Need advice ladies.

[Newbery3]

Hi all, OK so I had my full debulking in September, last chemo Nov 1st with avastin and now on avastin and lynpraza 400mg. I saw oncologist October and over the phone November, since then over the phone appointments every 3 weeks and just realised on last appointment that I was speaking to a pharmacists 🤔 anyway question is I'm getting up to pee about 4 times a night between 11pm and 8 am and I have a funny feeling in my right side, not a pain but sometimes an ache or fluttering type feeling, I have back ache and am seeing a physio for that but I just wonder if I should ask for a scan? I rang the oncologist secretary this morning and she is going to ask cns nurse to ring me, I've rang this nurse twice before and left a message and never had a call back! Am I being paranoid about needing a scan? My ca125 was at 7 3weeks back and my bloods and urine are 🙂 👌 feel like I'm over thinking! X

[Lyndy]

Hello Newbery3, I think your ca125 is so low (as long as that’s a good indicator for you) that you can be confident this is unlikely to be recurrence. But there are other things it could be (adhesions, side effects from maintenance treatment etc) so trust your gut and ask them to investigate xx

[Newbery3 in reply to Lyndy]

Thank you lyndy for your reply 😊 yes I think my ca125 is a good marker and I don't really want a scan as it's not good for us, just think I need to talk through it all with them but as of yet nobody has returned my call 🤔 I will wait til lunch time tomorrow and ring again x

[Riverflo]

Hi Newbery3,

I would certainly want to speak to an actual oncologist, if only to talk through symptoms and put your mind at rest. Because there is nothing more stressful guessing.

It's different here in Spain, there is no CNS to talk to but at least I have a face to face with my onc every 4-5 weeks while on watch and wait. I hope you can speak with yours soon.

Best wishes, Martine xx

[Newbery3]

Thank you martine, I'm still waiting for a call back! I'm in Wales and it's very slow to get diagnosis and treatment even, I waited 10 weeks to start mine last year. I will ring again lunch time if I haven't heard anything. I just want a chat as I'm probably over thinking. X Rhian

[Shazwooly]

hi there, I was on avastin but not the other drug. I ached in every joint could barely get out of bed couldn’t even fasten my bra. I had a bone scan which was all clear, and referred to a rheumatologist who found a little bit of wear and tear in one of my shoulders but nothing much. I took about 12 months after finishing the avastin that I felt fine again. After reading articles and speaking to a friend who is a GP I believe it was the avastin that caused the joint pain as I’m perfectly fine now in that respect. I can’t comment on the other issues.

Good luck and take care

[Newbery3 in reply to Shazwooly]

Yes, I think you're right. There are so many side effects. I just can't work out someday what's causing what! I've spoken to the cns now and she thinks all is well but may have a pro lapse bladder🤔 they are sending me for a scan anyway just to be safe. Thank you 😊 Rhian x