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Starting chemo - advice on my decision - NO oxilaplatin

JimTheBassist
Posts: 6
Joined: Jun 2012

Hello all,

I just joined and this is my first post. I am looking for some advice.

I am stage 3a colon cancer. Cancer was found in 2 lymph nodes but nowhere else. I had a resection completed in April and have recovered well. Tuesday I start chemo. The recommended plan is 12 rounds of Folfox 6. The only problem is that oxi is known to cause neuropathy. Sometimes temporary, sometimes permanent. I am a professional musician and need my hands to function properly.

At this point, the chemo is considered adjuvant (preventative) therapy. I am 50 years old and otherwise in perfect health. The cancer was found during a routine screening recommended by my GP. I had absolutely no symptoms.

I got a 2nd opinion from a great dr at Dana-Farber and we discussed this. I mentioned Folfiri as an option and he did not think that was an option because, while it is considered effective in metastatic treatment, there is no evidence that it is beneficial in adjuvant care.

He suggested starting with Folfox and closely watching the neuro symptoms. If they appeared they would reduce or eliminate the oxi. He also said that it would be totally ok just to leave out the oxi altogether if it really bothered me. Prior to 2004 that WAS the standard treatment plan.

To frame how important this is to me, I told him that I would rather live without neuro and pass at 60, than live to be 70 with neuro. He got the message.

I've since done a ton of research and see lots of people get neuro and it is often permanent. Also, some people report that they had little or no symptoms during treatment but then it developed after treatment ended. Based on this, I am going to tell my onc that I don't want any oxi. I'm not willing to risk it.

My question (finally) is: do you think I am crazy? Does this make sense?

I know everyone is different and this is my decision but I've been monitoring your posts and I consider them very insightful and valuable.

Thanks for your time and thoughts,

Jim

Lovekitties's picture
Lovekitties
Posts: 2943
Joined: Jan 2010

Welcome to the 'home' we are all glad to have but wish we didn't need.

Each person must make treatment decisions based on their personal life situation. While the medical teams can tell us what is the 'usual', that just might not be what is right for you.

I personally declined to take chemo or radiation after surgery. My doc said with that treatment I might just be cured. At the time I was 63. I determined that at my age I would rather not have any of the potential side effects or lasting issues or possible complications. So I spend my time doing the things I love to do instead. If I had been considerably younger, I might have felt differently, or maybe not.

There is no one answer for everyone.

What we each have to do though, is be so certain of our decision, that we will not go back and play the 'if only' or 'should have' games.

If you are sure your decision is the right one, then it is.

Best wishes to you,

Marie who loves kitties

k1
Posts: 220
Joined: Dec 2009

Whatever decision you make is your decision and you have the right to make it regardless of what anyone else thinks here or elsewhere.

Do remember the grim reality that you do not know if this decision is equal to your self predicted equation of living to age 60 and no neuropathy or living to age 70 with neuropathy.

None of us really knows our fate or how much time we have left regardless of what treatments we choose.

K1

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

while I have permanent problems from the 5FU. Oxali problems lasted a few days during each treatment. Cold affected me severely. I couldn't fold a piece a letter and put it in an envelope. However, that quickly subsided. My hands and feet grew progressively worse from 5FU over the course of my Folfox treatments.

The choice is yours, but be sure you understand your options. Also, lots of people have found that with a mag sulfate infusion (I believe that is what is used) the neuropathy symptoms can be minimized, if not avoided. Ask your onc about "The Mags". If neuropathy is an issue, and you drop the drug early enough, then it should be completely reversible.

Having been through what I went through, I have concluded for myself that quality of life definitely supersedes quantity. Get your facts. Decide, and proceed with no second thoughts.
Alice

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kristasplace
Posts: 877
Joined: Oct 2007

...is a very personal decision. I was diagnosed a 3c, and did do folfox 6 back in 2007/08. i got BAD neuropathy everywhere, and it has stayed in my salvary glands, mouth and legs. The hands are not so bad, but everyone is different. 98% of people get neuropathy from oxaliplatin in some form, or other. For me, if i'd known then what i know now, i probably would not have done it. There is no evidence either way whether it works, and for me, i became a stage IV the year afterwards anyway, so it didn't work for me. I've had two surgeries for two recurrences since then, and have opted out of any type of chemo since doing the folfox, and i don't plan on doing anymore, even though the doctors are highly recommending it. We're outside the standards of care, and that's not at all a negative thing.

Good luck, and no fear. Take care of your body and mind. juice organic fruits and veggies, supplement, and find your happy. You can survive beyond 60 and 70. Some of us do.

Hugs,
Krista

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

Sorry to hear of your diagnosis. I can somewhat relate to your situation, I play guitar but not professionally (some say not well either) but I enjoy it TONS and had concerns with the Oxy. I had neuropathy while doing FOLFOX but it was probably considered moderate. It certainly got in the way at times but it was never like I couldn't walk or anything.

I still have very mild numbness, mainly in my feet, but it really doesn't affect me. Given your situation I'd probably steer clear of it or try it and see how things go, if it's a problem then stop.
-phil

PS: that's hardly the crazy test!
:-)

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

Due to misstaging we were told my wife was a stage III, when she was a solid IV. Adding alternative adjuncts seems to have limited her residual mets spread despite many expectations otherwise. Molecularly, people with non-mucinous colorectal cancer who overexpress VEGF-A and COX2 are likely to be/become metastatic even if they are stage II or III. VEGF and COX2 have biomarker stains, but speed is to presume common positives or utilize other evidence (histaminic reactions, CA19-9 blood biomarkers) to better define the odds until lab work could catch up. COX2, EGFR and VEGF-A are a major part of the molecular causes that propel non-mucinous stage IIs and IIIs are/go micrometastatic and rapidly recur - cases where 3-6-9 months after chemo, they are diagnosed as recurrent with mets. CA19-9 tumor stain captures most of the VEGF-A and EGFR risk, CA19-9 blood is less defintive but still refines odds. When the CA19-9 biomarker positive stain commonly occurs, the papers indicate that long term 5FU with cimetidine starting earlier near surgery, may well outperform Folfox. We added vit D and PSK among many things.

We've added the LEF protocols and some extras to her (foreign, oral) 5FU-LV prevent metastatis, very successfully. Important ones being cimetidine (still important after surgerical met risks), PSK and natural COX2 inhibitors. Our story, click [Tanstaafl].

So Worried
Posts: 111
Joined: Aug 2012

Hello, I am just wondering what tests does the Dr. need to do to know all of that? My husband was diagnosed in June and we are deciding on chemo...that could play a big part in his decision...thank you much.

taraHK
Posts: 1961
Joined: Aug 2003

Hi Jim,

I had some neuropathy on FOLFOX but it resolved completely -- eventually -- after I stopped.

That being said, I believe each individual should chose the path they feel most comfortable with -- absolutely. I am also a great believer that Quality of Life is incredibly important -- as you point out.

5FU has been around a long time but it's still a great drug.

You are not crazy. Well, no more crazy than the rest of us! Welcome to the club.

Tara

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pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

First welcome, I am similar to staging but am 45 with possible recurrence,

You have done some good research and thought things through.

Answer this question given recurrences are real and we loose many friends here.

How would you feel if you get a bad recurrence that you die from within 12 month ?

If no regrets about no folfox then it's a great decision.

After my 12 rounds I have almost normal feet and 99% hands.

So I did it, had to beg to get folfox 6 here on compassionate grounds and am still on uncertain ground.

So that's the pro folfox view, I am now a meditating, vegan who likes yoga and juicing and a few supplements.

The last thing in the world I want is more chemo, I know what it does now.
But if it saves my life then great.

Hugs,
Pete

Ps did you research reducing neuropathy with lots of supports. Calcium magnesium, lots of trials, ask your onc.

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

Ok..First off I am going to ask the question everyone wants to know and won't ask .. because I am pushy Jersey Girl.. ARE YOU FAMOUS? Have we heard your work?...

Awesome to do something you care so much about and obviously are very passionate about... Kudo's..

Ok.. Oxi.. sucks.. no better way to put that.. the Neuropathy appears differently for everyoe. For me I need to be able to type.. as I work on a computer all day everyday.. sounds mudane.. but I really love my job too.. and to not be able to do this would have devistated me.. While I complain about the neuropathy... I have never not been able to function.. painfull and numb but the dextarity never left my hands.. my feet at times are clumpsy and that distresses me.. I am too young to be tripping over myself..(48)..
I find my mouth at times feels tongue-tied but that could be overusage(LOL).
However,,, I noticed my incissions didn't finish healing so great while on folfox.. but after they all stopped the healing resumed..
I have been told VIT A and E are effective to keep the neuropathy at bay.. but I started them after it occurred.. but I did notice some change taking them.. exercise helped too..
So that all said.. would I have opted for the alternative.. probably not..

None of know when our expiration date will be.. we could be hit by a bus tomorrow.. you just never know.. To me it is a matter of independence..

Did the FolFox work .. I will never know.. my CEA was not a good indicator .. I know have lung mets and if they were there while of FOLFOX and no one saw them then NO it did nothing... I am now on FOLFIRI.. who knows.. the side effects are hairloss.. if you play for Guns and Roses or Aerosmith.. you will need your Hair... toss up..

Decission are solely our own.. we have to live with no regrets... Yesterday is a memory and tomorrow never comes.. Today is always present..

Let us know what happens..
Donna

golf_gal's picture
golf_gal
Posts: 69
Joined: Dec 2011

My DD says I sometimes slur my words in when I wake up...like I'm medicated or too much alcohol, but not the case. I cannot walk barefoot. My last chemo was Feb this year. I have a hard time balancing and motor skills. I had folfox6+ avastin b4 op. Sans avastin after surgery. Are my symptoms normal? I didn't mention those achey bones. Oh gosh. Is all this from oxaliplatin?

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

Are you taking Nurontin.. it made me feel drunk .. I never made it past the 1st dose.. I couldn't stand that feeling.. It was incompacitating to me.. I felt like I was drowning in med..

John23
Posts: 1832
Joined: Jan 2007

Re:
"The only problem is that oxi is known to cause neuropathy.
Sometimes temporary, sometimes permanent. I am a professional
musician and need my hands to function properly. "

"At this point, the chemo is considered adjuvant (preventative) therapy. "

"My question (finally) is: do you think I am crazy? Does this make sense? "

Donna's made a good point regarding listening to one's "gut instinct".

We were all born with a well defined self-preservation instinct,
and it's unfortunate that so many have allowed fear to cause a
disregard for that instinct.

The permanent damage can not be determined until it's too late,
while the stress from worrying about that can go on forever, since
much of the neurological damage takes time to accumulate. You may
not realize the damage for a long time after stopping the treatments.

The use of chemical therapy as some sort of a "preventative therapy"
is nearly absurd. Chemical therapy (chemo) was not designed to
be used as some sort of preventative tool, and is fairly useless as such.
We all would be taking chemo from birth, if it was able to prevent
what we are now suffering.

And no, you are not crazy for considering other options; many
oncologists are turning to a "wait and see" approach, rather than
subject individuals to treatments that are in itself cancer-causing.

ALL chemo drugs are known to be carcinogenic chemicals. We
should always be very aware of that fact! The chemicals can do
damage to more good cells than they do to bad cells. Since we
have cancer because we are susceptible to cancer, allowing
carcinogenic chemicals to be injected into us, is not conducive
to "self preservation"...... Not in my opinion, anyway.

You can read my profile and blog here, if you're interested, by
clicking on my name. Perhaps I'm just one helluva lucky guy,
as my physicians tell me, or perhaps.. just perhaps... there really
is something better than what's being offered by the cancer industry.

You have to make your own decisions in life, and your inner being
will lead to you to what's right for you, if you listen to it.

We are all different, and some of us won't beat cancer no matter
what we do... and some others may die from consequences of
harsh treatments.... and some will avoid it all and seek their own
way to fight this... and of course, some will live long lives in
spite of treatments of any type...

Just -do not- allow fear to make your decisions. Regardless
of who tells you that one thing is better than another, only you,
your intuition and instinct for survival, can determine what is
right for you.

And even then Jim, there are -never- any guarantees!

Best hopes for a fantastic, healthy life!

John

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

I did oxy and then extra oxy via a clinical trial because I wanted to pull out the big guns and didn't want to second guess myself later. The mag/sulfate drip helped buffer some of the side effects, but within a year, all traces of the neuropathy were gone.
I can't play the guitar, but then again, I never could. :) However, when tx ended I had difficulty braiding my daughters' hair, and now it's not an issue.
My philosophy going into tx was "months for years" meaning I could tolerate some bad months in order to have many beautiful years in front of me.
Best of luck whatever you decide and welcome to the Board~
Tommycat

JimTheBassist
Posts: 6
Joined: Jun 2012

Thank you!

Thank you all for taking the time to respond. As I expected, your responses are very helpful. Hopefully I can return the favor for someone else someday.

Just a couple of quick notes:

I'm a "glass half full" type. My statement using ages 60 / 70 was just an example to help the doctor understand how important my hands are to me. I know I could go tomorrow or live to be 90 (to be honest, I'm one of those who thinks he's going to live a long time in spite of my diag).

No, I'm not famous. Well not nationally or internationally anyway. I play for a top shelf Wedding / Function band. I also work full time as a software engineer and use my hands for that too. I am going to try to maintain my schedule through this process which will be challenging however I can work from home as needed so that will help. Gigs are another matter. You have to be on stage for 3 - 4 hours and chemo brain will not help with the material we play!

My onc did mention using magnesium and calcium and some other things to reduce the neuro concerns. I just still find it just too risky. My wife loves to read books (really old ones). Its HER passion. She said, "It's like someone telling me, 'take this drug. You may go blind but your chances of preventing recurrence just went up by 6%!' It's the same thing for you."

Good advice on avoiding the "should have, would have, could haves.." I have a wife and two boys 18 and 21 so my decisions affect more than just myself. This is part of the equation. But I am very healthy and now that I know what causes cancer I have a great plan for preventing recurrence.

Wow John23! I got goose bumps reading your post! Very cool.. Yes, the more I've learned since being diagnosed the more I've come to realize how rudimentary the standard treatment plans that are being offered are (surgery, radiation, chemo). All the while most medical practitioners never even mention what we can do to get at the root cause and prevent recurrence. I understand the reasons why but that doesn't help us all get to where we need to be. I suspect we'll be sharing more thoughts regarding this in the future...

I can't tell you all how helpful it is to actually speak with people who are also going through this process. I am very fortunate in that I have a phenomenal support system of people who care but their understanding only goes so far. Talking with you all makes me feel less alone.

Thank you all again. Talk to you later,

jim

steved
Posts: 836
Joined: Apr 2004

Ultimately this journey is one of judgements and we need to believe that what ever deicsions we take are right for us at that time. I am an old hand here and went through treatment before oxaliplatin was routinely used so just had pre and postop 5FU. I will say now that I hav gone on to have a relapse 7 years later and it is of course natural for me to wonder if I had had oxaliplatin as is now recommended would I have not relapsed? However, as people point out 'what ifs' are the classic toxic thoughts of people with cancer that do little but torment us.

On relapse I have had oxaliplatin and had an odd response after a number of cycles that made medecide to stop it (was swollen tongue/ allergic type reaction) and asked my consultant to look at the recent stuff on just using avastin with xeloda. she came back saying the unpublished evidence is that it seems to be as good as oxaliplatin and xeloda and has allowed me to use that concoction instead. It has made me realise that the protocols whilst based on the best evidence don't suit all individuals and we need to be empowered by knowledge to participate in the decisions about our care.

I think you are balancing those decisions well and know the risks you are taking. There are no guarantees in this game and we must live our lives in the meantime. Make the decision that is right by you and it is the right decision.

steve

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

Thanks for that Steve. Can we roughly interpret that comment as "neutralizing excess VEGF-A with Avastin yields net statistical improvements equal to adding oxi- for stage IV/recurs"? Have you considered direct measurements of VEGF-A and/or staining your path samples for CA19-9 (indirectly VEGF and maybe EGFR correlated too) and COX2(related iNOS may be more available) to get personal targeting?

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

Now can we start with the "Bass Player" jokes? (which I think are actually recycled drummer jokes!)

I get goosebumps from John's posts too - but for different reasons :-) but I do agree that there is more to good health than just doing "surgery, radiation, chemo". I read something on Facebook (so it HAS to be true) that quoted Wendell Berry where he wrote: "People are fed by the food industry, which pays no attention to health, and are treated by the health industry, which pays no attention to food.”

I hope that at some point everyone from all disciplines will put their collective heads together and come up with a solution that does little harm and lets the body do it's job.
-phil

JimTheBassist
Posts: 6
Joined: Jun 2012

Very cool and I like the quote.

I'm just at the beginning of learning and gathering information so I have a long way to go. However, from what I've figured out so far:

* My body IS designed to fight cancer.

* However, if my immune system gets compromised (which it did), cancer can take hold and then it is just too much for my body to fight on its own and I need additional help. Unfortunately, the best PROVEN techniques are surgery, radiation, and chemo so that's what we do.

* However, if I keep my immune system healthy, my body may be able to prevent the cancer from recurring.

* What I ingest and how I live my life has a direct impact on the health of my immune system.

* Therefore, I need to really pay attention to what I eat, drink, and do if I want to avoid surgery, radiation, and chemo in the future.

And yes, let the jokes fly!

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

and Remember if you are going the non traditional route to remain within the positive light and energy..
I am going to suggest you check out a site: Mycrazysexylife.com
It is a free site and all about juicing and natural cures and healthy living.. you may gets some ideas there and definitely alot of positve energy..

JimTheBassist
Posts: 6
Joined: Jun 2012

Awesome. I will definitely check it out. Thanks.

Psalm37bl's picture
Psalm37bl
Posts: 25
Joined: Jul 2012

Hi Jim!
I was diagnosed in April 2011 with stage 3 colon cancer. I had half my colon removed. My oncolologist said my cancer Was a very aggressive type. It was in 1 lymph node so I did 5FU. 12 rounds and I did have the Oxi. No neuropathy until about 6 weeks after my last treatment in November. My fingers and feet. I realized about a month ago all the numbness in my fingers was gone. I still have numbness in my feet. I was told the possible side affects before starting. I wanted the most aggressive treatment that would rid my body of the cancer. So far I am doing well. Just had my CEA and it was in the normal range! I hope this helps you in some way to make your decision!
ONE DAY AT A TIME!
Beth

marbleotis's picture
marbleotis
Posts: 492
Joined: Mar 2012

Jim - I have the neuropathy and am on #8 of 12. My dr added magnessium and calcium drip before and after infusion. This gives me a great improvement. It is a very personal decision. I am also stage 3b (3 nodes no other organs). I love to sew so my hands are a big concern. Turns out sewing (movement) actually helped me with the numbness. Best of luck

peterz54's picture
peterz54
Posts: 231
Joined: Feb 2012

There is considerable research to suggest thst Calcium Magnuesium infusions during (not after) treatment may prevent nerve damage. same with use of glutamine, but too much glutamine may promote tumor growth..My wife's ONC wasn't enthusiastic about the infusions citing what I already knew was a debunked study as her reason for no recommending infusions. My wife takes Calcium and Magnesium supplements at the RDA level as a precaution but she has had some problems develope with her right hand having just completed 12 treatments

This report says that nerve damage continues long after OX is stopped....
Oxal News

JimTheBassist
Posts: 6
Joined: Jun 2012

Thanks for the info. Yeah the deal breaker for me was when I finally ran into some musicians who actually had to stop playing as a result of their experience. One of then had no symptoms until AFTER the treatment stopped.

Lifeisajourney
Posts: 217
Joined: Apr 2010

This information is in hindsight.. dx 12/08 3b, no met, 3 out of 30 nodes positive...surgey 12/08, folfox 7x till May 09...had toxic reaction. Recovered, but have severe neuropthy,hands/feet and tightness in abdomen..I was ok till 1/11 got mets to liver,tried resection, liver was too bad to complete. I refused chemo...semi invalid, but can eat, visit, enjoy...so my hindsight is no chemo till mets had occurred in liver, assuming nothing else would have appeared...I was in a-1 shaped after first surgery, have never fully recovered from resection 6/1/11. I reason I would have possibly been in better shape for mets if I had not had chemo. This is just my story and I am now 69, age could be a factor....should, couldve, wouldve kind of thing..very personal decision..Good luck with your choice..Pat

thingy45's picture
thingy45
Posts: 582
Joined: Apr 2011

Hi Jim, First of all, welcome to the board, I would have liked to meet you under different circumstances.
However, The decission ofcourse is yours.
I faced the same decission but I declined the offer. My onc was not happy with me, but i decided to go the natural way. Juicing, walking and swimming Vit D Pro Biotic , just eating Turkey,Fish and chicken, etc.
I was dx stage III b no mets. Now after a year after dx I am still NED nd I hope to stay that way.

I am a writer, I paint and I like to do intricate needdle work, what I design myself, I need my fingers to be in tip top shape.

None of us knows how much time we have, but I am planning on another 20 years. I will be really p.....ed off if I do not make that. BIG TIME
One dy at a time and most of all, THINK POSSITIVE and be happy, find each day something to laugh about.
Hugs, Marjan

Annabelle41415's picture
Annabelle41415
Posts: 4266
Joined: Feb 2009

Hard decision to make and only you can be comfortable with what decision you make in the end. I'd expressed to my oncologist that my neuropathy was affecting everything in my life and asked if I'd could get a reduction with my oxy and she said no and it would go away and she said most people only get a "neusance" with it. Well it never went away. It's gotten a lot better but my feet and hands hurt and feel numb and sometimes I'm not able to type and when it gets cold my feet are so numb it hurts to walk. Be so so careful. Glad you are being cautious. I'm not sure if the oxy works that much better with other drugs or not but glad that you posted. Best outcome to you.

Kim

JimTheBassist
Posts: 6
Joined: Jun 2012

Kim,

Thanks for the feedback. Your experience was the same as mine with my first onc. In the beginning (when we didn't know folfox from a foxtrot) we were getting training from their chemo nurse on what to expect with chemo. About an hour into the session the fact that I am a musician came up and the nurse said, "Whoa! We've got stop right here. You don't want to take Folfox. Musicians typically run the other way from it." (Thanks to her for saving me from making a BIG mistake).

When we brought the concern back to the onc, she totally dismissed it and said things like, "it's really no big deal. The only people who get permanent neuropathy are the ones that don't raise the issue until it's too late". I then went to Dana-Farber in Boston (#1 in New England) for a 2nd opinion and got the whole story. Needless to say we're not working with THAT onc anymore. We have someone much better.

Unfortunately, I think part of the problem is that lots of oncs are afraid to deviate from the established paths. I can understand why. They want to do everything they know to prevent recurrence and what may seem like an unacceptable side effect to the patient is just a nuisance from their perspective.

Fortunately I found an onc who really understands all of the factors involved and he helped me feel good about my decision. I started chemo #1 yesterday and he feels that my decision is the right one for me. I still do the 46 hour infusion with the bag. Everything is identical to Folfox 6, just no oxaliplatin.

As far as my risk of recurrence as a result of my decision (this from my sister, bless her heart):

"50-60% of your type of cancer is cured by surgical resection. Most relapses occur within 3 years of surgery.

I went back to the study that led to adding oxaliplatin to adjuvant therapy regimens. With FL alone, 72.9% were disease free after 3 years. Adding Oxi increased the disease free rate to 78.2% - a significant but small increase."

So, theoretically, my decision has increased my risk by 5.3%. Wow. Big whup. I'm going to make up that percentage and more just in the basic lifestyle changes I've already made: no alcohol, only whole foods, no processed foods, and very little (if any) animal based products.

I'm sorry you still have some symptoms and pray that they soon disappear. Thanks for taking the time to respond.

Jim

danker
Posts: 742
Joined: Apr 2012

I had 5fu with a pump while getting radiation before the resection. No chemo after. Whatever you decide it is the right choice.
The best of luck to you!

Gabriele
Posts: 1
Joined: Jun 2012

Hi Jim, I finished Folfox 4 months ago. First I had only very mild neuropathy but did develop it 1 month after chemo finished. With diet, and alternative therapies advice and acupuncture it has improved but still uncomfortable. I believe as far as yourself, you will need to make your own plan around your cancer treatments and be strong that you know it is what you would want to do. I wish you the very best for your journey.

scmidwife's picture
scmidwife
Posts: 1
Joined: Jun 2012

I am stage IIIA and just received my fourth infusion of FOLFOX and am giving some serious thought to stopping the oxaliplatin due to the neuropathies. I work as a nurse midwife, and prior to my diagnosis was very active trail running and hiking, and would be very sad to find myself at the end of treatment living with neuropathies, unable to do these things that bring me so much joy. i was reassured by what your second opinion doc had to say on the subject.

BTW, I reviewed the research you quoted with my onc, and it not only showed the stats you mention, but overal survival was not improved significantly- it was something like 6 vs 9 months. Also, many colon cancer patients are older (median age 71), and for some reason they didn't consider a 12.4% grade 3 permanent neuropathy something that had a negative impact on their quality of life.

I am already in clinical trial where I am either receiving cal/mag IV prior and after my oxi, or a placebo. I guess dropping oxi would mean being bumped from the trial, but hopefully, it will still shed some light on how the research questions.

In any event, I hope your treatment is going well. It's sounds like you feel good about your decision.

All the best,
Pam

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Still a newbie here myself...i learned something today...to look into the mag sulfate infusion. Neuropathy is a strong concern for me too. I am a needleworker and i also do stained glass....cant very well stitch or cut glass without the use of my hands.

Thank you everyone for your advice...i am going to look into what i can do to hopefully ward off some of these side effects.

Alex

thxmiker's picture
thxmiker
Posts: 1225
Joined: Oct 2010

Welcome Jim! I may not have done Chemo had I known the damage it was going to do. At the same time, I would get aggressive with alternative treatments.

I was an Audio Engineer and lost a bit of sight and a lot of hearing. I lost feeling in my hands and feet. I can no longer play finger style guitar. I can not feel the difference between a hard and soft stroke of the fingers. I changed to a pick and am relearning a little bit of style. (I sold off my company because of my inability to hold quality.)

I would recommend to get aggressive on Alt types of Cancer intervention. Why not stack the odds in your favor? Worst case, you get physically fit and lose a couple of pounds. Anti Cancer Diet was a great read. Gerson or one of the off shoots may be a good choice. Again, either way a good read.

Best Always, mike

PS Sending good vibes, thoughts and prayers your way!

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Dyanclark
Posts: 258
Joined: Apr 2012

My husband finished his chemo of Avastin and the Oxi. He is a drummer and has played drums for over 45 years and is 67yrs old. He doesnt play professionally anymore but loves to jam with his friends and is playing the drums tonight. He was on the treatment for 5 months. I would ask more questions as to how many treatments would cause to much damage. His neuropathy has been only mild and is getting better. With his last round of Avastin they did not put him on the Oxi pump.
His CEA started at 46 and is now at 1.9. He also now had to go to a bag and the tumor was dead and cut out.

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