Zejula

[Sherryross]

Anyone on Zejula for BRCA negative ovarian cancer and had any positive results?

[malka210]

Wasn't a canadate for this drug. Hoping it works for you. Stay strong

[Sherryross in reply to malka210]

May I ask why weren't you a candidate?

[Sherryross in reply to Sherryross]

I didn't mean to send it and my next question was so what are you doing instead?

[malka210 in reply to malka210]

They took a biopsy and said my cancer would not respond to

This treatment. I am on avastin low dose every three weeks it

Has worked very effectively but lots of side effects fatigue. Hope

The pill works for you. Stay strong.

Millie

[Sherryross in reply to malka210]

Happy for you. I was on avastin and doxil. Neither worked for me unfortunately

[malka210 in reply to Sherryross]

The drug companies are testing new medications and

Doing studies. Let me know if your scan shows any

Strinkage. Hang in there, wishing you wellness

Millie

[christaodell5]

I am 4 months in to Zejula. I did miss 2 weeks, twice in that time frame as I was being assessed for tolerance, mostly platelets. Currently, 6 solid weeks at 2 pill dose. So far, holding steady. Next check is not until December.

[journal in reply to christaodell5]

I thought you should be checked every month? mostly to ensure platelets, etc. are ok?

[Sherryross in reply to journal]

I thought they checked you twice a month

[Sherryross in reply to christaodell5]

Thank you so much for responding. How are you feeling?

[Sherryross in reply to christaodell5]

They scratched the Zejula. There's a new trial called entrectinib. Its recruiting only patients with the tumors that have the NTRK-1 gene. Rare but miraculously I have it! Apparently the NTRK has been implicated as the primary cause of the cancer. Feeling hopeful finally.

[christaodell5 in reply to Sherryross]

Great! Keep us posted. Praying for wonderful results ahead!

[Sherryross in reply to christaodell5]

Thank you so much. I will keep all posted

[brender in reply to Sherryross]

That is great news. I have a 2018 genetic counseling appt bc my oncologist doesn't believe the lab findings which make my gene mutation nf1 inconclusive. He prob thinks I am brca.

[mlbronk in reply to christaodell5]

I too have started Zejula last night my first dose before bed 2 pills I am not Brcaca

don't know how to spell that praying it works for all of us and gives us more time but quality life thanks for sharing

[Northrop in reply to christaodell5]

Hi Christaodell5,

So interested on how you are doing now while on Zejula. Does it cause you any sideffects? Still not sure that I will tolerate it. I have such a hard time with drugs. Chemo was really hard on me. Any thing you can tell me about your situation would be great. Look forward to hearing from you. Northrop

[christaodell5]

Well, I did skip many details. I initially started on full dose in May. I was being checked weekly, on for 3 weeks - going off for 2 weeks - restarting full dose - going 3 weeks and off 2 again, type thing. Off, only due to platelets dropping. Once I started at 2 pill dose, I was checked weekly x2, then monthly as the platelets were looking better.

My last check (post 1 month starting 2 pill dose) was the end of September and I am due again Monday. So far, so good. So yes, frequent blood checks are indicated until things behave.

Each of the 3 starts came with a nausea, headache, feeling bluck usually days 4-7. Then symptoms started waning. I am basically living life normal the past 4 weeks. I do feel a backache is associated with Zejula. Also, my endurance is NOT what is was. After about 4 hours of work, I am toast. But! I can work, which I missed, I'll take it!!

Praying all is going well for you, always praying for all of us living our new normal.

[Sherryross in reply to christaodell5]

God bless you and I wish you continued success. Thank you so very much for the reply.

[eileen_alberti in reply to christaodell5]

I started Zeluja [100mg, 3 a day, all at once] July 20, immediately couldn't sleep even with sleeping pill. Lost appetite at 3 days, broke out in rash on insteps and hands felt like I sandpapered them at about 1 week. Boy did those 2 burn. Off med. to wait for clearing, about 2 weeks, no shoes at all, the insteps burned awful. A few days into that I broke out with what doc thought was ringworm on the back of my leg. More creams to add to the regime. Started Zeluja again around mid-Aug. and platelets dropped to 11, went to hospital immediately from office for pack of platelets. Was having weekly blood test during entire time. After 6 weeks of ringworm treatment, off to dermatology for a biopsy. It showed that rash was caused by chemical reaction, also tested specifically for ringworm. It wasn't.

Had PET scan 2 weeks ago, showed mets to liver and blockage of ureter to rt. kidney. I'm famous for having med. reactions so always thought I would never do chemo. May be recalculating back to original decision. Today find out more about kidney thing, stint, other?

On the home front, still distracting myself with paint, flower planting, shell collection cleaning, and today's special, wash new sheets [bought the 1000 count on sale for $40] because I always wanted to know what was all the excitement about. I'm always 5-10 years behind on a fad and could never abide paying $800 for sheets. Tonight's the night. I punk out at about 3 hrs and must lay down and flatten belly. After about 1 1-2 hrs. back up but not with the same energy. Then there's the burnt toast segment, just give up and take a pain pill and veg.

So Christa, we just keep on plugging away doing the best of what we can. Work has always been my play. I love it.

Many blessings to all, Eileen

[christaodell5 in reply to eileen_alberti]

Thank goodness we can have a positive focus! Keeping you close in prayer.<3

[Sherryross in reply to eileen_alberti]

Reason I am worried is because I am pretty much the same way Eileen, if it weren't for bad luck Id have none at all. Always breakouts rashes weird stuff going on. Very fearful to try the Zejula, I can't lie

[brender in reply to Sherryross]

hi Sherry, well we all know Avastin doesn't work. I am BRCA neg and for maintenance I just started Zejula. You will get a rash. I have a leg one but it doesn't hurt or itch. My ca125 is in the normal range, so I took the initial blood draw and will take another on 10/31. Doc will not follow drug protocol of weekly draws, but I feel pretty good for the most part. Most survivors say that the platelets will go low. Please pray that mine don't cause I have had enough infections this year. Peace.

[Sherryross in reply to brender]

God bless you and good luck

[eileen_alberti in reply to Sherryross]

I think worry is information stored and sitting there trying to figure out how the info fits into a situation.

[eileen_alberti in reply to Sherryross]

Are u a redhead? I am and [well, in the past life under 45] have always had rashes, swell up from bug bites, bruise easily, weird stuff. Always the 1/10th of 1% group.

[Sherryross in reply to eileen_alberti]

No believe it or not I am a brown-haired Italian we just have the most screwed-up genetic family everyone has every illness known to man!

[eileen_alberti in reply to Sherryross]

I believe because u told me and I have life experience to support your story.

It still annoys me when I get the eyebrow, so now I look down my nose.

[Sherryross in reply to eileen_alberti]

What were you taking before Zejula?

[eileen_alberti in reply to Sherryross]

Carbo & taxol, failed due to HBP and severe muscle spasm around the bottom of rib cage and upper abdomen. Couldn't breathe and I like to.

[Sherryross in reply to eileen_alberti]

I had the carbo and taxol and they had to rush me to the hospital I was allergic to text all. I couldn't breathe either and I like to breathe myself LOL

[eileen_alberti in reply to Sherryross]

can I get personal? Did u have debilitating constipation also? No reply, too personal

[Sherryross in reply to eileen_alberti]

Never ends!!!

[eileen_alberti in reply to Sherryross]

Huh! Wonder what? Can't seem to get the help or answer. U? So far only thing is hot prune juice and milk-of-magnesia, then wait around feeling sick. Hope it happens in about 6 hrs.

[GwenHP in reply to eileen_alberti]

You might want to try smooth move - it's a tea you can get at the grocery store. I used to get wicked constipation when I was on chemo. When I recurred that was one of the quality of life issues I discussed with my doctor. I took both colace and senokot in addition to the prunes and metamucil. And I worked hard to stay well hydrated and walked a lot. The walking was necessary because with all the adhesions I have from the surgeries, my intestines needed the movement to help them do their job.

[Sherryross in reply to eileen_alberti]

My doctors told me about the prune juice and milk magnesia cocktail that doesn't work for me at all. Just a colon cleanse from a health food store it's the only thing that works like a charm. Like I mentioned before it is called Cleanse Now

[Sherryross in reply to Sherryross]

I take this all natural capsules called cleanse now you can only get it at the health food stores. Works like a charm but I do have to take it everyday period makes me completely regular and normal like the rest of the folks without cancer. LOL

[eileen_alberti]

Thank you for the prayer. I have a hard time praying for myself.

[Sherryross in reply to eileen_alberti]

So do I!

[Savage5]

I was diagnosed with stage 4 ovarian, cervical and uterine cancer in 2010.

I did carb/tax six treatments over about 9 months.

I had to have 3 blood and platelet transfusions during that time.

I was in remission for 4 and a half years.

About 2 years ago my cancer came back.

I had so many chemotherapy drugs and can't even remember them all.

But my oncologist limped me through 24 treatments over six months.

My ca124 was 285 when I had my first reoccurance 2 yrs ago.

It dropped to 26.

For almost 2 years I had received avastin every three weeks for almost 2 yrs.

My ca125 slowly kept going up little by little.

I became emmuned to avastin and my Ct scan showed 2 small tumors in my abdomen.

I've been taking zejula for almost 3 weeks now

I am hoping it will put me back in remission

But I don't get my next Ct scan for another 2 months.

I was wondering if zejula helped anyone or out them in remission.

I guess you could say I'm used to feeling crappy all the time

32 chemotherapy treatments over almost 2 yrs I'm sadly used to feeling like crap.

My prayers go out to all of you suffering from this trechous illness.

I'm hoping to hear zejula works.

I'm physically and emotionally spent

8 long years with ovarian cancer has worn me down

But I will never give up my fight for my life

I have so many family members and friends that need me

I fight for myself, my family and friends

Never give up, never surrender

Thanks in advance for any information on the results of zejula

Thank you, Ovarian Cancer Teal Warrior