Chemotherapy Side Effects - HELP

nudgie
nudgie Member Posts: 1,478 Member
edited March 2014 in Colorectal Cancer #1
I am 42 and had a Stage II (NO, MX) colon cancer tumor removed on 10 July 06. I have an ostomy also which will be reconnected sometime in March. I was told by my doctors and family that I should undergo a chemotherapy treatment for precautionary and insurance measures to REALLY make sure that there are no cancer cells floating in my body. I was told I would be treated using the FLOFOX regime which consists of 5-FU, Oxiplatin and Levoroun. I started this treatment on 18 August 06. It is given every other week for 6 months. This Friday, 15 September 06 will be my third.

I am VERY scared and nervous about all the side effects that can happen especially the low blood and palate counts. I think the Docs play a guessing game with these, correct?

After two treatments I have had the following side effects come and go:

Finger tingling
Burning in chest
Throat discomfort
Body tingling
Jaw pain
Muscle aches
Got real flush (red) on face & neck only
Breathing changes (no shortness of breath)
Chest discomfort (sometimes tightness)
Tiredness
Headaches (sometimes)
Sleep only 4-5 hours a night

Now that you know my history my question is: Do the side effects of this Regime get worse with each treatment or basically stay the same?

Comments

  • spongebob
    spongebob Member Posts: 2,565 Member
    nudgie -

    Chemo treats everyone differently. The symptoms you have described sound like typical side effects. It is interesting to see your docs using oxaliplatin as a prophylactic chemo regime for stage 2. That treatment, however, does seem to be becoming more common. Back inthe day, there was NO chemo for stage 2.

    I urge you to discuss your symptoms with your doctor. S/he may change your dosage, my eliminate the oxaliplatin from your chemo regime, or may feel that the benefits outweigh the symptoms you are experiencing.

    Most importantly, remember that you are the person who is in control of your treatment. You have final veto authority and you have the option to seek out a second and third opinion if you are not satisfied with what you are being told. I wouldn't say your doc is playing a guessing game - s/he knows that chemo treats everyone differently, but may be unaware of how the chemo is treating you. You need to make your doc aware of what is going on so that you can work together to find the best treatment for you.

    Keeping you in my prayers.

    - SpongeBob
  • KathiM
    KathiM Member Posts: 8,028 Member
    spongebob said:

    nudgie -

    Chemo treats everyone differently. The symptoms you have described sound like typical side effects. It is interesting to see your docs using oxaliplatin as a prophylactic chemo regime for stage 2. That treatment, however, does seem to be becoming more common. Back inthe day, there was NO chemo for stage 2.

    I urge you to discuss your symptoms with your doctor. S/he may change your dosage, my eliminate the oxaliplatin from your chemo regime, or may feel that the benefits outweigh the symptoms you are experiencing.

    Most importantly, remember that you are the person who is in control of your treatment. You have final veto authority and you have the option to seek out a second and third opinion if you are not satisfied with what you are being told. I wouldn't say your doc is playing a guessing game - s/he knows that chemo treats everyone differently, but may be unaware of how the chemo is treating you. You need to make your doc aware of what is going on so that you can work together to find the best treatment for you.

    Keeping you in my prayers.

    - SpongeBob

    I agree with my VERY smart dad! If you don't call and tell your onc, they don't know you are having troubles.....that said:

    WATER WATER WATER WATER WATER WATER WATER!!!!

    With any of the 'heavy metal' chemos, you want to flush them asap from your system....tingles happened to me with 5FU and Taxol....a year later, NO lasting sides...just this wierd feeling waiting for the 3rd shoe to drop....dealing with this being 'all in my head'!

    I picture the runaway cells as dust bunnies...wierd, huh (see my note above about all in my head...sigh). BUT a person MUST let their treating docs know....do NOT be a hero...there are major drugs out there for EVERY side...use them!!!!

    Hugs, Kathi
  • JADot
    JADot Member Posts: 709 Member
    Hi Nudgie:

    Well, the good news is that all those side effects go away. Someday they'll be a distant memory. For now, yup, it's not the greatest feeling. I was a stage II who took adjuvant chemo, the good ol' FOLFOX. I had most of the symptoms you mentioned below plus a few. So let me give you an itemized list of how I dealt with it, other than just grin and bear it:

    - Finger tingling - This is classic Oxaliplatin peripheral nuropathy. My onc recommended 200mg of B6 vitamin daily, which seemed to help. You probably also have cold sensitivity too. I had to wear gloves to cut veggies from the fridge.


    - Burning in chest - hmmm, didn't have a lot of this myself. Could be some sort of anxiety related symptoms. Would be a good one to ask your onc about.

    - Throat discomfort - #2 classic oxaliplatin cold sensitivity. I couldn't even drink room temp water w/o upsetting my throat. So, it's time to nurture the inner herbal tea drinker :)

    - Body tingling - Didn't experience this one.

    - Jaw pain - This is a common one, I think it has to do with Oxaliplatin too.

    - Muscle aches - I had this, but generally found it helpful to get some mild exercise when I could.

    - Got real flush (red) on face & neck only - aha! I had this big time. In my case, it was due to the steroids that's in the nausea drug Decadrone (sp?). I hated the idea of taking steroids so much that I opted out of the nausea drug and chose to throw up instead. That clear the hot flashes and glowing face immediately.

    - Breathing changes (no shortness of breath)- didn't notice this myself.

    - Chest discomfort (sometimes tightness)- Another good one to talk to your onc about. Again, what I found is that exercise really really really helps with general state of wellness.

    - Tiredness - Fatigue is the most common chemo side-effects. So, while tired, just sleep. Keep in mind that you need your immune system and your immune system only rebuild when you're sleeping. So when you're tired, that's your body trying to tell you something. Don't fight it. Grab a nap any time of the day when you need it and if it's possible.


    - Headaches (sometimes) - Probably because you're not sleeping well?

    - Sleep only 4-5 hours a night - yup, that's the steroids doing its thing. Again, I found the idea of no sleep, low resistance so terrifying that I just told them to take me off the steroids. You didn't mention sever nausea, which means that the nausea drugs are keeping nausea away pretty well. So you have to decide what's the lesser of 2 evils - throwing up or taking steroids and can't sleep.

    - Now that you know my history my question is: Do the side effects of this Regime get worse with each treatment or basically stay the same?

    The nuropathy gets worse with more treatments. At some point your body will say "enough". You will know when that happens. Mine happened on the 8th round. But then there are some nice surprises too - I ate like a horse and quickly gained back all the weight I lost....unfotunately some of that chemo fat is still with me. Then again, I take not wasting away on chemo as a personal triumph. So fat is good :)

    Best of luck to you and keep us posted on your progress.

    Cheers,
    JADot
  • Patrusha
    Patrusha Member Posts: 487
    Nudgie, I think JADot answered pretty well point by point, but I have something to add on the Burning in Chest and Chest Pain symptom.

    Do you experience this burning or chest pain when you swallow something?

    I had that and my doctor said it could be damage to the esophogus from the chemo or else a thrush infection. They gave me a "magic mouthwash" that includes nystatin and lidocaine (plus two other ingredients) that seemed to take care of that symptom in 24 hours. They also took a chest Xray to be sure there wasn't something nodual going on.

    Call your oncs and get it checked out.

    I'm doing my second round tomorrow. I'll be thinking of you!
  • terril
    terril Member Posts: 296
    Hi!!
    My side effects include fatigue, neuropathy (like electric shocks with cold things with hands and throat), nose bleeds, and severe stomach cramps. My onc said the stomach cramps are very rare, but he has seen it with this drug combination. To be honest with you...this chemo regiment has been hell for me. This Tuesday I will receive number 4. I am sick a lot, and the stomach cramps are incredible. My first bout with this lasted for 8 hours. I also had vomitting with the cramps. Gross!!!!!! I now have medication to help with the cramps. My blood counts are great, though. Everybody reacts differently to chemo. I know some people that sailed through oxlaiplatin with few problems. I also know others that had a rough time like me. Cancer sucks. Good luck. My prayers and thoughts are with you so you can endure this chemo. Terri