula is tolerable for you such that you could even return to work. That's great news.
Checking in to see how you are doing.0
Just got the no evidence of disease result so I’m thrilled. Had 3c ovarian cancer and went through chemo and surgery. Now the maintenance drug zejula has been recommended and I’m not sure if I should try it based on the side effects. I’m enjoying feeling healthy and have a great quality of life. How do others get through the fear of a recurrence?0
I started on 200mg but because of low bloodwork results am now on 100mg. Minimal side effects - initially some shortness of breath when climbing stairs, but that seems to have subsided. Feeling great.0
First, congrats! I apologize for missing your post. I do not know how it got by my radar.How do you feel with being informed you are now NED.Now to answer your question. I have not been on Zejula myself but I do believe you could insert any drug name in there and the same question would remain which is 'what about the side effects'. Every single person and their body respond differently to medications. Some will be on the severe end of the spectrum, some at minimal end and quite a few in the middle. Best question to ask is 'can we try it and see how I do on it"? 'What are the major side effects I am looking for? I would like to believe that you are struggling so much with this because you are now feeling good and enjoying a better quality of life. Would that be fair to say?
As for your question on "fear of recurrence", I won't hesitate to say that you never do. It is something that will always be a the back of your mind as you go forward with NED. You will question every minor thing as we were conditioned to do while going through treatment. I found that using a daily journal to write down what I did that day and how I was feeling helped. It is good to refer back to as we do forget some things and to look for patterns. It is wonderful to be in the NED headspace as you do look at life in a different light. Like the world is yours and a Gift every day! I am excited for you.
Enjoy and Savour every moment and day. It's ok for the 'other' to sit at the back of your mind. Let it.
Take care of you and enjoy the beautiful sunshine we are having here in Ontario!1
I do feel amazing now that I’m NED. I made the decision to not go on Zejula and feel good about that. I don’t have any of the markers which makes me feel better about my decision.0