Need help

vinny3 · November 2006

I am having a hard time mentally thinking to go on with the chemo. Background: I was diagnosed with rectal cancer in April 2005, had chemo/radiation for 5 plus weeks and then in August 2005 had a local resection. Eight months later I was diagnosed with a recurrance in the same area. Surgery involving an abdominoperineal resection with permanent colostomy was done in April 2006. 10 nodes were removed and negative. Pet scan done after was negative. My onc at first did not recommend chemo, then presented to a group of oncs and chemo recommended. Had an opinion from another onc who also recommended it as he said he couldn't adequately stage me due to the first chemo/radiation. Thus I started Folfox/Avastin and have completed 9 cycles.
By most standards I would appear to have tolerated it fairly well. However the peripheral neuropathy has been progressively getting worse as has the cold intolerance, even when it is not that cold indoors. In addition, with this last cycle I got somewhat depressed which is unusual for me. I am usually quite positive and have pulled out of it now. I am not sure I want to continue but at the same time feel like a quitter if I do not. I mentioned it to my oncologist and she said if it had been a new cancer she might agree but they consider it a recurrance and thus the chemo. I feel I probably wasn't a good candidate for a local excision the first time and should have pushed for the major surgery the first time. However I don't regret trying to avoid the colostomy but now that I have it am ok with it. I still need to make more dietary changes but probably don't have the discipline to make the changes that Scouty and Emily have made.

I know that it is my decision to make but appreciate any input.

Thanks, ****

CAMaura · November 2006

HI **** - First off, I am so sorry that you are experiencing this anxiety. I really am. I know neuropathy...I had it with Folfox 6; I have been out of chemo for a year (little more) and the neuropathy remains -- sometimes worse than others. The good thing is that i continue to work out and take a couple of supplements which can be really helpful for you. Vit B6 is really good -- even while on chemo. Try to take it as soon as you can (200mgs/day) and you should feel an improvement - pretty darn immediately.
As for the chemo vs. a strong nutritional path, I will only give you my very honest opinion - and it is two-pronged. First, you have finished a substantial portion of chemo presently; one would hope that it would have killed every last cancer cell - and it is especially wonderful that your lymph nodes were not affected. Secondly, the regimens which Lisa and Emily are on sound difficult, but they really are not. I am on one very similar most of the time. Strong, solid nutrition plus supplements and juicing is not difficult - at all. There has been a lot of confrontation about chemo vs not doing chemo, and I do know that this is your choice.But I have been in your shoes...If you stop, it is NOT as if you have not had A LOT of chemo and that is has had a chance to kill a bunch or any rogue cell. I stopped at nine of 12 but for different reasons; my liver was becoming toxic from the chemo and I had to stop.
Know that you are not a quitter. If you decide to continue, do it very tentatively and watch how you feel. Check your bloodwork to see if the chemicals a taking their toll on your system...It could be causing the depression or it could just be the whole freakin' thing...You are dealing with a lot - and I mean that from my heart.
I hope I have not been confusing...You CAN handle the alternative nutritional work. I know it because I do it. I chose chemo first, but I am glad that I stopped when I did. I have alsolutely no regrets. The nutrition part is not hard and I honestly enjoy it. You will not believe how empowered you feel. It is very different from chemo because YOU are in the driver's seat. I find that to be very important to me.
BUT you might still want to continue chemo and do the nutritional work the second you are off of chemo...I do not want to preach a specific regimen to you. I just want you to know - from someone who did both - how it feels. My thought is that you have a week or so before your next treatment. With luck, you will get a few more posts and I think you might want to e-mail Lisa and Emily (if they don't post for you). ****, you have done a substantial amount of chemo...you are NOT a quitter by any means. Try the B6. It will help you regardless of whether you stop chemo or not. B6 really helps with the nerve damage/neuropathy. All the best to you and know I am hoping a clear answer will come to you about your path. Take care - Maura

Limey · November 2006

****, the only thing i can tell you is that the decision you make is the right one, period. I have struggled over what if I had started chemo right away the first time? what if they would have removed more nodes? should i start chemo right away now that my cancer is back and spread? You and your body know when enough is enough. I suffered the neuropathy and the cold issue terrible back in nov-April when I was on Folfox. enough that if i go back on Chemo, i will only do the 5FU and Avastin. But that is me. someone said to me recently, this is your journey not mine. i didn't like hearing that but it is the truth. I am sure Chemo has done wonders on your cancer. wether it has controlled it or killed it, you have to believe that your commitment to killing the beast has been worth it. For me, I have decided to take 8 weeks and try the natural methods to see what happens. then I will make a decision. Diet is not that hard given the other options. for me, the way i see it is, infusions or juicing, I will go for the dietary changes. Best of luck in making your decision.
Mark

vinny3 · November 2006

CAMaura said:
HI **** - First off, I am so sorry that you are experiencing this anxiety. I really am. I know neuropathy...I had it with Folfox 6; I have been out of chemo for a year (little more) and the neuropathy remains -- sometimes worse than others. The good thing is that i continue to work out and take a couple of supplements which can be really helpful for you. Vit B6 is really good -- even while on chemo. Try to take it as soon as you can (200mgs/day) and you should feel an improvement - pretty darn immediately.
As for the chemo vs. a strong nutritional path, I will only give you my very honest opinion - and it is two-pronged. First, you have finished a substantial portion of chemo presently; one would hope that it would have killed every last cancer cell - and it is especially wonderful that your lymph nodes were not affected. Secondly, the regimens which Lisa and Emily are on sound difficult, but they really are not. I am on one very similar most of the time. Strong, solid nutrition plus supplements and juicing is not difficult - at all. There has been a lot of confrontation about chemo vs not doing chemo, and I do know that this is your choice.But I have been in your shoes...If you stop, it is NOT as if you have not had A LOT of chemo and that is has had a chance to kill a bunch or any rogue cell. I stopped at nine of 12 but for different reasons; my liver was becoming toxic from the chemo and I had to stop.
Know that you are not a quitter. If you decide to continue, do it very tentatively and watch how you feel. Check your bloodwork to see if the chemicals a taking their toll on your system...It could be causing the depression or it could just be the whole freakin' thing...You are dealing with a lot - and I mean that from my heart.
I hope I have not been confusing...You CAN handle the alternative nutritional work. I know it because I do it. I chose chemo first, but I am glad that I stopped when I did. I have alsolutely no regrets. The nutrition part is not hard and I honestly enjoy it. You will not believe how empowered you feel. It is very different from chemo because YOU are in the driver's seat. I find that to be very important to me.
BUT you might still want to continue chemo and do the nutritional work the second you are off of chemo...I do not want to preach a specific regimen to you. I just want you to know - from someone who did both - how it feels. My thought is that you have a week or so before your next treatment. With luck, you will get a few more posts and I think you might want to e-mail Lisa and Emily (if they don't post for you). ****, you have done a substantial amount of chemo...you are NOT a quitter by any means. Try the B6. It will help you regardless of whether you stop chemo or not. B6 really helps with the nerve damage/neuropathy. All the best to you and know I am hoping a clear answer will come to you about your path. Take care - Maura

Thanks Maura, I have been taking 200 mg and sometimes 300 mg of B6 right along. I don't feel depressed now, that was very temporary. However the peripheral neuropathy is bothering my feet more now and I am afraid that will affect my walking (and playing tennis which I hope to do soon again). When I asked my onc regarding the 12 treatment cycles she said it is really just what has always been done. They have no studies comparing a shorter time of chemo. She also indicated that when she started out in oncology breast cancer chemo went for a year and has shortened up alot since.
Thanks again for the input. I'm not really feeling so anxious as I am just feeling that my body (and mind) has had enough.
****

changing · November 2006

Hi, First we want to thank you for replyng to our posts....it means alot to us. Just want to say that my husband started taking the B6 after reading what others had to say about it here. He's only been on it for 2 weeks and says he feels much better. Don't know if it's because of the B6 but his red blood cell counts were stable for the first time with his last lab work....they were steadily falling every 2 weeks prior to the B6. Hope this helps! We are praying for you and PLEASE ...it's obvious...you're no "quitter"!!!!!!!!!!

changing · November 2006

oops one other thing...his onc told him that "if or when" the oxi starts to interfere with his walking or buttoning his shirt...then the oxi dose would be either lowered or discontinued. He took off 3 weeks this time (due to my Mom's passing)and feels alot better. But says he can't imagine that he'll be able to take all 12 treatments. So it's one tx at a time and if he gets real bad again he'll ask to lower it or wait 3 weeks again if that's possible. Like you,my husband will make all his own decisions and prayerfully he won't look back ...knowing he's making the best decisions for his quality of life. He will also go the more natural route when the chemo stops....right now he's too thin to cut down on calories and needs alot of protien with his low red cell count.
We're watching your posts and will be praying with you.

scouty · November 2006

Hi ****,

I can really relate to what you are saying especially about the neuropathy since I will now be sleeping in socks until late spring and my last chemo was over 2 years ago.

I would recommend you find a naturopathic doctor or clinical nutritionist to help you. I was so chemo brain dead, I had no problem doing exactly what someone told me to do. It was gradual at first and probably took 3-4 months for me to completely overhaul most of my diet and other lifestyle changes. I could never have started it alone. I didn't know enough and didn't know where or how to start.

If you do want to start on your own, start by alkalining your diet. Google ph chemical balance of foods and it will tell you smarter ways to eat. As I said in the previous emails to you, let me know any other ways I can help.

Lisa P.

CAMaura · November 2006

vinny3 said:
Thanks Maura, I have been taking 200 mg and sometimes 300 mg of B6 right along. I don't feel depressed now, that was very temporary. However the peripheral neuropathy is bothering my feet more now and I am afraid that will affect my walking (and playing tennis which I hope to do soon again). When I asked my onc regarding the 12 treatment cycles she said it is really just what has always been done. They have no studies comparing a shorter time of chemo. She also indicated that when she started out in oncology breast cancer chemo went for a year and has shortened up alot since.
Thanks again for the input. I'm not really feeling so anxious as I am just feeling that my body (and mind) has had enough.
****

Thanks for your reply, ****. Your doc is so right about the number of treatments; it is arbitrary. As for the neuropathy, I think you could probably handle the annoyance and continue with sports. I do. My neuropathy became worse after chemo stopped...Lord. But it has left my hands for the most part and is only settled in my feet and my forelegs. I guess it will never go away completely....Anyway, good luck making your decision. You sound centered and thinking very clearly. All the best to you - Maura

vinny3 · November 2006

Limey said:
****, the only thing i can tell you is that the decision you make is the right one, period. I have struggled over what if I had started chemo right away the first time? what if they would have removed more nodes? should i start chemo right away now that my cancer is back and spread? You and your body know when enough is enough. I suffered the neuropathy and the cold issue terrible back in nov-April when I was on Folfox. enough that if i go back on Chemo, i will only do the 5FU and Avastin. But that is me. someone said to me recently, this is your journey not mine. i didn't like hearing that but it is the truth. I am sure Chemo has done wonders on your cancer. wether it has controlled it or killed it, you have to believe that your commitment to killing the beast has been worth it. For me, I have decided to take 8 weeks and try the natural methods to see what happens. then I will make a decision. Diet is not that hard given the other options. for me, the way i see it is, infusions or juicing, I will go for the dietary changes. Best of luck in making your decision.
Mark

Limey, thanks for your support. I will give you a call one of these days. Trying to research recurrance rates (or for me recurrant recurrance rates) this week.
****

vinny3 · November 2006

scouty said:
Hi ****,

I can really relate to what you are saying especially about the neuropathy since I will now be sleeping in socks until late spring and my last chemo was over 2 years ago.

I would recommend you find a naturopathic doctor or clinical nutritionist to help you. I was so chemo brain dead, I had no problem doing exactly what someone told me to do. It was gradual at first and probably took 3-4 months for me to completely overhaul most of my diet and other lifestyle changes. I could never have started it alone. I didn't know enough and didn't know where or how to start.

If you do want to start on your own, start by alkalining your diet. Google ph chemical balance of foods and it will tell you smarter ways to eat. As I said in the previous emails to you, let me know any other ways I can help.

Lisa P.

Lisa,

I am going to review the information you sent me and use what I can. My wife had been mainly concerned that I get calories in but I told her to quit buying candy bars as I am not going to eat them anymore ( or rarely). I generally feel pretty good but the neuropathy especially but also the concern regarding what the chemicals are doing is driving my decision. I will look for a naturopathic practitioner as well regardless of my final decision. It is hard to tell which of them you can trust but as you have said to others, one just has to interview them.

Thanks for your help.

****

vinny3 · November 2006

changing said:
oops one other thing...his onc told him that "if or when" the oxi starts to interfere with his walking or buttoning his shirt...then the oxi dose would be either lowered or discontinued. He took off 3 weeks this time (due to my Mom's passing)and feels alot better. But says he can't imagine that he'll be able to take all 12 treatments. So it's one tx at a time and if he gets real bad again he'll ask to lower it or wait 3 weeks again if that's possible. Like you,my husband will make all his own decisions and prayerfully he won't look back ...knowing he's making the best decisions for his quality of life. He will also go the more natural route when the chemo stops....right now he's too thin to cut down on calories and needs alot of protien with his low red cell count.
We're watching your posts and will be praying with you.

Thanks for your support. I know I won't look back too much. I should have done some things differently in the past but feel that what happens is what is supposed to happen. We just don't know the overall plan. I have gone 3 weeks several times and it has helped a little. Mainly for my mental preparedness for the next cycle. However I have found that the neuropathy always seems to get a little worse just before my next cycle even though the cold intolerance gets a little better.
Hope your husband is doing ok. I know there is not a single "right answer" but just a right answer for me.
****

DK2006 · November 2006

Hi Vinny,
First of all, I would like to thank you for your participation in this board. I think that you always have common sense advise and that you are very kind.
When I hit the wall at treatment number 9, I really wanted to quit. I asked a friend who was stage 4 in breast cancer what she would do. She told me that she wished that she had been as aggressive as possible when she was stage 3. Thankfully, my husband said that he would support me in any decision that I made. I choose to keep going and finish the treatment (FOLFOX without avastin). Now that 5 months have gone by, I'm glad that I was aggressive as possible. I haven't had long term neuropathy issues to deal with and I know this isn't true for everyone.
My advice to you would be to strike a compromise. Maybe, continue with the 5FU and leucovorin and STOP the oxaliplatin.
You have completed 3/4 of the treatments and that is pretty awesome.
Best wishes,
Donna

lfondots63 · November 2006

Hi ****,

Like the others said, you are not a quitter. You just need to listen to your body. I did chemo and got 9/12 then just had to stop. I have neuropathy in my hands and feet pretty bad. It also got worse after I was done chemo. I guess the chemo was playing catch up? I have been taking b6 but it doesn't seem to be doing any good right now. My onc told me to go on Glutamine 10 mg/ 3 times per day to help with the nerve damage. (it is a powder) I wanted to post this for every one. There is a company on the web that he said to buy it from. www.baxternutrition.com I left them a message today so just waiting for them to get back to me. The glutamine supplement is called sympt-x. I'm hoping that it will help. My onc also said it might take a while for the nerves to repair themselves. Until then I guess I do like Scouty and wear socks to bed and gloves on my hands when they get cold. And about your decision, whatever you decide will be in your best interest. We all have our input but you know how you are feeling and if you feel in your heart that it is the right thing to do. I think it was the hardest decision I have had to make so far. HUGS from another who has "been there/done that".

Lisa F.

lfondots63 · November 2006

lfondots63 said:
Hi ****,

Like the others said, you are not a quitter. You just need to listen to your body. I did chemo and got 9/12 then just had to stop. I have neuropathy in my hands and feet pretty bad. It also got worse after I was done chemo. I guess the chemo was playing catch up? I have been taking b6 but it doesn't seem to be doing any good right now. My onc told me to go on Glutamine 10 mg/ 3 times per day to help with the nerve damage. (it is a powder) I wanted to post this for every one. There is a company on the web that he said to buy it from. www.baxternutrition.com I left them a message today so just waiting for them to get back to me. The glutamine supplement is called sympt-x. I'm hoping that it will help. My onc also said it might take a while for the nerves to repair themselves. Until then I guess I do like Scouty and wear socks to bed and gloves on my hands when they get cold. And about your decision, whatever you decide will be in your best interest. We all have our input but you know how you are feeling and if you feel in your heart that it is the right thing to do. I think it was the hardest decision I have had to make so far. HUGS from another who has "been there/done that".

Lisa F.

Hi, I just wanted to add more info. I just called Baxter who handles this supplement. 1-888-229-0001, option 2, then option 5. They said that a jar of 480grams (16 days worth) is $48.

MarksKerry · November 2006

I feel that I have no biz putting in my 2 cents worth here -- as the caregiver to a newbie -- but it would seem reasonable to me to look at reducing your dose levels, and possibly ditching the oxalyplatin altogether. There are many, many times in life when I sit around thinking -- should it be 50 or 100 -- I then finally figure out that there is lots of middle ground in most things -- and maybe 75 is the answer (that sounds as if I'm a caregiver with chemo brain!). At any rate -- Mark has been doing the Glutamine and B6 gig -- and although he's only had one treatment -- no neuropathy so far. Yeah, I know -- it's a long road ahead of us! At any rate -- I suppose I'm sort of a 'meet somewhere in the middle' kind of gal, and I'd try to find a middle ground, and if that doesn't help -- know you've done your best and bail!
Kerry

Betsydoglover · November 2006

Hi **** -

You have gotten lots of good advice here. The only thing I have to add is that you might discuss "chemo break" with your oncologist. They do it all the time. Completing 9 cycles is a huge achievement - if you are unsure about quitting altogether, a break might be appropriate. The break might turn into the end of chemo or alternatively give your body some time to recover before taking the last 3 treatments.

I'm not a doctor but I would think that 9/12 treatments have done most of the work already.

Good luck with your decision. Wish I could help with neuropathy issues, but my neuropathy while really acute was also very temporary.

Take care,
Betsy

cherriann · November 2006

hi ****,
im glad you brought because the oxi is causing me severe siskness and after only 4 treatments i too am considering stopping. i just cant picture being so sick for the next 4 months. i am better on my off weeks but the neuropathy stays. i too have the colostomy entire rectum removed, they also are not sure with my stage 2 or 3 due to shrinkage and amount removed during biospy. i wish you luck on your decision. i wish i could give you more input but i am sort of in your shoes. please let us know what you decide and what reaction you get from it. thanks for the post it may help me in my decision.
take care, cherri

JADot · November 2006

Hi Vinny:

Have you tried writing down your pros, cons, risks, trade-offs on paper and just stare at it for a few days? Writing things down have always helped me take my thinking to the next level. I think deep down you know what the right thing is to do.

....just my 2 cents.

Cheers,
Ying

jana11 · November 2006

****,

I am so sorry you are having second thoughts, doubt, and some sadness. Unfortunately, it is just par for the course. It does improve..

The only really important matter for you is to limit any feelings of regret... if you are to stop chemo early (not quit, simply decide it is best) will you regret it later if anything recurs, or will you be confident you did the right thing. Not an easy matter.

I have read and my friend, an onc at MD Anderson, said more patients tolerate CPT11 better than oxali because of the neuropathies. I am on CPT11 and it is going OK. Talk to your onc about lowering dose, ending early, switching drugs, etc. You still have so many choices.

Lisa gave me the wonderful plan to find a PhD nutritionist, which wasn't easy to do in Houston. I did finally find one and I love her and her suggestions. I take loads of vitamins, gave up red meat and poultry, and try to only eat organic. I feel good and my bone marrow continues to be normal

I found her by looking in the phone book.

Good luck with you decision.. we are with you. jana

pink05 · November 2006

****,

This is a very difficult decision for you, I am sure. You have gotten lots of great advice. Only you and your family can decide what is best for you. I know that when my dad first was diagnosed, we went through a lot of "what ifs". First of all, it is very, very important for you not to dwell on what has happened in the past. Focus on the present and what you need to do for yourself now. Yes, chemo is not an easy thing to have to go through and it leaves lasting side effects. We all know that. It really is up to you to decide if you will be able to tolerate anymore. Could you possibly take a break from it and then continue the remaining cycles? I know that my dad's onc stopped oxaliplatin early due to extreme neuropathy. He told my dad that we could always revisit it if needed. This was after about nine cycles of it (right about where you are now). Also, as Scouty has said, you don't need to totally revamp your diet all at once. Believe it or not, my stubborn father (who is very old school and set in his ways) is making some small gradual changes. I know it appears difficult, but really it's not that bad. I've had to change my own diet due to gestational diabetes and believe me, it wasn't easy at first, but I actually felt better from it and got used to the strict diet I had to be on. It's definitely possible.

Whatever you decide, make sure you discuss it with your doctor and your loved ones. I will be praying that you make the best decision for you.

God bless,

-Lee-

taraHK · November 2006

Hi Vinny,
Tough choice(s). I agree with much that has been said here. For myself, I try not to look back and second-guess what I might have done differently -- we all made tough choices, under pressure, with the best information we had at the time. As for the future -- I have some experience with deciding whether to continue or not. I was on FOLFOX. I ended up quitting after 11 (of a planned 12) cycles. My oncologist said, as others have, that there is no hard scientific evidence that 12 is better than, say, 10. I might encourage you to think broadly and consider options such as taking a break, reducing dosage, or cutting out some of the drugs (eg the oxaliplatin). "Get that vermouth out of my martini" haha. Maybe just 5FU? I heard that "stop-start" chemo (ie taking breaks) is getting to be a more popular idea, at least in research circles. But, whatever you decide will be the right decision and will have the wholehearted support of all.
One final note: I had peripheral neuropathy with the folfox. Fingers and toes. Continued after I finished. But, it is completely gone from my fingers (within a few months) and is almost gone from my toes. It's been 10 mos since i finished chemo. My toes still get a little cold and tingly but no pain and I can do all my sports/activities - no problem. It's an individual thing, of course, but just wanted to share my tale with you.

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