Brand new to the forum, 8 months out from diagnosis
My story is complicated but I was diagnosed in October of last year with rectal cancer, usually I call it colon cancer to others in person because I feel embarrassed. Had major surgery to remove the tumor in lower part of colon which went fairly well in November. No ostomy! Due to mass confusion with multiple doctors and opinion getting visits, ended up not having radiation until February and March, 28 treatments total. Just had 2nd Folfox treatment last week.
The major issue that I am having is that I had a severe reaction to the Oxalaplatin last week with strange neurological symptoms, altered mental status, trouble speaking and walking the first day. I can hardly believe this happened as I write it here! The symptoms finally resolved after a week, I did get a head CT and there were no signs of a bleed or stroke. Now that I am better except for serious nausea and basically unable to eat much at all, I am truly trepidatious about having any further chemo, period. I was strongly hesitant in the first place. I am highly sensitive to any medications, especially any that can affect your brain. Long story...Of course I had gotten 5FU during radiation and with both chemo treatments, seemed to tolerate that fairly well.
Havent seen or spoken to my oncologist since this episode but contacted my "nurse navigator" to be sure that I will see him rather than the NP next week to discuss further treatment. Right now, I don't really know where I stand. My doc called me a stage 3.5. He said he was not trying to be cute but there was some tiny strange areas seen on my last pelvic CT that were mysterious in my liver. My previous doctor told me I was a stage 4 and that I would have to have intense chemo for 6 months. My new, more experienced and wiser doctor in my opinion did not agree and we planned to do the Folfox for 8 treatments for "insurance".
Now, I am a recently retired RN and I am majorly confused about where I stand, very upset and disturbed about how this is going. It took me a long time to even accept my diagnosis. The only thing that gives me comfort is that I do believe that I have a very informed and seasoned oncologist that I trust. Other than that I am floundering. On top of the nausea that is uncontrolled at present. The nurse navigator told me yesterday that we needed to do something different to get the nausea under control but never called me back.
I realize that I have written too much and that many of you may not feel up to doing a lot of reading here. Just thought I would throw this out here and see if I get any thoughts. This site is a great resource and I am thrilled to have finally got online to check it out.
I'm so sorry that we're all here and have been affected personally in some way by this awful cancer stuff. Thanks in advance for your thoughts!
Comments
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Best of Luck to You..
Sorry you joined our little group.
I had a hard time getting diagnosed so I could be treated properly. I took 3 biopsys to get a positive.
Everyone here will appreciate your story and comments as we are in a small boat. I've had a rough time but I have a wonderful wife who is taking care of me.
New stuff is coming out all the time.
Best of Luck
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You can never say to much, and we're all about the reading
You have arrived at the right place, though many of us may not have 'the answer'.
The Oxaliplatin is a hard drug to tolerate, as you are finding out. I am sorry that you have been hit so hard right at the very beginning of treatment. It took me three or four before I hit the head part. I acted like I had Alzheimers, not being able to think properly. Knowing that I was confused, but not being able to get things out of my mouth. My eyes went on me, and my balance, so therefore, my ears as well. I ended up using a zimmer frame (what do you call it in America? A walker?) I couldn't stand on my own without tipping over.
I tell you these things so that you know, you are not alone. I found it truly frightening, until I myself posted on this forum, and others let me know that they too had the same (in varying degrees) symptoms.
I was definitely spared the nausea though, so I can't help you in that area.
I did nine treatments. I was wasted by the end, and thought it the worst thing I'd ever experinced in my life. Ah! How naive! Radation was 10 X worse.
I am glad that you have stated that you need to speak to the Oncologist. Make sure this happens. It sounds like you have allot of faith in him/her.
I know its going to be hard, but don't worry about the 'other spots'. They may turn out to ne nothing, they may turn out to be a problem. Get through this trial before you start on the next.
You can't judge your reactions to treatment to anyone else. Even with all your RN experience, you are unique and your body will follow its own plan, and not anybody others.
Stick with us. We'll help you through this.
Tru
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welcome
Welcome Karen. Sorry that you have to be here. Quick recap of my husbands story. He is 47 and diagnosed with stage 3 rectal cancer in December 2016. He is /was a firefighter/paramedic and we have two kids ages 14 and 12. He first had 28 days of 5 Fu and radiation. Then had surgery in February and now has permanent colostomy because his tumor was so low. He has been dealing with that really much better than I thought he would. He had his first Folfox treatment on June 1st. He will have a total of 8 treatment. He was feeling really pretty well until the last two days and is nauseous and has diarreah now. Makes me anxious about the next 7 treatments.
I am glad that you are now with an oncologist that you feel comfortable with. Maybe you can write down your questions for this next appointment with the oncologist and I hope you have someone to go with you as another set of ears. I am wondering if there is a support group available where you are getting your treatment. This may be presumptive of me as I am not the one with the diagnosis but am just caring for some one with it but it seems like coming to terms with this is similar to the grieving process.
Coming here has been very helpful to me. Nothing better than having information from people who are going through the same thing as you. For example, the oncolgist seemed to minimize the side effects of the folfox but having been on here and reading others experiences I knew different. Don't know why they do that. I prefer straight answers.
Please update us after your appointment next week.
Betula
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Welcome and I'm sorry you're
Welcome and I'm sorry you're here. This is a great place to get information and talk to real people who've had the same issues, not a docotr that has no idea what it's really like to go through everything. I'm not being dismissive of doctors, they just don't really know what it's like.
I am on the fourth chemo and had a bad reaction to one several months ago and was scared to try the one I'm now on after that. But this one is completely different as far as reaction and I've been fine so far. The oxy is a tough one for everyone and I don't think anyone avoids having at least some sort of nasty reaction. I did not have nearly as strong of a reaction to it as you have, though, so I have no suggestions for you. I've never had nausea with any of my treatments. Tru mentioned how hard radiation was for her but it was the least unpleasant treatment I've had. I'd do that over anything else. Everyone responds differently to the disease itself and to the treatments so it's hard for anyone to be very helpful.
I hope you will get on track with this. It's important that you let your nc know as soon as you have a bad reaction so they can get some help for you. Not impresive that the nurse didn't get back to you. I have found that when it comes to doctors that have anything to do with cancer they are busy, busy, busy. It's really sad. It shows how many of us are battling this monster.
Take care, stay in touch here, we'll help you as much as we can. Sometimes just knowing you're not the only one is very helpful.
Jan
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Choices
Karen:
Like you, I am a stage 3 post surgery facing choices about chemo. I think it is very important to talk with your oncologist about the benefit the chemo will provide. In my experience, the oncologists do not do a good job warning of the side effects of chemo, particularly the oxilaplatin. But if you review this forum, you will see that the side effects are common and for many are permanent. As of now, after one bad experience, I do not plan to continue with the oxiliplatin unless my prognosis worsens. I am going to start a second course of oral capecitabine on Monday, I am still evaluating its side effects, which kind of creep up on me. There are those who question the value of chemo for stage 3 patients altogether: http://ascopubs.org/doi/full/10.1200/jco.2015.65.3048
My oncologist says the chemo will only give me a 10% reduction in the chance of recurrence of cancer--or put another way, all of the side effects are for a one in ten chance the drugs will help. With the chemo I retain an additional 20% chance of recurrence.
I am surprised how little (in my case not at all) the oncologists talk about other methods to improve your odds. I am still researching the issue, but things like diet, exercise, coffee consumption, vitamin D exposure, tree nut consumption, aspirin, and certain supplements can reduce the chance of recurrence by as much as 50% for each strategy. Now, of course, all these statistics come from people who have chemo (no one pays for studies of people who do not have chemo), but I think there is definite application to people who reduce or eliminate chemo.
Hopefully I will be able to do a comprehensive post on this subject when I get done researching it. Good luck with your decisions.
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BusyJanJan63 said:Welcome and I'm sorry you're
Welcome and I'm sorry you're here. This is a great place to get information and talk to real people who've had the same issues, not a docotr that has no idea what it's really like to go through everything. I'm not being dismissive of doctors, they just don't really know what it's like.
I am on the fourth chemo and had a bad reaction to one several months ago and was scared to try the one I'm now on after that. But this one is completely different as far as reaction and I've been fine so far. The oxy is a tough one for everyone and I don't think anyone avoids having at least some sort of nasty reaction. I did not have nearly as strong of a reaction to it as you have, though, so I have no suggestions for you. I've never had nausea with any of my treatments. Tru mentioned how hard radiation was for her but it was the least unpleasant treatment I've had. I'd do that over anything else. Everyone responds differently to the disease itself and to the treatments so it's hard for anyone to be very helpful.
I hope you will get on track with this. It's important that you let your nc know as soon as you have a bad reaction so they can get some help for you. Not impresive that the nurse didn't get back to you. I have found that when it comes to doctors that have anything to do with cancer they are busy, busy, busy. It's really sad. It shows how many of us are battling this monster.
Take care, stay in touch here, we'll help you as much as we can. Sometimes just knowing you're not the only one is very helpful.
Jan
...they are busy, busy, busy. It's really sad.
That reminded me of the day I went into chemo and I was placed in a little room outside because of the overflow of people. And I go to just one Cancer center of many in the big city. My heart breaks for all of us.
Tru
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It's sickening and horribleTrubrit said:Busy
...they are busy, busy, busy. It's really sad.
That reminded me of the day I went into chemo and I was placed in a little room outside because of the overflow of people. And I go to just one Cancer center of many in the big city. My heart breaks for all of us.
Tru
It's sickening and horrible how many people are being diagnosed. My heart breaks as well. Every time I see someone new on here I feel glad they found the forum but also sad they were diagnosed. I'd love it if we had no new members.
Jan
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Hi Karen
Its tough one, chemo is not eassy, specially after surgery. Statisticlly only 60% finish chemo, after surgery.
Side effects are terrible, I just finished my 4th folfox, hate it, have chemo brain effect, I can feel it, not myself at all, have very hard time concentrating few days after the chemo, but what choice do I have, if you have allergic reaction, they can switch oxilaplattin to something else.
Try to stay focused, chemo is your very good friend at this point, another statistics, 75% of cancers come back within 2 years if treated onlly surgically, in some new studies they are trying to give chemo first than chemo/rad, than surgerry, 90% finish chemo in this case.
Nausea can be managed with medication, drugs can be switched, older we get its harder on body.
As for doctors opinions, I picked ones that are most aggressive, this is very aggressive disease, and to beat it , one has to be aggressive, but as far as I can see there is no rule, what works on one person might not work on another.
Chemo does give 10-20% difference, but somethimes that might mean just enough to push you over the edge.
Just my opinion, good luck to you!
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Hi Karen
Its tough one, chemo is not eassy, specially after surgery. Statisticlly only 60% finish chemo, after surgery.
Side effects are terrible, I just finished my 4th folfox, hate it, have chemo brain effect, I can feel it, not myself at all, have very hard time concentrating few days after the chemo, but what choice do I have, if you have allergic reaction, they can switch oxilaplattin to something else.
Try to stay focused, chemo is your very good friend at this point, another statistics, 75% of cancers come back within 2 years if treated onlly surgically, in some new studies they are trying to give chemo first than chemo/rad, than surgerry, 90% finish chemo in this case.
Nausea can be managed with medication, drugs can be switched, older we get its harder on body.
As for doctors opinions, I picked ones that are most aggressive, this is very aggressive disease, and to beat it , one has to be aggressive, but as far as I can see there is no rule, what works on one person might not work on another.
Chemo does give 10-20% difference, but somethimes that might mean just enough to push you over the edge.
Just my opinion, good luck to you!
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New here
Dear Karen, we were all new here at one time and I sincerely wish you were not here at all.
I think all of us feel like this. I am a stage four colon cancer survivor and have been in remission
for several years now. My experience with colon cancer so affected my world that I wrote s short about my
experience. If you would care to read it. It's on my blog which is on my page. God bless you in this journey.
blessed39
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new here
I am new here too. I would not worry about the length of your posts or the amount of complicated content. That is the reason behind these support boards. You have much more to worry about. Having confidence in your oncologist is very important and doing your own research and homework is even more. I think the 2 approaches can complement eachother. Like several of the other comments, I found that my oncologist (though I think extremely highly of him) and their staff did not fully understand the side effects, treatments of side effects and complementary treatments (diet, exercise, naturopathic medicine, ayurveda). I am a physician and was astounded at what I found in my research while undergoing Folfiri+Avastin. I believe that all of the lifestyle changes I made and complementary therapies I adapted, allowed me to better tolerate the chemo. I wish you all the best in getting through this treatment.
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Complementary treatmentscprw said:new here
I am new here too. I would not worry about the length of your posts or the amount of complicated content. That is the reason behind these support boards. You have much more to worry about. Having confidence in your oncologist is very important and doing your own research and homework is even more. I think the 2 approaches can complement eachother. Like several of the other comments, I found that my oncologist (though I think extremely highly of him) and their staff did not fully understand the side effects, treatments of side effects and complementary treatments (diet, exercise, naturopathic medicine, ayurveda). I am a physician and was astounded at what I found in my research while undergoing Folfiri+Avastin. I believe that all of the lifestyle changes I made and complementary therapies I adapted, allowed me to better tolerate the chemo. I wish you all the best in getting through this treatment.
CPRW: I am interested in learning what you have discovered about complementary treatments and which you have adopted for yourself. Maybe you could start a new post on that topic.
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Long time No post
Sorry for disappearing, but right after I posted here and read a few replies, I think I just freaked out and didn't want to have anything to do with all of this. I've been basically operating in denial since then, spend lots of time doing things to distract myself from this nightmare situation.
I sincerely do appreciate every one of your replies, they are helpful and informative. Meanwhile, I am going to try to start a new thread with updates and try to move ahead. I pray that you all are doing well and once again, thanks!
Karen
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I made it through the oxilaplatin with adjustments along the way
Hi New Here,
This group has been so valuable, with both support and education to me, since the very beginning of my diagnosis and treatment. Chemo (oxy in particular) affects everyone to different extremes. It sounds like you had a severe reaction to the Oxy; before I would stop it, I would discuss with your onc about reducing the dosage. We are all in the battle of our lives and though we all look to improve our percentages for survival, if there is treatment that can improve those percentages why not take it?
I know that in the beginning of your treatments, it seems like the end is so far away, but before you know it you'll be done!
Good luck moving ahead and keep coming back to share your progress.
Barry
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