First Chemo

Betsydoglover · July 2005

Hi all -

I'm pretty new, but already I love this group and hope to really be part of it after a while.

I started my chemo this past Monday (following colon surgery in early June - I'm stage 4 with one tiny met to liver). Had oxaliplatin and am also on Xeloda tablets. I haven't turned into a pumpkin or anything - yet (and hopefully won't). Had really bad flu-like aches and pains on Monday and Tuesday and some nausea Thursday, but other than that I've really been ok (not that I'd want to go out for Mexican food or anything!).

Monday I get Avastin and after that I'll be doing the oxaliplatin / Avastin combo every 3 weeks (in addition to the Xeloda).

So, I know you all probably aren't surprised that I'm not doing too badly. I, however, couldn't help but be worried in spite of what my oncologist told me. So, it's nice to know there's a group of people I can say this to.

Also have a question. Do the side effects tend to get worse as you go through multiple cycles? I'd like to hear your experiences (even though I don't want to "borrow trouble".) Thanks.

Betsy

122456 · July 2005

I had my 1st chemo treatment of the 5-FU & leveruion back in May '03. No major side effects. I was so hungry afterwards and so wired. I didn't get to sleep until 3 a.m and had to go to work the very next day. So the dr prescribed me some Ambien and that helped a lot. Before I would do a treatment, I would eat some yogurt or drink some buttermilk. It helped cause I never felt sick to my stomach. I took it from May '30 to Jan '04 the first time. I'm taking Xeloda 500 mg now cause I had a recurrence in Sept '04. The only side effects I have are the palms of my hands and soles of my feet are discolored but I can live with that. I know it seems like an uphill battle but in the long run, you will win. Stay positive and you will make it. Oh yeah, I didn't lose my hair only my eyebrows and didn't know I lost them until I looked at a picture of myself and I said oh dang, I don't have any eyebrows and I look at myself everyday.

rejoyous · July 2005

I was on a different cocktail than you (I had oxalyplatin, leukevorin and oh, gosh, what's the third drug in 5FU?) Anyway, I wrote into this site last fall with the same question you raised and was much relieved to hear that the symptoms might not follow any particular rhythm. That certainly was the case with me.

Each cycle was a little different--sometimes I felt more nauseous, sometimes less, sometimes I felt more tired, sometimes less. Generally, though, the periods and severity of the fatigue kept getting more intense through the six month treatment cycle.

I can't emphasize enough how important I felt getting exercise to be. I tried to walk for an hour at a time several times a week, and mostly was able to keep to that schedule. I rarely wanted to walk as soon as I got off the hospital-based chemo, but I did do it, I think every time, and it always made me feel better. Walking is a natural antidepressant, of course, and it also made me feel happy that I was doing something active to help my healing.

Tapioca was my favorite post chemo food. Mild. Soothing.

Congratulations on one treatment down. As I used to say to myself, that's one treatment you'll never have to do again.

--Ellie

taraHK · July 2005

Hi Betsy,
I am on the "liquid" form of what you are on: oxalyplatin plus 5FU plus leucovorin. I have completed 3 of 12 cycles. So far, my only significant side effects have been some nausea and some fatigue. Are you taking antinausea drugs? There are lots so make sure you get one that works well for you. The antinausea drugs I'm on give me significant constipation.
I have certainly heard that the effects can be cumulative (side effects may be worse in later stages of chemo, especially fatigue). But when I had chemo 2 years ago -- just 5FU -- I didn't really experience that. Everyone is different.
Good luck! and best wishes,
Tara

rthornton · July 2005

Hi Betsy.

I just completed my third round of 5FU, Oxaliplatin, Leucovorin, and Avastin. I have to do my infusions admitted to the hospital, for three days every two weeks. Just completed #3 of 12.

I get Decadron (a growth steroid), Luecovorin, Oxaliplatin, Avastin, 22 hours of 5FU, then more Leucovorin and 22 more hours of 5FU. The growth hormone makes me wired and achy. That's the worst part of the process, maybe. I have been lucky with few other side effects. I might have diarrhea for two or three days after chemo, and I'm starting to have a cold sensitivity/hand and foot tingling from Oxaliplatin.

I have heard that side effects may get more pronounced over time. So far, for me, so good. And I hope the same for you!

Rodney

jsabol · July 2005

Hi Betsy,
A belated welcome; sounds like your attitude will carry you a long way in this battle. I first signed on right before my 6 months of chemo (5FU and leukovorin) and just had my one year anniversary of completion of chemo, with NED. My meds were different than yours, but everyone's reaction/tolerance seems to be pretty individual. The side effects can tend to be cumulative. I was one of the lucky ones; except for some pretty amazing fatigue, I did OK. I did lose weight, but gradually over the months. One piece of advice that I think helped a lot was to be sure to be well hydrated before, during and after chemo. When water tasted funny, I added a bit of ginger ale, which did the trick.
So, continued good luck and keep us posted. Lots of tricks here to help manage any side effects. Judy

kangatoo · July 2005

jsabol said:
Hi Betsy,
A belated welcome; sounds like your attitude will carry you a long way in this battle. I first signed on right before my 6 months of chemo (5FU and leukovorin) and just had my one year anniversary of completion of chemo, with NED. My meds were different than yours, but everyone's reaction/tolerance seems to be pretty individual. The side effects can tend to be cumulative. I was one of the lucky ones; except for some pretty amazing fatigue, I did OK. I did lose weight, but gradually over the months. One piece of advice that I think helped a lot was to be sure to be well hydrated before, during and after chemo. When water tasted funny, I added a bit of ginger ale, which did the trick.
So, continued good luck and keep us posted. Lots of tricks here to help manage any side effects. Judy

Hi Betsy...as has already been said, side effects vary for each one of us. I was told by my onc. that it all depends on what surgery one has had, how soon chemo is started pre/post surgery, the patients overall health prior/during chemo and their past health history. Of course reactoins are different between males/females as well. I did 6 months 5fu/leucovorin 1 week on 3 weeks off. It seems that overseas this treatment is given in a different time/cycle than here in oz. Unfortunately I was one of the 1 in 1000 "oddballs" that had a hard time with chemo..the last 2 months being fairly severe. The cumulative effects had my chemo getting worse each time. Kinda strange but we all know here that everyone does get different reactions. I had an epidural during surgery which did not work...once again I was the 1 in 1,000 that had a bad reaction. Go figure?
For the time being you seem to be doing very well Betsy. The fact that you are doing meds different to me I hould tell you that what I experienced does not mean you will follow that path. I hope that you continue to do it well.....many do.

btw...I would'nt recommend mexican food either!....lol!
huggs, kanga n Jen

HisJoy · July 2005

Hi, Betsy! I have completed NINE out of 12 treatments following my surgery last January. The fatigue has definitely been cumulative and I experience it daily at this point, but the achy, flu-like symptoms reached their peak around treatment #5 or 6 for me. Diarrhea has become a part of life for me since about May, and I have it pretty much daily now, too. Sometimes, right afer treatment, it BURNS, but that doesn't last long and I just take Immodium. I also have the tingly neuropathy in response to cold, and that was getting BAD, so my onc gives me a drip of calcium and magnesium to mitigate that, and it has helped tremendously so that the neuropathy is only minor and lasts less than a week now.

Nausea is actually LESS now than it was at the beginning. I also suffered from insomnia for a couple nights on the 4th and 5th days after treatment, so I take Ambien just those two days. My "cocktail" consists of Avastin, oxaliplatin, leukovorin, 5fu, dekadron, and my magnesium/calcium drip every three weeks. I started on an "every 2 week" schedule, but my liver doesn't like the chemo and we had to go to every three weeks. Treatment #10 is coming up next Tuesday and I should finish up the week after Labor Day. *yea* I had Stage 3C colon cancer in the ascending colon with mets to 5/13 lymph nodes, but my type is signet ring cell, very fast-moving and aggressive, and so we are going with a very aggressive chemo, adding the Avastin. The Avastin causes some minor nosebleeds and shortness of breath, but that's been it so far.....Oh, yeah, I also had a blood clot which damaged my spleen, but not sure if that was from the chemo or the surgery or I'm just a lucky girl.

Best luck and stay in touch!!! My email address is bbuffing@earthlink.net, so feel free to contact me if you have other questions.

Betsydoglover · July 2005

Thanks all so much for your encouraging replies. I know I'll get through this with all your help.

Sadly, I did make the mistake of having a small amount of Chinese food (since I thought I felt so good). I'll spare you the details, but that was a definite mistake - thankfully I only ate a small amount! So, it's back to tea and toast etc. for a few more days, I think. Anyway, thanks again.

First Chemo

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