Recurrence #4

Hi and a very warm welcome to the online community

I can only begin to imagine how devastated you must feel every time you get a recurrence. It's something we all dread so I'm sure everyone here will understand how you feel.

I've had a look in the group to see if anyone has had isolated limb infusion/perfusion. There are a few posts which mention it but most of them are several years old so the posters may no longer use the community. If you type 'isolated limb' into the search bar at the top of the page you could have a read through them.

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Do come back and let us know how you get on.

x

Thank you. I will follow your suggestion and update my profile. Best wishes

Only recently diagnosed for the first time personally so I can only imagine how stressful this must be. Hope all goes well for you. <3

Hi Rosellen, sorry to read about your recurrences. I’m in the same boat with soft tissue sarcoma in my thigh and was diagnosed with my fourth recurrence yesterday. The discussion I’m having with my consultant is whether to opt for another simple resection or to go down the route of isolated limb perfusion, which was one of your options. I know nothing about the ILP approach, other than it is not a common procedure, and wondered if this was the way forward that you chose. If so, I would be extremely grateful for any insight you could share regarding the effect of the procedure, the procedure itself, recovery times, side effects etc. Any information would be very helpful!

I hope your recovery is well underway. 

Best wishes

Thank you

After much discussion about treatment options I am now in the process of being re-staged with a view to proceeding with immunotherapy.

So, I'm afraid I cannot help with the side effects etc as I haven't undergone ILP. In my case, an "intellectual argument" was put forward in favour of trying it in me as its usually used in melanoma patients with much more florid disease. So, after getting 2 further opinions (one in London and another in Sydney) I decided against ILP as there is no real evidence base / survival benefit for me in undergoing this procedure. 

Good luck with your decision making, I hope you find a patient who has been through it to help you. Best wishes

Hi Rosellen,

Thanks so much, that is very kind and helpful of you to respond. I’m also struggling to find a compelling risk/benefit argument for going the ILP route, so it is helpful having someone else’s take on the procedure. Good luck with your onward journey and I hope the immunotherapy is completely successful. 

Best wishes and thank you again,