On Friday, we were told that my husbands Lonsurf/avastin had failed and he is now on his last line treatment Fruquintinib. They are hoping that if this works at all it may only be for only 6 months and they are estimating 11 months survival in total.
He has always acquiesced to what the consultants have told him previously but this revelation has galvanaised him into action, tho I hope it is not too late.
He has always been refused for any type of surgery/ablation but I do not feel we ever had any explanation for that, tho he would not let me argue with the consultant. I just want to know why.
I have looked at trials/private non standard treatment and have found three tretaments which may be suitable for prolonging his life. I wondered if any one had any experience/knowledge of
histotripsy
embolisation
HAI pump therapy
We are willing to travel anywhere in the UK and although I can't say money is no object, we do have some we can use for private treatment.
Just desparate now and searching for possibilities.
Hi MrsHJF and a warm welcome to the Macmillan Community but I am sorry to hear about the challenges surrounding your husbands treatment and support.
I know from experience having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
As you see the Community is actually divided into dedicated Support Groups (Discussion Rooms).
Can I recommend you post in our dedicated…….Bowel (colon and rectum) cancer support group.
I also see you have highlighted Liver Cancer so you can join and post in our dedicated Liver cancer support group.
These groups are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
As for the practical and emotional challenges of supporting your husband and indeed yourself you may benefit from joining and posting in our general cancer……
Carers only and our Supporting someone with incurable cancer support areas where you will connect with a wide range of members navigating the exact same support challenges.
To connect with a group click on the “Bold Links” I have created above …… then once the group page opens you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
Hi MrsHJF
Am I correct in understanding that your husband has metastatic bowel cancer that has spread to his liver? If your husband has been refused surgery / ablation, it’s likely because the amount of cancer, or its location, make these approaches impractical. It’s also possible the team are concerned that such an approach wouldn’t address circulating cancer cells. I have metastatic breast cancer which spread to my liver and always knew liver resection wasn’t an option. Essentially it’s a major operation with significant risk factors and it wouldn’t have addressed my circulating cancer cells. Once immunotherapy had addressed that, I was able to have ablation, but only because the cancerous deposits were at that point small and not close to major blood vessels. The 3 therapies you mention are not widely used in the NHS and I think would be subject to similar constraints to ablation, assuming you can find a practitioner.
I quite understand your desperation!
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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I have metastatic Triple Negative Breast Cancer, in remission
