Hi Ladies went back to my oncologist to day I'm still so fatigued from the trial drug, I spent the last 2 weeks in bed most of the day, my 125 is up 173 and she had a look at the latest scan there is a new spot on my adrenal gland just above the kidney ,has any one had experience with this, my oncologist said that it's not common with ovarian cancer.
I'm so tired that I don't want treatment at the moment and she agrees so will look at chemo in about 3 weeks. I need to give my body and my sprite rest before I continue.
Thank you for any information ladies Take care Lorraine xx
C125 Results after last Chemo
Update rising Ca125 on Niraparib
A little positive boost
Hi Lorraine,
Yes, your sprite should definitely have a rest! No, sorry, I just couldn't help that. I don't know which is worse, pain or fatigue. Well, I suppose having both is worst.
I hope you find someone who has similar to you, it's hard to hear such bad news.
I don't have what you do but I have had issues with fatigue. It was once bad enough that getting out of bed was an effort. After 3 weeks of begging anyone who would listen for help my Onc nurse finally admitted that my haemoglobin was low! She & Onc said it was not very low and they wouldn't normally give a transfusion at my level but they arranged for me to have a unit of blood and the improvement was almost instantaneous!
Even if they have said your bloods are ok get a copy of the printout, even if you have to fill in a form for it (I don't know if you get this automatically in Australia).
Even if they ARE ok ask if blood might give you the boost you need.
Otherwise keep a diary of your fatigue if you're not doing it already. Maybe from 0 - 10, and fill out a fatigue form from the internet, one is called the 'Brief Fatigue Inventory', and take it/them along to your next consultation so they can see how bad it's been, so they deal with the fatigue as well as the cancer.
I wish you the best of luck and send lots of hugs, hugs from my sprite too, she is a big help to me!!!!!! xxx
Hi Irisi, Fatigue is hard like you I sent most of the last 2 weeks in bed It took all my energy to shower, to-day I went and had the IP port out that will make it easier , I've been trying to eat but have no appetite at the moment so my husband has been making juices and shakes, today I feel a bit better managed to stay out of bed all day and when I got back from having the port out even make some lunch for husband, he's been so good doing all the cooking and washing.
For Easter we are hoping to go up the coast my husbands mothers turns 90 and all the family will be there, then when we get back I'll be ready for treatment.
Thank you again for your advice take care look arfter yourself..Lorraine xx💙💙
I hope your Eater plans aren't interrupted. Be kind to yourself, Lorraine, and I hope others are too xxx
Hi Iris. I'm still feeling fatigued😒 but my husband is so looking forward to seeing his family I don't want to disappoint him, it a 6 hour drive from home to Queensland hopefully I can sleep some.
I'm sure it will do me some good to get away also. I hope your treatment is going ok and side effect are minimal
Take care my friend Lorraine xx💙
Thank you- make sure you take every possible comfort to help you sleep on the journey xx