Some good news at last…

Another post not about Saskia I’m afraid – but I have news I thought you would probably want to hear.

So today we attended the clinic at St George’s Hospital to get the results of my CT scan last week, to asses whether or not I have responded to the new chemotherapy I am now on. As before at the Royal Marsden, if the chemo was proving effective we would carry on with it, if not then we would stop the treatment (no point enduring the side effects if it’s not offering any benefit).

To be honest Sally and I were both expecting bad news – yes, my condition has been improving, but we have been disappointed so many times in the last six or seven months, that we dared not get our hopes up too much.

However, for once it turned out our pessimism was unfounded. After all the previous disappointments I can barely believe it, but for the first time since my recurrence was diagnosed in February, we left a post-scan clinic appointment with (mostly) good news.

I say ‘mostly’ (in the voice of Newt from Aliens – “They mostly come out at night… mostly”) as the scan did show that the disease had progressed ‘slightly’ (said in any old voice). However, there is a pretty big caveat to that slight progression.

When I moved to the team at St George’s Hospital from the Royal Marsden and started this chemo, a baseline CT scan wasn’t carried out for one reason or another (I was pretty unwell, and the priority was just to get me on some treatment). So prior to last week, my last scan was back in mid-May, eighteen weeks ago – this was therefore the only scan available to compare against, to judge whether the disease had progressed or not.

Of that eighteen week period between the two scans, I spent the first nine weeks not receiving any treatment, and generally having a bit of a rough time of it in terms of my physical condition (this was period I mostly spent lying half-asleep on the bed watching endless episodes of Frasier).

Then nine weeks ago I began these new treatments – and since then my condition has gradually improved, and I have been feeling progressively better.

Given the lack of a proper baseline scan at the point of starting the chemo we can only really speculate – but it seems possible that the disease progressed in that first nine week period while I was not receiving any treatment, and that the chemo has elicited a positive response over the last nine weeks, either halting the disease or causing it to regress.

As I say, the above is only speculation, but it seems logical, and fits with how I have felt physically over that time. The doctor also seemed willing to entertain the above theory as perfectly possible.

Either way, despite the slight progression we are going to be continuing with the chemo – for two reasons; firstly, given the uncertainty described above it’s very possible the chemo has been having a positive response; and secondly, I am about to begin another treatment, a cancer vaccine, which the doctor says works very well in conjunction with the chemo I am currently receiving (Carboplatin).

We have been hoping to get this vaccine for a couple of months now, but up to now it has been unavailable. It is not a treatment licensed on the NHS, and is currently going through clinical trials. As we have previously discovered, I would not be eligible to take part in a clinical trial as most do not permit patients with brain metastases. However, I am to receive the vaccine on a ‘named patient’ basis – which basically seems to mean that on recommendation of my consultant I can receive the vaccine outside of a trial environment, and free of charge (which is just as well – if I was paying it would be nine hundred pounds a consultation!!).

Unfortunately stocks of the vaccine were limited, and priority was given to the clinical trials. However, it seems that the vaccine is now available – today I signed the consent forms, and the plan is that I receive my first dose of the vaccine next week.

So that was further good news. All in all, this morning if someone had offered me slight disease progression, continuing with potentially effective chemo, and starting the vaccine treatment as the outcomes from today, I would have bitten their arm off. And it feels good to have had positive news for once – it renews our hope that things can go our way.

It’s still important to be realistic – this is just one ‘battle’ won in what is still an otherwise long and gruelling ‘war’. But it feels good to be on the score sheet at last with a victory.

So that’s about it for now. Chemo on Friday, Vaccine next week (hopefully), and a post about Saskia sometime soon.

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12 Comments

Filed under Battle with Melanoma

12 responses to “Some good news at last…

  1. Simon

    Really great news Ben ! A positive step, is a positive step – love to you all – Simon

  2. Paul

    That’s great news Ben and hopefully will give you, Sally and Saskia a good boost! Delighted to hear of a minor ‘sea change’ in the right direction. Rome wasn’t built in a day as they say…it took weeks!!! Keep the spirits up, you are doing really great!!!

    Love to all,

    Paul

  3. Tears of Joy over here in Slovenia, Ben. So heartening to hear of this sweet progress. love, Steph

  4. June and Colin

    dear ben,
    I am very pleased too hear the good news… Its amazing all the research and new things to come on the market… this vaccine sounds amazing. thanks for the update. 🙂 I hope to get out too the uk this year, im not sure yet…So busy here with business etc.. but we shall see. 🙂
    talk to you soon,
    Your overseas connection. xxxx

  5. Janine

    That is such wonderful news Ben, we are so happy that you have had some positive news. It certainly sounds like the decision to go ahead with this treatment plan was the right one for you. Hope that you continue to feel well in yourself and this good news gives you all the boost that you deserve. Love from Janine, Dan and Matilda xx

  6. Tanya

    Glad to hear some good news for you guys. x

  7. Angela

    Excellent Ben! must feel so good to wake in the morning with some renewed positivity! love Ange x

  8. Lynsey

    Wonderful news Ben! I am so pleased for you. It is about time you received some positive news after what you and Sally have been through together this year. Good luck for your chemo tomorrow, hope all goes well.

    Lyns xx

  9. Claire & Phil

    Hi Ben – we’re so pleased to hear this latest news – I have such a positive feeling about this new treatment! After everything you’ve been through this is such a well deserved boost. Hope all goes well tomorrow and next week. Lots of love to you all and good luck to Sally!! xxx

  10. Jacqui

    Hi Ben and Sal, Great, great news. Keep eating thoses greens xxx

  11. Vic x

    Great news Ben. Keep on that roll! xxx

  12. Ron and Nancy Wilson

    So happy to hear this good news.
    Our thoughts and love are with all of you.
    Ron and Nancy
    xoxoxo

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