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
Written by
lorraine71-Australia
To view profiles and participate in discussions please or .
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💙💙
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
You're a hero for going on that trial and sticking it out as long as you did. You deserve a little break before starting chemo again. You've had good results with caelyx in the past, so focus on that to get you through in the meantime.
HI Vicki, I must admit it was the hardest drug so far I'll be glad to go back on Cealyx, not too many ladies would say that, 3 weeks with out treatment or appointments plus a little holiday sound great. Who know when I go back on chemo the trial drug may still help.
Sorry Lorraine I do not have any experience of this either. Do the medics think it is contributing to your fatigue?
Any way I just wanted to say that I am sure you are doing the right thing for you in delaying treatment. I agree you have to be in the “right place” emotionally and psychologically before committing to chemo.
Thank you Juliax, My oncologist looked at the scan and just said there is a new spot on the Adrenal gland, when I come back I'm sure she will order a scan before I start treatment.
I had my IP port out to day and feel a bit better manage to stay out of bed.
Chemo has been a bit part of my last 3 1/2 years before going on the trial I was on my 5th chemo and this is the lowest I've been emotionally and psychologically and as you said I need to be in the "right place " then I'll bounce back.
Hope you have a wonderful break over Easter and it helps you to recuperate I know how much better I am feeling after a break Hopefully the trial has worked some magic and your chemo will kick the beast in the butt xoxo 😘 Cathy
Hi Cathy, Thank you this break is great just have to stop wondering what is happening inside I know my 125 is going up this beast plays with your head also.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Stage 4a cancer returned. An update and a question
Update rising Ca125 on Niraparib
Avastin
Another up-date on my daughter
