New to the forum - nervous about oxiloplatin

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AG1
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New to the forum - nervous about oxiloplatin

Postby AG1 » Thu Jan 19, 2012 1:16 am

Hi,

I'm new to this board. Diagnosed in 7/11 with stage 3 rectal cancer. Had 5.5 weeks radiation with Xeloda, then laparoscopic surgery (no colostomy) in November 2011. Pathology came out "clean" after surgery, but I am starting chemo next Monday (six rounds oxiloplatin and Xeloda pills) to kill off any cancer cells that might have strayed away.

I am not too worried about Xeloda, as I was able to work and exercise throughout most of the duration of the radiation/Xeloda treatment. However, I AM nervous about the oxiloplatin infusions. I was told that the infusion/IV itself was particularly painful (the nurse said I should consider a device that is implanted in the chest to prevent the pain) and I don't quite understand what is meant by the sensitivity to cold and the possible inability to breathe due to this sensitivity. I'd love to hear your thoughts on the side effects of oxiloplatin (I did read some of the other posts).

Thank you,
AG
AG, 49 Y.O., female
Diagnosed 7/11 at age 48, rectal cancer, stage IIIA (2 lymph nodes)
Radiation/Xeloda (5.5 weeks - 8/11 and 9/11)
Laparoscopic surgery 11/11, clean pathology
Chemo starting 1/23/12

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horizon
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Re: New to the forum - nervous about oxiloplatin

Postby horizon » Thu Jan 19, 2012 2:08 am

AG1 wrote:I am not too worried about Xeloda, as I was able to work and exercise throughout most of the duration of the radiation/Xeloda treatment. However, I AM nervous about the oxiloplatin infusions.


I was able to do that on Xeloda and Oxi. I had an infusion on Wed and stayed home through Sunday. By Monday I was back at work and the gym. I was *very* nervous before I started Oxi too. Each person reacts differently. Just try and wait and see how you'll do.

I was told that the infusion/IV itself was particularly painful (the nurse said I should consider a device that is implanted in the chest to prevent the pain)


She's talking about a port. Initially I said "no way" to getting one but I changed my mind (thanks to this forum) and I'm glad that I did.

viewtopic.php?f=1&t=24924&hilit=+port

and I don't quite understand what is meant by the sensitivity to cold and the possible inability to breathe due to this sensitivity. I'd love to hear your thoughts on the side effects of oxiloplatin (I did read some of the other posts).


Your hands will go numb if you pick up anything cold. You hands tingle when you wash them in the water from the sink. Supposedly if you drink cold liquids it is very painful and can cause the breathing problem. I never found out. I couldn't even tolerate water from the tap. I had to microwave my water.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

Georgie
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Re: New to the forum - nervous about oxiloplatin

Postby Georgie » Thu Jan 19, 2012 2:34 am

I had delightful... cold sensitivity from the oxi. Whenever I touched anything cold (even washed my hands in cold water) it felt like I was cradling shards of glass. Same when my feet got cold. And when I put anything cold in my mouth I felt it on my tongue.

I was also really nauseous and tired for 5-7 days post infusion. And I had really bad headaches - was on panadeine forte daily.

But, everyone is different. Goodluck with your treatment.

Georgie
Nuclear Medicine/PET Tech
Stage 3 T4N1M0 Rectal Ca diag 1/11 at age 29
Clinical trial (chemoradiation) 12 wks incl FOLFOX
Surgery 14 June '11
Post op infection
Iliostomy reversal 12 Sept '11
NED 6 years!
2017 Stage II Breast cancer triple positive
BRCA2 mutation
Bilateral mastectomy, chemo, herceptin

esk2poo
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Re: New to the forum - nervous about oxiloplatin

Postby esk2poo » Thu Jan 19, 2012 4:58 am

Hello,
I am in the middle of my 6th folfox treatment with oxilaplatin. I take 4 anti emetics and thank god
i have not gotten sick once. My problems have all been bowel related but we have that straightened out now and I stayed out of the hospital for treatment for dehydartion for #'s 3 and 4. Back in for 9 days after # 5 but that was for DVT's, blood clots in legs. 90% of us get that and that is now being taken care of with medicine. The oxi is an accumulative effect medicine so it started out mild but has increased in intensity and longevity. Same feelings for hand and feet as posted above but I also get a pain in my jaw for the first bite of food that goes away. Saw that posted previously. Last night was a first for this one. I live in the Norheast and it was windy and cold last night. I took my daughter to basketball practice last night and had a terrible experience. I have been gettin pains in my eyes when I let my mind wander and I get a little teary but when I stepped out of the car and the wind hit my eyes, I had a severe pain and everything went comlpetely black. Had to have my daughter walk me in to the school whre I finally got my sigh back after a minute. When we left, I wouldn't even open my eyes until we were in the car. I have also seen posts on the eye pain before. I am scheduled for 12 rounds but my onc says most people only make it to 8 or 9 before they stop it because of the side effects. Everyone does experience different side effects and I plan on trying to complete all 12 rounds. I am postive and want to be NED for life but this wonderful journey we are all on really sucks. Praying for you and all here in the club.
Allen
Dx 8/23/11 stage 3b crc
3 of 11 LN's
resection 9/15/11
folfox start 10/31/11 12 sessions
De-ported 6/2012
clear CT 7/2012
Clear colonoscopy 9/2012

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KarMel
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Re: New to the forum - nervous about oxiloplatin

Postby KarMel » Thu Jan 19, 2012 5:34 am

I can't tell you if the infusion is painful if you get it thru your regular veins. I had the device in my chest. After you get your first infusion thru your regular veins, if it is terribly painful, you could then decide to get a port.

Ports are just very conveninent. You can also get yyour routine blood work drawn thru them, if you choose. If you are a hard stick, when it comes to getting blood draws or IV's, you should definitely consider it.

The cold sensitivity is very real. To avoid it, don't touch or drink anything cold for about a week after infusion. Wear socks all the time in your home. WEar gloves, hat, and scarf when you go outside in cold weather. It does feel like you are drinking broken glass if you slip up. But if you immediately can swallow something warm, the feeling goes away quickly. That is my experience .

Six treatments isn't much. Will be over before you know it. Hang in there and come back often for advice.
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

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Sunwaterandsky
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Re: New to the forum - nervous about oxiloplatin

Postby Sunwaterandsky » Thu Jan 19, 2012 5:48 am

I had my first Oxaliplatin infusion through an IV in my hand and it caused damage to my arm that took almost two months to completely go away. I would not recommend taking it this way.I couldn't get a port and had to settle for a PICC line. I think if I had the option, I would definitely go with the port.

I have had various side effects - cold sensitivity, muscle twitches and a numb tongue - but most have disappeared within a few days of the treatment. I have had 4 of my 8 treatments so far though. I did find that my treatment three side effects were much worse that treatment four. I was not well enough hydrated and that made the side effects worse. I have found the advice of others on this site to be priceless and reading personal accounts of the side effects meant that I wasn't too worried when I actually experience them.

I still feel nervous too! I hope it goes well for you.

SWS
Stage 3B colon cancer at 47 years of age
small benign tumour on Rt adrenal gland
Xelox started 28/10/2011 finished 04/2012
CT scan clear 16/2012
Colonoscopy Clear October 2012
CT scan clear January 2013
CT scan Jan 2016 - small 9mm lung nodule
CT scan April 2017 - lung nodule 1.5 cm, bilateral thyroid lesions
Aug 2017 Right upper lobe lobectomy for lung nodule CC met

beth568
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Re: New to the forum - nervous about oxiloplatin

Postby beth568 » Thu Jan 19, 2012 8:53 am

Welcome!

If you search through this forum for FOLFOX or XELOX (the names for the combinations of 5-FU or Xeloda and Oxaliplatin), you'll see some stories about different experiences.

Oxaliplatin is no fun, that's for sure, but it's also not the worst chemo drug out there. I had 8 treatments, and really didn't find the side effects debilitating until late in the game (rounds 6, 7 and 8 were the worst for me). I had the cold sensitivity all the way through, but that's quite manageable once you get used to it - just drink hot beverages instead of ice water, wear gloves to take things out of the fridge, and be sure to have gloves/hat/scarf on when you go outside. Neuropathy (tingling or numbness) in your hands and feet is also quite common with oxi, though that often doesn't kick in until later in treatment. I had no neuropathy until *after* infusion #8. As for feeling unable to breathe, it's just that - a sensation, not an actual blockage. Some people find that a rush of cold air makes them feel as if their throats are "closing up." Again - with a good scarf and some careful planning about going outside, you should be fine. And, as others have said, these effects often last for only a few days after an infusion, especially early in treatment.

A port might make the process much easier for you, and the port placement is no big deal - a minor outpatient procedure, usually under conscious sedation (the same anesthesia you'd have for a colonoscopy).

Good luck with it. You can get through this - it's a small price to pay for peace of mind down the road.
Beth
dx @age 42, Jan '11 RC, T2or3NxM0 (stage IIIA/IIIB)
6 wks chemorad Feb - Mar '11
LAR 5/23/11, staged T2N1bM0 (2 of 15 nodes positive)
8 rounds FOLFOX, June-Oct. 2011
clear scans Nov '11, May '12, Nov '12, May '13
http://www.mysemicolon.net

kims
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Re: New to the forum - nervous about oxiloplatin

Postby kims » Thu Jan 19, 2012 3:09 pm

Here are a few things that helped me through the Oxi treatments:

I highly recommend getting a port. I have had both a port and PICC lines - I'll take the port any day!

I would also suggest keeping a pair of gloves with you all the times. I probably looked ridiculous but I wore them on a few cold rainy days in May. They are also useful at the grocery store if you don't have anyone with you to take things from the cold/refrigerated section. And, I wore them a couple of times at work when the A/C was too cold.

Oven mits also work great for pulling stuff out of the freezer.

One thing that also gives instant relief to your hands when they are exposed to cold is to put them under warm running water - it will take away the pain and tingling almost immediately.

I tried to take a bottle of water or a can of soda at room temperature when I would go out to eat. I didn't realize how hard it was to get room temperature drinks at restaurants, short of tap water (which is awful in DC). Fountain drinks were too cold, even without the ice and I got sick of tea and coffee after a while.

Good Luck - it will be over before you know it.

Lastly, be prepared for the Oxi side effects to hit with the first infusion. I didn't plan on this and it was a nasty surprise when I walked out of the hospital after the infusion.
47 YOA
11/08 stage 2 breast cancer
completed chemo 6/09
diagnosed 1/11 stage 3B CC
4 rounds FOLFOX followed by 6 rounds Xeloda
completed 9/11
Pet scan 10/11 - NED
CT Scan 1/12, 4/12; 11/12 - NED
7/13 - recurrence - 1cm lesion left lung; VATS 7/13

AG1
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Re: New to the forum - nervous about oxiloplatin

Postby AG1 » Thu Jan 19, 2012 6:52 pm

THANK YOU so much for the advice. I can't say I am looking forward to the treatments, but I now feel more informed and a tad bit less concerned. I can't wait for the next four months to pass and to put this behind me!
AG, 49 Y.O., female
Diagnosed 7/11 at age 48, rectal cancer, stage IIIA (2 lymph nodes)
Radiation/Xeloda (5.5 weeks - 8/11 and 9/11)
Laparoscopic surgery 11/11, clean pathology
Chemo starting 1/23/12

AG1
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Location: Bay Area, California

Re: New to the forum - nervous about oxiloplatin

Postby AG1 » Thu Jan 19, 2012 7:02 pm

One more question - esk2poo mentioned that 90% of us get DVTs. Do you mean that the DVT is a result of the chemo?

I got a DVT after my surgery and I am on Lovenox for three months (I have 1.5 month left).
AG, 49 Y.O., female
Diagnosed 7/11 at age 48, rectal cancer, stage IIIA (2 lymph nodes)
Radiation/Xeloda (5.5 weeks - 8/11 and 9/11)
Laparoscopic surgery 11/11, clean pathology
Chemo starting 1/23/12

frugal
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Re: New to the forum - nervous about oxiloplatin

Postby frugal » Thu Jan 19, 2012 7:49 pm

First, I'll join just about everyone and say: get the port.
Beyond that, I think there's a fairly wide range of speed and severity of side effects among different patients. I'm still early in the process. Today I got the pump disconnected concluding round 4 of 12 of FOLFOX. For me the side effects, while getting a bit more pronounced each round, have been tolerable.

1st bite jaw pain- I've had this since round one. Annoying, painful, but brief.

The first couple rounds I had a pretty bad taste in my mouth. Someone here suggested taking Zinc, that seems to have helped.

Cold sensitivity- I had very little in the first round. I notice it more now. I can still reach into the freezer without gloves, but I can't hold onto anything for too long. Cutting raw meat is tough because I can't hold onto it for more than a minute. Cold drinks taste, colder. But, I don't have the broken glass sensation. Prolonged contact with anything cold gives me pretty sharp pins and needles. Cold air sometimes gives me what I call a cold flush. A feeling of cold that almost comes from the inside out.

Abdomen, stomach, digestion etc. I get some stomach pain and upset but I haven't gotten nauseous yet. I do have a prescription for Zofran and I take it preemptively if I think my stomach is getting wonky. I've had no real diarrhea. Except for one or two loose movements, I'd swear the Chemo actually makes me a little constipated for a few days.

I get a soreness,and even a burning feeling at the back of my throat, sometimes that comes with a lump in my throat that doesn't want to go away.

I've had some problems with nosebleed. Adding some extra heat and humidity to my bedroom has helped a bit.

I've had a little bit of neuropathy. Basically, my right pinkie has been numb/tingling for several weeks. Mild but noticeable. I also get a tiny bit of tingling in my feet.

The worst side effect for me is turning out to be fatigue. This round and the last have left me really wiped out. My infusion starts Tuesdays. I've slept through the last two Wednesdays.

Much to my Oncologist's amazement, I still have my hair.

Everyone reacts a little differently I think. You won't know until you try it. Hopefully, you're Onc will be able to monitor you and will know when it's time to reduce the dosage or even drop the Oxaliplatin.

Good luck!
John, 40 @dx
Diagnosed 09/2011, Surgery 10/2011
Stage IIA T3N0M0
12 complete rounds of Folfox
2016-03-22 NED

weisssoccermom
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Re: New to the forum - nervous about oxiloplatin

Postby weisssoccermom » Thu Jan 19, 2012 7:57 pm

AG,
Cancer patients have a higher probability of getting a blood clot. Then factor in the chemo (chemo also increases the risk) and you do have a higher likelihood of getting a blood clot. That does NOT mean that everyone will - just that it is not all that uncommon. Certain chemos are more likely to cause problems than others. Just know the symptoms of blood clots and be aware of what your body is telling you.

Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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John72
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Re: New to the forum - nervous about oxiloplatin

Postby John72 » Thu Jan 19, 2012 11:55 pm

Everyone of course is different.

My injections were a no pain process. Uncomfortable for sure. But no pain involved. Some people do have difficulty with this and need a port. If I were to do it again, I'd still just use the IV. No negative effects.

The cold sensativity is very real. Microwave anything you drink. 20 seconds for an 8 ounce glass of whatever worked for me. Warm stuff was outstanding. Ice cream was awful(I was dumb enough to try). Went down real good after being completely melted in the microwave :P The cold sensativity lasted about 5 days after the iv.

Nausea and sickness? I didn't really have that at all. I drove myself home 20 miles after each treatment.

I had the same exact treatment regimine as you will...six rounds...injection of oxi and two weeks of using Xeloda. After round 4, my WBC count dropped and my dosage was reduced by 80% and round 5 was postponed a week. That did the trick and I was able to finish all six rounds.

After each of the first three injections, I took the first week off work, and then worked the last two weeks. After round 4, I tried to go back to work. I went home sick after a few hours and did not return for almost two months. The chemo made me incredibly tired...basically I could do nothing. Zero energy. Getting up in the morning, eating breakfast, and taking a show took around 5-6 hours. So I stayed home and watched movies. I couldn't even play video games due to the final side effect....

Tingling in hands and feet.

That said...it wasn't overwhelmingly horrible. Just sort of....like you are waiting for the time to pass. I guess things were pretty brutal but it really didn't seem that way at the time. The neuropathy, sensativitiy to cold, lack of energy...were just kinda more annoying than anything else. Nothing really hurt. Just sort of uncomfortable.

This part isn't going to be a very popular statement here, but to some extent the terrible side effects you might read about are mind over matter type issues. No doubt a small percentage of people have really awful reactions to the chemo(poison). But when you are reading people describe the same side effects I had and saying how horrible it was....its to some extent outlook and personal pain tolerance.

Point being that for most people its just not that bad as its made out to be. Several people here went through oxy and didn't even have the extent of side effects I had....some even continued to work during the whole process. Everyones different.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

esk2poo
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Re: New to the forum - nervous about oxiloplatin

Postby esk2poo » Fri Jan 20, 2012 7:57 am

Hello,
Weissoccermom said it pretty good. There are many factors that can cause a dvt. I was admitted to the hospital right from his office so I did not get a minute to goggle it. I have taken the advice of the members and do not drive myself crazy with the net. But every sight I went to said we were at a 90 percent risk. Certain cancers affect plate letters as well as some chemo medicines. Just tell your doctor everything you are feeling no matter how small it may seem and let them determine if it is abnormal. And I did no mention it, the port is one of the best benefits of this ordeal. No extra needle sticks for blood. I hate needles like that is the least of my worries. God bless.
Allen
Dx 8/23/11 stage 3b crc
3 of 11 LN's
resection 9/15/11
folfox start 10/31/11 12 sessions
De-ported 6/2012
clear CT 7/2012
Clear colonoscopy 9/2012

disco nap
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Re: New to the forum - nervous about oxiloplatin

Postby disco nap » Fri Jan 20, 2012 9:24 am

Oxaliplatin side effects are real, but I think one of the most serious ones is the peripheral neuropathy because it can last well beyond the end of chemo whereas the other side effects are normally temporary.

Your onc will ask you each round if your hands and feet have any lingering numbness and always report truthfully on this.

I am a year out of chemo and still have a touch of numbness in fingertips and my feet are still pretty numb. My onc knew about my hands and feet, yet we opted to go the full dose at the 12th round anyway. There are options such as cutting the oxi out or at least reducing the dose if neuropathy becomes an issue for you (and some people never have it so...hopefully you are a lucky one).

Ask your onc for calcium/magnesium infusions to help with this although I did have cal/mag infusions and still had the neuropathy.
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 2012: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: Oct 2019 - still NED.


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