Finished Chemo

Elgin55

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.

GloHo

@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.

Strongwoman

@Elgin55
  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. 

6771

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. 

6771

You also need to remember also that they talk about ALL the POSSIBLE side effects

Fearless

@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.
  

Strongwoman

@Elgin55
  Checking in to see how you are doing. 

powderpuff

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?

dorisirene

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.

Strongwoman

@powderpuff

 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!

powderpuff

@Strongwoman

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. 

6771

I started on Zejula with 200 mls.  Could not tolerate after about 8 days.  Not so much the physical side effects but more the emotional ones,  I was very teary and depressed. No myself.  I eventually was good with one pill and started back to work. However, I think it builds up in your body.  The last pill I took was on good Friday.  I have done a lot of research on my own.  Found out the amino acid methionine is essential for cancer growth and cancer thrives on it.  I started a methionine reduced diet.  In essence, I am a vegan.  Methionine is an amino acid that only comes into the body through the foods we eat.  There is METH in all foods, but it is extremely high in animal food products. Meat, egg, cheese, yogurt, milk.  Meats are the highest and chicken I believe is the highest.  Have been eating vegan and doing hot yoga for four months. My CA125 number was consistent but not within the normal range. It was a little high. Nonetheless, I felt GREAT.  My last scan was May 12 and I reviewed it with my oncologist. She said some things had actually improved and there was NED.  She said I think you are in remission.  I sincerely think a big part of my health improvement is the hot yoga.  Moving under infrared heat...moving the energy within the poses...shifts energy in the body. Concentrating on your movements with your breath is relaxing and brings a mind/body connection.  The heat sweats out toxins in the body.  Mind you, you have to replenish with lots of water.  Remember...an important factor for me in the diet is to have reduced levels of methionine which cancer cells need to grow.  I am thinking that perhaps they actually die with limited levels.  I found a program/website that actually can tell you have much methionine (and nutrients) are in many foods.  If you are interested I can send you a link.
Dr. Valter Logo is also someone to be checked out. He is the author of the book The Longevity Diet.  Studies aging and longevity.  Diseases can be cured/made less detrimental by the food we eat.  For cancer, he proposes a vegan diet with fish maybe 2 to 3 times a week.  His book contains meal plans.  Another big part of his work and belief is that fasting is beneficial to the body.  He has a five-day FAST MIMICKING DIET.  You are still eating, but you body believes it is in a state of fasting.  It just occurred to me...maybe this has something to do with lowering methionine.  Not sure.  At any rate, check it out.  You can find him on the Internet as well.

Strongwoman

@6771
  Thank you for your informative post. How well (or not) did your discussion with your team go about all if this and your decisions? 
  A prognosis of NED is always welcomed and one may feel elation, trepidation and not knowing how to move forward. Always in the back if our heads are the subtle signs that we ponder and can at times over analyze. Other times our 'gut' is all telling and we have to await results to find out otherwise.
  Many different ways and things to look at, consider and discuss. In the end, it must 'sit well' with us as we decide which path to take.
  I wish you well going forward, your choices and that you will have continual NED results.

Strongwoman

@6771  I thought I would check in with you to see how you are doing.  Your last post, everything was very positive in both state of mind, treatment and outcomes.  I am curious to see how you are doing currently, what has been working/not working and if what you were doing has been sustainable?  Let us know when you can as it would be great to catch up and see where you are at.  Hoping you are willing to share with us all.....take care