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Yikes - 2 Days Until Chemo

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

In October 2008, a colonoscopy found and removed one polyp. A week later I got the call that it had gone bad, cancer, oh no. In November I had a sigmoid colectomy to remove the section of colon. All signs were that that would be the end of it but 'no' tiny amounts of cancer were found in two lymph nodes. Great! Chemo to worry about. December 30 I had a Power Port inserted and I am scheduled to start treatment on Monday, January 5th. My doctor's drugs of choice are Oxaliplatin (IV) on day one and Xeloda (orally) days one through fourteen. I get one week off drugs before starting again. Six rounds. I am most apprehensive about what side effects I will experience. My hospital/doctor has cancer patients attend a chemo class before starting therapy and the RN leading the class provided good information and tried to ease our nerves. (Is that possible?) I guess I will find out soon enough. Hope all of you out there have a Healty and Happy New Year. Wish me luck.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

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......

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

Thanks so much for your reply and comments. You know, I am trying to stay away from the other forums and internet sites. You are right, they will sacre me to death. I have been told about the cold sensitivity. My RN suggested keeping gloves tied to the refer so I don't forget and reach in. The cold drinks are going to be hard to get used to but I will, quickly. I also have been given Compazine and Zofran, hopefully, they will work for me. From the comments I have received, it sounds like the coldness is only really bad for the first couple days. The Xeloda will have a new set of possibilities. I'm glad to hear you are down to 5 more treatments. Hope all goes well. Stay in touch.

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

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

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I HAD to try a freezie pop! BIG mistake! It took me 2 years after that episode to even be able to LOOK at a freezie pop after that! :)
mary

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

Reading your comment made me smile. I swear, I'm dying for a cold diet coke. Almost two weeks since my first IV with oxy and the sensitivity is a little better. I can drink room temp water and no longer have to heat my water in the microwave. 1/26 is the start of round 2 so I suppose it will start all over again.

polarprincess
Posts: 210
Joined: Aug 2008

welcome here... i like you also had a malignant polyp although had 1 lymph node positive. Mine was close to rectal so i had radiation and they recommended 4-6 months of chemo. I am doing the 6 months. You are fotunate to only have to do 6 rounds. That would be awesome. I am assuming you are stage IIIa? (polyp was T1 or T2?) Everyone has different side effects from the chemo, but our regimen is definitely easier than some out there..I have never tried Xeloda, but not being tied to the pump will be nice for you. Good luck

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hi... and welcome! It's not like anyone wants to be hunting for a "support" forum for something like cancer, but when you do need one, well consider yourself lucky to have found the best one around :)

Everyone reacts differently to the various chemo drugs and even if you are on the exact same kind and dosage as someone else, you will find that your reactions differ from theirs. I think that's why people get so scared when they hear the words "chemo" or "chemotherapy". Since everyone does react differently, the drug companies have to list every possible side affect, known to mankind... basically to cover their butt.

In reality, the reactions are usually never as bad as your imagination imagines they will be and there may be 30 possible side affects listed and you end up with only one or two of them... and mild ones at that. Unfortunately, there are those who get hit bad with some of them, but that is not the norm.

I had the Oxaliplatin which is a standard chemo used, usually in combination with another one (in your case, the oral Xeloda). I was on Oxaliplatin combined with 5-FU for 8 months. Well, I only managed 6 1/2 months of the Oxaliplatin because the sensitivity to cold was just too much for me... and this was in the summer! I also got some pretty severe neuropathy (numbing/nerve damage) in my feet, which seems to have gotten worse since I've been off the chemo for a year. Like I say, your mileage will vary depending on your own system.

But you will do just fine with 6 rounds! It took me at least 10 rounds before I started getting any kind of neuropathy. As for the sensitivity to cold... it will happen for sure when you are getting the IV infusion of Oxaliplatin and will probably last for 2-3 days where you want to be real careful about anything cold. I'm not sure where you live but if your winters are colder than 60F, you are going to want to be really bundled up to go outside. Just breathing cool air can affect your throat, of all things! But don't panic if you get this sensitivity to cold. It will pass and after a couple of days, you can go back to eating/drinking/touching cold things again :) And I would bet after 6 rounds, that won't be enough to do any kind of permanent nerve damage in your hands or feet.

Now that you have found us... do keep coming back! I'm sure you will have more questions as time goes on... and here is the place to get the best answers because people here have been through what you are asking about :)

Huggggs,

Cheryl

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

Boy, you were right about the cold sensitivity. I had been told about it but it was so quick. I have gloves all over the house and it's amazing that everything seems cold. I'm hoping, like you, the sensitivity will lessen after a few days. This afternoon the sun was out and it was pretty warm out, maybe 55 or so. It felt so good to sit in the sun for a few minutes. I also have been experiencing jaw pain. The first bite of anything I eat makes my jaw hurt for just a minutes. Also, I coughed and got the same type of pain around my eyes. I just hope I start sleeping better. I don't know if it was the drugs or what but I was so exhausted when I got home from the hospital yesterday and I was sure I would sleep great. Wrong. Hopefully, tonight will be better. Thanks for your comments!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey PCS :)

Yep... the jaw pain is a common side affect too. I didn't have that one myself, but many others have commented on it. As for coughing and getting the same pain around the eyes... I found my eyes to be dry while on it, so they always felt like I needed to blink more. When you see your oncologist, he/she will ask if you've had any side affects. I would write them down now as you experience them because when you are talking to him/her you are bound to forget some of them... or you'll be so relieved that they weren't as bad as you thought, you'll end up saying, "No, I actually feel great!" :D Your onc should be aware of any and all side affects you have because if they do gradually start getting worse, they can adjust your levels.

The one thing my oncologist said to me... throughout your treatment, there is no reason you should ever feel in pain, or uncomfortable. For every side affect, there is a med to counteract it... but you have to tell me what you are feeling so I can fix it for you. And sure enough, she did :)

I'm guessing here but have they got you on an oral steroid for when you are getting the Oxi? The reason I ask... the steroid can make you stay awake, even though you know you are tired! It's crazy, but the chemo can tire you and the steroid gives you a buzz... so the two fight each other :) But the steroid isn't for the whole two weeks, so that should calm down :)

Huggggs,

Cheryl

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

Thanks for the advice Cheryl. I will be sure to let my onc know of any issues with side effects. I am keeping a log of day to day activities, how I feel, side effects, etc. because I know it is hard to remember everything.

You asked about steroids. When I showed up for chemo the first 30 minute bag was steroids. Maybe that is what kept me awake. My next round will be earlier in the day so maybe it will wear off by bed time. I took a couple Tylenol PMs last night and did get a pretty good nights sleep.

Hugs to you Cheryl, Stay well, Paula
MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

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. :)

EDGAR43
Posts: 5
Joined: Dec 2008

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

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Edgar, I had to chime in on this one; if you have any inclination to get a port, DO IT! I went through nearly one round of 5FU and Leuco back over 4 yrs ago, and my veins were screaming after each infusion. What a difference the port made; not sure why my onc didn't recommend it (I had "great" veins?!), but the onc nurses were pretty clearly in favor. Another benefit was that the infusion went a bit faster, too....less time in the "chemo pit"!
Best of luck,
Judy

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

I want to wish you the very very best ....this forum really does seem to have a wealth of people with so much love and experience. I will be starting the exact same routine as you in 2 weeks and I too have the worst nerves about it......and I have done chemo before....twice before. I think it is perfectly normal to feel unsure about the whole thing and I always think it's easier once you are actually into it rather than just worrying about it.

I hope you'll stay in touch
You are going to do just fine.

Big Hugs
Mags

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

This is your third round, good luck to you! I will stay in touch. This is a great place for support. First infusion out of the way so at least I know what to expect. So many of the comments make me feel the Xeloda may not be too bad. I guess I will find out soon. So far so good.

taraHK
Posts: 1961
Joined: Aug 2003

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

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

You are right on about the oxy side effects. I've just been saying that on the firt bite of anything I eat I get the jaw pain. Coughing sends pain around my eyes. Tonight will be my 4th dose of xeloda, but so far so good. I think the anti nausea meds must work, no nausea so far. Time will tell as I get further into treatment but I certainly am hoping I will be one who sails through. Thanks Tara!

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

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!

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi. Welcome to our group! I think you'll find it very helpful and comforting. I'm sorry about this ugly turn of events in your life, but I do hope and pray you won't have too bad a time of it. Keep us posted as you feel well enough.

*hugs*
Gail

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

Thanks for the welcome. It is great to have a place to find support and comfort. I will keep you posted. Paula

polarprincess
Posts: 210
Joined: Aug 2008

I have been unlucky in that the side effects from Oxaliplatin for me last the whole 2 weeks not just a couple days like others have mentioned, and it makes me crazy...but when i feel i can't take it anymore i read Lance Armstrong's book. Our regimen compared to the hell he had to go through is what makes me able to handle it.

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

Wow, so many different things can happen and I know everyone agrees no two react exactly the same. I guess in a way I am lucky that I am not on a pump but who knows if the other options are any better. I'll let you know. I should keep Lance's book in mind. He has been through a lot and gone on to acheive so much. In answer to your question, yes, I am stage 3. Not sure about the T question. I'd have to go back and check my paperwork. Being a polorprincess makes me think you are from the far north. How in the heck do you stay warm. Here in Sacramento, CA it is pretty cold right now so it sounds like I am going to be staying in a lot. Should I get a WII to give me some exercise? I'll check back with you. Take Care and thanks for your reply.

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

You've already received alot of advice and I'll only add one thing, think long term, we can beat this thing, live your life along the way. There will be days that you don't feel good, sure, but don't forget to still do things and live your life, it will help you enormously with the psychology of this disease. I took my two sons to the golf course yesterday, here in Arizona its in the 70s and although I got a little tired but I needed to do something normal, our lives are bigger than just chemo and tests. Good luck, your apprehension of starting is normal, I remember the first infusion, in my mind I thought I'd feel awful immediately, it was better than I thought it would be.

Good luck.

Mike

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

Hi Mike,

You are so right, attitude is everything and I am trying to stay positive and look at the big picture. I went in yesterday for my first infusion. Getting hooked up with my port was quick and painless. After the RN talked for a few minutes a pharmacist came over to talk. She said the same things you said. If you feel OK there is no reason you can't get out and do what you feel like. I intend to do what I can and get out of the house. If I do OK, it would be great to head to Scottsdale in March for a few days and watch some baseball. My husband would love to go again.

I really didn't feel too bad today. It wasn't as bad as I thought it would be. Mostly, just tired. With any luck I'll be out getting some exercise soon.

Paula

pamness
Posts: 515
Joined: Nov 2007

I am from California, all my brothers and sister and their significant others live in the East Bay, in California. I was born in San Francisco.

I currently live in Boston and was diagnosed stage IIIA - one polyp and two lymph nodes (out of 19) positive. I had a colon resection, 6 rounds of folfox (oxalyplatin, levorcin and 5FU, by . Pretty standard treatment, as I understand it for stage 3A colon cancer.

I was lucky, I had the jaw pain for the first bite - ick, ick, ick. I didn't have huge cold sensitivity in my hands or feet in the beginning. I had my chemo in the spring. I did get neuropathy in my hands and feet after four rounds.

I was scheduled for eight rounds of folfox and finished six with the oxaliplatin and the last two with the leucovorin and 5fu. I finished all the radiation and 5fu. I am currently 17 months ned.

I had a lot of trouble with the oxaliplatin. Nausea was a big deal. You seem to be doing well.

All the treatment does make you tired. Some of the anti-nausea drugs make you tired and some - the steroids - make you wired. I hope that eventually you will find what is right for you.

By all means, go out and do whatever you feel like doing - wash your hands often, when in a crowded environment and enjoy. If you are really tired, rest.

Sounds like you are doing really well. The first chemo is an experience that most of us will never forget - lots of anxiety, and then -- not so bad - I am saying that even though I had a little difficulty.

Hope all goes really well,

Pam

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pcs1453's picture
pcs1453
Posts: 76
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Hi Nana,

Sounds like your climate is similar to mine in Sacramento. It is cold and foggy. One thing I have discovered is that room temperature water is still too cold. I've been warming my water in the microwave. Funny how the littlest things can make a difference. One other thing I've learned, it's difficult to make a salad with gloves on.

Good luck tomorrow. Take Care, Paula

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Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

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

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daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

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!

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

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's picture
maglets
Posts: 2596
Joined: Jun 2006

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

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

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

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

At my cancer center they offer heat pads to everyone who has the IV in the hand/arm. Most used them. These are the ones you heat in a microwave, but they stay hot a long time. It helps I am told...I have a port, so I didn't have the IV.

Vicki

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

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!)

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

Hi Judy, I am so happy for you that you have had no further problems. It is so encourging to hear good news. If I could fast forward 5 years, I will be saying the same thing (with a little luck). I think with every year that passes progess is made with the chemo drugs. The oxy does have it's side effects but there are more drugs given to help combat them. I have only have one round but it wasn't too bad. I'm hoping that will continue to be the case. The oral drugs, Xeloda, is changed in the body to 5-FU. Every dose I take, twice a day, I also take 1 zofran to prevent nausea. Again, so far not too many problems. Time will tell if the side effects will worsen but I am keeping a good attitude and am trying to stay active. Thanks for sharing your story. Paula

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

Hi Judy, I am so happy for you that you have had no further problems. It is so encourging to hear good news. If I could fast forward 5 years, I will be saying the same thing (with a little luck). I think with every year that passes progess is made with the chemo drugs. The oxy does have it's side effects but there are more drugs given to help combat them. I have only have one round but it wasn't too bad. I'm hoping that will continue to be the case. The oral drugs, Xeloda, is changed in the body to 5-FU. Every dose I take, twice a day, I also take 1 zofran to prevent nausea. Again, so far not too many problems. Time will tell if the side effects will worsen but I am keeping a good attitude and am trying to stay active. Thanks for sharing your story. Paula

pcs1453's picture
pcs1453
Posts: 76
Joined: Dec 2008

Hi Edgar, For my first infusion, I knew the port was going to be so much better then dealing with an IV in my arm every three weeks. It was my understanding that oxy was really hard on the veins, thus, the reason for the port. I have pretty much healed from the procedure of having the port put in (except for the scar) and I hardly notice it is there. I go in Monday for my second infusion and it will be so quick and easy to get hooked up. I would recommend the port if you can. Best of luck. Paula

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