ICOB 8B

[Madmolly]

Finishing trials I have only one more treatment of avastin due in M arch after 15 months. Has anyone else been on this trial and how did the feel when it came to an end. I am feeling a bi anxious and I thought I would be pleased having no more treatment. MadMolly

[OvacomeSupport Partner My Ovacome Team]

Hello Madmolly

Thank you for your post. It can be an anxious time reaching the end of treatment, and I'm sorry to hear that you're finding it difficult at the moment.

You can watch the recording of a webinar that we did with Dr Jo Ashcroft, Macmillan clinical psychologist on managing anxiety after treatment ends and coping with fear of recurrence at ovacome.org.uk/webinar-reco...

We also have a guide to coping with anxiety, which you can find at ovacome.org.uk/coping-with-...

We're here to support you, so please get in touch with our Support Service on 0800 008 7054 or at [e-mail] if there's something that we can help with or if it would help to talk anything through.

Best wishes

Julia

Ovacome Support

[Madmolly in reply to OvacomeSupport]

Thank you for giving me these contact details it is much appteciated

[Irisisme]

Hi Madmolly,

I felt very anxious too , when my time on Avastin came to an end. I had had lots of attention and suddenly it stopped! It was odd and I felt let down. I read as much as I could about ending treatment and discovered that the anxiety was very common.

I stayed in touch via this site (many on treatment like to hear from those who have ‘come out the other side’).

I am about to start treatment again but I’ve had 2 good years. I hope you have longer but you will always be a ‘Teal Sister’ and maybe will be able to get involved with a charity (but you will feel fatigued still for a while so don’t over-do things).

I hope tou have no lasting effects but it is possible you may have some aches & pains still (I did). Just be gentle with yourself and take care.

Good Luck 🍀

Iris x

[Madmolly in reply to Irisisme]

Thank you for your reply and the information you have given me. I did wonder what to expect whether I would still be fatigued and a bit of pain. Hoping to still be around for a while

[Cropcrop]

Hiya Madmolly, I totally understand how you feel, I took part in the ICON8 trial in 2014, the fantastic upside to taking part in a trial is the superb care and extra monitoring you get + you’re helping with research which will help others with this rubbish disease, the downside is that when treatment finishes you suddenly feel like you’ve been abandoned and let loose and your routine is changed from being in that ‘safe space’ to suddenly not being there. The care and monitoring doesn’t stop once the treatment ends, I’m still being monitored regularly and am on six monthly checks nearly 7 years on. I promise that you will get used to this new way of doing things just like you got used to the chemo routine and you’ll still have the comfort of knowing your team are just a phone call away if you have any worries + you’ve got us lot to help you through this transition. Well done and thank you for taking part in the trial and finishing the chemo. Stay safe and well lovely ❤️xx Jane

[Madmolly in reply to Cropcrop]

Hi Jane so good to hear from you with some reassurance. As stated my last avastin is next week. I did however fail to mention that since my op in February last year my first scan showed I was ned. I was diagnosed with oc stage 4 B or c However I felt unable to enjoy bei ng ned as severe joint pain in ankles and knees from avastin and now worry it will come back before I I have time to enjoy it. We're you in remission for 7 years since op and what was your diagnosis. I am glad of course that I will be monitored for that length of time. If it comes back do you go on the same format as before. I should mention that I am 74 this month and have kept excellent health. Felt I've rambled a bit

[Cropcrop in reply to Madmolly]

Hiya, I was diagnosed stage 1c3 clear cell carcinoma in the left ovary with the added delight of hypercalcaemia and a pulmonary embolism, I had my surgery on 3.7.14 followed, once I’d recovered from surgery a wee bit, by 18 weeks of carboplatin/taxol and have been lucky to be NED since. My chemo buddy, now good friend, who I met on the trial was diagnosed stage 4 around the same time and is also still NED. I’m 66, if I have a recurrence I don’t know what the regime would be but I’d certainly go with it. Prior to my diagnosis I was really fit and healthy and still try to be as fit and healthy as possible.

It’s such a rubbish rollercoaster we’ve been on and I don’t feel it ever really stops running completely and that we end up with a new mindset that leaves that awful niggle always in the background and we tend to possibly overthink things and suspect that anything not ‘normal’, whatever that may be, is attributed to our cancer when often it’s nothing to do with it at all and quite innocuous.

It takes some time to come to terms with what’s happened to us but it’s so important we remain body aware and that we have to try to embrace our NED status.

You’ve certainly not rambled it’s so good we’re able to check in into this forum and ask questions and compare symptoms and generally support each other as we all go along. I hope you’re joint pain eases very soon so you’re able to enjoy your NED.

Take lots of care, love and virtual hugs ❤️xx Jane

[Madmolly in reply to Cropcrop]

Thank you for your reply feel mentally better having read about yourself and friend as I think it makes a difference what your diagnosis is

[Sw21]

Hi MadMolly,I was on a similar trial in U.S. It is strange, after 22 cycles, to be done. Felt kind of anticlimactic. Now what? I was always getting ready for chemo or recovering, for 16 months. I even missed the chemo nurses, and lab tech and radiology tech, you get so used to seeing them and chatting. Guess we have to find a new normal. I’m 1 1/2 yr out now. Still have problems from treatment and surgery, but thankfully no recurrence so far. Hope you get on well. Stephanie

[Madmolly in reply to Sw21]

Thank you Stephanie for sharing your experience with me I will just have to find my own coping strategy round this. See you have been in remission for 1and half years can I ask what your diagnosis is. Thank you from Scotland

[Sw21 in reply to Madmolly]

Stage 3b endometrioid ovarian cancer, grade 2.

[Madmolly]

Thanks hope you continue to keep good. Massive hugs from here in Scotland 🌟