Long term effects - anyone???

[Ivona]

Hi,
I am looking for any papers or other info on the long term effects of Folfox and/or 5FU. I seem to recall reading an article about possible heart problems...but of course I don't remember where or when I read that! (chemobrain! )

I'd appreciate any info on this....thanks!!!

[mm66ny]

I used to have steady hands. Now they shake a bit, supposedly from nerve damage.

[Ron50]

Hi Ivona,
I had 5fu and levamisole back in 98. One of the side effects has been stones . I lost my gall bladder after acute pancreatitis. A gall stone blocked my pancreatic duct. . That was around 5 yrs post chemo. I have had at least 5 episodes of renal colic(kidney stones). At 14 yrs post st3c 6/13 nodes I have severe neuropathy both feet and legs ,left hand and beginning in the right,severe psoriatic arthritis ,alkylysing spondolitis in my lumbar spine (I have lost 6cm in height in the past two years) plus I have chronic protein-urea(protein loss thru kidneys). My rheumatologist is an ex oncologist and his private opinnion is that most of my problems are probably due to chemo. Cheers Ron.

[nbrandt]

Ivona,
Heart OK. But have nerve damage to my left cheek with numbness and pain in eye, sinus, ear, mouth, and teeth. My hands and feet have been improving but still have nueropathy in my hands and feet when cold and damp. I love dry 80 degree weather. I am just one year out so hoping for continued improvement. The nerve in the face was the first bite effect which lasted 1-2 days and had an episode when my eye shut when cold air hit eye; An hour later I could open my eye. I see you are a survivor. I am hoping and praying for the same.
NBrandt

[live2jett]

Hey....I have missed seeing you face:) Glad you are well:)

[JAZZToo]

Ivona

5FU can cause a serious immediate reaction if a person is missing a certain enzyme. I don't believe it has any long terms lasting effects. I had 5FU 8 years ago, and I had no side effects, short term or long term from It; but of course everyone is different, and some may have had long term lasting side effects from that treatment.
Oxaliplaten is in the Cisplaten family which is used to treat breast cancer; and I have read that Cisplaten can cause long term heart problems, but I don't remember where I read it. You could try SearchMedica.com or Index Medicus to look for research on 5FU and Oxaliplaten long term side effects.

Leslie
Lynch Syndrome
2004 ADH - 5 years Tamoxifen
2003 Colon Cancer - right hemicolectomy and 6 mos. bolus 5FU with Leucovorin infusion.
1995 Endometrial Cancer - TAH BSO

[weisssoccermom]

I was floored last April when my neurologist told me that 5FU or Xeloda caused long term nerve problems. I don't know if you remember but I was having issues with my facial nerve. Convinced that she was confusing the 5FU with the oxi (which I only had one infusion of - certainly not enough to cause long term/permanent damage, IMO) and she said NO and was adament about it. I can't remember everything she said but there was a condition associated (albeit rare) with 5FU that can be fatal....wish I could remember the name....started with a "P" or "R" if memory serves me correctly. Thankfully, I don't have that!!.....but in trying to remember what she said and in doing my own research, yes, I did find that in some instances, 5FU (and I would assume Xeloda) DOES cause long term nerve problems. Not necessarily the same as neuropathy...and really confused as to what is the difference. Thankfully we believe we have found the cause of my facial nerve issue and while it is cancer related, it has nothing to do with the drugs.