Lynparza vs chemo
Greetings! I am new to this panel as a contributor, but have been reading and finding much needed information, confirmation and comfort from many of the discussions over the past year. Now I am at another crossroads, and I would love to hear from others if they have faced or have knowledge to share on this topic.
I have just completed my second round (of 6 rounds of chemo) for reoccuring ovarian cancer. I was diagnosed in March of 2016 & underwent a pretty big surgery a few weeks later, removing my spleen, ovaries, fallopian tube (Uterus was removed in 2000), intestine & debulking the inside walls. Quick weight loss surgery! My oncologist is recommending I take a newly FDA approved daily drug called LYNPARZA (an Oloparib Inhibitor) made by AstraZenica. Most of the online information is from them simply because it has been newly released. However they did do extensive clinical trials so I am hoping someone out there will share what they have experienced. The 2 major POTENTIAL side effects are pretty daunting even tho only 1% developed them, but they do give one great pause for thought.
When I was growing up a diagnosis of Ovarian Cancer was a death sentence. Today it is not so. Medicine and the suffering of many women whose shoulders I (we) stand upon has improved greatly. Many times throughtout this journey of awaremess and growth I have caught myself thinking of myself as a "guinea pig". Today I have rephrased my thoughts because I realize we women & the people working to help us are truly "Pioneers & Warriors". This includes all of our caregivers. I am so grateful for life & all the people I have been blessed to share it with. I look forward to any reponses, thank you!
Comments
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Varjra, love you smiliing
Varjra, love you smiliing face! I am a visitor from the Uterine board, hope you don't mind, but we gyn cancer gals check in on each other and it can get quiet sometimes on these boards. It is what it is.
You are right about standing on the shoulders of so many brave and wonderful warriors! There are so many improvements it is humbling to think of those who have gone before us. You are also right about the caregivers....none of us fight alone.
I can't comment on the lynparza (I think it is also known as a PARP inhibitor???) but I wanted to welcome you. I am sorry cancer was the reason you had to find us and I hope others stop in.
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lynparza & Pandagypsy
Greetings! I want to thank pandagypsy for being a warrior & pioneer with this new Lynparza treatment. My oncologist is recommending the same treatment for me and I am leaning towards not traveling down this path - yet. Much depends on the results of my upcoming CT scan & CA125. I do want to comment that I too was in turmoil and anxiety about my CA125 rising above 35. Then with much digging I too found that what is relevant to one person numerically is not the same for the next person - even with the same type of cancer! The only "truth" I can find in this number is the "normal" range and what MY numbers are at different times - COMPARED TO MY OWN NUMBERS. I say this because I too found that some women had numbers in the 5,000's!!! And higher! And were/are still working to be alive and have quality of life. They have inspired me to not be fearful of this number, but to use it to reexamine what I am doing, eating, thinking and what treatments I am receiving.
I am grateful to be able to witness and experience the power of LIFE. I am consistently dazzled at how hard my body works to restore a state of wellness despite the strong medicines we are putting in them to kill the cancer cells. However there is a time and place for everything. Having just finished another 6 rounds of chemo, I feel that my body is exhausted. The medicines are working, but in some regards I feel like I'm being "pickled" from the inside out! I am so grateful for your ongoing posts about Lynparza. Your experience is helping to inform and guide me in my next course of action. I am looking not only at the internal treatment but at the way my body is moving - exercise/activity. What I am eating - putting into it to cleanse and restore the non-cancerous cells and tissues that too are affected by the chemo. And I am looking into alternative treatments or life behaviors that will be beneficial to restoring my internal system, from vitamins, cleansing "shakes", homeopathy, & hatha yoga. I am learning how to live with cancer. There is a part of my brain that thinks that I will have cancer for the rest of my life. I may or may not die from cancer, but I do have to learn to live with it. I am so grateful that at this juncture that the pain and discomfort I experience are all manageable.
Thank you to "notimeforcancer" for welcoming me! I really appreciate this resource and all of you wonderful brave women! Loretta your research & links are well appreciated! Despite the devastation and fear that cancer creates throughout the entire journey, challenging my belief system, stripping away the untruths, I have to admit that I am a stronger more compassionate woman than I used to be. I love life in all of its glorious beauty and power. I wish you all a very happy holiday season!
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I don't feel like a warrior,
I don't feel like a warrior, but thank you so much for that thought. Maybe a pioneer. I wasn't given a choice for lynparza OR another round of chemo; lynparza is my only hope. The choice was lynparza or HOSPICE. My thought is that there will still be HOSPICE as a choice if the lynparza doesn't keep the cancer away!
I guess I should ask if anyone has had any experiences with HOSPICE. All I can relate to is a friend who was soooooooooooooooo miserable & hurting, he was up most nights sitting in his truck. After getting enrolled in HOSPICE, he sounded like a new person on the phone; he told me that HOSPICE had got him the drugs he had needed and was feeling sooooooo much better. He passed away a few days later, but was in the best spirits I had seen him in a long time. Anyone with HOSPICE stories?
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Okay PandaGypsy~U R A pioneer~your truthfulness benefits us all!pandagypsy said:I don't feel like a warrior,
I don't feel like a warrior, but thank you so much for that thought. Maybe a pioneer. I wasn't given a choice for lynparza OR another round of chemo; lynparza is my only hope. The choice was lynparza or HOSPICE. My thought is that there will still be HOSPICE as a choice if the lynparza doesn't keep the cancer away!
I guess I should ask if anyone has had any experiences with HOSPICE. All I can relate to is a friend who was soooooooooooooooo miserable & hurting, he was up most nights sitting in his truck. After getting enrolled in HOSPICE, he sounded like a new person on the phone; he told me that HOSPICE had got him the drugs he had needed and was feeling sooooooo much better. He passed away a few days later, but was in the best spirits I had seen him in a long time. Anyone with HOSPICE stories?
Hello -PandaGypsy - This is Loretta -
Started my 4th series of Carboplatin/Paclitaxel yesterday. I'm having lots of tumors in my stomach until it is crowding out my ability to eat anything near a normal amount of food. Half a hamburger and 4 ounces is about it, just to give you an idea. I'm also having pelvic problems too. I've told the doc that I'm not going to go "downhill" on DOXIL or any of the other meds that fall under the top treatment suggested. He says he thinks I am becoming immune to that regimen, but he always lets me have the last word. So I said, "Well, you know I'm terminal, but I know I'm a Christian, and I'm going to die sometime. I've prayed about this, and if it doesn't work, then it's just my time."
Now that's not without emotions that I say that.
There's no time that I want to leave my husband and family. We mean so much to each other, but Adam and Eve are no longer here, and I'm not going to live forever. But I do believe John 3:16 and when I put my name in the "whosoever" slot, and confessed my sins to the Lord, I know that he heard me. https://www.biblegateway.com/passage/?search=John+3:16&version=KJV I did that at age 29, and I firmly believe that Heaven is my next destination, although my cancerous body will return to dust--not my spirit. 
This assurance gives me peace in the here and now. I'm not about trying any and everything just to "stay alive." 
When I read about the trouble you are also having with Lynparza, you got my attention: I know that my oncologist said, if the Carbo/Taxol didn't work that he could give me the maintenance drug, Olaparib. But you say that's terrible as well. So you may as well tell me some of the awful effects you're having. What other ladies suffer with helps me to decide just how much risk I'm willing to take. As for me, I think I'm nearing the point of the old Kenny Rogers' song - The Gambler-- "You gotta' know when to hold 'em—when to fold 'em—when to walk away—and when to run! I think I'm just about there! Here’s Kenny -
https://www.youtube.com/watch?v=Jj4nJ1YEAp4Thanks for your honest postings. There's no time to beat around the bush when we're coping with a Stage IV cancer, even though we hope we can have some interval of quality of life along the way. I’ve told all my friends, “Just pray for the to be done in my life. Don’t just pray that I will be healed, rather pray that God will continue to give me the faith to believe HIS promises and trust HIM for the outcome! I’ve known many in my own immediate family who were believers and who died of cancer. Why do I think I’ll get a “free ride?” Having Cancer was never one of my goals in life, but who of us gets to plan our life. We are however, given a free will, and I have chosen to take God at His word. All things in life will not go well for me, but they will end well. Of that I am certain! (Shipwrecked on God--Stranded on Omnipotence) What better place to be?
Love Loretta
(Peritoneal Carcinomatosis/Ovarian Cancer Stage IV) DX 11-12 – Pre-op chemo 2013 – Cytoreductive Surgery UPMC July 1, 2013 – Successful Cyberknife Surgery for 3 cancerous nodes on my Liver in 2014 – Carboplatin/Paclitaxel (Taxol) 6 treatment regimens in 2015 and also in 2016 which ended Jan. 19, 2017. Now as of yesterday, December 28, 2017, am on yet another series of the same chemo because I simply am not going to “try any and everything” and continue to suffer with reduced “quality of life.” My onc says he thinks I’ve built up an immunity to it, but he is going to abide by my choices! He always lets me have the “last word”. I firmly believe that only the patient should have the “last word”. All my family is aware of my wishes and that’s the way it should be. After all, I’m the one with the cancer.
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Hello Loretta........ILorettaMarshall said:Okay PandaGypsy~U R A pioneer~your truthfulness benefits us all!
Hello -PandaGypsy - This is Loretta -
Started my 4th series of Carboplatin/Paclitaxel yesterday. I'm having lots of tumors in my stomach until it is crowding out my ability to eat anything near a normal amount of food. Half a hamburger and 4 ounces is about it, just to give you an idea. I'm also having pelvic problems too. I've told the doc that I'm not going to go "downhill" on DOXIL or any of the other meds that fall under the top treatment suggested. He says he thinks I am becoming immune to that regimen, but he always lets me have the last word. So I said, "Well, you know I'm terminal, but I know I'm a Christian, and I'm going to die sometime. I've prayed about this, and if it doesn't work, then it's just my time."
Now that's not without emotions that I say that.
There's no time that I want to leave my husband and family. We mean so much to each other, but Adam and Eve are no longer here, and I'm not going to live forever. But I do believe John 3:16 and when I put my name in the "whosoever" slot, and confessed my sins to the Lord, I know that he heard me. https://www.biblegateway.com/passage/?search=John+3:16&version=KJV I did that at age 29, and I firmly believe that Heaven is my next destination, although my cancerous body will return to dust--not my spirit. This assurance gives me peace in the here and now. I'm not about trying any and everything just to "stay alive." When I read about the trouble you are also having with Lynparza, you got my attention: I know that my oncologist said, if the Carbo/Taxol didn't work that he could give me the maintenance drug, Olaparib. But you say that's terrible as well. So you may as well tell me some of the awful effects you're having. What other ladies suffer with helps me to decide just how much risk I'm willing to take. As for me, I think I'm nearing the point of the old Kenny Rogers' song - The Gambler-- "You gotta' know when to hold 'em—when to fold 'em—when to walk away—and when to run! I think I'm just about there! Here’s Kenny -
https://www.youtube.com/watch?v=Jj4nJ1YEAp4Thanks for your honest postings. There's no time to beat around the bush when we're coping with a Stage IV cancer, even though we hope we can have some interval of quality of life along the way. I’ve told all my friends, “Just pray for the to be done in my life. Don’t just pray that I will be healed, rather pray that God will continue to give me the faith to believe HIS promises and trust HIM for the outcome! I’ve known many in my own immediate family who were believers and who died of cancer. Why do I think I’ll get a “free ride?” Having Cancer was never one of my goals in life, but who of us gets to plan our life. We are however, given a free will, and I have chosen to take God at His word. All things in life will not go well for me, but they will end well. Of that I am certain! (Shipwrecked on God--Stranded on Omnipotence) What better place to be?
Love Loretta
(Peritoneal Carcinomatosis/Ovarian Cancer Stage IV) DX 11-12 – Pre-op chemo 2013 – Cytoreductive Surgery UPMC July 1, 2013 – Successful Cyberknife Surgery for 3 cancerous nodes on my Liver in 2014 – Carboplatin/Paclitaxel (Taxol) 6 treatment regimens in 2015 and also in 2016 which ended Jan. 19, 2017. Now as of yesterday, December 28, 2017, am on yet another series of the same chemo because I simply am not going to “try any and everything” and continue to suffer with reduced “quality of life.” My onc says he thinks I’ve built up an immunity to it, but he is going to abide by my choices! He always lets me have the “last word”. I firmly believe that only the patient should have the “last word”. All my family is aware of my wishes and that’s the way it should be. After all, I’m the one with the cancer.
Hello Loretta........I enjoyed reading your latest reply. It made me think about all of the choices I have made, and have yet to make in the future. I admire your honesty regarding treatment options, and when ENOUGH IS ENOUGH. I'll be the first to admit it scares the crap out of me; I feel as if I am living my life in the shadow of cancer. How do you manage to stay upbeat? My life is a roller coaster....................counseling has told me to LIVE IN THE MOMENT, but that is easy to say!
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CT Review today
Today is the day we review last weeks CT scan. At this moment I am a bit anxious and searching as much as possible. I am pretty sure my doctor wants me to follow the Lynparza route. I am grateful my son is going with me, he's a great second ear and mind! I will let you all know the outcome in the next few days.
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LynparzaLorettaMarshall said:Okay PandaGypsy~U R A pioneer~your truthfulness benefits us all!
Hello -PandaGypsy - This is Loretta -
Started my 4th series of Carboplatin/Paclitaxel yesterday. I'm having lots of tumors in my stomach until it is crowding out my ability to eat anything near a normal amount of food. Half a hamburger and 4 ounces is about it, just to give you an idea. I'm also having pelvic problems too. I've told the doc that I'm not going to go "downhill" on DOXIL or any of the other meds that fall under the top treatment suggested. He says he thinks I am becoming immune to that regimen, but he always lets me have the last word. So I said, "Well, you know I'm terminal, but I know I'm a Christian, and I'm going to die sometime. I've prayed about this, and if it doesn't work, then it's just my time."
Now that's not without emotions that I say that.
There's no time that I want to leave my husband and family. We mean so much to each other, but Adam and Eve are no longer here, and I'm not going to live forever. But I do believe John 3:16 and when I put my name in the "whosoever" slot, and confessed my sins to the Lord, I know that he heard me. https://www.biblegateway.com/passage/?search=John+3:16&version=KJV I did that at age 29, and I firmly believe that Heaven is my next destination, although my cancerous body will return to dust--not my spirit. This assurance gives me peace in the here and now. I'm not about trying any and everything just to "stay alive." When I read about the trouble you are also having with Lynparza, you got my attention: I know that my oncologist said, if the Carbo/Taxol didn't work that he could give me the maintenance drug, Olaparib. But you say that's terrible as well. So you may as well tell me some of the awful effects you're having. What other ladies suffer with helps me to decide just how much risk I'm willing to take. As for me, I think I'm nearing the point of the old Kenny Rogers' song - The Gambler-- "You gotta' know when to hold 'em—when to fold 'em—when to walk away—and when to run! I think I'm just about there! Here’s Kenny -
https://www.youtube.com/watch?v=Jj4nJ1YEAp4Thanks for your honest postings. There's no time to beat around the bush when we're coping with a Stage IV cancer, even though we hope we can have some interval of quality of life along the way. I’ve told all my friends, “Just pray for the to be done in my life. Don’t just pray that I will be healed, rather pray that God will continue to give me the faith to believe HIS promises and trust HIM for the outcome! I’ve known many in my own immediate family who were believers and who died of cancer. Why do I think I’ll get a “free ride?” Having Cancer was never one of my goals in life, but who of us gets to plan our life. We are however, given a free will, and I have chosen to take God at His word. All things in life will not go well for me, but they will end well. Of that I am certain! (Shipwrecked on God--Stranded on Omnipotence) What better place to be?
Love Loretta
(Peritoneal Carcinomatosis/Ovarian Cancer Stage IV) DX 11-12 – Pre-op chemo 2013 – Cytoreductive Surgery UPMC July 1, 2013 – Successful Cyberknife Surgery for 3 cancerous nodes on my Liver in 2014 – Carboplatin/Paclitaxel (Taxol) 6 treatment regimens in 2015 and also in 2016 which ended Jan. 19, 2017. Now as of yesterday, December 28, 2017, am on yet another series of the same chemo because I simply am not going to “try any and everything” and continue to suffer with reduced “quality of life.” My onc says he thinks I’ve built up an immunity to it, but he is going to abide by my choices! He always lets me have the “last word”. I firmly believe that only the patient should have the “last word”. All my family is aware of my wishes and that’s the way it should be. After all, I’m the one with the cancer.
I have been on Lynparza for 3 years. I got on it right after it was approved by the FDA. It saved my life. It was the first PARP out there. There are some other ones now but I did have to be BRCA positive. I think some of the newer ones you may not need to be BRCA positive. I was on chemo when I switched. I was ready to throw the towel in on chemo. It was too hard on me. I went to a Dr. in Boston and he worked it through the insurance comapny that I could have it. At first I was very fatigued and vomiting but it eventually went away. I think Lynparza is a wonderful drug. I am glad to be taking Lynparza. It saved my life.
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The next leg of the journey
Greetings! I was uplifted to read Blue J's post about Lynparza. Altho the reality of my body acclimating to yet another invasive drug looms, I am encouraged that perhaps there is the possibility of internal harmony after a period of time. My CT was "good" according to my doctor. He was uplifted and positive. However when I asked to see the actual CT scan he skirted around the moment & I did not persist, nor did my son. i found out from my GP that the reason might have discouraged me. She said the cancer remains in all of the areas it occupied but it was reduced from the last rounds of chemo. There are no new masses. My CA125 is down to 138. This may seem high to some people but I've learned it is a personal comparative form of measurement in so many ways. Last summer I went from 88 to 1385 in 2 months! So for me to be at 138 is an achievement!
My doctor does want me to take the Lynparza. When I asked him if he had any personal statistics or experiences he could share with me about his other patients that took this drug his response was sobering to me; "No, because not many of my patients have not made it this far to meet the qualifications to use this drug." His statement made me realize again that I am not getting out of this alive. I immediately went home & came down with this big cold/flu for a few weeks. Writing, painting, thinking. Just being quiet with myself. It is important to me to be as positive as I can be when I take anything so my mind & heart can support the work it does in my body. To embrace it as much as I can. My thoughts and words on paper kept going in circles all based on being tired of being tired & sick, and not knowing if I had the stamina to take on yet another "treatment". After going no where with my fears, fatigue & concerns I finally came to a decision to take the Lynparza, if not for myself then for my daughters and my grand-daughter & all other people my experience can benefit. Somehow this truth is sustaining me in the moment as well as knowing I can stop taking it if I choose. It arrives today.
It is with gratitude to Blue J that I see she has been maintaining on Lynparza for 3 years! Thank you for a positive reason to give Lynparza a chance and Congratulations to you! Every little bit helps each and everyone of us because we all know it isnt easy at any level. Pandagypsy & Loretta you are both in my thoughts & prayers & now Nicm! I appreciate each of you and wish you all courage, strength, peace and love.
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beginning of week 3 on Lynparza
Greetings! A special hello to Ann who is beginning a course of this medicine (Lynparza) this week! My news is uplifting! Despite all of my fears and concerns, so far this medicine has been manageable and I have been able to continue with most of the things I do daily. Although I should add that i am not formally working specific hours for anyone at this stage. If I had to hold down a job it would be quite a challenge I think. I am so very grateful for the gifts of my children and others to make this possible.
My daily process with the Lynparza Tablets (2 in the morning - 2 more, 12 hours later) has been to take one .50 Ativan (Lorazapan) 30 minutes before I take the Lynparza. This gives the powers of the anti-nausea element of ativan a bit of a head start. And it is working. I have not thrown-up once. I have been nauseous daily but it is not incapacitating. I have also been very selective about eating foods that I know my stomach can easily digest, being careful to not overeat.
My stamina continues to suffer. I need to pace myself all day long. I work to balance moving with the sitting required to do beadwork or paint. My joints, back, hips, elbows, wrists, neck all ache and need extra care. My mind tells me these are the signs that the medicine is doing its job and I need to support the work its doing. I drink alot of water every day to help detox - move any dead or dying cells out of my body. I've also been doing hatha yoga gentle movements and using my daughters homemade "bliss cream". My 9 month old baby grandaughter keeps me active crawling down the hall with her! As much as my body screams at me - I know this is good medicine & get in the flow with it. Staying as actively engaged mentally, physically and spiritually is key for me to not fall into the abyss of depression. Life, my Life will never be what it used to be. It has taken some time to bring myself to an acceptance of this and to readjust how I move through my life on all levels. Loving all that Life is bringing to me each moment.
I just read a wonderful book written by a young woman - Fi Munro- who is now 32 & was diagnosed with Ovarian Cancer at age 30. She is an inspiration to all no matter what treatments we are taking. The title of her book is:
Love, Light and Mermaid Tales written by Fi Munro.
I highly recommend it. Its a good short read and worth every word. She is a warrior living her life to the fullest.
I hold onto BlueJays words that "Lynparza saved my life!" I realized that every transition we make as we grow has come with its own set of physical challenges. Even becoming pregnant many of us are pretty sick for a few months as our systems adjust to the new demands being made upon it. The only differance is that we are not getting a baby as the final gift, perhaps our gifts are the everyday moments, the truth in our relationships, the insights into our own strengths, fears, joy and most of all the love we get to share ever more deeply. Cancer has made me a better person I think.
Time to take my darling little pills!
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Off the Lynparza
My doctor took me off the Lynparza after 2 months. My CA125 went up from 138 to 535 in the time i was on it and my CT scan shows that the cancer is growing. Oh well at least I gave it a shot. My oncologists recommendation is 3 rounds of carbo platinum to begin with. This would be the 3rd time beginning a set of rounds. I'm not sure if I'm up for it. I have been in a fair amount of pain and had to resort to pain pills again. Blah! Not feeling like a warrior tonight.
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How are you doing vajrawoman8VajraWoman8 said:Off the Lynparza
My doctor took me off the Lynparza after 2 months. My CA125 went up from 138 to 535 in the time i was on it and my CT scan shows that the cancer is growing. Oh well at least I gave it a shot. My oncologists recommendation is 3 rounds of carbo platinum to begin with. This would be the 3rd time beginning a set of rounds. I'm not sure if I'm up for it. I have been in a fair amount of pain and had to resort to pain pills again. Blah! Not feeling like a warrior tonight.
How are you doing vajrawoman8?
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lynparza for last 8 mos, so far so goodBlue J said:Lynparza
I have been on Lynparza for 3 years. I got on it right after it was approved by the FDA. It saved my life. It was the first PARP out there. There are some other ones now but I did have to be BRCA positive. I think some of the newer ones you may not need to be BRCA positive. I was on chemo when I switched. I was ready to throw the towel in on chemo. It was too hard on me. I went to a Dr. in Boston and he worked it through the insurance comapny that I could have it. At first I was very fatigued and vomiting but it eventually went away. I think Lynparza is a wonderful drug. I am glad to be taking Lynparza. It saved my life.
i am not brca positive. i was stage four ovarian and pertonitel cancer victim. seeking a friend to share the experience with sandi
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Dear Sandi:
You have written in a space above where it may be difficult for others to find you in the future. So I’ve taken the liberty of answering you on a “separate topic forum” and if you will return to that space to ask additional questions or provide more information about you, we can better keep up with you, so please see my reply to you here.
https://csn.cancer.org/node/318357
“VajraWoman8” was interested in knowing how others were faring on Lynparza. You say you have been on it for 8 months and doing well. That’s good to know. But since you also have Ovarian Cancer Stage IV and Peritoneal Cancer, and she didn’t talk about that. Moreover, she hasn’t given us an update since April of 2018, so I’m not sure of her present status. Sometimes people here write for a while, then go silent, then return later to write again. But often we don’t hear from them again, and we always wonder just how they made out, since we all are well aware of the stats for Ovarian Cancer and the possibilities of recurrence.
That said, in the future, I think you would be better served to have your own “topic forum” so that others who are dealing with Stage IV and Peritoneal involvement can relate specifically to your problem. We do know that Peritoneal Cancer can come from more than just Ovarian Cancer, sometimes it might be from Colon or Appendix cancer as well, but in my case it came from my ovaries. So I hope you don’t mind that I took the liberty of answering you on the “new topic forum”. However, there may be some who do want to share their experience with you if they have had “Lynparza”. And I would be interested to know what side effects you have coped with so far since my next regimen will likely be a parp inhibitor “Olaparib”.
So even though we never want to meet yet another Ovarian cancer patient here or anywhere, we say “welcome” and we are all in this together and our collective experiences help one another to understand this cancer better.
Loretta
Peritoneal Carcinomatosis/Ovarian Cancer Stage IV (DX 11-2012)
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