Zejula parp inhibitor : Hello I’m Mary... - SHARE Ovarian Can...

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Zejula parp inhibitor

kittens2019
kittens2019
35 Replies

Hello I’m Mary from New England. I just had a metastatic recurrence of my ovarian cancer for which I was in NED for 2 Yrs and several months. I had strange symptoms and they found a lesion on my cerebellum which they removed successfully and it was very small. I had ten sessions of radiation. They want to start me on zejula a parp inhibitor. I’m looking into getting financial help as this med is so terribly expensive. Anyone ever been on zejula? What symptoms did you experience? Did you get financial help for the medication?

35 Replies
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Ryleebrown

Hi, I’m from NE too!

After 1st recurrence I was put on Zejula. Three pills each night and it was terrible for me. Had all the side effects, including ER three times. Dr. at Mayo took me off after being hospitalized for three days. I do believe I should have been started on one or two pills....who knows. Hopefully, you will do better on it than I did. 🙏

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kittens2019

Hi Rylee,

Thank you for your message. I’ve heard a lot from others about the nausea. I’ve already dealt with that from the radiation. Going to ask my dr if I may start on one pill. Was the nausea less on one pill? Who knows but that other pills cause the same nausea. I’ll be in touch with you.

God bless,

Mary

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Tesla_7US

kittens, Zejula is a new drug. There is no proof it adds a single day to the length of your life. The side effects can destroy your daily quality of life. Unless you are BRCA positive, there is doubtful benefit. PLEASE research this drug. You can find the newest info at Biomedical Publications. Remember, the initial study for this drug was paid for by the company that SELLS it. Cancer is an industry. Buyer beware.

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kittens2019

Thank you I see my doctor Thursday and will ask questions and look up biomedical publications. Yes cancer is an industry most likely because there’s so much of it. Thank you for your response and God bless.

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KCWM

Hi , In 2016 I had primary peritoneal which they consider ovarian and treat it the same way. I had a seven hour debulking surgery. After that had six chemos of carboplatin and taxol. Was in remission for 18 months when I had a slightly painful swollen gland in the groin. They did a biopsy and it was positive. So six more chemos of doxil and taxol. Brought the HE 4 blood test down to normal. My doctor watches the HE4 more than the CA 125 for me. I just started on Zejula 100mg for the last 30 days and had no side affects at all. Although hemoglobin was a little low. She now said let’s up it to 200mg which I did for the last 3 days and no side affects again. Although my HE4 has gone up from 96 to 152 in the last two months she is concerned. Will be tested in three weeks. Hope it’s not coming back again and Zejula works.🙏

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kittens2019
kittens2019
in reply to KCWM

Hello. I pray the zejula works well for you. Good to hear that you have not experienced side effects. Well from one warrior to another let us keep trudging forward! God bless! Mary

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ingrid48

Hi,

You can look at my entire history by clicking on my picture or name. But I’ll summarize

70 years old stage 4 BRCA2 peritoneal C since 2011 up and down in CA 125 in and out of remissions 8 years many protocols of chemo and still here! Started zejula 3 weeks ago at top does 300 milligrams every morning with food only side effect a little foggy last 2 days!!

Everyone reacts different!

Why not try it?

And some take it at night some in the morning

There is a whole group of us on Facebook called

Park inhibitors.. I highly advise you to look through it

Good luck and never give up!

Ingrid

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kittens2019

Hi Ingrid,

Thank you for your reply. Thank you for your positiveness abd encouragement! I’ll try it although it’s the expense. I have a pharmacy working on getting me help possibly from the manufacturer with the expense of zegula. How did that work for you?

I’ll check out the parp ladies on Facebook.

To a fellow warrior God bless!

Mary

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ingrid48

Yes, ask the doctor to help you. You can get it for free ( depending on income) or at big discounts

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kittens2019

I see I’ll talk to my dr Thursday about the process. I’ve been speaking to this pharmacy about discounts. Thank you and I’ll be in touch.

Mary

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Lobster2
Lobster2
in reply to ingrid48

I see 2 FB sights - Parp Inhibitors (57 members) and Parp Inhibitors - Drugs and Trials (847 members). Which sight are you referring to? I'm on Zejula as well.

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Mamaw1

I am on Zejula. My drs worked with the parm company to get help. No side effects to speak off. Good luck

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Mamaw1
Mamaw1
in reply to Mamaw1

Also ca125 remains at 9

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kittens2019
kittens2019
in reply to Mamaw1

Hello. That’s great news that you have no side effects. Yes I have a pharmacy working to get me discounts on zejula. You have a blessed day and thank you for your message.

Mary

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Ryleebrown

I am on immunotherapy, which is questionable too. Dr. Doesn’t recommend adding Zejula unless BRCA positive.

So many clinical trials using these combinations of drugs, so it’s all a guessing game and we wait. What is the alternative?

Good luck, you, God willing, may be one of the lucky ones. 🙏

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kittens2019

Yes I am brca1 positive thus they are putting me on zejula. The Lord bless you in your battle. To a fellow warrior be strong!

Mary

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Sam2424
Sam2424
in reply to Ryleebrown

Is this drug only for BRCA positive?

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kittens2019
kittens2019
in reply to Sam2424

Yes I believe so. Are you brca positive?

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Husbandteal

Please remember that to get the product approved by the FDA there are three phases of clinical trials they must go through. In phase three data has been collected from thousands of patients in clinical trials. The data must statistically report that the product is effective. Of course the company which spent millions developing the drug would pay for trials. Let us pray the government never pays for clinical trials! I am indeed grateful that companies take enormous financial risks in new drug development. Yes, they are a business, thank goodness, as that is how and where new drugs are developed! The current estimate for new drug development by Pharmaceutical Research Manufacturers of America is estimated at one billion dollars! Not all drugs get approved to save us but, thankfully, the research never stops. I have been on Zejula since last spring. Stay strong and trust in God and your medical team.

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kittens2019

Thank you for your message and information. I was wondering what all is involved with clinical trials. Sounds like the drug companies must go through a lot and that’s good to get a drug approved.

Glad things are going well for you with Zejula.

I’ll remain strong and trust in God and my doctors.

God bless,

Mary

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Husbandteal

From the time the molecule is presented to the FDA the approval time can average ten to twenty years. How long the company can hold their patents is an entirely other issue. I encourage all to research and study how all of this works. Plenty of direct information is available. Love to all of you on this shared journey.

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kittens2019

Thank you for further information. What a process but lives are depending on meds to help them so I can understand what an evasive process this is. Yes we warrior sisters can encourage each other!!

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jclee77

I too was on Zejula. My doctor enrolled me in a program that Biololgics & the pharmaceutical folks had and they paid for everything after ascertaining my level of income. Also they covered the $100 copay. I have Aetna insurance. The side effects were mininmal (a little nausea, a little upset stomach, some insomnia) especially since they took me from 300 mgs to 200 mgs which is what I could tolerate. After first month my CA125 dropped from 98 to 39 then 35 then stopped working. So my dr put me back on Abraxane (Taxol derivative & Avastin) CA125 dropped from 140 to 35 to 12 now.

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kittens2019
kittens2019
in reply to jclee77

So glad you had success with zejula and your numbers went down. It’s a war we waged with God’s help.

God bless,

Mary

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Husbandteal

We are so fortunate that another great company has an approved similar drug! That is a win win for all. The research involving our shared cancer lags behind that of other cancers. There was a time not long ago of very low survival rates as we are usually diagnosed too late due to lack of obvious symptoms. I was stage 3 with no clue why I was bloated. Just thought I was simply happily older and and a bit fat! Turned 78 last week and had a fantastic celebration with family and friends! So happy to be alive!

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kittens2019

Yes thank the Lord for the research that is there for our type of cancer. I was stage 4 and didn’t recognize the symptoms but my belly was so bloated. I remember looking down in the shower and seeing it. Well that was then and this is now. So thankful you’re alive also. I just got remarried last August and am praying for more years with my new husband. Lord grant it!

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Sam2424
Sam2424
in reply to kittens2019

Are you in remission ?

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kittens2019
kittens2019
in reply to Sam2424

I had a recurrence in my brain in January of 2019. I had it removed then ten session of radiation. Trusting the Lord that I’ll do well and I can once again be in full NED.

Blessings,

Mary

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suek44

Mary,

I am sorry to hear about your recurrence and so glad they caught it early. I was on Zejula as maintenance after I recurred six months after first line treatment. They started me on two pills a day and we quickly went down to one after my red blood cells went too low (common for me). I was able to stay on it for over four months and it seems to have extended my remission to double what was expected. I had some nausea and fatigue but was luckily able to keep my routines and work full time. I received a full scholarship even though we are a middle class couple working two jobs. I know I was very fortunate. I wish even better for you-please let me know if I can be of help.

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kittens2019

Hello Sue,

Glad you were able to work and you received a scholarship. That’s wonderful! Glad zejula helped you. I’m very anxious but I’m a believer in Jesus so have that peace from Him., I’m waiting to hear about getting help with zejula. The pharmacy should know today or Monday.

God bless,

Mary

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ingrid48

Mary

After u find out please let us know

Keep trying for the free Zejula depending on income. In the US if single and under 48 k $

I can send u the phone numbers if u don't get a response. I have the number for the Healthwell foundation that gave me the first 3 thousand

Then Tesaro takes over directly

You can email me at iepfeiffer@gmail.com

If you want

Ingrid

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kittens2019

Hi Ingrid,

I found out that we will be responsible for the first 5100 I believe then it drops to 5% that we will owe. It’s because I’m married and the combined income.

The Healthwell Foundation will help with the finances? May I have the number?

Thank you, Ingrid.

How are you doing?

Mary

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Lobster2

I'm BRCA 2 positive and am on it since August 2018. My first 2 months was rough stuff. How I survived it is only by God's grace. Started at 100 mg (all good), up to 200 mg (all good). 3 weeks in, up to 300 mg and that's when the $&!T hit the fan. Went back down to 200 mg and still sick as a dog (throwing up 6-7 times a week), no appetite, and there was very little food that appealed to me. I must have lived on about 500 calories a day for that timeframe. The benefit was weight loss which I needed to do anyway! This forum and replies from folks really helped me. I have a post on this site asking for help and got it. I also made a post asking about other's side effects. What finally got me back to feeling normal and eating again was changing my med from p.m. to a.m. with food. I also alternate my dose 100 mg 1 day, 200 mg next day, then 100 mg, etc. My doctor had never thought of that dosing and after I told him what I did for myself (based on another member's input) he is now using it for others he's treating. I haven't had any nausea now for a very long time. My main side effects are trouble falling asleep, nails that shred just looking at them, erratic bowel movements (some constipation, very irregular schedule), and continued weight loss. My hair is finer now but I don't know if that's the med or past chemo treatments (one round in 2016 and another in 2018). My last CT scan was very encouraging (no new growth and what was there is gone or shrinking). All my blood work has remained very good and my CA125 is 12-14. I just submitted an application with Teraso for assistance with copay. Not sure what changed because in 2018 my insurance (Aetna) paid it 100% ($15,000/month is what was on my bill)! In 2019 I'm having to pay about $125/month copay. I pray your symptoms are non-existent. Everyone seems to have different side-effects. It's all over the place!

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ingrid48

Hello kittens and lobster

Sorry for late reply..

Had some family issues..

To kittens I hope my private email response has helped you.

To lobster

I agree the side effects for me too are all over the place however I’ve been a bit lucky for me they have not been too bad except for bad constipation and insomnia .

For those I take daily stool softener and melatonin but they only help sometimes.

Unfortunately I’m also dealing with some family stress, issued in my younger son marriage...2 small children, I adore.., it feels worse than my cancer...

Out of my control

And no one to talk to..

God bless

Take care

Ingrid

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kittens2019

Hi Ingrid,

Sorry to hear of your younger son’s marital issues. I will pray for them.

How are you feeling?

I will order the zejula on Monday .....from a Michigan pharmacy.

I’m praying my side effects won’t be bad.

Blessings to you.

Mary

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