Grueling Week

Hi  that sounds awful. Is the drug in the pump 5FU? I think you may be having a different type of chemo than I did. I had an infusion of Mitomycin on day 1 then Capecetabine chemo tablets for the rest of the treatment. In general Capecetabine seems to be better tolerated than 5FU and is spread out over the course of treatment rather than concentrated in weeks 1 and 5. What anti nausea tablets did you try? Sometimes you have to try a few different sorts of tablets before finding the right one. Please mention this to your treating team. I hope things get a bit easier from now on. Bev. 

Hi Meg (),

I think from what I can gauge from people on the oral chemo to those on the infusion the side effects from the infusion can be much more severe. My oncologist told me that the oral chemo carries way less side effects, although even that can cause issues, it’s an incredibly toxic drug we’re having pumped into our systems! There are many different anti-nausea medications that can be prescribed so before your next chemo ask your treating team if there’s a different one you can try as obviously with you being so sick the first one didn’t do the trick. 

I hope you’re feeling better soon.

Nicola

Hi Meg, 

i had a similar experience with my first couple of cycles of treatment. 5FU followed by carboplatin as well as a trial drug. I’m stage 4. I didn’t realise so much could come out of me from both ends. Things have now settled and I’m on my third cycle. It has got easier, I hope it does for you too. X

Do you know if they did a DPD test before treatment? If you have a genetic deficiency then effects of chemo can be really bad. Not a dr but just a thought. 

Hi Dougalandpoppy, 

I think I read about that on here in another thread and I did ask the nurse and she had never heard of it. I would be almost certain that I have that genetic deficiency. My chemo pump was stopped on June 11 and I am still sick. I have lost almost all my hair and I can’t even imagine going through the second round. I hate to put my terrible experience here to scare others but it seems like most people don’t have such a severe reaction. Do you know what DPD stands for? What to they give for those who have that deficiency?

Hi ,

If you go onto Cancer Research UK’s website & put in the search box DPD deficiency there’s a really informative explanation there of what it is, what it does, how Dr’s test for it & what the possible side effects are if you’re having chemotherapy & you are deficient of this enzyme. 

I hope that helps. 

Nicola

Thank you! I found that information. I’m going to ask my doctor to test me for that. 

Chances are they have tested you as they had tested me so when I asked about it they already had results. I’m deficient so was started on lower chemo and raised it up a bit when they could see I was tolerating the chemo. Good luck and hope you feel better soon, 

Do you know how much lower they reduced yours? My doctor did say he was going to reduce it by 20% for my next round but I’m still so worried and can’t imagine taking it again with the way I still feel.

I have just spoken with the nurse about the DPD blood test. She said that is not a blood test they do before treatment. I asked if I could have one and she said she would talk to my oncologist and let me know. I hope I can get some answers before my next chemo infusion starts on July 8. In addition I was hospitalized over the weekend because I have 2 blood clots in my lungs. One doctor told me that cancer can make your blood clot easier and that chemo can also cause it. Those came out of the blue. I feel like I’ve aged 10 years in a month’s time. I was fit and active a month ago and now I can hardly walk up the stairs. I keep telling myself I’ll get through this but sometimes I’m not sure.  My doctor doesn’t seem to know why I’m so sick.