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PARP inhibitors

alicia2020
Posts: 162
Joined: Sep 2020

Hi, Ladies!

I'm starting this new thread for a new discussion...which I doubt most of you have encountered, but I'm curious if you have! My doctor is encouraging me to take a PARP for maintenance, Zejula (nirapibib), post-chemo. I need to make a decision in the next month or so.

So...everything I read...all research articles are about trials for these drugs, as they relate to recurrent, advanced ovarian cancer with a BRCA mutation. NONE of those apply to me. With a Fallopian tube diagnosis I get lumped in with the ovarian, but 70% of ovarian cancers are serous carcinomas. Only under 20% are endometriod adenacarcinoma (the other 10% are clear cell and others), which is what I have/had. FDA has approved Zejula for Fallopian tube patients with or without the BRCA genes. The list of potential side effects is long and serious....including the potential for developing leukemia eventually. I don't want to take it, but don't know what to do!

Here's what I'm wondering....So many of you have been diagnosed with UPSC, and have been stage 111 or IV, have any of you been asked or has it been suggested you take a maintenance drug? If maintenance drugs are so effective for ovarian patients with a serous diagnosis, wouldn't it make sense it would help uterine patients with serous or endometriod carcinomas? Especially those of you who at initial diagnosis had LVSI and spread outside the uterus? I've read many posts here of ladies taking various drugs for recurrences, but I haven't recognized them as being PARP's. 

When I asked my doctor last week why he wanted me to take the drug his answer was, "Because it's my job to keep you here." I have to see him late this afternoon for my PET scan results (which we are desperately praying says we have succeeded in first-line treatment). I'm going to tell him his original answer to my question was not specific or scientific and I need a better answer than that!

Please let me know what y'all have known or experienced! 

Thank you in advance!

❌⭕️, Alicia

Forherself's picture
Forherself
Posts: 566
Joined: Jan 2019

Hi Alicia, I cannot answer your question about PARP inhibitors, but was surpised by your doctors comment.  I think the questions you asked on this board would be very good questions for your doctor.  I think they are not used to patients that have studied their disease and treatment.  His answer was not appropriate for you.  You might ask him for some studies that indicate it will help you, as endometrioid and serous do have different mutations and react differently.   Maybe he is using it because it has been approved.  The more I read, the more I realize that our mutations determine our reaction to drugs and treatment.   I wish they did more testing.  I think your detailed questions are appropriate questions to ask the doctor, as well as this board.

Sue

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2914
Joined: Mar 2013

Sue, I agree with your interpretation that "mutations determine our reaction to drugs and treatment."  There are drugs that respond better to people because of BRCA 1 or 2 and PDL.  It is not a one size fits all.  

els19
Posts: 105
Joined: Jun 2014

Alicia, I've found that even with the diagnosis of UPSC it can be very individual for each person. Some are HER2 positive, others are not but have some difference that impacts their treatment. My doctor told me there was not a maintenance drug that would work for me right now. He also explained some that he has previously tried that he found did not work. Of course, all these drugs have side effects and his plan for me right now is to rest and heal. He already has plans for the next step. But he also told me that he's found that this cancer can be a bit different for each patient. You might want to get a second opinion from another doctor. You have expressed some frustration with you're current doctor. This could be a good time to check out another doctor.

MoeKay
Posts: 350
Joined: Feb 2004

Alicia, I agree with Sue that your doctor's answer about the benefits of your taking the PARP fell far short of the mark.  I'm going to give him the benefit of the doubt and hope he may have just been tired or having a bad day.  He needs to respond to the follow-up question of why specifically he thinks the PARP would benefit you, whether it be telling you about encouraging results from research studies, or conveying to you his personal knowledge of how other similarly-situated patients benefited from this treatment.  I think the days of patients blindly following their doctors' treatment recommendations have become, or are at least becoming, a thing of the past. 

alicia2020
Posts: 162
Joined: Sep 2020

Wow! You all have very good ideas and fodder for my next bit of research and questions!

I need to study my genetic results paperwork ...which stated all was negative, but I don't know that much about the HER2 positive thing. So many variables to consider. I think another thing I need to dig out is the pathology reports from my surgeries. I know there was a lot of information there about staining for specific things, like T something or P53. Ma, that stuff gets complicated!. I know that the PARP's I'm familiar with are FDA approved for ovarian, FTC, and PPC. I guess they don't have approved for use with uterine cancers? Maybe there's some ongoing research? 

Yes, the side-effects really scare me. My sweet husband....boy, poor guy, he's learned a few things, too! His first suggestion was, " Well, if you do start taking it, don't do it on a Friday! Do it on a Monday or Tuesday!" That's right!

As to my doctor, I've decided he's a bit flummoxed by me. Like, I throw him off his game a bit and he isn't ready. MoeKay, I do hope the days of blindly following doctor's is over! Forherself, he did say at one point yesterday that not all his patients were as educated as I was. We had a better discussion yesterday and I'll see what my chemo nurse says.

I know y'all know this feeling......I'm fatigued mentally and physically at this point and it's hard for me to focus on a new mountain to climb. Thank goodness I have a few weeks to enjoy my most recent victory before I make another important decision. When I was growing up, my mother would always say, "Make a list of the pros and cons!" That strategy never seemed to work too well for me! So, like in my current dilemma, I have... let's say...5 really good reasons NOT to take a PARP. And only 1 really good reason TO take it: Best chance to not have a recurrence. 
Thank you for all your input. You gave me a lot to think about. Bless you. Bless you. Bless you.

Hugs to all, Alicia

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Alicia, just wanted to say..... could you try taking the PARP and if the side effects screw up your quality of life, stop taking them.... ???

I hope you have a good trip and find some healing in visiting your old stomping grounds. :-)

Love and Hugs,

Cindi

alicia2020
Posts: 162
Joined: Sep 2020

Yes! That's what I'm considering! Trying it, and seeing how it goes. At least I'd know I tried. We discussed dosage, and he's wanting me to take a kind of "middle" dose,not the highest. And then we could lower it perhaps, before totally giving up. One of my friends pointed out yesterday...."You have always said you wanted to do this (chemotherapy) just once!" She's right!

I am looking forward to my trip! (the Pennsylvania part!) It's amazing how a walk down a lovely, sweet, old memory lane is good for the soul!

😎, Alicia

alicia2020
Posts: 162
Joined: Sep 2020

Hi, Ladies!

My meeting with my chemo nurse was good and I got a lot of my questions answered. And the answers gave me hope! I hope these answers may help others who are facing decisions about maintenance drugs.

Question: Doctor started talking about a maintenance drug after my third infusion. Did something change that made him think I needed one ....like he thought I was sicker or treatments weren't working...or was this part of his plan all along? Answer: Nothing changed. He always planned on suggesting it, but didn't want to overwhelm you.

Question:When I signed the document agreeing to chemotherapy, it clearly stated that the intent of treatment was "curative."  The unchecked boxes were "maintenance " and "palliative." Have we moved boxes? Are we now in the "maintenance " box? Answer: No! We think we've achieved "curative," and we want to keep you there!

Question: Will Medicare and my insurance pay for this? Everything on the internet says that Medicare pays for PARP's. Answer: No, Medicare doesn't pay. (She thinks my supplemental will pay and says she's never had a patient pay more than $150 a month OOP.)

Question: I've read research articles that found that taking PARP's had efficacy in increasing PFS, but not OS. If they don't increase OS, what's the point? Answer: The drugs are too new and haven't been around long enough to obtain those research results.

Question: I was hoping to live to be a little old lady. (There's lots of female longevity in my family.) I feel like by signing up for this drug, there's no way I can take it for decades and there's no way I can achieve that....and it's kind of like signing my own death sentence? Answer: No, it doesn't mean that at all. (I know the research isn't out there, but at least as of now there's no contrary evidence.)

I asked about the "necrotic lymph node." She said there was some uptake on the PET,  but it was very low and probably was a dead node. And that the tiny concerns about the CT and PET were with inflammation...and were all things probably related to results of surgery. 

So...she's doing all the paperwork and I agreed to try taking the drug...starting about 10 days after I get home from my trip. We will do bloodwork every week for the first month and then monthly. If bloodwork tanks, take me off for a week, give me time to feel better, and then resume with lower dose. (They're starting me at 200mg once a day, which is the medium dose.) She said biggest complaint from her patients is fatigue, but for me with my hiatal hernia and living my life in a half-nauseated state anyway (some of which is anxiety related!), she thinks nausea may be my worst side-effect. 

That's the scoop. We are going to see. I have to be able to tell myself that I tried.

😎, Alicia

Dak82's picture
Dak82
Posts: 82
Joined: Dec 2020

So glad you got your questions answered! I really wish I'd had an interim CT scan to see if chemo was working which makes me think no one followed the threads on MSI and what that could mean. I swear I'm going to put my sister on the phone with me there also. She spent 20+ years as a bio patent lawyer. K owns how to do research and read and understand test results. I am sending the two papers she found to my doctor. https://acsjournals.onlinelibrary.wiley.com/doi/10.1002/cncr.32058 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6544911/

Those are the two. Happy reading and I hope others find some answers here. I plan to go back through my various reports to see exactly when both the MMR and MSI were found.

Happy Sunday to all! I got both my Covid shots and the weather is great here in Utah today!

Deb

 

alicia2020
Posts: 162
Joined: Sep 2020

Hi, Ladies!

Wanted to let you know about what's gone on with my new PARP inhibitor (Zejula) experience. First of all, it's quite a ridiculous process to work with the drug maker (GSK) and get it figured out that I'm not having to pay anything for it. Those pills, 100mg that they want me to take 2 of per day, are over $1100 per pill! So I was happy to engage in a half a dozen phone calls to avoid that! Medicare does NOT pay!

Secondly, I was sooooo nervous about swallowing those first 2 pills! I called my wonderful chemo nurse and reminded her of how I described my body's reaction to that first chemo - Assault!! So, i had the idea that I could/should take just one pill for a week and give my body time to adjust. My body might say, "OH, so we're back to that???" But maybe it wouldn't be so bad that it would want to revolt! Not only did she say it was fine, but that it was actually a good idea! And that if 2 pills went badly, she'd have to cut it back anyway.

Thirdly...So i took 100mg last Tuesday. I've had my 6th pill now and I haven't had anything go wrong! I haven't had any side effects.  That seems promising! This coming Tuesday I will have to try the 2. I'm supposed to have a CBC done at some point this week, to make sure platelets and red & white BC's aren't tanking! Fingers crossed.

I will say that it's very emotional for me to take that pill. :(( A big old' reminder that this horrible business (having cancer) is still with us. But all of us here have that forever from the minute you first hear that word! I did as I said I would...I swallowed it and said, "Let's kill some cancer cells!"

Man.....all of life is that way, isn't it? Attitude is everything! I'm trying!

Hope y'all have a good week, especially our newbies having surgery soon. Thanks for listening! 😘

Alicia

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Great update Alicia! So happy to hear you are tolerating the pills so well. I hope your counts stay up and you continue your recovery path.

Love your attitude and your ability to share your feelings. I believe that will be very helpful to someone down the road. One never knows who they are going to touch during this journey.

Stay strong and please continue to document your journey.

Love and Hugs,

Cindi

alicia2020
Posts: 162
Joined: Sep 2020

Thx, Cindi! I alwayes appreciate your kind words! I try to be a great cheerleader for myself, but some days I'm better at it than others!

I wonder.....maybe I'll ask my chemo nurse.....maybe those pills would be easier to swallow if I started the routine with salt & lime in one hand and a shot of tequila in the other?? 😂 Ha! (It occurs to me now that no one ever mentions alcohol on these threads! I'm not much of a drinker, but sometimes I think it might help if I was!)

I'll let y'all know how this next week goes. Good Tuesday to All!

😎, Alicia

alicia2020
Posts: 162
Joined: Sep 2020

Hi, All!

I'm happy to report, so far, so good on the Zejula!

So, I took the 100mg for a week, and then this last Tuesday I started taking the originally prescribed 200mg. It was hard to swallow that second pill! I had done so well for a week, I really hated to mess it up! But I still seem to be OK! We won't really know until this week how my bloodwork is holding up. I don't have any symptoms of low red blood cells. I did notice a pretty nice bruise (low platelets?) on my upper arm last night, but maybe I just cut a corner around a doorway to close! I'm known to do that! I'm really shocked that I seem to be tolerating the immunotherapy so well. I've dreaded this for months and it's OK so far. It's just like with chemotherapy and radiation...we all react so differrtly! Especially with my drug, side-effects are either awful or nothing. I really don't know how that's possible! Anither patient in the treatment room said she had a friend who tried Zejula and it made her so horriblly sick she had to stop. 

I got my ugly port flushed for the first time Thursday and was glad to find out that was nothing! 
I'll let y'all know about the bloodwork later this week. Fingers crossed!

Have a nice weekend! 
❌⭕️, Alicia

alicia2020
Posts: 162
Joined: Sep 2020

So, now I'm 2 1/2 weeks in on the drug. I do have some waves of nausea occasionally (that was somewhat true before my cancer), and I do have some fatigue, but that seems to feel like old chemotherapy fatigue. Maybe that's just the 109 heat index days we've been having! All in all, MUCH better than I expected! Nurse says even though RBC's and things related to it were red-flagged, they were just barely over the line. She says that  my bloodwork should not tend to get progressively worse (cumulative), like chemo, but that my body will adjust. We're going to see!

Now...since my CT and PET were only 99.5% perfect, I have another CT scheduled for July 5th. Fingers crosses! Man....I hate that scanxiety!

😎, Alicia

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Alicia, you are doing AWESOME! So happy to see this report. 

Try to put the scan out of your head until closer to the 5th. Enjoy your 99.5% for now. :-)

Love and Hugs,

Cindi

alicia2020
Posts: 162
Joined: Sep 2020

Your support is so welcomed! I have spent the day with the family today...breakfast, swimming this morning, and we all went for late lunch...And I felt pretty much like my regular self!! Amazing! It was very sweet them rememberping how in the not too distant past when they all went, but I was too ill to go. They were thrilled to have the old me back!

I'm going to try not to worry about the CT. If my doctor thought there was any chance that I had active cancer, he would never have let me take that trip to NY! I'd have had to do more chemo! And I have no symptoms of anything bad going on! Yay!

Thx to all of you for hanging in there with me!

❌⭕️, Alicia

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