Avastin & Lymph Nodes

[Suziejasp]

Hi ladies,

I am looking for some advice for my mum.

Diagnosed 3c Primary Peritoneal in January 2021.

She has had chemo and successful debulking surgery back in July 2021.

She is currently taking Avastin and has been doing for 2 years now. She’s having to pay for it herself which is costing around 2k a month. Initially side effects weren’t too bad but she is really starting to struggle with aches & pains and losing teeth which is affecting quality of life.

ca125 goes up and down around the 500 mark for the past 2 years. Scans are showing 4 slightly enlarged lymph nodes which they are keeping an eye on but never any significant concerns.

Has anyone experienced similar ‘watch and waits’ with lymph nodes? Does anyone have experience of stopping Avastin when stable?

How can we be sure that the enlarged lymph nodes are even cancer without a biopsy?

She is starting to wonder if it’s the Avastin keeping her stable or whether to stop having it. Could the Avastin be causing the rise in ca125 and enlarged lymph nodes?

Sorry lots of questions, we are just desperate for answers to try to make an informed decision.

Thank you for taking the time to read it’s much appreciated.

[Weaves]

My diagnosis is also ppc. I ended up coming off Avastin early. I had it soon after my initial surgery & I think it was preventing internal healing. I felt so much better afterwards & had 4.5 yrs NED. Fast forward & I’m now on my 2nd reoccurrence. It’s in my para aortic & supra clavicle lymph nodes.

I have just had radiotherapy on the supra clavicle node & awaiting a scan to see if it’s been successful. If it’s elsewhere it’ll be chemo. If it’s just in the para aortic lymph node it’ll be more radiotherapy.

I’m also on Niraparib & have been since July. I’m only taking 100mg. The side effects are minimal.

I hope this may be of help.

[Suziejasp in reply to Weaves]

Thank you for your reply it’s really helpful. We hadn’t thought about radiotherapy so might be worth speaking to her consultant that.

[Saintgermain in reply to Suziejasp]

They can do a biopsy on the lymph node which will confirm if it’s the exact same type that was the case with me also a pet scan I have low grade tends to like the lymph nodes mine is in supraclavicular also it disappears and reappears I hope your radiation gets rid of them for good.

[OvacomeSupport Partner My Ovacome Team]

Dear Suziejasp

I am sorry to read that your mum is experiencing these side effects. I wonder if your mum has let her medical team know of her aches and pains and losing teeth?

We would always advise that side effects are raised and discussed with the medical team, so that they can advise on any changes to medication.

I have included a link to information about targeted therapies, including Avastin and its side effects, which I hope is useful: ovacome.org.uk/targeted-the...

Our Supportline is available Monday to Friday 10am - 5pm on 0800 008 5074 should you or your mum wish to talk anything through.

Best wishes

Dolores - Ovacome Support

[win_56]

My lymph nodes were getting enlarged. If they are cancerous then a PET scan would confirm as they would show up as red on scan.I had radiotherapy for my nodes and it was successful. I believe in UK they only do radiotherapy for a maximum of three nodes on scan - not sure if you in UK but your oncologist would confirm for you if so. Wishing you all the best going forward.