Starting chemo - advice on my decision - NO oxilaplatin

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Comments

  • JimTheBassist
    JimTheBassist Member Posts: 6
    dmj101 said:

    great Idea..
    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..

    Awesome. I will definitely
    Awesome. I will definitely check it out. Thanks.
  • golf_gal
    golf_gal Member Posts: 69
    dmj101 said:

    Gut Instinct always works for me.. though eductated as well
    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

    after chemo
    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
    dmj101 Member Posts: 527 Member
    golf_gal said:

    after chemo
    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?

    Are you taking Nurontin.. it
    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..
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    My experience-no recommendations.
    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
    thingy45 Member Posts: 632 Member

    My experience-no recommendations.
    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

    Jim
    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
    Annabelle41415 Member Posts: 6,742 Member
    Wow
    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
  • danker
    danker Member Posts: 1,276 Member
    chemo
    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!
  • JimTheBassist
    JimTheBassist Member Posts: 6

    Wow
    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

    Kim,
    Thanks for the

    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
  • Gabriele
    Gabriele Member Posts: 1
    Hi Jim, I finished Folfox 4
    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.
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    Still a newbie here
    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
  • scmidwife
    scmidwife Member Posts: 1
    oxaliplatin
    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
  • So Worried
    So Worried Member Posts: 111 Member
    tanstaafl said:

    options
    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].

    Just wondering.
    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.
  • Psalm37bl
    Psalm37bl Member Posts: 25

    Thank you!
    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

    Oxi
    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
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    Welcome Jim! I may not have
    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!
  • Dyanclark
    Dyanclark Member Posts: 296
    Oxi treatment
    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.