Hi All
I've been having treatment for stage 4 bowel cancer over the last two years (one 17mm met in liver & four ~12mm mets in lungs). I've had a range of chemo drugs and targeted drugs. For a while the drugs seemed to at least be holding things in balance, but at my last scan back in January the tumours had all grown. My Dr suggested that it may be the time to consider stopping treatment to at least have a degree of quality of life for however long was left. They felt the treatments were no longer working. I opted for another course of Folfox (the very first treatment I had two years ago, as this was the most successful of all the drugs I had). My thinking was just maybe this would knock it back a bit and at least inform on whether there was another course to keep me going for longer. A long-shot.
Throughout my treatment the side effects have been miserable (lots of nausea, sickness etc), regardless of the different anti-sickness I've tried - so I know that continuing with drugs like Folfox or Folfiri longer term is not a viable option.
I guess I'm seeking any advice that I could then discuss with my Dr from anyone whose tried and succeeded with other drugs/techniques please? I know my cancer can't be cured, but if there were things out there that can extend, whilst allowing some quality of life.
I've had Folfox, Folfiri (with Cetuximub), Lonsurf (with Bevicizimub) so far. Approx 30 cycles in total. The Dr mentioned there was a 4th line that could be considered but felt that it was highly unlikely to work and would just cause more side-effects for no gain.
Many thanks for any help
Thanks
Dave
Hi DEP
You have done incredibly well enduring all the different cycles .
Have they investigated the possibility of radio frequency ablation ?
I know there is criteria for all things but it does seem that your volume of disease has not increased in terms of number of mets.
Might be worth asking for a consultation.
Take care ,
Court
Helpline Number 0808 808 0000
Hi Court
Many thanks for getting back. That's a good point. We discussed possible procedures what seems such a long time ago and they were dismissed due to the spread etc, but you're right, it would make sense to bring it back into the discussion to see. You're right as well, although the Mets are growing, the one in the liver has stayed solitary (the lung ones did increase in number earlier in my cycles) - I will check for sure.
Thanks again
Dave
https://www.nice.org.uk/guidance/ng151/resources/colorectal-cancer-pdf-66141835244485#page17
I replied but thought I would tidy it up a bit .
I have added the Nice guidelines and I would have a good look at the guidelines for treating stage four cancer .
It would certainly be worthwhile asking if an interventional radiologist would be a possibility to review your scans as that covers both the liver and the lungs .
My mum had lung surgery and I know Marianne26 had a bilateral lung ablation . Star74 had to have a private consultation that opened up other avenues on the NHS .for her liver .
But I would definitely email to find out what the current rules are around managing disease in two organs to see what options you have . Two aspects , obviously to maintain your current health but also to prevent becoming symptomatic.
I hope that makes sense. Sometimes tough on the forum to clearly communicate .
Take care ,
Court
Helpline Number 0808 808 0000
Hi DEP ,
I echo everything court said, worth asking about ablation. Another thing that came to mind is SABR, I think only 3 areas can be treated on the NHS but 5 if you go private (not sure of your situation or the cost of this but may be worth looking at.
Also do you know your mutations? A liquid biopsy may be beneficial at this stage, it can show up mutations that were not previously known about which could enable you to access other treatments. It's costly though and there is the danger that it shows nothing new at all.
I would also rechallenge folfox, especially as you previously had it some time ago. Another couple of chemo lines offered after Lonsurf are Regorafenib and Fruquintinib, not sure of the rules or if you are eligible but something to mention.
You are also entitled to a second opinion, even if they agree, at least you know you've left no stone unturned.
Good luck and let us know how you get on!
Michelle
Hi Dave
I had my lung ablation procedure back in 2019, & at that time, there were certain criteria that had to be met (as court mentioned.
The lung tumours need to be less than 3.5cm, & not near any important arteries/ veins.I have also read that a maximum of 4 per lung can be treated on any one occasion. If I remember also, 'depth' of tumours were also taken into account. It's been a few years now, & so of course, these factors could easily have been changed.
Many best wishes to you.
Marianne
Hi Michelle
Thanks so much for your message & sorry for the long delay in replying!! Like with Court, I really appreciate the tangible suggestions - it's exactly what I was hoping for, tangible things I can look in to and discuss with my Dr. I will also get a 2nd opinion. Thanks again, Dave
Hi Marianne
Many thanks for your message. That's really good to know, I will definitely follow up on this with my Dr. I hope things are going well for you. Thanks again, Dave
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