My husbands latest scan results show progression and so Folfiri and cetuximab have been stopped. Oncologist suggested revisiting Folfox, Lonsurf or simply stopping treatment.
We’re still waiting to hear about Annica trial, which Court told me about, but with things as they are, not sure if they’re going to be postponed or even if he’s suitable. We’re also waiting to find out cost of Avastin, hopefully we can afford it. The oncologist doesn’t think any of them will work and actually, apart from being stable on Folfox March 19, the latest one Folfiri and cetuximab hasn’t worked.
The cetuximab may cause a severe rash etc but the reports of it helping with pain are true within a week of starting it, my husbands pain went, he didn’t need morphine, I don’t know how long it’ll be before the pain returns.
Has anyone have any knowledge or experience of Berzosertib? There was an interesting article on BBC which I need more information about.
budge
Hi
Really sorry to read about your husband .
Such a difficult time just now on so many levels .
I had a quick read about Berzosertib . I saw it briefly mentioned about a month ago and meant to read up on it then . Quite an encouraging read . If I am reading right been in trial at the Royal Marsden and got good response with it as a single agent but better with chemo . There was another article I read that said a bowel cancer patient had been successful using it for six years . Not sure it’s history or how he managed to access that when it’s so new ! But it certainly very encouraging on many fronts . The other thing I noticed the trail seemed to be on advanced cancers so I guess that’s good news too on tolerance.
Has anyone been able to access it . I have heard some patients talk about accessing meds on compassionate grounds from the pharmaceutical companies but absolutely no idea how that works .
Trails are a nightmare just now . Our transmission numbers are declining here although hospital admissions are still up I am hoping it settles soon . Back end of Hogmanay I reckon here . I read today there is more compliance again so hoping in the very near future they can get this back out the hospitals . Poor staff too!
How are you keeping ?
Take special care ,
Court
Helpline Number 0808 808 0000
Hi Court, well it’s day 3 and so I’ve had time to absorb, reflect and pick myself up. It’s hard in the wee small hours but thats when I search and post, I’ve simply got to crack on and do my best to find the best solution, there’s time ahead for me to cry.
On a positive note, Mart has had a call from UCL and a video conference has been arranged for next Tuesday with Professor Bridgewater about the Annica trial, it is still going ahead, I don’t think they’ve tested his surgery biopsy as yet, so nothing is confirmed but it’s lifted my husbands spirits, maybe won’t last long but I’ll take a glimmer of light for now and start planning how I’m going to get him there. This is down to you for telling me about it, give yourself a big pat on your back or maybe a nice glass of wine
I’ve posted on forums to try to find out more about the Berzosertib but if I don’t get any joy I’ll try ringing the Marsden or ICR, nothing to lose.
A woman on a cancer research uk forum told me her oncologist was doing a deal so she would be paying approx £400 a month, I did pass on all the relevant oncologists names to Marts oncologist but he said they usually go through ‘the pharmacy’ at RD&E, still waiting for info but I’ll contact her again to see how it worked out. The cost varies from £200 to £2000 so it’s worth getting the best deal I can to make it affordable.
Hope you and your Mum are ok
Budge
Hi, is it the cost of Avastin you are looking into? There's been quite a lot of the bowelcanceruk forum, from memory one lady went direct to the drug company and was able to get it at cost price. If you go back onto the site and onto the search icon, type in Avastin all the discussions pop up.
Hope you get the treatment for your husband, love Frances xxx
Is it worth getting a second opinion, perhaps another view could provide you with different options? Take care love Frances xx
Hi
Oh I do hope the Professor has something to offer that will be of help . Glad it’s picked your husband up a bit .
You are such a help to him but it’s just plain hard at times . Always here for you , as you know .
So pleased to hear the trail is continuing to run . We are in a very tight lockdown here but the one good thing is cancer surgery and treatment is still going on . Phew .
Mum is doing fine . Had a phone consultation last week about her swollen veins in her abdomen. He was really helpful .
Take care ,
Court
Helpline Number 0808 808 0000
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