More good news

Hi Gang 

I’ve just had an email from my oncologist (and I mean just now. Yes, my oncologist emailed me at 10.30pm) with my latest blood test results. This is what she wrote: 

“Dear Daloni

I thought you might want to know that your CA125 has fallen further to 1608 

1 month ago - 4157

2 months ago - 14,392

Wanted to share this good news with you”

I am so pleased to hear this. The CA125 is a blood protein that goes up as the cancer grows and down as it shrinks. Normal is below 35. So while my latest result is still relatively high, the rapid downward trend is what really matters. I’m hopeful that my next scan on April 14 will show stability and possibly even some shrinkage. I think it’s fair to say that the trial drug I’m on is showing promise. 

xx

  • Hi

    Absolutely delighted for you, you'll sleep with a smile on your face tonight Blush

    Tvman xx

  • Hi !

    That is really amazing !!! You are on the right path!! I'm so happy for you, please keep it up!!

    Pet

  • Great news Daloni. I bet your girls are really pleased too!

    Xx

  • Oh I am so pleased and over the moon for you it's about time you had some good news fingers crossed and everything else for you on the next scan keep fighting on xxxxx

  •  This is the Best. News. Ever. 

    Over the moon for you Grin I hope the next scan will confirm that the trial drug is working for you.

    You must have a very special relationship with your Oncologist, and no wonder after all you've been through together.

    Lots of love and hugs to you and the girls, and of course Noodle xx

  • Fantastic news long may it continue.

  • that’s fantastic news. You’ve put yourself through so much, you deserve a good result. x

  • Hi,

    good news. I am so pleased for you.

    my lenvatinib arrived in an envelope today. Pleased that has worked out ok.

    not sure if my GP will deliver my other meds.

    havent heard from Annette

    are you ok Annette 

  • How are you with apps Ruth? Have you heard of Echo? And are you in England? 

    You put in what meds you're on, the doses, and when you run out. Then it sends you an alert before you run out, you confirm if you need them or not, and a few days later the postman delivers them to you! It's fulfilled by Lloyd's pharmacy, so it's trustworthy, not random.

    After horrible experiences with my local pharmacy, I switched and I'm very happy with it. 

    Just a thought for folks, especially at the minute! 

    Lass

    Xx

  • Hi Lass 

    that app sounds ideal. I use some controlled drugs. I wonder if they post them? I suspect not. 
    xx

  • Heya

    Give me the name of a couple of them and I'll look them up on the app to see what it says. 

    I remember reading something about controlled meds, but I can't find where I read it now. Lol. I think it just said they'd send it out needing a signature. But I'll keep looking. 

    Lass

    Xx

  • From the Lloyd's website regarding Echo, the FAQ page. 

    "Can I order controlled drugs or medication that needs to be stored in a fridge?

     

    Medication that needs to be stored in the fridge can be dispensed with Echo by LloydsPharmacy. Chilled (cold-chain) medication is sent via the Royal Mail 24-hour signed-for service and each box is packed with Woolcool Insulation. Find out more about chilled medication delivery here.

    Echo by LloydsPharmacy can dispense controlled drugs via paper and electronic prescriptions. If you have a paper prescription you will need to post this to Echo to be processed. It can take up to four working days for your prescription to be processed. Controlled drugs are sent via Royal Mail 48-hour signed-for service."

    Lass

    Xx

  • Hi Lass

    try buprenorphine patches 

    Thanks! 

  • 9 different brands starting at 5 micrograms an hour up to 70 micrograms an hour available!

    Smiley

    Lass

    Xx

  • that's amazing news xxx

  • Great news just What is needed.x

  • Thank you all for the rousing cheer. I’ve been basking in the news all day. It’s a huge relief, possibly more than I’d explained. 

    When I saw my oncologist on Tuesday we had a disorienting conversation. Two weeks previously, the junior registrar had told me that the MDT has discussed my most recent scan from February and it looked stable. But she didn’t have the full report.

    On Tuesday, my oncologist had more detail. The scan did show the cancer was stable but it was stable in doctor speak. Technically this means the cancer has grown by less than 20% and the more detailed report showed the liver tumours had grown a slightly. So if the next scan showed more growth and the CA125 was rising, she said, I’d be off the trial and on to weekly chemo. But, she added, the growth was measured against a scan in November, a full month before I started the trial drug. There was no way of knowing whether the growth occurred before I started the trial and stopped with the new drug or whether it’s been growing steadily. I think the latest CA125 gives us the answer. Hurray! 

    I do have a great relationship with my oncologist.  I’ve got to know her as well as one can know a doctor in the year she’s been looking after me and we get on very well. The trials unit is kind of a special place where you get very personalised care and she’s a very special doctor. She went out on a limb for me to get me on this trial and I can email her anytime. I’ve been able to help her out too, for example writing a lay summary for her own research project. She’s a senior registrar at present but I don’t think it will be long before she’s a consultant and she’s going to be brilliant. The women in her care are very lucky. 

    great news you got your levitanib and by post too. Hopefully I’ll be able to get my drugs in the post too in the weeks I don’t need a scan or echocardiogram. 

    thanks for the info. It’s an interesting option. I’d still have to get to the surgery to get the paper prescription from the sound of it. 

    Sleep well everyone 

    xx

  • Does your GP surgery not do electronic prescriptions? Most English ones do, or are in the process of switching over, it should be happening in Scotland next year I think it is.

    So as my GPs does, then I just click the meds I want, hit request, and then their system talks to the one at the GPs, and the prescriptions are issued. The system picks it up, is then downloaded by the pharmacy, and they then make it up and post it out.

    When you're signing up, it asks which surgery you're with and you pick from a drop down. I'm assuming it will only show surgeries that have the electronic system. So it'd be quick and painless to see if it was a goer. 

    Lass

    Xx

  • Hi

    Yes my surgery does electronic prescriptions and they are sent to the pharmacy for me to pick up the meds. But if I understood well, the ECHO app wants a paper prescription sent to them for controlled drugs? Maybe I’m being an idiot here. Entirely possible. 

    xx

  • Yes I was in fact being an idiot. It says electronic scrips are fine