Yikes - 2 Days Until Chemo

trouble sleeping from the pre-meds
I wanted to add since I noticed some discussion about not being able to sleep. I asked my Dr. for something to help me sleep since the Decadron (steroid) they give me before chemo makes me stay up all night sometimes. He gave me Ativan, I take one at bedtime and it allows me a good night sleep. We need our rest, and I don't like to take too much medication but between the side effects, ansomnia, and psychology of having this disease there is plenty to rob our sleep. If you have trouble sleeping don't feel guilty about asking for something to help, a good night sleep and we are strong and ready for the next days fight.

Take care, and don't just count sheep.

Mike

Buzzard said:

side effects.....
First off let me welcome you to a place no one really wants to join. Secondly , there is a wealth of info here and only come here for info. Stay off the other websites for they will only scare you to death. They are way behind in facts and usually are 2-5 years from being updated so stay away from those.
Oxiliplatin........cold sensitivity, not just minor, major, especially right after infusion. It is like your hand freezing not slowly but immediately when you touch something cold....about 50* is my thresh hold...No cold drinks, it will hurt bad.. You will get use to what you can and can't drink or eat. Being outside in the cold makes my lips start getting numb like I have been to the dentist . It may not effect you as bad but it will be noticeable. Nausea is pretty bad for me also. I tried Compazine, Zofran, Anzemet, and now Emend and the Emend is doing an OK job but Im still nauseous. I have 5 more treatments and Im done and I can't wait to get off this.....I just figure that every other week is going to be a sick one and just do it and move on. You have 6 treatments. That will pass by quickly......Good Luck and God Bless......

Such a Rebel
I had to laugh when I read in your comment "no cold drinks". My oncologist told me the same thing. Me being the idiot, rebel or whatever you want to call it had to try it anyway just to see what he was talking about. I think idiot is more appropriate than rebel now that I think about it! As soon as the cold hit my throat it tightened and closed and I gagged and spewed it all back up. Needless to say that was the last time I "touched the hot stove when told not to touch because it's hot". hehehe

taraHK said:

I'm on that regime
Hi. I have been on the exact same regime (XELOX).

As you may already be aware, oxaliplatin has some strange side effects including (for most but not all people): sensitivity to cold (drinking, touching), neuropathy (tingly pain) in fingers toes, "jaw spasm" (sore feeling in jaw on first bite of food - may just last a day or 3).

Side effects of xeloda seem (to me) to be: mild fatigue, mild nausea, maybe a bit of hair loss and, for some people, hand/foot syndrome (peeling skin or blisters on soles of feet, palms of hand).

I think it is great that your doc has pts attend a session beforehand. Great idea. I imagine this will ease your nerves some.

I think one of the most important things is to let your doctor/nurses know of any side effects you are having -- they can ofter suggest things to help....And certainly if you experience anything extreme (extreme diarrhea, for example), you should let them know immediately....

Many people sail through with pretty minimal side effects -- and I certainly hope you are one of them!

Tara

Yes, yes, yes, do report
Yes, yes, yes, do report your side effects to your doctor right away! I had EXTREME diahrrea with Xeloda and thought it was normal. I was wearing diapers and had a bit of a problem with getting the radiation as I literally couldn't take the diapers off. It was horrible but I thought it was normal. I had no idea that I should have called my doctor. After weeks of this and severe dehydration and getting to the point where I couldn't lift my head or get out of bed, I called him and he stopped the Xeloda right away. Turns out that my body is missing the enzyme that's needed to break down the drug and make it effective. I was getting huge overdoses and it made soup out of my insides. If it doesn't seem normal to you, check it out and question what normal should be! I don't think you have anything to worry about as my doctor said it's rather rare that this happens but do be aware that if you're feeling this way to check it out. Don't mean to be a downer or scare you, most don't have symptoms like this, just want you to be aware and not in the dark like I was. Wishing you a smooth ride!

daydreamer110761 said:

I am SO jealous
Of everyone that lives in Arizona, California, etc. Born and rained in Philly, lived in Florida for 16 years, and then proceeded to move to Minnesota for love! With our temps being 21 BELOW zero last week - it truly felt like hell froze over! Fortunate for me Nick had a remote start put in my truck as a Christmas gift just the week before!

The side effects of the tingly hands and feet are horrible here, they start immediately when the drip starts for me, and then tend to last until about 5 days after. It never goes completely away, and imagine - I ground meat to make hamburgers, and then stood there staring at it in tears when I realized there was no way I was putting my hands in that cold meat!

I also got the tight jaw thing (thought it was my imagination), and my eyes bother me as far as tearing up and feeling sort of frozen. I feel like it's melting brain cells and foget what I went into a room for or a word in the middle of a sentence gets left out. The first round sent me right in the bathroom the morning after the IV was removed, and I learned to take immodium the night before and the morning of. Everyone is right about the steroid - I get Decadron in a syringe with the anti-nausea med. I am tired when I get home but no way can I sleep - feel more like cleaning something but don't want to move around much with the pump.

Good luck - and welcome to the forum - I guess - these guys are great support - they let me spout alot!

Heating Pad
One of the things that REALLY helped me a lot with the tingly and cold sensativity was to take a heating pad with me to my chemo appointments. I wrapped the warm pad around my hand (pre port) and not only did it lessen the discomfort of the drug going into my arm but the affects after seemed to be lessened as well. They didn't completely abate but it made a huge difference.

Jorie

maglets said:

so glad
I am so happy to see this thread move forward. I almost feel jealous that my oxy has been postponed till after colonoscopy...there are so many good tips and experiences happening right now. Jorie I love the heating pad idea. Our temperatures are dipping to -20 also and in the morning our house is about 49 degrees. Guess I'll get those gloves ready.

All very best wishes and hugs to all the chemo-ites
Hopefully joining you soon
Mags

xeloda
Paula I too kept a record of side effects. I was on xeloda for 8 months as the only chemo so I didn't have to guess which chemo was giving the side effect. I found I had abdominal soreness and all the scar tissue on my belly....from numerous surgeries....would really ache.

I had trouble sleeping just from the xeloda alone.

I did try to get out for a walk every day and always felt less nausea.
Just some thought.


All best wishes and hugs to you
Mag

MoonDragon said:

Heating Pad
One thing that really helped me with the cold sensitivity especially during the drip was to wrap a heating pad around my wrist where the needle entered my skin. It was a huge help and alleviated alot of the tingling sensation both during and after.

PAIN
Hi, I have a question for you. I just started on my OXY and Xeloda but i don't have a power port. I had my iv done 3 days ago and still hurts like crazy. Do you have a port and would you recomend one to be put in. I still have 7 more cycles to do and i am thinking if should put on in or not. Thanks in advance
Edgar43


COLON CANCER STAGE 2
NEWLY DX IN NOV 2007

Stay strong!
While I am now only an occasional visitor to this board, your story matches mine very closely from 5 years ago. So many of your questions strike a chord for me!
I was diagnosed with 1 cancerous polyp on my baseline colonscopy in Nov '03, CT scan showed nothing, CEA very low, then, BAM! one positive node. I didn't see any of this coming and could not believe the news. Didn't help that I had recently lost my dad to metastatic colon cancer. My surgeon framed it very positively, that we were going in to nuke any lurking cells, and I'd be fine.
I shared your anxiety about chemo, while trying to stay positive for hubby and high school age kids. At the time, Oxali was just coming out of trials (the dark ages!), so my treatment was only 5FU (love that FU thing!) and leuco. I switched oncs when I felt I would slug mine each time he referred to it as "chemo lite"; I was sooooo fatigued after 2 months, I just longed to be horizontal and watch the ceilng!
Fast forward 5 years; I remain No Evidence of Disease since surgery; finished chemo in July of 04, and am relieved and grateful to pass every milestone. There were some bumps along the way with side effects, but you have gotten lots of great advice here. I LIVED on these boards at the time, and the support was VITAL. I couldn't thank my buddies from that time enough.
I have a colonoscopy scheduled in 2 weeks; every test still gives me the jitters, but I know that life goes on and we have to all play the cards we are dealt. I am grateful to see this day, and plan on many more!
Stay strong and focused; you will get through this, one day, one treatment at a time.
Judy (who looks back with gratitude and relief to 5 years ago!)