My saved pages
For people living with incurable cancer only
This group is aimed only at people who have had an incurable diagnosis themselves, as we have had feedback that they would like a safe space to share their feelings openly among themselves.
If you have a loved one with incurable cancer, you are very welcome on the Online Community as a whole, but we would ask that you respect the wishes of people with incurable cancer and not post in this particular group. Instead, you will find really good support in the Carers group, the relevant cancer type group and the supporting someone with incurable cancer group.
Does anyone have experience with FolFiri treatments with or without Avastin?
Please read my bio and if you have feedback please share!
Portegee from USA
Sorry to hear your story, it is similar to mine, although I had surgery first July 2009, they did see something on my lungs at the time but said it was'nt anything. Like you kept their eye on lung nodules until they grew enough for me to have to have chemo, Folfox, Oxylplatin and Avastin. Jan Aug 2012. Although my lung mets did'nt shrink they stayed the same, but as soon as I came off chemo they grew again. My onc has let me have a long break, I go Friday for results of my ct scan. Am a bit worried they will have grown again and I will need more chemo even though I feel well. He has said I will have different chemo as in his eyes my chemo did'nt work.
I don't think not having 2 sessions of Avastin will have made alot of difference, alot of people only have 6 sessions.
Good luck with this chemo, let me know how you get on.
I try and stay as positive as possible, am sure it makes a difference.
Take care ,
Thank you, Pam. I appreciate your email. Good luck at your appointment, I will think good positive thoughts for you.
Can you please tell me about your treatments? How many did you have total? When and if it hit you hard with diarrhea, nausea, vomit, fatigue? I'm wondering what I may expect? I hear I could even get constipated.
My first round of chemo in 2012 I did fine. I was able to continue to work. I did experience some fatigue, nausea and loss of appetite. Oh, and the neuropathy is horrible in my hands and feet still.
Anyway, best wishes and I pray God looks after all of us and our families
Take care and hope to hear more from you.
Welcome to the group. I'm having folfiri + avastin. If you look at my profile you can read a bit about my diagnosis. I'm finding this regime a bit easier than folfox. I had terrible nausea on that one, with folfiri I've got a better quality of life, to the extent I'm looking at returning to work part time.
I've had 3 treatments so far, the worst side effects for me is fatigue. Unfortunately I was supposed to get dose 4 today but due to low neutrophil count I'm having a week off. I won't know the results of this treatment until I've had 6 doses, then I'll go for my PET, CT & MRI scan....that's something I'm dreading. I'll keep you posted when I have the results. There are many other people on the site who have had good results with avastin so I have my fingers crossed it works for me too.
I wish you all the very best with your treatment,
I had 12 sessions, but only 10 of the oxy as my neutorphils were low alot and had to delay chemo 4 times, I also had neuropathy, which I still have in my feet. I did'nt have nausea but was tired a bit. I did'nt find my treatment too bad to be honest, although my onc did reduce my dose after 2 sessions.
Will let you know my results.
Love America by the way have been twice, wanted to go back but cannot get insurance .
Yes am hoping god looks after us ,
Hi Portagee, I am currently on Folfiri and have had 8 cycles so far. I'm not having Avastin. After 6 cycles I had a scan which showed a reduction in my cancer. I have spread to liver and lungs. I do get constipated which can be dreadful so I try to eat foods that will help matters and this usually gets things moving. I have had 2 ocassions where it's been very troublesome, so just rode out the storm. At my original diagnoss 4 years ago I had Oxaliplain and Capecitabine which has left me with peripheral neuropathy in my feet. It's much better now but has never gone away competely. I wish you all the best and do let us know how you get on. Angela
If you have any questions about Macmillan, or would like to talk to someone about cancer, we have a team of experts who can help.
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ.