Hope this finds you in fighting spirits and in the best of health.
As you know, I have been feeling as close to 100% as I ever expected to be again, on Niraparib.
However, for some reason, I have not been feeling so perky the last two weeks. I felt as if I might have a virus or something: Head achy, more queasiness again and tiring easily again.
All the same, naturally, it made me nervous about my appointment yesterday. Afraid that I was finally being impacted by the usual side effects others have experienced.
BUT, all my bloods were fine, even slightly better than last time!
Blood sugar level totally normal. So, no explanation for increased thirst.
Magnesium at the lowest normal (70) which I had asked to be tested just because I started getting more leg cramps again and I still have loads of sachets left from first line.
Still, just as a niggle, my CA-125 went from 15 to 21.
I didn’t like that. I wanted it to be going down already to single digits. But: Maybe I do have a virus and that would explain it.
My Oncologist was not concerned, but of course, I was.
Turned out, they do not do a regular CT scan after 3 months, but I asked for one and she agreed.
I felt that she was concerned that I might freak out if it showed any growth of the tiny, less than 2 mm nodules that remained after 2nd line.
But I have to know what’s going on or I WILL freak out, especially if my CA-125 keeps rising.
I feel slightly better today, so maybe my virus is passing.
And off I go into my third month. Fingers crossed everything gets even better and we all enjoy better health and better treatments if we relapse.
Hugs to all,
Laura
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Lindaura
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Hi, Laura! We must be twins! When I first started on Zejula last October my CA125 was 15. By end of January it shot up to 21 and then up to 35 by March. While this isn't a huge jump in numbers...I worried because I recurred when my CA was 22. Had clear scan. They had me alternate from 100mg once a day to 200mg every other day. I was pretty worried just walking around with CA35. I decided to do a detox/cleanse for 6 weeks. Alot of my intestinal inflammation went down. I was taking probiotics every day. Wasn't sure if this was going to help, but, I knew I had to elimate carbs and suger (within reason) from my diet. When I went back end of April for bloods, My CA went down to 21. I will take it!
My platelets went down but they don't seem concerned. I began to feel fatigued a couple of weeks ago (my hemoglobin is always low) so I started with B12 and the rest of supplements I could swallow. I'm feeling much better, but, always still nervous. I go in two weeks for bloods.
Your body will get use to the Zejula and you will be back to your old self in no time. Just rest when you can, drink tons of water and stay as positive as you always are.
Laura, you are so hilarious! You will do this. Baby steps. I have never followed a diet or excercise program. I’m a carbaholic. I don’t know what went off in my brain(probably fear) but I’m able to manage my carb and sugar intake. However, there is a limit...weekends are all about pizza, pasta and more! We’re only human! Enjoy , lovely lady!!
It seems you are doing really well. I guess when you have even a touch of a virus it can bring you down.
As you are tolerating the meds so well, keep going. Remember your 125 is still well within normal range and l think this has always been an indicator for you. This terrible disease is like walking on a slippery tight rope. Hope all goes well with the ct scan and look forward to another update.
Sorry your anxiety has increased with the pesky Ca125 level creeping up slightly! Sometimes makes me wonder if it’s better not knowing until the onc thinks we need to know but I’m a bit of a control freak and want to know the ins and outs of everything!
I will keep everything crossed that you have had a virus and all settles down again soon as you seem to be doing so well on your PARP x
Keep positive and determined as you always are and I’m sure it will just be a blip x
Thank you for the update. Hope the slight ca125 increase turns out nothing. Let us know how you go with the scan. I am keeping my fingers crossed for you.
Sorry you are having these problems when you felt so well. Seems to be a condition of the disease that when you start to feel a bit better something knocks you back again.
Hope you get your scan very soon and that it is reassuring.
The worry is something that would be nice to get rid of (!) but we know too much. I have read of so many people with fluctuating ca125s on PARPs and many MANY of them see it go back down right after. You of course are doing all the right things and the fact that you feel better now, to me would mean that rise was due to whatever you may have had that is now past. I hope the scan and results are soon so you can go back to enjoying this wonderful feeling you have. Thinking of you Laura! oxox Judy
Hi Laura, I have been treating my cramps with magnesium for some time but have now found out that the bigger culprit is low calcium so it might be worth checking?
Pray you feel better quick..I’m going to be starting Zejula soon. Im waiting on paperwork to receive assistance with the cost. Seems to be taking forever. My ca went from 15 to 143. Bit of concern..I’m feeling good..had a scan and nothing showed..yet..fingers crossed..please update us when you receive more information. Stay strong! We all got this!
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Another CA-125 anxiety post
How long does it take for ca 125 to drop with caelyx/ carboplatin?
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