Hello and How Do and Oxiliplatin

[Annda]

Hi! I have just signed up to this wonderful forum. If only I could have found you guys four months ago!

I am 29 years old diagnosed with Stage III (until surgery) rectal cancer. I have finished up radiation and the first round of chemo (5FU pump 24/7 & two doses of Oxiliplatin) and am awaiting surgery. More chemo to last four months after surgery.

I will be having a hysterectomy during the surgery, as well as a temporary ostomy. Very nervous about the surgery, more nervous about leaving my five-year-old while I'm in the hospital. I have a great support team, and more importantly she has a great support team.

More than surgery, I am absolutely dreading the Oxiliplatin. I have considered asking my doctor if there's a substitute for this drug. I didn't experience so much of the numbness of my fingers and toes like most people, it was in my throat. I stayed *miserably* thirsty while on this drug. It was tolerable for a week after only two treatments. The thought of going through this for four months is most unbearable. I want to sit and cry because of it. I know I really shouldn't sound so "whiny" about this, because others have it way worse, but I just don't think I can take the constant thirst. Not for four months!

What do some of you recommend? Did anyone get by without having Oxiliplatin? Are there other drugs that will be just as good?

I'm looking forward to becoming part of the group, and I'm so happy I've found this place!

[helen098]

First of all welcome, don’t worry about anything you say here. Be sure if you feel or think something others are feeling the same thing now or have in the past. This site is a great place to say things your wouldn’t normally be able to say to your family and friends. I can’t offer you any option as I took 10 treatments of oxi before they stopped it because of my neuropathy. Ask you doc anyway if there is any other option or thing to lessen your effects. Do you have the cold sensitivity yet
from the oxi (mine started the first day on the way home.)
Just remember you are not alone

[Joy]

Hi: I also had stage III x 2 nodes rectal. Unfortunately I wasn't diagnosed until post-surgery so my chemo regime is slightly different fromn you.

2 rounds of oxi-5fu-lev.
28 rounds (continuous) 5FU and radiation
6 rounds of Oxi-5FU-Lev.

As you can see I had a total of 8 rounds of Oxi which was the prescribed regime for rectal cancer because of the 28 days of 5FU and radiation which I took.

I had some severe issues at round 2 of Oxi(spiked a very high temperature) my oncologist put me on a "slow" infuse and mega doses of steroids. I thought that I would not be able to continue with Oxi but my oncologist really monitored me carefully and apart from the "normal" issues caused by oxi I was very thankful that I could complete my treatment .

I'm 59 but I was determined to take the most "aggressive" treatment available and Folfox (oxi-5FU-Lev) is the gold standard for colonrectal cancer.

I had slight neuropathy during the last 2 treatments however the neuropathy didn't hit full force until almost 1 month after I completed treatment and has continued to this day.

I completed chemo October 2006 and I have been NED since.

Given all the "negative" aspects of Folfox I still am thankful that I could take this regime.

Folfox (oxi-5FU-Lev) is the gold standard for colonrectal cancer.

[bradyr]

Anna - first of all don't worry about sounding whiny about the side effects of the chemo. Everyone responds slightly differently and we all of different tolerances for various side effects. you need to be true to yourself as far as what you can stand and what you can't. don't be concerned that others may have tolerated this better.

2nd, as some others suggested, you should talk to you doctor about the side effects. their may be options to do a slightly lower dose, whihc could help. there may be other drugs that might help and there might be other pre-chemo prep steps you could take that might make this bettter. also, talk to the chemo nurses, they are a wealth of knowledge.

as far as the value of oxaliplatin. even with the side effects, which do suck, I feel grateful that I took it, I think it helped me. but there are other regiments that don't include oxaliplatin such as folfir that are equally good 1st line chemo treatmetns according to the literature. of course irridican in folfir brings it's own list of side effects, but you may tolerate those better than oxy.

the key is that it's not just about taking the drugs to live, you need to have a life while you're on chemo. for those of us in stage iv, we need to no only consider getting the maximum out of the chemo, but since we'll likely be on-off chemo for the rest of our lives, we need to be able to have some quality of life while we are still here.

if the oxy is hurting your quality of life, then that is something to consider. remember you do have options.

[klryder02]

Annda-

Hello, and welcome!!!

I am 27 and was diagnosed with CC last year, but don't have any children.

It is easier to say this now that I am done with Oxali for now, but I would strongly urge you to take as much Oxali as you can. Especially since you have a daughter. I could only take 10 rounds (was scheduled for 12), and I'm glad I did.

I have had FABULOUS results on all of my CAT scans, and I am convinced it is all because of Oxali and Avastin. Before I started chemo, and I had the tumor in my colon, with met. to lymph system. The pre-chemo CAT scan used the phrase "too many nodes in chest to count."

After 9 mos. of chem, my last CAT scan showed only one or two tumors left, and all the "too many nodes to count" are now gone. I will be switching to fulfiri before the years end, but I had good results with Folfox.

Oxali is a rough drug. It does crappy things to the body, but does those same things to cancer. It is hard to want to push through when the side effects are really bad, but if you can get through it now and get as much Oxali as you can, there is a good chance you won't have to worry about cancer as much in the future.

That is the one thing that gets me through chemo. I keep telling myself that if I can get through this hell now, my future will be better. That may not be the case, but it is my goal.

Good Luck!!!

[Traveler001]

Hello Annda,

There are some things that people have mentioned on the forum that they are doing to minimize the side effects of the Oxaliplatin. I would do a search here to see. Some supplements seem to help relieve the neuropathy and people have also had good luck with accupuncture. The Oncologist might have some ideas too.

On Friday I go in for my 2nd round. I too am afraid of the possibility of permanent effects from the Oxy and am taking steps to see what I can do to avoid them.

From round 1. I had one occasion where drinking cold juice had an effect. Not painful, but it felt like I was drinking rather fizzy soda. Also I felt the tingling in my fingers but it only lasted for 10 minutes or so. Later I felt like my arms and legs below the knees and elbows were numb. But it went away after an hour or less. I have not started doing anything to counteract any side effects, but am gearing up. Acupuncture, taking Vitamin B-Complex daily, and an amino acid that was mentioned in a different post are some possibilities..

As far as the drinking/thirsty problem, try drinking only warm/ room-temp liquids. Maybe thru a straw will help?

Hope this helps..

[Annda]

Wow! Thanks to all who responded, and who may respond after this.

Traveler: I do drink only room temperature liquids while I am on the Oxi. What doesn't go down hurting still doesn't seem to quench my thirst. Luckily this next round will be going into winter and during winter months, so maybe I won't stay as thirsty. It was a very hot summer here in Indiana!

Bradyr: Thanks for giving me permission to whine!

Klryder02: So happy for you things are going well! I will definitely keep your advice in mind while talking to my onc.

Joy: I salute you!

Helen: I appreciate the warm welcome and assurance I can say anything. I'm happy to have found this group!

I guess I will talk to my doctor and see what his thoughts are. I have a lot of faith in him and don't believe he'll steer me wrong!

Annda

[Hawaii]

I just finished my 5th round of eloxatin along with my other chemo drugs, and your right ,its not fun! But I'm trying to tough it out because I have read that it works so well. The first 2 treatments I had the cold sensation, so I drink room temp everything. Then after the next three treatments, my face from my chin up to my eyes are kinda numb always, a wierd sensation! Doc says he hasn't seen this before, so everyone reacts different. Good luck, you'll get through this, we all will!!

[seussfan]

I just finished my 7th round of chemo. My treatment does include Oxiplatin (sp?) and I haven't found it to be too awful. I have cold sensitivity in my hands, mouth and throat that lasts for 7 days from the first treatment. So I get one week of cold drinks before my next treatment.

My hair is thinning, but no one but me seems to notice. I do have a slight cramping in my hands on day 1, but then it goes away. they give you premeds for the nausea - and they will give you an Rx for nausea as well.

[RobinS]

Hi and Welcome Annda,

I had many of the same symptoms as others here with FolFox6 and Oxy. I finished my 12th round in late May '07 and had a dentist appointment in early June. Well, at that time I had severe thirst and dry mouth which was also causing lots of plaque. The hygentist suggested "Biotene" dry mouth toothpaste and rinse. You can buy them in pharmacies over the counter. She said some of the dry mouth is caused by chemo and medicines for side effects. I only used the toothpaste and it helped my dry mouth. Not very expensive and wouldn't hurt to try. While I still make sure I get plenty of fluids every day, I don't have that severe thirst.

Good luck,

Robin

[Carolyn JB]

Hi and Welcome! I did 10 rounds with the Oxali and it wasn't fun - for me the worst was not being able to drink anything room temp. or colder - EVERYTHING had to be heated up - I hated that. I knew I needed tokeep the fluids in me but nothing tasted good to drink! I would ahve my infusions every other monday and this would last until the following thurs., then I would be able to drink room temp again!

In may I had an almost 2 month break (for surgery) - I had done 7 treatments then a break then finished up with 3 more treatments and the side effects on the last 3 were different for me - I was able to drink room temp. this time - which was great. Althought the trade off on that is my fingers and toes are now numb.

I have a 6 year old - was 5 at the time of my diagnosis - and leaving her for the surgery was hard on me -even though she was in great hands, its still was hard! I went to Build a Bear and built her a bunny rabbit and then recorded my voice saying good nite to her. I had my parents give it to her the nite of my surgery and that seemed to really thrill her.

Carolyn

[FiG-S~]

I completed the full 12 rounds of Oxaliplatin. I too was very thirsty. I drank hot green tea and gatorade. Hot chocolate doesn't taste as bad either. I often ate toast to get rid of the nasty taste in my mouth. I also took fluids on the day I got unhooked. I highly recommend them, it decreased my thirst. Chemo dries everything up and I found out that the fluids also increased my energy.

[Magnolia]

HI,

I finished all 12 rounds of Folfox with Avastin and an additional 6 months of Avastin. the Oxaliplatin wasn't too bad. I had some pricklies and couldn't eat or drink cold stuff. I had trouble getting stuff out of the freezer and makng salads. I lost a lot of hair. Not all of it, but enough to look really ratty near the end of treatment, so I buzzed it off and got a wig. It's all back in now and poker straight. It used to be wavy. I also have a snow white skunk stripe on top which I cover with Clairol Herbal Whateveryoucallit. Pecan. I had some nausea, but not a lot. I got Decadron for nausea and it stimulated my appetite like crazy. Even when I felt sick I ate like a shark. I gained weight. I had one treatment held because of low counts. I got Neulasta and the counts came back up. I was off chemo for four weeks. I got diverticulitis twice. Rip roaring diaper rash once. I mean BAD!! From the antibiotics. I was running like a faucet, and I'm allergic to lanolin, found in most moist towelettes. Yeoowww!

One funny reaction to Oxaliplatin that some people get is jaw or ear pain when the eat something sour. It usually goes away a day or two after the treatment.

[Patrickscribe]

Hi. First time post, lurker for a few months...

I'm 38, diagnosed in March, surgery a week later, been on Folfox since May with 5FU/Leuc/Oxaliplatin every two weeks. I'm stage 2A, NED so it's all precautionary.

I got all three drugs through six rounds, then dropped oaxliplatin the last two (doses 7 and 8 out of 12 planned) because it was aggravating my liver. The enzyme levels are back close to normal so we'll likely resume oxaliplatin for dose 9 on Thursday.

The throat/cold feeling was the worst side effect. By the end of the six doses, that feeling didn't go away by my next dose. It was reduced, but still an issue. I could only handle room temperature. At first though, I'd have a week when I could drink cold things. (Man how I missed chugging ice water this summer!)

Neuropathy was mild, though by the end of dose 6 I felt a little numbness in my lips, tip of my nose and forehead and some in my fingers and tose. But it didn't hold me back much - I could still type and dial a phone and button shirts so the neuropathy didn't affect work.

- Patrick
Cleveland, OH

[sean]

I had liver enzyme elevation early on with FOFOX and was put on hold for a week because they got so high. The doctor was initially concerned that it might be the oxaliplatin, but it turns out it was actually the percoset I was taking for bad headaches and occasional bone pain. My doc switched me to oxycodone (dropping the Tylenol in the percoset) and the liver functions have been normal ever since. He tests my liver every week on chemo and one of the tip offs was that the liver enzymes were highest in the second week of the cycle.