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Stage 3 colon cancer

Wanny
Posts: 9
Joined: Apr 2018

<p>I was diagnose in Feb had surgery resection and 2 nodes removed&nbsp; nothing else seen. My oncologist put me on Oxyapatin iv drip and xeloda pills 3 500 morning and 4 at night and the first iv drip my arms and hands went paralyzed&nbsp; took 2 days to wake up and the next drip was just tuesday he did all day slow drip and was better excwpt yesterday took nap and woke up hands and fingers drawing under and extreme numbness my question is im thinking why not just xeloda since the oxy is affecting me bad i do have a handy cap in arms n hands wondering if it coyld be connected please anyone done pills alone and outcome thank you so much&nbsp;</p>

Trubrit's picture
Trubrit
Posts: 5512
Joined: Jan 2013

I think you shuold definitely address this with your Oncologist. Once the neuropathy starts, it can take a devil of a time, to go away, if ever.  I left mine too late, and have permanet damage. 

As for the change in your chemo cocktail, again, talk to your oncologist and express your concerns. I find it helpful to write down everything I want to talk to my onc about, and get all my little ducks in a row, so that I don't get flustered. 

Others will be along soon with their thoughts. We all have different ideas at times.

Tru

Wanny
Posts: 9
Joined: Apr 2018

<p>Thank you Tru this means a lot to me as i cant do everyrhing as normal anyway i would like to at least keep what little i can do&nbsp; i hope i hear more about this drug ive read so much about it</p>

zx10guy
Posts: 274
Joined: Dec 2013

Are you receiving the infusions through a port or through IV?

Wanny
Posts: 9
Joined: Apr 2018

<p>Port</p>

Annabelle41415's picture
Annabelle41415
Posts: 6722
Joined: Feb 2009

It seems that your oxi is affecting you right off the bat for a long time.  Please discuss this with your doctor because it can only get worse as it is cumulative and the more you get it the more you react to it and the longer it takes for the side effects to go away.  My doctor wouldn't listen to my concerns and now have permanent damage.  You can nip this in the bud and they might be able to reduce it or use another form of treatment.  Please explain all of this to them as they need to know what is going on with you.  Hope you can get this resolved.

Kim

Wanny
Posts: 9
Joined: Apr 2018

<p>Thanls KIm I have heard this drug can do that the more you take it.</p>

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

I'm going through this treatment now, have had six cycles:

Oxaliplatin: 100%, 100%, 70%, 65%, 0%, 55%

Xeloda: 100%, 100%, 100%, 100%, 87%, 87%

The options are to reduce the doses (of either drug), skip it for a cycle, add an additional week or three break or stop completely. I would review the literature for the recurrence prevention percentages for Oxaliplatin.

 

The question of port vs IV is an important one. Most of us get chest ports because the IV is very hard on the hand or arms.

Wanny
Posts: 9
Joined: Apr 2018

<p>I have a Port my veins and nerves are smaller than normal, I believe thats why I am having so much trouble with this Med. Have you had an Neuropothy bad yet.</p>

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

Yup. I have it right now but it's confined to the fingers and toes. I have Hands and Knees in the hand joints from the Xeloda. It feels like arthritis.

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

I had Oxaliplatin and took Xeloda tablet for 12 courses with the last two @ 80% Oxi. I had very minimal Neuropathy during treatment. I had a leak during an infusion, had the port replaced on the other side and got a blood clot in my juggler and took 80 days of Yikes Xarelto (nasty but got rid of all my blood clots.

About 2 months after completing Chemo, Neuropathy really set in. It’s about 18 months since and I still have it lingering in my fingertips and feeling in my lower feet and ankles. I have not regained 100% balance and I am not driving yet.

Good Luck

Wanny
Posts: 9
Joined: Apr 2018

<p>Tunadog that sounds aweful i hope you get better very soon i know im scared of the oxy especially for me i have made my decision on this and will do as my heart tells me. I am on the xeloda still and havent hsd many side effects&nbsp; ut who knows if im having them worse wirh iv and cant tell which one is bad now i hope many can give insight to this because i have heard many others on other sites&nbsp; tunadog wish you the best and each of you&nbsp;</p>

SandiaBuddy's picture
SandiaBuddy
Posts: 1189
Joined: Apr 2017

Similar to you, I did very poorly with the oxiliplatin and only allowed one treatment.  I did about four months on the capecitabine.  So far, it has worked out well for me.  There are many things you can do besides the chemotherapy (or in addition to the chemotherapy) to reduce your odds of recurrence.  You might want to review some of the posts here for tips on that.

These are very difficult and personal decisions.  The more research you do, the better you will likely feel.

Wanny
Posts: 9
Joined: Apr 2018

<p>Thank you very much makes me feel a little better to know that I am not the only one</p>

abita's picture
abita
Posts: 1072
Joined: Dec 2017

If your body can't handle oxaliplatin, there are other drugs. It worked for me well the first 4 infusions. My liver lesions shrunk by almost half. But on the 6th infusion, I had a horrible reaction and ended up in emergency department. We tried again, watching carefully, and I had another reaction. I am now on folfiri instead of folfox. I guess oxaliplatin is more effective than irinotecan but it still works. My point is, talk to your oncologist. Discuss the side effects vs effectiveness and see if he or she recommends something else. It isn't oxaliplatin or no chemo at all. I am stage 4, so I don't really have a choice. I am in the mop up phase right now. You should talk to your oncologist and discuss your fears and let them address that and come to a decision that works for you. 

MAliceR's picture
MAliceR
Posts: 98
Joined: Mar 2015

Boy do I understand this. 6 and a half hears ago I had 8 months of infusions that included oxaliplatin. By the time I finished the 1st infusion my hands and feet were sensitive to cold. They burned. By the 4th infusion my feet had gone numb all the way up my shins to my knees. I finally broke down and told my oncologist I was afraid I wouldn't be able to walk soon. She adjusted my dose and we added a couple infusions. She put me on massive doeses of vitamin B complex and also authorized acupunture. I had 38 sessions and by the end of those sessions I had most of the feeling back in my hands and feet. Now, 6 years later I have a very tiny area of numbness on the balls of my feet and at the tip of my toes. I can walk, hike and have very few problems. I had to get rid of my heels and wear flats and good fitting shoes these days, but isn't a huge sacrifice. My hands are almost completely back to normal. I just find they get colder in the winter. I have learned to wear gloves. I guess where I am going with this is. Be open with your Doctor, he/she can't help you if you told tell them what is happening during the course of your treatment. I think often we are so worried about messing up the cure that we are afraid to say anything. Also, check out acupunture. It really did help me. It is worth giving it a try. I still take vitamin B complex every day.  I really hope you can get your treatments adjusted so they work for you and are successful. 

Blessings

MAlice

Bettencourt61
Posts: 1
Joined: Apr 2018

Hi,
My name is Ellen. My 33 year old daughter was just diagnosis with stage 3 colon ca she has a resection and had her first treatment today god it was so upsetting I no we have a long road ahead of us and would love any tips on how I can possibility. Make this a little easier I feel totally helpless am trying to stay positive but there is only negativity on the few sites I have been to ill pray for you all
Thank you in advance for any info you can give

SandiaBuddy's picture
SandiaBuddy
Posts: 1189
Joined: Apr 2017

Welcome to the forum.  You will probably get the best response if you start a new post introducing yourself and asking any questions you may have.  I am sure you will find everyone very welcoming and a great depth of knowledge about many aspects of the disease.  Sorry you are here, but you have found a useful resource.

Trubrit's picture
Trubrit
Posts: 5512
Joined: Jan 2013

If you start your own thread, you will get all kinds of help. 

Here is the link https://csn.cancer.org/forum/128

let us know if you need help navigating.

Tru

Wanny
Posts: 9
Joined: Apr 2018

<p>My prayes are with her dear</p>

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

   I can't help much with oxilaplatin;. I had chemo before it was released in Australia where I live. We do tend to forget tho that neuropathy is not unique to the platinum drugs. I had infusions of 5 flourouricil every week for 48 weeks. Every second week it was enhanced with 9 tablets of levamisole. 3 a day for 3 days after the 5fu. It was also a combination known to ,at times,  produce severe neuropathy. I was dxed stage 3 c into 6 nodes in Jan 1998. I initially suffered no  neuropathy but it gradually showed up and got progressively worse over the next 5-10 years.   Levamisole was banned in 2001 . It was a dangerous drug and caused some deaths.  My neuropathy is severe and is up to the tops of my legs. I was tried on  lyrica, neurontin ,endep , fentanyl and norspan patches. I spent nearly three years on targin which is a nasty mix of oxycodone and naloxone. Naloxone is an opiate antagonist and was supposed to stop opiate induced constipation. It didn't and with every dose of targin I had to take two dulcolax and two coloxyl. It was all very unpleasant and in the end everything i took made no difference to the neuropathy... My neuropathy was officially dxed around ten years ago by a neurologist who ran nerve conductivity tests. I hate the difference it has made to my life. Just last night I had the most recent of a long history of falls. It hurt and i am not moving too well today.  To round out my long term side effects of chemo , I have auto-immune nephrotic syndrome of the kidneys, varying degrees of auto immune hepatitis , peripheral and pulmonary oedeema , seronegative poly arthritis. Type two diabetes from botched kidney treatment with high dose prednisone.  I have also been diagnosed with frequent ectopic heart beats as well as atrial flutter and atrial fib. I take cyclosporine twice a day and warfarin once a day.

              The upside is that I have survived cancer free for over twenty years, thanks to regular scopes. I wish you well. When you talk about survival you have to appreciat that there is a whole lot of different ways to survive and so far neither we nor the medical profession have much input on our survival. It is what it is. Wishing you very good luck, Regards Ron.

Wanny
Posts: 9
Joined: Apr 2018

<p>Thanks Ron I appreciate it and I really hope that you continue to be free from this. I pray you get through each day with not feeling bad, please keep in touch on progress.</p>
<p>&nbsp;</p>
<p>I hope each one I have got to talk to keep in touch and we can talk freely about out conditions.&nbsp;</p>

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