Tomudex/Raltitrexed

[Pollyanna]

Has anyone been on this type of chemotherapy?


I was on 5FU & Leucovorin for only one treatment - side effects were extremely severe and many, and my oncologist believes I'm DPD deficient.

Tomudex metabolizes differently, so we're going to give this a go.

I'd like to hear (any maybe wouldn't like to hear) about any side effects experienced. I have to say that I'm a bit jittery about asking things on this site; I'm trying extremely hard to remain positive (hence the logon name), but some of the info on here completely freaks me out. I'm definitely on a "need to know" basis only. I don't need the superlative,
p*ssing contest answers. Just the facts. Please. Thank you.

[Hannah]

Hi Pollyanna,

Love your name! I don't know of anyone who has been on Tomudex so I can't say what most people seem to experience.

The most common listed side effects of Tomudex are: hair loss/thinning, stomach or abdomen pain; loss of appetite, weight loss; constipation; nausea and vomiting; lack or loss of strength; general feeling of discomfort or illness, headache, joint pain, muscle aches and pains, runny nose, shivering, sweating, trouble sleeping; rash.

There are also lots of other side effects, including ones that are serious (the kind where you have to "see a doctor immediately"). You can read more about the drug at the National Institutes of Health site: http://www.nlm.nih.gov/medlineplus/drug ... 00167.html

Just a few questions if you want to answer - were you on anything else with the F5U/leucovorin? Did you doctor actually do the enzyme test to find out if you are DPD deficient, or is it just a guess? I'm asking because the test is pretty easy and it is quite unusual to go straight to Tomudex without knowing for sure if you are DPD deficient. It is one thing if you definitely are (since most combos are given with 5FU) - but if you aren't, it's possible that your side effects came from the other drug you were taking. It would be very standard to do the enzyme test and know for sure if you are DPD deficient. If you aren't, you would try a different combo of chemo before you moved to Tomudex.

I am also wondering where your mets are? Also, I am assuming that you are in Canada, as this is where Tomudex is used.

Sorry for the long email and all of the questions - I just want to make sure that I understand what is going on!

Hannah

[Pollyanna]

Hi, Hannah:

Thanks for the s.e.info - most of it I was given, and a lot I got off various cancer agency websites. I'm very hopeful (and really, what else can I do?) that this drug will be far less offensive than the last. (I've got my stash of Zofran j.i.c.)

I have not been tested for DPD deficiency; I can only assume that my slew of bad reactions left no doubt. Don't get me wrong here, I have a chemistry background, I make sure that I understand and have some say on what's going on, and I've researched as well as my oncologist (whom I adore) - and the reactions I had were not the status quo for 5FU/Leucovorin. And really, those side effects are SO last month.

Yes, I am in Canada, which limits my treatment options somehow - the next choice after Tomudex would be a pill (can't remember the name offhand - chemobrain) that costs about $1000/month. My extended healthcare plan would be thrilled to hear about that, as we're already dinging them $5000 for my older son's braces.


I have no mets; pathology was T2, M0, N0 (on 13 lymph nodes). Lucky me. Removal of my tumor was v. clean - 5" margins on either side. Chemotherapy is a safeguard at this point - I was told if I was older, say 60ish, I could forgo it. But I'm only a babe of 45, so wanted to proceed. I'm not done shopping yet!!