PARP inhibitors
Haven't visited this site in a while.........but I need some input:
Has anyone had any experience taking PARP inhibitors, specifically Zejula or Lynparza ? My CA125 has gone from 19 to 49 and then 425..........latest results from 2 days ago not in yet. After a CT scan (waiting for insurance authorization, don't you just love it?) to see what's causing this, Dr. has suggested these 2. Dr. says "it's just a pill I would take, can't have any more chemo". From what I have researched, these have some very serious and nasty side effects. HELP!
pandagypsysy.....thanks for any first hand info!!!!!!
Comments
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pandagypsy! It is good to
pandagypsy! It is good to hear from you but I am so sorry to see why you are here now. I am sorry I can't give you any input on the PARP. Hugs dear one. Please come back and let us know how you are doing.
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no PARP knowledge here
I am sorry I can't help you with any knowledge of PARP. I have had my CA125 raise and just had to watch it go up waiting for the CT. It's very scary to see the numbers raiseing. I am under going IP chemo at this time but am looking in to getting in to a study. We have to wrap our heads around what is right for us. We don't know and have to work it all out trust yourself to do the right thing for you. Hugs
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I"ll be the guinea pig
Since no one has had experience with PARP inhibitors, I will be the first to report on it. My CT SCAN came back with extensive omemtum disease. So I have to wait & see which one my insurance covers. My other option is to sign up with Hospice. So, ladies, I will keep fighting the fight and keep you updated on the wonderful world of PARP inhibitors......."just a pill" says my Dr. but ,sounds like it has the same effects & dangers of any other chemo
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Thank You
Pandagypsy thank your for going to keep us update on PARP. Good luck and I will be praying for you
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Thank you ♡bettyboop3917 said:Thank You
Pandagypsy thank your for going to keep us update on PARP. Good luck and I will be praying for you
Thank you ♡
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The journey begins
I haven't started any treatment yet with a PARP inhibitor.......I am trying to get it at a price I can afford (laughter can start now). Dr. wants me on Lynparza since it has been around the longest & has the most data on it. He didn't believe me when I told him how much it will cost with my ins. (a medicare advantage hmo) & sent in my script to FL CANCER'S "in house" pharmacy. Through my ins. mail order pharmacy it will be $725 per month..his pharmacy $3058 per month! After a big laugh from me, his pharmacy suggested they contact the person @ the Dr. office that deals with insurance they would assist me with finding patient assistance. Waited 2 full days& not hearing a word I called the office & could only leave a detailed voice mail for this person.
I am grateful to still be well enough to search for info myself; I went on the Astrazenica site, printed their patient assistance application, gathered the required documentation and drove to the Dr's office before they closed. I told the woman at reception what I experienced &she said, unfortunately Greg was the only "financial advisor" in the office & he was very busy. I then said, I'm very sorry for his luck but I don't really give a **** how busy he is; I AM TERMINAL & CAN'T AFFORD THE LAST HOPE FOR ME THE DR.PRESCRIBED!!!!! I am willing to fight one more fight, but I can't get the drugs!
I showed her what I had found from the drug co. & I needed the Dr. to complete it and fax it TODAY!! She looked it over & said the nurse usually fills it out but she wasn't in today. I just looked at her in disbelief when she sais, I'll give it a go & track down the Dr. to sign it......WHAT AN ANGEL!!!!! After doing the above she came back with the completed forms & told me the Dr. said Greg was supposed to assist me in obtaining the drug.....she told him that Greg never contacted me. She then faxed it all while I was there, scanned it into my chart & returned it all to me for my records.
I am sooooooo grateful, not only for this wonderful caring person helping me, but also for the fact that I was able to take some action myself. Sad but true ladies, YOU must become your most powerful advocate. I suppose if I do get on this drug & get worn down & burnt out, anything goes. I can only hope Hospice is more considerate.........
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"Gypsy"~Hope U get 2 wander around 4 A long time!pandagypsy said:The journey begins
I haven't started any treatment yet with a PARP inhibitor.......I am trying to get it at a price I can afford (laughter can start now). Dr. wants me on Lynparza since it has been around the longest & has the most data on it. He didn't believe me when I told him how much it will cost with my ins. (a medicare advantage hmo) & sent in my script to FL CANCER'S "in house" pharmacy. Through my ins. mail order pharmacy it will be $725 per month..his pharmacy $3058 per month! After a big laugh from me, his pharmacy suggested they contact the person @ the Dr. office that deals with insurance they would assist me with finding patient assistance. Waited 2 full days& not hearing a word I called the office & could only leave a detailed voice mail for this person.
I am grateful to still be well enough to search for info myself; I went on the Astrazenica site, printed their patient assistance application, gathered the required documentation and drove to the Dr's office before they closed. I told the woman at reception what I experienced &she said, unfortunately Greg was the only "financial advisor" in the office & he was very busy. I then said, I'm very sorry for his luck but I don't really give a **** how busy he is; I AM TERMINAL & CAN'T AFFORD THE LAST HOPE FOR ME THE DR.PRESCRIBED!!!!! I am willing to fight one more fight, but I can't get the drugs!
I showed her what I had found from the drug co. & I needed the Dr. to complete it and fax it TODAY!! She looked it over & said the nurse usually fills it out but she wasn't in today. I just looked at her in disbelief when she sais, I'll give it a go & track down the Dr. to sign it......WHAT AN ANGEL!!!!! After doing the above she came back with the completed forms & told me the Dr. said Greg was supposed to assist me in obtaining the drug.....she told him that Greg never contacted me. She then faxed it all while I was there, scanned it into my chart & returned it all to me for my records.
I am sooooooo grateful, not only for this wonderful caring person helping me, but also for the fact that I was able to take some action myself. Sad but true ladies, YOU must become your most powerful advocate. I suppose if I do get on this drug & get worn down & burnt out, anything goes. I can only hope Hospice is more considerate.........
Dear "Gypsy"
Your letter peaked my interest in the drug Lynparza and I decided to look into its usage. So I decided to answer you specifically, but I put it on a separate topic so that others might like to read more about Lynparza. The info I've listed could serve as a starting point for others if their doctors are prescribing it for their particular problem. So please read my reply at: https://csn.cancer.org/node/309690
Sure hope your efforts to get help with funding will pay off for you and wishing you every success. I know that you want to wage war against this cancer as long as you are physically able, as we all do.
Loretta
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The world of Lynparza starts today
My Lynparza script was approved (NO $$$$) by AstraZenica, I recieved a month's supply (4 bottles!) a few days ago. I called the Dr. to tell him & ask if I should wait til I see him today before I start. He said, No, start now, that way we can see how it effects you. I started with the questions: when is the best time to take it, with food or no food, etc. He told me to read the package insert!!!! Grrrr, I told him there wasn't any.....after him hemming and hawing, he said he would call me right back. By the time he called, late in the afternoon, I had already decided I wasn't going to start til I talked to him today............I want to know what kind of "preventitive" drugs I would get, particularly for nauseau. Any way, he called when I had a bottle of my favorite beaujolis in my hands, & I was determined to enjoy it BEFORE I began the new drug. This afternoon I am scheduled to get some baseline bloodwork to see how Lynparza effects CA125. blood counts, etc. ........and I have plenty of ???????s for the Dr.! let's see how it goes.......................stay tuned.
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pandagypsy - you are my hero!pandagypsy said:The journey begins
I haven't started any treatment yet with a PARP inhibitor.......I am trying to get it at a price I can afford (laughter can start now). Dr. wants me on Lynparza since it has been around the longest & has the most data on it. He didn't believe me when I told him how much it will cost with my ins. (a medicare advantage hmo) & sent in my script to FL CANCER'S "in house" pharmacy. Through my ins. mail order pharmacy it will be $725 per month..his pharmacy $3058 per month! After a big laugh from me, his pharmacy suggested they contact the person @ the Dr. office that deals with insurance they would assist me with finding patient assistance. Waited 2 full days& not hearing a word I called the office & could only leave a detailed voice mail for this person.
I am grateful to still be well enough to search for info myself; I went on the Astrazenica site, printed their patient assistance application, gathered the required documentation and drove to the Dr's office before they closed. I told the woman at reception what I experienced &she said, unfortunately Greg was the only "financial advisor" in the office & he was very busy. I then said, I'm very sorry for his luck but I don't really give a **** how busy he is; I AM TERMINAL & CAN'T AFFORD THE LAST HOPE FOR ME THE DR.PRESCRIBED!!!!! I am willing to fight one more fight, but I can't get the drugs!
I showed her what I had found from the drug co. & I needed the Dr. to complete it and fax it TODAY!! She looked it over & said the nurse usually fills it out but she wasn't in today. I just looked at her in disbelief when she sais, I'll give it a go & track down the Dr. to sign it......WHAT AN ANGEL!!!!! After doing the above she came back with the completed forms & told me the Dr. said Greg was supposed to assist me in obtaining the drug.....she told him that Greg never contacted me. She then faxed it all while I was there, scanned it into my chart & returned it all to me for my records.
I am sooooooo grateful, not only for this wonderful caring person helping me, but also for the fact that I was able to take some action myself. Sad but true ladies, YOU must become your most powerful advocate. I suppose if I do get on this drug & get worn down & burnt out, anything goes. I can only hope Hospice is more considerate.........
pandagypsy - you are my hero!!! I hope EVERYONE reads what you wrote so they know YOU HAVE TO BE YOUR OWN ADVOCATE. Mega-hugs dear one!
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Miss panda, "he called when I
Miss panda, "he called when I had a bottle of my favorite beaujolis in my hands"....you are cracking me up!
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Pandagypsy way to go!
Pandagypsy way to go on helping your self and pushing the right people to do their jobs. I still have yet to get why some office people don't like to do their jobs and have to be pushed in to do it. Keep up the good work and good luck to you.
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Thank you. ...spread the wordNoTimeForCancer said:pandagypsy - you are my hero!
pandagypsy - you are my hero!!! I hope EVERYONE reads what you wrote so they know YOU HAVE TO BE YOUR OWN ADVOCATE. Mega-hugs dear one!
Thank you. ...spread the word. My Dr. says by shaking up people who are supposed to be helping you will be of service to those that aren't smart enough or stubborn enough to take action.
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I try to keep myself &NoTimeForCancer said:Miss panda, "he called when I
Miss panda, "he called when I had a bottle of my favorite beaujolis in my hands"....you are cracking me up!
I try to keep myself & everyone else laughing
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started lynparza last night.
started lynparza last night. Insisted that my Dr. give me a script for Ativan, since that is the only drug for nausea that has worked in the past.....he kept coming back to Zofron, & I told him it doesn't work AT ALL for me.....as recently as last year when they gave me several drugs with no luck, finally listened to me & tried Ativan IV. A couple of days later I was in the ER with severe nausea and when I told them the story, I got it right away. So many times you just have to be the squeeky wheel instead of sitting on your hands and blindly following everything you are told.
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just my update on my PARP
just my update on my PARP experience. I am in my 3rd week taking Lynparza & so far it's not to bad. I am so talented, I can swallow 8 capsules in one gulp! I do this twice a day. Thanks to pre-treating with Ativan puking hasn't been an issue...heartburn, gas, aches fatigue.....so far blood counts good. STAY TUNED!
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pandagypsy
Wow you are talented, there is no way I can swallow 8 pills at one time. It sounds like so far all is working ok for you. That is great news to hear. Thanks for the update.
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This scares me!
On this whole site, there is only ONE thread! only one PERSON who is talking about Zejula?! I have just been prescribed it and thought I'd be able to find some good information here. I'm really discouraged that Pandagypsy seems to be the only person on the drug!
I guess I am glad to know how much it costs, since I hadn't even found out THAT yet!
Pandagypsy, please let us know how you are doing after six months!
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Just a quick update onBetsy L said:This scares me!
On this whole site, there is only ONE thread! only one PERSON who is talking about Zejula?! I have just been prescribed it and thought I'd be able to find some good information here. I'm really discouraged that Pandagypsy seems to be the only person on the drug!
I guess I am glad to know how much it costs, since I hadn't even found out THAT yet!
Pandagypsy, please let us know how you are doing after six months!
Just a quick update on Lymparza. It made me feel awful, tired, was anemic, didn't want to do anything, etc., you know, typical chemo effects. After ending up in the hospital for a transfusion, my CA-125 was way down. I told my Dr. I was not taking lymparza indefinely, since it had crappy side effects. "Maybe" I'll try 1/2 dose if my #s climb too high. Until then, I'll just keep watching my CA-125.
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panda, I am sorry to hear how
panda, I am sorry to hear how the lymparza made you feel.
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Greetings pandagypsy! Take good care of yourself and let everyone else do all the holiday preparations! I've been there with the anemia and blood transfusions and know that it takes a little time for your body to bounce back. It will bounce back. As long as you are nurturing it and getting the rest you need it will restore and rejuvenate once again. Our bodies are more than amazing.
I started asking the Lynparza question a few weeks ago on this site. I'm at a crossroads in treatment and my doctor has recommended Lynparza. I applaude your courage and willingness to give this treatment a chance to help. I'm not so sure that I am as brave as you at this moment in time. I am reading and researching. I also have a few more weeks before my CT scan so I am giving myself the holiday's to just participate in lifes celebrations for a minute. I hope you can allow yourself the same until you are back on your feet. My best wishes go with you!
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