Normal/not normal?

[Newbery3]

Just a question? I'm back worrying about little niggling aches in my pelvis, and I'm peeing again in the night about 3 times. My Ca-125 is still at 7. I'm also getting really strange brain fog where I feel really heavy headed! I've got 2 more avastin to go and I'm on lynpraza still. I haven't had a scan since last May and haven't seen my oncologist since a year last September, I just get phone calls off pharmacy to check up and send out more lynpraza every 8 weeks. Anyway anyone else got these niggles of uncomfortable aches? Thanks xxx

[SuffolkJen]

Hi Newbery3

I’ve literally just come home from having my 4 month gynae check up.

I told the consultant that 3 weeks ago I had quite severe pelvic abdominal pain for about 3 days that I was quite concerned about, but has since disappeared.

She told me that anything that continues for 3 weeks to get in touch with her and she would see me as an emergency.

Take care xx Jen

[Newbery3 in reply to SuffolkJen]

I haven't seen my oncologist since a year last November, I don't get check ups 🤔 I'm in Wales. I'm going to ring Monday to see if I can get an appointment and get a check up x

[SuffolkJen in reply to Newbery3]

Oh wow! Yes try to get an appointment hopefully it’ll put your mind at ease. Good thing is your CA125 is low 👍🏻- good luck x

[delia2 in reply to Newbery3]

I don’t understand why you don’t get checkups every three months when you’re on Lynparza and Avastin? That doesn’t seem right. Does the consultant look at your bloods and give you reports? If you have these symptoms you should have a scan. I hope it’s just side effects.

[Newbery3 in reply to delia2]

I just got over the phone appointments with the pharmacist every 8 weeks, I was every 4 weeks. She looks at my bloods, asks questions, and that's it! I haven't spoken to my oncologist since I don't know when 🤷‍♀️ I'm going to ask for an appointment x

[Tealgirl7]

Happy to see your post. I have been following you as I am on niraparib and avastin..Sorry to hear you are worried. Do they do a scan when you finish the avastin.

I am in a study but not sure how long I am going to take the avastin. I have blood results every 3 weeks and CT scan every eight.

You will probably feel better if you get in touch with your oncologist and talk to her.

Thinking of you

[Newbery3 in reply to Tealgirl7]

Thank you, yes I think I will get in touch. My last avastin I'd April 2nd and I will have had 22 doses, not sure if I get a scan after so I'll ring Monday and get the ball rolling . Hope you're well x

[Lizchips]

After chemo I felt pretty good. My chemo was in 2014. Though recently my neuropathy in my hands and feet has been much worse. I was getting nerve tingling my entire body after chemo but that has calmed me. Best wishes, Liz

[Katmal-UK]

speak with yr team but be mindful Lynparza can cause water infections . Make sure you aren’t getting dehydrated. Good luck x

K.

[Newbery3 in reply to Katmal-UK]

Think you've hit the nail on the head there! I'm ringing gp Monday to see if it's a UTI x

[Katmal-UK in reply to Newbery3]

Something which will help, won’t hurt, in the meantime get Potassium Citrate mixture. You can get it in liquid form or powder form from a pharmacist. It works quick. X

[Newbery3 in reply to Katmal-UK]

Brilliant x

[Leniko]

start demanding check ups by the doctor at much more frequent intervals. That’s too long to go without seeing the doc

[Newbery3 in reply to Leniko]

Yes I'm still going to ask for a check up x

[SopSinger]

Yes, definitely ask for a check-up or at least a phone call from your consultant. Do you have a CNS (clinical nurse specialist)? If so, give her a call and see if she can help, she might be better at identifying side effects from the medication and getting you seen quickly if she thinks the consultant needs to see you. Hope you feel better soon!

[Newbery3 in reply to SopSinger]

The last 3 times I've left a message with the CNS, and this was over a year ago, she never returned my calls! I gave up on that. But I do get help from the emergency line, and the nurses at the chemo unit are great. I will definitely ask for an appointment with my oncologist though now. X