No more treatment due to Coronavirus

[Gemimablackvelvet]

I’ve had stage 3 OC since early 2018. treatment started late May. Hysterectomy Sept 2018 plus carboplatin for 6 months I had a recurrence 6/7 months later then carbo/Caelyx for 6 months. 3 very large tumours after my 3 month CT scan. After 3 more months the CT scan revealed a shrinkage of more than half but still 3 large tumours. I started Nirapabib 6 weeks later but after 2 weeks my platelets dropped to 9. Rushed to EMU and received a blood transfusion. I was taken off Niraparib immediately. Platelets rose to 49 but my oncologist rand to say my appointment for the week after had been deferred for 2 weeks and no more treatment for the foreseeable future because of low immunity and the Coronavirus. I’m now told the appointment maybe a phone appointment. I was pinning my hopes on starting Niraparib again on a lower dose but the answer is no.even before any blood tests. I guess we are all going through the same misery and can see no light at the end of the tunnel. I’m trying my best to be upbeat but it’s not working . I just want to cry and cry. My husband and daughter are trying all they can to uplift me. Even suggesting go it to Chatsworth House in our motorhome just a short drive from home. We wouldn’t be getting out of course just pottering in the van and people watching. My daughter, husband and my granddaughter would take their own car and park next to us. I’m now too scared to even do that after the news today about further dangers of the virus. Has anyone else had a similar experience and what can we do about it if anything. I wish you all well and pray we can all get back to normal ASAP. Love Angela XX

[delia2]

Hi Angela. I can’t believe they’re just stopping any treatment. What about other chemo or a trial? My cancer center in the US is proceeding as usual just no visitors.

[Hidden]

I am so sorry you are having to go through this, I understand you doctors not wanting to put you at risk, but my understanding is a low platelet count can be treated with drugs once resolved you could start treatment again. I think you need to quiz your team and maybe get a second opinion. Good luck 😉 x

[Gemimablackvelvet in reply to Hidden]

Thank you for your reply Lyn. I’ve tried to push for further treatment when my platelets have risen more but my appointment has been deferred another 2 weeks and probably a telephone appointment so it looks like I won’t get any blood tests even unless the GP can do it.

I will keep pushing but don’t want to become a nuisance. The oncologist has said they don’t want to put us in danger by coming into the hospital and lowering my/our immune system even further.

The future is daunting

My love and best wishes to you.

Angela xx

[sticky3006 in reply to Gemimablackvelvet]

Hello Gemimablackvelvet. I would become a nuisance (I have!) as we've got nothing to lose. I would phone on Monday and say you'd definitely like a face to face appointment and also a second opinion if they say no further treatment. You're early on in your OC journey and although they are trying to protect you from CV and infection etc. it seems a bit unfair that they should now not actively treat you. I'd go for it on Monday and be polite but assertive! Take care,

sticky3006

[Vicx1977]

Hi Angela.

I posted yesterday about the same with my mum, my heart goes out to you and your family...its just heartbreaking. I've asked for a second opinion elsewhere to see if there is anything else that can be done in the meanwhile as they have literally just given my mum an appt for July and said see you then! She has a high grade carcinosarcoma which,like your tumours, is growing, its terrifying,

Take good care of yourself and if you can go out in your motor home to chatsworth house it would probably do you the world of good! My mum and dad have been going in their car to the coast with their flask of coffee and just watching the world go by from their car.

Stay safe,

Vickie x

[Gemimablackvelvet in reply to Vicx1977]

Oh Vicky thank you for replying. Yes I did see your distressing post yesterday and felt very concerned for your Mum. We haven’t been out in the car or motorhome yet but I may change my mind. If your mum can do it so can I. I’ve been too scared to go out at all.

Love to you and your Mum

Love Angela xx

[Lockygill in reply to Gemimablackvelvet]

I would go out in the motorhome. You won’t be mixing with anyone and it’s a change of scene. Sometimes we just go for a drive and park up in ours, have a cup of tea and watch the world go by x

[juliamillen]

So sorry to hear your treatment had to be stopped. Thinking of you and hope you make it to Chatsworth. It is so lovely there. I am savouring my last few days with my family until I go home to an empty house and splendid isolation for a few months. Not looking forward to being on my own 24/7.

Hope this forum will keep me sane.

[Gemimablackvelvet in reply to juliamillen]

I really cannot imagine how people can face this crisis alone Julia. This site will certainly help you through it all. You’ll never be alone if you keep watching and posting. I have decided to go to Chatsworth and preparing now. Love and best wishes to you

Angela xx

[juliamillen in reply to Gemimablackvelvet]

Have a great time. The weather down south is wonderful I hope it is the same with you.

[Gemimablackvelvet in reply to juliamillen]

Thank you Julia xxx

[ruthg55]

Please be a NUISANCE & push. You & your family deserve it. Take that trip in your motor home - it’s just good to get out of the house. Love & best wishes to you. Ruth xx

[Frenchhouse3]

Hi there, I agree with what many of the other ladies are saying, insist that you have a face to face appointment! You deserve to be given a chance to get back on to treatment for your OC. I know it’s hard arguing with the experts but it is your health at stake.

Wishing you all the best and sending love. Denise xxx

[thomas62]

Hi Angela, I'm really feeling for you! I would definitely ask (demand) a face-to-face appointment - I don't feel that telephone consults are the best for us - and risk aversion strategies can be put in place at the hospital. Are you under the Christie!! I am and have a review appointment in 2.1/2 weeks time - I hope they don't cancel or ask for a tele consult.-my mind goes blank at these times. Please update us! Enjoy Chatsworth. Gwen Xx

[Gemimablackvelvet in reply to thomas62]

Decided not to go to Chatsworth anyway . Chatsworth decided to close everything except the car park. My little family came over from across the road with lots of goodies and flowers and sat on the balcony with the patio door open. We sat well back in the lounge. It was very nice to say the least.

Love and best wishes

Angela xx

[thomas62 in reply to Gemimablackvelvet]

Xx Gwen

[Luci22]

Hi, that seems so unfair that they would stop treatment. I can't imagine how they couldn't put in place some proper safety protocols for you. You can wear a mask and gloves and carry sanitizer.

Is treatment being put off for all cancer patients then?

Try again, advocate for yourself and be a sqeeky wheel. Good luck.

[OvacomeSupport Partner My Ovacome Team in reply to Luci22]

Hi Luci22

Treatment isn't being put off for all cancer patients. Decisions are being made about each person's treatment individually.

The One Cancer Voice group of charities has developed some advice about Coronavirus for people affected by cancer. You can find it at ovacome.org.uk/Handlers/Dow...

If there's anything that we can help with, please contact our Support Service. We're now offering a new remote support service called Staying Connected. You can find more information and register for our online sessions at ovacome.org.uk/staying-conn...

Best wishes

Julia (Support Services Officer)

[Luci22]

Thank you for these links and information.

[Kempyhillbilly]

I feel for you - my oncologist has told me that trials are not taking on any new patients because of the virus and that scares me. Keep strong and when this blows over, things will return to normal. xx