Running Out of Time and Ideas

[Kouyate]

Hi allWell I was told in June that I have less than 12 months so off u pop! That's pretty much been it. I asked if there were any trials and was told they would refer me to Royal Marsden. Took 2 months before I was finally seen. I was screened, all looked good but there were no slots on the trial so I'm on a waiting list. So went back to my Onc and asked for more referrals, got one at The Christie and one at UCHL, went to see both last week, but I'm on waiting lists for those too! How on earth do I actually get on a trial when I've had no luck in nearly 6 months 😔 What makes it worse is I now need to try and get an appointment with my Onc which can take weeks, just to try and get more referrals, and I just feel I'm running out of time. Just feeling so low and scared

[Leniko]

you or your advocate (a forceful friend or relative?) need to super-firm to the point of pushy, to make them understand your rough timeframe. There must be some exceptions? Will your Onco push them a bit?

Hugs.

[lesleysage]

Hi, I am not sure Ovacome can help at all, but it could be worth talaking to the Support Team there to see if they have any guidance? Freephone 0800 008 7054

[Lily-Rose1]

Hi ,

I can’t help in regards to trials as I’ve never been on one .. but if it helps I was told I had tops 3 months when I was first diagnosed.. HGSC Stage 4 .. That was 7 years ago. Keep pushing and be strong.. I was extremely demanding about my care .. Wishing you Love and Strength 🦋🙏🏼

[Schnauzer19]

so sorry for what you’re going through, but you may have a lot longer than that, they can’t know for sure, plus you may still get on a trial; you never know what’s around the corner. Sending love & hugs Xx

[Kieran2018]

Hi ,

I was told I had a year and I’m still going . Don’t give up . Are there no more treatment you can avail of . Contact the Marsden and the Christie . As someone said keep pushing for trials . I know it’s difficult and so stressful but there is always hope . What about a second opinion? Heart broken for you . I don’t know what to say . Take care and I truly hope something good comes up . 🙏🙏xx

[Motiva]

Hello Kouyat,

No wonder you are feeling low and scared when you are trying to take in the system and it should be holding you.

Do you have a CNS? If not ask for one and get them to do the phoning. It must be exhausting for you.

Alternatively the oncologist’s secretary is a good person to befriend. I found it hard to remain polite and calm when I was in ‘fight for my life’ mode so a friend to advocate for you may be helpful.

Keep asking the questions and I hope you find the person who can facilitate your entry into a trial.

Best wishes,

F x

[Mariej2021]

Hi Kouyate My feelings are very similar to yours I was told in October my outlook was in terms of months I started chemo palliative to see if I would gain a few months and also a lot of trials have a criteria of platinum resistance so until I fail on this chemo I am still labelled as platinum sensitive I feel your pain about the trials Not alot open at the moment I have been looking in anticipation of midway scan showing this chemo not working and me still being able to try a trial The only bit of encouragement I can offer is that trials seem to come on stream all the time and maybe some new ones will open up The other thing is why do they need to make you wait weeks for an oncology appointment for referrals surely this could be dealt with by telephone? I agree oncology administration would be good person to befriend to help with that Thinking of you xx

[Dunsinane]

Hi Kouyate,

As Marjie2021 said, there are new trials starting up all the time, but it sounds like you’re having trouble getting information in a timely fashion, which is just not good enough.

You may consider contacting MassiveBio - massivebio.com - an organization that matches cancer patients to clinical trials at no cost. Once you give your consent, they will reach out to your oncologist for your records and then search for trials not only specific to cancer type, but also based on any known tumour markers. They are very quick to respond. I believe they have a patient advocacy service to help you connect to trials as well.

Sending hugs and very best wishes.

[FlowerRose]

Hi Kouyate,

I'd like to join the others here and let you know that I too, shocked and amazed my doctors for being here 5 years already when they were telling each other I had months. Nothing is really a given. It doesn't have to be what they say!

[candyapplegrey]

Hi Kouyate,

So sorry to hear you're going through this. I only recently asked about my original prognosis (2020) and was told they expected me to be dead by now.

The thing is that the longer you wait for a trial, the sicker/ weaker you might become, making you less suitable for a trial.

I've spent time trying to get on a trial but have more recently discovered through research that maybe they're not for me.

I went the alternative route and was free of cancer for 3 years (it had already recurred once, 2021) until I stopped. Now it's back but I'm going to get targeted radiotherapy. But it was me that suggested this.

Also went back on alternative remedies in the meantime and they seem to have slowed the growth of the lesion (no real way of knowing).

Of course, it's possible that using alternatives might disqualify you from trials but you could always check.

I empathise with you re contacting oncologist. I can't get through to mine at all unless they've booked me an appointment. It's not her fault - it's the way the system is set up - for the hospital rather than the patient. Are you in London?

Sending hugs and prayers. DM me if you want to try alternatives.

Candy xx

[OvacomeSupport Partner My Ovacome Team]

Dear Kouyate,

I'm sorry to hear that you are feeling so low at the moment. Our support team are here for you, whether you have a particular question or just want to talk things through. You can give us a call on 0800 008 7054 or email [e-mail].

Regarding alternative remedies/treatments, it is really important to let your team know of any such treatments that you are taking or are interested in. This is because sometimes even natural ingredients can interact with any prescribed medications, or can have other side effects.

Best wishes,

Alice - Ovacome