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patrigib
Posts: 48
Joined: Sat Mar 05, 2016 7:53 pm

husband 50 months post diagnosis stage 4 - endoxan

Postby patrigib » Thu Nov 22, 2018 8:47 pm

My husband was diagnosed Sept 2014 stage 4 - pancan - liver mets. They gave him less than one year. Here we are, scan stable, so his oncologist will put him on edoxan ( oral chemo) because he feels tired. Anyone experience with this chemo? Thanks
Sept 2014 : folfirinox, then folfiri, 5 fu maintenance; gemzar, taxol, now endoxan

toodotty
Posts: 165
Joined: Sat Jun 09, 2018 4:17 pm

Re: husband 50 months post diagnosis stage 4 - endoxan

Postby toodotty » Thu Nov 22, 2018 10:48 pm

Wow, that is amazing. Sorry cannot help re endoxan, perhaps speak to the nurses? Though I suspect that you guys are in uncharted territory.
Erika

Theresa Upton
Posts: 62
Joined: Thu Oct 11, 2018 4:39 pm

Re: husband 50 months post diagnosis stage 4 - endoxan

Postby Theresa Upton » Mon Nov 26, 2018 5:08 pm

That is brilliant news, 50 months. Sorry I cannot help with endoxan,

Theresa

PCUK Nurse Dianne
Posts: 286
Joined: Tue Aug 14, 2012 3:29 pm

Re: husband 50 months post diagnosis stage 4 - endoxan

Postby PCUK Nurse Dianne » Thu Nov 29, 2018 4:01 pm

Dear Patrigib,

Such a great achievement and one to be celebrated. Thank you ladies for your responses too. Patrigib, Endoxan is a trade name for a chemotherapy treatment called Cyclophosphamide. This is a treatment that has been around for a long time, usually given more frequently for other cancers (ie breast, and blood based cancers such as leukaemia and lymphoma). We have only heard of this being given most commonly in intravenous format, not in an oral preparation as you mention.

Patrigib I also noticed that this can be given in some instances in 'renal conditions' not necessarily associated with cancer, however the literature suggests benign conditions such as 'nephrotic syndromes, mainly in children.

I wondered if your husband is having treatment privately, as Erika suggests this sounds a little like 'uncharted territory' and we certainly have not heard of this treatment range before in pancreatic cancer. I have you asked specifically if this is for treatment of pancreatic cancer or due to some of the possible effects of the cancer? For our own experience it would be good to know a little more too, if you are able to come back to us with any further information Patrigib.

With kind regards,

Dianne
Pancreatic cancer specialist nurse
Pancreatic Cancer UK
Support line: 0808 801 0707
Email: nurse@pancreaticcancer.org.uk

patrigib
Posts: 48
Joined: Sat Mar 05, 2016 7:53 pm

Re: husband 50 months post diagnosis stage 4 - endoxan

Postby patrigib » Fri Nov 30, 2018 5:11 pm

Dear nurse, Thanks for your reply
No, no private care , my husband is treated at the CHU of Liège ( university hospital). Abraxane is not avalable here in Belgium for pancreatic cancer, so he was given : folfirinox, folfiri, 5 fu maintenance, Gemzar, Taxol and now one pill of Endoxan 50 mg a day. This last one was given as my husband was increasingly tired, sleeping most of the time and a bit fed up going to hospital, moreover as his son passed away two years ago from carcinoid cancer and his nephew 2012 from pancan at the age of 44. Up to now, he tolerates this new chemo quite well ( no nausea) but is still very tired. I think from experience that the new start of a chemo is always the hardest, so I hope he will be less tired soon. I will post again in a few weeks to keep this thread updated. Maybe this will also give hope. My husband was given less than a year, somtimes doctors foget we are humans, and not machines, and this can be very hard on the patient.

patrigib
Posts: 48
Joined: Sat Mar 05, 2016 7:53 pm

Re: husband 50 months post diagnosis stage 4 - endoxan

Postby patrigib » Fri Nov 30, 2018 5:16 pm

I forgot to tell you that there is no specific condition, no kidney or any other condition, only this cruel cancer. Don't know why they choose Endoxan. I think they just try something that helps him to have a better quality of life. This afternoon, he was able to have a game of card with his friends at the pub :)

Theresa Upton
Posts: 62
Joined: Thu Oct 11, 2018 4:39 pm

Re: husband 50 months post diagnosis stage 4 - endoxan

Postby Theresa Upton » Mon Feb 25, 2019 9:19 pm

Hi, how are things going Patrigib?

Theresa