Last line of treatment(most likely)

[Giedre]

I’ve just been told that, most likely, Etoposide (part of the Van der Berg regimen) will be my last line of treatment.

My head is spinning out of desperation. I’m in UCLH Macmillan Cancer Centre and thinking of getting second opinion.

But how? And is it worth?

I’m from Lithuania. My parents are there, worried. I’m in London alone and, most of all, afraid to make any wrong decisions.

Also, thinking whether or/and when to start packing my bags to Lithuania from where I will set off for my last journey.

I’m 42, was diagnosed with stage 3c OC in 2015 and had many chemos.

Thank you for any words anyone might find to say/write to me.

Giedre

[Newbie_2020]

Please don't despair. Of course it is worth it and you are entitled to a second opinion. Here is a link that explains about it. healthunlocked.com/ovacome/...

Where to go and still be in London? it is either the Royal Marsden or Hammersmith Hospital. Other may chip in but these are the two places that I could think of.

[Seasun36-uk]

Hello Gierdre,

That’s something we all don’t want to hear. UCLH has a good reputation.

What about the Marsden or Hammersmith? Is surgery or radiotherapy an option? Can you speak to someone at a Maggie’s Centre or to Anna on Ovacome? Could your parents come here to visit you?

Wishing you wisdom as you think through the options Gierdre, and sending love xoxo 🌺🌷❣️

[Caleda4]

Hello Giedre,

I was sorry to read of your situation,which of course is extremely worrying for you.

It is always worth getting a second opinion, Dr Christina Fotopoulou at Queen Charlottes Hospital in Chelsea would be worth a try. I have no personal experience of her,but there are many ladies on here that have recommended her in the past,so please do not give up yet.

I wish you luck whatever your decision.

Caleda x

[Giedre in reply to Caleda4]

Thank you 🙏

[Litchick]

Hello Giedre,

I am sorry I have no additional suggestions about where you might seek a second opinion.

However I just wanted you to know that I am wishing you all the very best and sending you a virtual hug as you decide what is best.

Jan. x

[Giedre in reply to Litchick]

Thank you🙏

[Lolotango]

Hopefully you will go for a second opinion. This disease is so unpredictable and different for all who have. Try to stay strong and positive. Saying prayers

[Katmal-UK]

Hi Gierdre Please ask for a second opinion. It's definitely worth it. Please let us know how you get on. Big Hug. Kathy xx

[Giedre in reply to Katmal-UK]

Thank you, for the reply. Just who and where to ask for a second opinion? Could you recomend someone good? I am in London. I am BRCA negative. Many many thanks! You, yourself have been through so much... you’re so strong.

[Katmal-UK in reply to Giedre]

Hi. I'd suggest you contact PAL at your hospital (Patient Liaison) . That's who I went through when I wanted to change Consultants. If's it's not them they can hopefully point you in the right direction. Failing that ring MacMillan or Ovacome. Good luck. Big Hug xx Kathy xx

[Giedre in reply to Katmal-UK]

Thank you very much for the advice. Patient Liaison is for complains as far as I can understand. Will they be able to offer a good doctor?

I am so lost. Because they said the more chemo I’m given the more the disease becomes resistant to it.

[Katmal-UK in reply to Giedre]

PALS do deal with complaints but also should be able to help you, at least they did at the Cancer Centre I was at. Ring MacMillan or Ovacome. I hope you find the help/advice you need xx Kathy xx

[Giedre in reply to Katmal-UK]

Thank you very much!

[SUE7777]

I am so sorry to hear this. As well as seeking a 2nd opinion have you discussed any clinical trials you might be able to get involved in. All the very best. Sue xxx

[Giedre in reply to SUE7777]

I am not suitable for trials as the consultant put it - my state is a bit wobbly, swollen leg, blood clot. Thank you! Best of all.

[SUE7777 in reply to Giedre]

So sorry to hear that. All the very best. Sue xx

[Giedre in reply to Giedre]

Thank you🙏

[Hidden]

Hi Giedre,

I’m so sorry for all you’re going through. It is really difficult to be lacking support at this time. I’m from Ireland so I can’t offer advice about London but I really hope you’ll take all the excellent advice you’ve been offered here.

Look for support form all the cancer support services and get talking to as many of them as possible on the phone. You should find at least one person that you like and that you can chat to regularly.

I hope that someone from your family can visit you soon.

Could you get in touch with cancer support services in Lithuania? It might be a comfort to talk to someone in your own language. You definitely need to talk to someone and get support.

Keep in touch with us here.

Anne 🤗

[Giedre in reply to Hidden]

Thank you, WoolyHat. I find extremely hard to talk on the phone especially to people I don’t know. Thank you, I might try thought - what a challenge

[January-2016-UK]

It's a very good idea to get a second opinion. A fresh pair of eyes looking at your cancer history and treatment history may have other suggestions, or even a trial. Have UCLH suggested a trial to you, or are their cancer trials still closed to new recruitment while they concentrate on COVID-19 trials? I would suggest the Royal Marsden as many of their cancer trials have reopened (I am participating on one of their trials).

[Giedre in reply to January-2016-UK]

Thank you, dear. No, they didn’t suggest trials. Because I’m not stable - I had blood clot, swollen leg.

[Giedre in reply to January-2016-UK]

Perhaps you know a consultant in Royal Marsden? Thank you!

[January-2016-UK in reply to Giedre]

I am under Dr Susana Banerjee for my trial. I think it maybe wiser to ask your oncologist who in their opinion it would be best to seek a second opinion, taking into account your medical history, if trials are not open to you. There's no need to be reluctant to ask your current oncologist, they are used to referring patients for a second opinion. How long is your treatment with Etoposide scheduled to last?

Another option might be to seek a second opinion privately which may speed up matters, in case Etoposide doesn't work as planned. They cost in the region of about £300 and a number of members on this forum have been pleased with the suggestions made. There are a number of clinics in central London offering this service.

[Giedre in reply to January-2016-UK]

Thank you for your reply! I’ve already asked for a referal to Queens Charlotte and Chelsea hospital. Not sure about etoposide - probably I’ll take as long as it works. As maintenance.

The consultant said I don’t qualify for trials because of swollen leg, being prone to blod clots and nefrostomy in my kidney. The latter I still expect to be removed.

[SheilaAD]

So sorry to hear this , I too have been told nothing else can be done and have been given Etoposide as a last resort , consultant says he didn’t hold much confidence in it working! Why give it me then. My Macmillan nurse is more like the angel of death than helpful. 🙁

[Giedre in reply to SheilaAD]

Hi Dicie. How are you? Where are you being treated?

I am so desperate for treatment now. Because I think the nasty cells are growing, I’m in pain. I hate painkillers, the opioids make me sleepy and constipated.

I wonder if anyone attended medical cannabis clinic?

I saw a video from ITV’s This Morning where a women got rid of ovaran cancer with medical cannabis.