How's everyone doing out there? Updates please! Thinking of you!
Updates?: How's everyone doing out... - SHARE Ovarian Can...
Updates?
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Archeveritas
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Experiencing the different side effects from weekly single chemo versus 3 weekly combined chemo post hysterectomy for what turned out to be stage 3 low grade serous carcinoma . 16 more weeks to go. Picc line is effective if limiting with winter clothing. Early days but hoping things stay manageable in terms of anti sickness meds which seem good and hoping that lower doses more frequently mean the side effects are lessened while still having an effect on the cancer cells left .
Hoping all others are coping and finding ways to feel good right now.
I hope you only have 8 weeks to go! I did not do well with pic line. It kept getting clogged. Port worked so much better for me. Hope that side effects are not too bad. Thinking of you!
Had to have picc line replaced last week as it broke. Only 7 more to go! Sorry to hear about your problems and hope the port is being well behaved. Thinking of you too
Alex x
Diagnosed June 2018 with IIIC ovarian cancer. Had complete hyst, appendectomy, omentectomy. Got an IV port and did 16 weeks of 2-drug chemo. Just started a Phase 3 clinical trial with BID oral med and once monthly IV infusion. There's a 10% chance of getting all placebo meds. Otherwise may be getting Rucaparib and/or Nivolumab. One is a PARP Inhibitor, one is a check-point inhibitor. My hair has started to come back. I feel pretty normal at this point yet have been warned recurrence is inevitable.
Wow! Our stories are a bit similar as far as removal of the majority of our gut. I also had some large intestine and bladder removed along with hysterectomy, omentectomy. Had an illeostomy for 8 months. I wish you so much luck with the trial! All we can do is be grateful for each day and try to stay positive. It’s okay to sit on the pity pott once in a while too. Be good to yourself!
Unless someone has a crystal ball they can’t tell you whether or not you will recur. I know my doctors were thinking the same thing, but I’m a 13 year survivor with one recurrence early on and haven’t had any further treatments since November 2008.
How are you feeling lately?
I have been on Zejula 300mg once a night for 7 months now. All bloodwork is good.Last Catscan in Oct. was good.Small lesion in liver has been shrinking and becoming calcified.
I have stage 3 ovarian since 2013.BRCA negative. So far the only side effect I have on Zejula is dry mouth.
Hope everyone is doing good.
Is this a maintenance drug?
Yes Zejula is a maintenance PARP inhibitor. They called is targeted therapy. I'm also on it. I'm BRCA II positive with 1 recurrence.
Yes, PARP inhibitor.So far so good.
Lost job and now lost health insurance. Looking for a full time job with benefits. Want to move to San Antonio from Houston. House severely damaged Hurricane Harvey. No help from anyone yet. Still fighting side effects from chemo.
Kaki, Did you move? Did you get a new job with insurance? And most importantly, How are you feeling?
I fell December 28th and broke my right shoulder. Still hurting and swelling. No insurance is making it hard. Still need to find safe house in San Antonio and get a good job with benefits. Trying to clear things and get ready to pack, but need people to help. Only one arm is hard. Had to miss my follow up with gyn oncologist. Hopefully still cancer free. Thank you for asking.
You have a lot going on! Try to stay positive and take care of yourself. Everything will hopefully fall into place. Your health is the most important.
Well, I was diagnosed stage 3C December 2015. Did 18 weeks chemo Jan-May 2016 and was clear until Feb. 2018. Had to do 5 rounds of chemo 1x a month this year through July. Then started on Zejula in August. Zejula made me sicker than IV chemo ever did. Took about 2 months to get dosage right and acclimated to the drug. Saw my oncologist last week and CT shows nothing new, what was there is gone or significantly reduced and CA125 was 12. What a great Christmas present huh?!!
Absolutely! So glad to hear it!
Such good news for some of you. I started on Olaparib 2 months ago after my third recurrence of ovarian cancer this year. Had all the chemo drugs then Avastin for a year. This has been going on since2015. All of a sudden I developed mouth sores on my upper lip and severe swelling under my tongue. Magic mouthwash helped a little to numb the pain. So doctor took me off the pills as my renal functions were also out of balance. Anyone else had mouth problems with this drug or renal problems. I’m running out of options.
Its been a year without avastin and my tongue is still very sore.
