goodkarma

Thank you so much for your recent update. The best present any cancer survivor can receive. Wishing you continued better days and continued remission next year and in the years ahead.

good karma, sorry to read about your bout of side effects with Zejula. I hope you are feeling much better by the time of your follow up appointment now that you are off the medication. Unfortunately there are no one size fits all medications for this disease. Please let me know what the game plan is with your onchologist going forward. Always wishing you better days ahead, and sending oodles of support.

Hi goodkarma,. Love that name. I believe in Karma. What you put out comes back to you! I got a notification that you were following me. A quick glance over your wall. You mentioned Zejula and I can help with that. Quick history, I was diagnosed in 2015, usual debulking surgury, then Taxol and Carboplatin. 2 years cancer free then surprise in January 2018, 2 enlarged lymph nodes on my annual CT, no symptoms, normal CA-125. Confirmed by PET scan. (No biopsy possible, one near my heart, the other under my diaphragm near my left lung) Chemo again Gemzar and Carboplatin. Then I got to choose my PARP inhibitor, I am BRCA negative. Outcomes are very similar with each of the three he suggested. I am a retired RN, a nurse for about 40 years. I selected Zejula. I went trolling on OVC sites too! Most women on PARP inhibitors were on Zejula. You are only required to take it once a day. The others were twice a day. Worst side effects on labs was reducing platelets. The other 2 affected liver and kidney function. So I chose Zejula. I began near the end of September. The first 2 weeks were fine. The pharmacist called me every week after I saw my oncologist which I was also seeing weekly for the first month. Everyone was so excited. Then week 3, severe acid reflux hit me. I was regurgitating on an empty stomach if I bent over. I was on Zantac and Tums. The side effects scared me because they were very similar to the symptoms I had when I was diagnosed with OVC, feeling full, only able to eat small amounts. So we reduced it to 200mg from 300mg. No more regurgitating on an empty stomach but a horrible hacking cough which I had all day and worsened at night. I would burp at the end and during the coughing. It was severe GERD. I was pretty discouraged and scared. So we repeated my CT, chest, abdomen, pelvis 4 months after my post chemo CT in December. They were both clear. So I took a 2 week Zejula vacation. It was over the Christmas/New Year weeks. My cough took a week to go away and it was wonderful. I started another reduced dose a week ago, 100mg from 200mg. Guess what I feel great, normal! I feel like I can start my life again. I considered just giving up on Zejula with how miserable I was. Then I realized I would always wonder "what if" if my cancer returns. Even if that meant not returning to work part time in February-March. Looks like I will be able to work again and soon. I am giving it a good month before I apply anywhere just to be sure. Zejula is considered chemotherapy, I had to sign another consent when I started it. It is very expensive. My insurance is covering it for now. If your insurance does not, there are financial resources available. Since the PARP Inhibitors are still relatively new, they are very competitive with each other so at this point I have no copay. My oncologist told me there is no guarantee that will continue. Like life itself we can only take a day at a time and do our best. I had to quit working during chemo which began in March. I have a history of not tolerating it well. Got 4 blood transfusions in 2015 and 5 last year not to mention other lousy side effects. I usually worked 12 hour shifts in a medical ICU, lots of contagious diseases so work was not even a consideration since chemo depressed my immune system. So the pharmacist shared with me it is best to wait a while to build your strength up after chemo to start Zejula. She was glad when I said I was starting the end of September, last chemo was the end of July. I am overweight. She also shared women who weigh less than 150 lbs tend to have more difficulty with side effects. Everyone tolerates chemo different and everyone tolerates PARP Inhibitors differently. Yes, I would do it again. Then if you can not tolerate Zejula, there are other PARP Inhibitors you can try. This is about lengthening remission time. I think of my Zejula as little nurses keeping my cells healthy, preventing my cancer from returning. I started out with that nurse from One Flew Over the Cuckoo's Nest, Nurse Rachett, she was not pleasant, she was too much, so all the lousy side effects. Now I have a Zejula nurse like Mother Theresa. She is loving and helpful. That is probably too much information! But some sources say visualization of healthy cells is therapeutic. It is your decision but I say give it a try. You can always stop whenever you want. They monitor your labs and how you are feeling very closely. I will have monthly checks for a year, that is the standard. That is doubled because the pharmacist is checking too and is very helpful. You take it at home. I take it at night, a few hours before bed. I take it with a snack. I take Zantac 30-60 minutes before. I chew a few Tums before I go to bed. I have a foam crate under my mattress that elevates the head of my bed 6.5 inches. I do have some constipation which is improving since I increased my Colace, (stool softener) and fiber. I tell my doctor when I skipped doses when I see him. It is your body so you run the show. No skipped doses since I restarted January 1st. It is normal to feel nervous. I was petrified before chemo in 2015 and scared this year too before chemo and before and during Zejula. I feel fine now. If you are like me you want to do all you can up to a point. I wish you well. If I can help in any other way let me know. You are a strong woman. Congratulations on your clear CT and surviving chemo.

Hi goodkarma, congratulations on having a clean CT scan in December. The current thinking among many in the medical community is to start women on some kind of maintenance therapy right after they finish frontline chemo . The amount of time they are on the maintenance differs per individual’s tolerance to the medication and results achieved. Ask your question about Zejula on Sisterhood of Ovarian Cancer Survivors on Facebook, there are many women there on PARP inhibitors.

Thanks for keeping us updated.,itching From any source can drive a person nuts, I am glad you got some relief . Hope your discomfort from the surgery stays minimal. Wishing you a speedy recovery and better days ahead.

What do you mean by “other care”? Is this a result of your needle biopsy?

Dropping by to see how things are going. Hope you are enjoying the Summer and were not in the flooded areas. Take care.

goodkarma, hi lady. Dropped by to find out how your last scan went. Hope your able to get out and enjoy the Spring weather.

Thanks for touching base. Was suppose to see doctor this Friday, but appointment changed to April 8th, so the anxiety I had building has lessened fir the moment. Wishing you good results on your scan, Stay in touch Texas Lady.

I am inspired by your story. My hysterectomy is on Thursday but I'm much more nervous about the chemo process after. They told me that since I'm young I'll respond well but it is still scary.

Hi, Karen~yes, that surgery is rough! I had surgery July 29, 2014 and then chemo began Oct 7th until Jan 20 of 2015..would love to contact you by email but didn't see it in the message? There's got to be a way to communicate privately..let me know! So far, I'm doing well but had a lot of things happen during the chemo journey including a reaction to the taxol the 4th weekly dose so they switched me to taxotere every 21 days with the carboplatin..still tired and tire easily..do you? I have a husband, a son who's 16 and a daughter almost 20..this journey affected them all in different ways..I had a great support system through my church and a wonderful friend that brought me (and my son since I homeschool) to chemo and am grateful for that!
Let me know how to connect privately!
Lynne

Goodkarma, thank you for following me! I'll follow you, too. Best, Carool

Sorry goodkarma,didn't catch the name misspelling, my bad.

Hi goodkarmer, love your screen name and the positivity it brings. Have read your experiences and would like to ask why were they performing surgery on you initially .Surely if Ovarisn Cancer was suspected a gyn/onc should have already been your doctor. I too had difficulty accepting hair loss at first but when my son-in-law shaved it off felt relief and I have always liked hats.My chemo was in the winter months also , so head covering a must. I too have a chest port but am small breasted and have had no problems with it but have heard that women with larger breasts can at times have minor discomfort. Glad to see you have a very supportive husband, mine has been my rock. Please ask any questions you may have ,anytime. All of us on the site are here to help each other. Cancer treatments are difficult but they are DOABLE. Take care.

Hello and welcome to WhatNext.com. I have a similar diagnosis and am happy to share my experiences and answer any questions you may have if it would be helpful to you.

god speed and good will on your journey, stay positive and these treatments will end so you can be yourself again.

Hello and welcome, we are happy to have you with us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/ovarian-and-fallopian-tube-cancer

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

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GregP 3X Survivor
WhatNext Community Mgr.

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter