Newbie on the board

P_I_T_A
P_I_T_A Member Posts: 133
edited March 2014 in Colorectal Cancer #1
Hi all! I hope this post comes across legible. I found the site around 11pm last night and ended up reading posts until 4am, so I'm a little tired today. What a wealth of information and support. I saw my primary a few months back for my 'turning 40' physical. She suggested a colonoscopy since my mother had cc(stage 1, 18yrs and still surviving, she was Dx at 48yo.) Well, sure enough, 2 sigmoid polyps(1 positive.) Dx on 8-18-09, which just so happened to be my 1yr. wedding anniversary. I'll never forget that day. "Hi honey! Happy anniversary! By the way, I have cancer." At least at will be easy to remember my survival anniversary, right? I had a pre-op CT and everything came across clean as can be. Even my colon looked normal. So, I'm thinking stage 1 at worst. I had one of the best, if not the best, colorectal surgeon in GA. His prognosis was resection, no rad, no chemo. I had resection surgery 3 weeks ago. Still recouping, but the op went off without a hitch. Post-op path report found no cancer in the colon , so it was gone with the polyp pre-surgery. However, one .2cm 1ymph out of the 13 removed came back positive. SMACK! Right between the eyes, your stage 3A and you just earned yourself a six mo. port infused FOLFOX Tx. Here's my dilema. I'm familiar with OXI side effects and I'm going to be going through treatment during the four coldest months of the year. What I'm deliberating over is whether or not it's worth delaying treatment for 4-5 months just to increase my chances my 5-7%. Especially, with all signs pointing to the cancer being gone and still recovering from the resection surgery. The top and bottom of my incision isn't healing as easily as I had hoped and I don't want chemo to inhibit that. My surgeon says it would somewhat, but not to worry. I really need to get back to work too. I work on a computer all day, so hand neuropathy won't cut it. Sorry for the lengthy post. Figured I would background myself in one post instead of a large number of small ones. I'm looking forward to future conversations and knowledge sharing in the future. - DJ
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Comments

  • jen58
    jen58 Member Posts: 34
    i'm new myself, and the
    i'm new myself, and the wife/care-giver of someone that's been clinically staged at 3 for HNPCC-related colon cancer, signet ring cell

    he is having his surgery this saturday, followed by 6 mos of chemo (this may change after surgery/pathology results)

    we are in kansas city, where it gets bitter cold in winter time -- i am freaking out about this as it pertains to possible neuropathy for my hubby... hearing how others combat it is helping me so much.

    i think it doesn't matter what time of year it is -- the side effects are the same, at least from what i have seen others say

    we are buying many pairs of gloves and different kinds of socks and everything else we can think of to keep him warm this winter during treatment

    are electric blankets or electric socks not safe for chemo/cancer patients? do 1 or 2 pairs of socks/gloves usually help, or does it need to be more?

    i have a ton of questions myself and dont even know where to start :(

    would love to hear people thoughts dealing with this particular side effect!

    thanks so much

    hugs

    jen :)
  • Patteee
    Patteee Member Posts: 945
    I am not sure I understand
    I am not sure I understand your thought. To delay chemo for 4-5 months or to totally not do chemo?
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    hi pita
    welcome to our online family here you will find some of the most genuine and wisest folk you will ever come across. lam stage 3c l know normally you are given a 12wk window in the uk to start your chemo l went over that by a month as my oncologist wanted me to have ivf first but unfortunately that failed.when l came back for treatment he wanted me to try again! my point is my oncologist said there really isnt a window of time depending on age etc also he went by a european study conducted on groups of people having chemo within 12 wks and those after there was not much difference but the choice is up to you and your oncologist really.as for oxi lve had it through the summer 3 sessions to go and it is getting colder in the uk and boy is it hitting me now the side effects especially to my chest plus lam planning to return to work next month part time god willing so l hope you will make the right decision for you.big hugs sonia
  • Patteee
    Patteee Member Posts: 945
    jen58 said:

    i'm new myself, and the
    i'm new myself, and the wife/care-giver of someone that's been clinically staged at 3 for HNPCC-related colon cancer, signet ring cell

    he is having his surgery this saturday, followed by 6 mos of chemo (this may change after surgery/pathology results)

    we are in kansas city, where it gets bitter cold in winter time -- i am freaking out about this as it pertains to possible neuropathy for my hubby... hearing how others combat it is helping me so much.

    i think it doesn't matter what time of year it is -- the side effects are the same, at least from what i have seen others say

    we are buying many pairs of gloves and different kinds of socks and everything else we can think of to keep him warm this winter during treatment

    are electric blankets or electric socks not safe for chemo/cancer patients? do 1 or 2 pairs of socks/gloves usually help, or does it need to be more?

    i have a ton of questions myself and dont even know where to start :(

    would love to hear people thoughts dealing with this particular side effect!

    thanks so much

    hugs

    jen :)

    My treatments ended in Jan,
    My treatments ended in Jan, so I was part in the winter, part in warmer weather. I kept a pair of those stretchy knit gloves on all the time! Even slept with them on! Then when I was going outside I put a large pair of wool mittens over them. Kept something on my feet at all times. Kept my car in the garage and someone else heated it up for me- also had an electric starter put on. One of the most critical things? was a handicapped parking tag- that I ended up getting shortly after starting chemo. I used it at the grocery store and at work. I would say that saved me and kept me more independent through chemo-
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    jen58 said:

    i'm new myself, and the
    i'm new myself, and the wife/care-giver of someone that's been clinically staged at 3 for HNPCC-related colon cancer, signet ring cell

    he is having his surgery this saturday, followed by 6 mos of chemo (this may change after surgery/pathology results)

    we are in kansas city, where it gets bitter cold in winter time -- i am freaking out about this as it pertains to possible neuropathy for my hubby... hearing how others combat it is helping me so much.

    i think it doesn't matter what time of year it is -- the side effects are the same, at least from what i have seen others say

    we are buying many pairs of gloves and different kinds of socks and everything else we can think of to keep him warm this winter during treatment

    are electric blankets or electric socks not safe for chemo/cancer patients? do 1 or 2 pairs of socks/gloves usually help, or does it need to be more?

    i have a ton of questions myself and dont even know where to start :(

    would love to hear people thoughts dealing with this particular side effect!

    thanks so much

    hugs

    jen :)

    Bitter cold in Kansas City,
    Bitter cold in Kansas City, you've got to be kidding, right? ; Seriously, I live in MN, my parents and brother in IA, and my sister is in KC. Her winters are a picnic compared to the rest of us! We woke up to a white winterland this morning - and it isn't even the end of October yet. We are in for a long winter this year.

    Rather than reposting, I'll refer you to two of my recent posts - one addressing the neuropathy, and the other addressing some odds and my personal decision to go ahead with FOLFOX rather than just Xeloda or 5-FU. Look for my posts under "newbie with questions," and "crc has a 5 year survival rate of zero?"

    I've posted info about some things that can help reduce neuropathy, and the benefits of adding oxy if you can tolerate it.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Everyone has to decide for themselves
    Here they like you to start within 4-8 weeks of surgery.

    The way I look at it is if there are any stray cancer cells out there that have started moving in the lymphatic system, I'd much rather go after them full guns NOW, then wait till they may have spread to my liver, lungs, or more nodes. Just my own personal choice, and everyone has to do what is best for them, but I think if I didn't do chemo now, I wouldn't be able to bring myself to do it later, unless I was told the cancer had spread.

    Also I know that if I do chemo now and the cancer returns, I can at least know I did what I could. If I don't do it now and it returns, I'd be forever kicking myself about my decision. I'm already angry with myself for not being more aggressive with my doctors the last year - I should have had dx a lot sooner than I did. I learned my lesson.

    I asked a lot of questions of others about the nueropathy for two reasons. One is I have RSD/CRPS which is in remission. I don't want to chance it returning. The other is because I have to be able to type also. Most feedback I got was positive on the typing. Very few people have problems to the point they can't type. And if you start to have a lot of trouble you can always ask them to cut the dose of oxy, or cut the oxy out completely.

    Good luck whatever you decide.
  • P_I_T_A
    P_I_T_A Member Posts: 133
    Patteee said:

    I am not sure I understand
    I am not sure I understand your thought. To delay chemo for 4-5 months or to totally not do chemo?

    Delay
    Still plan on doing it, just around March or so.
  • Muzzy
    Muzzy Member Posts: 175 Member
    welcome
    Hello and welcome to the board.

    November 23 is my year anniversery for surgery. I Started the same treatment in January in Michigan the dead of winter. Dress warm have some drive you or use valet parking and have them warm up the car. I'm lucky my truck has remote start. DON'T TOUCH ANYTHING COLD WITH BARE SKIN. I had gloves on for 3 months. If it not room temp don't touch eat or Drink.

    As for waiting for 4 or 5 month, it your life your talking about. Do you really want to take chances with it. I know i did not. I want to live a long life and i will do what it takes to improve my chances to get there. Jobs come and go, but the good Lord only gives us one life on earth. You are the only one that can make this choose, and the only one thats going to have to live with it.

    Welcome to are little family and i hope this helps

    Jeff
    Just happy to be here!!
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Patteee said:

    I am not sure I understand
    I am not sure I understand your thought. To delay chemo for 4-5 months or to totally not do chemo?

    Delaying your Treatment
    I wouldn't delay your treatment because of the cold weather. It makes some difference when you go outside, but you have to compensate for the cold like scarfs, mittens, etc. But I went through this in summer and it will be what it is - still cold to everything. There will be others that respond that have gone through this during the winter so listen and adhere to their suggestions also. I often thought about going through it during winter or summer, but I would rather go through it in the winter and leave my summer to enjoy, but I didn't get that choice. I did chemo/radiation starting in January, then surgery the end of March, then more chemo starting in May. You have to do what you have to do. Get your plan and program going and do what you have to. Buy that electric blanket. I looked at one today at it was $115 - wow that's a lot, but I think I'll go back and get it because I'm still cold. Good luck with your decision.

    Kim
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Muzzy said:

    welcome
    Hello and welcome to the board.

    November 23 is my year anniversery for surgery. I Started the same treatment in January in Michigan the dead of winter. Dress warm have some drive you or use valet parking and have them warm up the car. I'm lucky my truck has remote start. DON'T TOUCH ANYTHING COLD WITH BARE SKIN. I had gloves on for 3 months. If it not room temp don't touch eat or Drink.

    As for waiting for 4 or 5 month, it your life your talking about. Do you really want to take chances with it. I know i did not. I want to live a long life and i will do what it takes to improve my chances to get there. Jobs come and go, but the good Lord only gives us one life on earth. You are the only one that can make this choose, and the only one thats going to have to live with it.

    Welcome to are little family and i hope this helps

    Jeff
    Just happy to be here!!

    Same day
    Hey, Jeff.

    I didn't realize we share the day. Nov. 23 will be my 2 year anniversary of my surgery. A toast to us!

    *hugs*
    Gail
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    I'd get it done
    I didn't have to do chemo, but if it had been recommended, I certainly would have done it as soon as I could. I wouldn't delay.

    *hugs*
    Gail
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Sonia32 said:

    hi pita
    welcome to our online family here you will find some of the most genuine and wisest folk you will ever come across. lam stage 3c l know normally you are given a 12wk window in the uk to start your chemo l went over that by a month as my oncologist wanted me to have ivf first but unfortunately that failed.when l came back for treatment he wanted me to try again! my point is my oncologist said there really isnt a window of time depending on age etc also he went by a european study conducted on groups of people having chemo within 12 wks and those after there was not much difference but the choice is up to you and your oncologist really.as for oxi lve had it through the summer 3 sessions to go and it is getting colder in the uk and boy is it hitting me now the side effects especially to my chest plus lam planning to return to work next month part time god willing so l hope you will make the right decision for you.big hugs sonia

    Here is my take or opinion on it....I had the same diagnosis but with no node involvement..You say you had 1 node involved...Ok, that in itself tells me that it could be hiding in your bloodstream or lymphatic system as a microscopic single cell....1 single cell, waiting until the right situation to start its regeneration process over again....1 single cell...I had an option to take or not take the post op chemo oxal/leuc/5fu for the sytemic "prevention" that it would give me and I am talking about my life here so if I seem unappropriate I am referring to myself and only myself, and I tend to be awfully hard on my self sometimes.LOL...So. I was told by my Oncologist that post op would give me another 5% increase of survival...from 60% to an increase to 65%. That got me to thinking why should I be sick another 6 months just "in case" there might be 1 more cell hiding in there. I wondered how good my odds would be if I didn't do the post op chemo, well, I was diagnosed with cancer so I thought my odds aren't to good... I then talked with my surgeon about it and he told me that Oncologists seemed to lowball the odds and that the post op chemo from what he has seen (and he does this everyday) increases the odds another 15-20% increase instead of 5%...That sold the deal for me, also I had one of my kids tell me that she didn't want me to ever leave her....I have done the 6 months chemo and proud I did...my cea levels are less than 1 all counts are great and I am considered to look to live a long life...
    Doing chemo through the winter....why not? you will be almost done with it the time spring rolls around. If neuropathy starts kicking in then simply tell them to either cut back or just do the leucovrin and 5fu alone and cut out the oxaliplatin all together. It is ultimately your choice. We had a similar discussion with another a while back and it got kind of bad. I don't want this to happen here. Remember, I am posting this out of respect for you and also to try and shed some light on the question asked by one of our new friends here........Good Luck with your Journey and your decision...if you need anything let me know........Clift
  • Patteee
    Patteee Member Posts: 945
    P_I_T_A said:

    Delay
    Still plan on doing it, just around March or so.

    and delaying it due to
    and delaying it due to potential neuropathy issues in the winter?
    First, my neuropathy was at it's worse after chemo, not during chemo. I had issues this summer, 6 months after chemo was done, with running the AC in my car. KC can get beastly in the summer and AC is definitely an issue to some extent with neuropathy. Second, I never really had problems typing due to neuropathy. I had problems keeping my head up, being weak, sweating profusely and feeling like crapola. Third, not sure there is a good time, or the perfect time in one's life to get cancer and do chemo. Small polyps, no evidence of cancer at the time of resection, if it weren't for that small pesky node, you would be in the clear. I wish cancer were more predictable, surely your evidence should be a good sign for delaying? Unfortunately, it isn't predictable, nor is it fair.
  • PGLGreg
    PGLGreg Member Posts: 731
    P_I_T_A says: "What I'm
    P_I_T_A says: "What I'm deliberating over is whether or not it's worth delaying treatment for 4-5 months just to increase my chances my 5-7%. Especially, with all signs pointing to the cancer being gone and still recovering from the resection surgery."

    I don't understand this. If you have a lymph node that tests positive for cancer, that is a sign pointing to the cancer being present, not "being gone". And how could delaying treatment possibly increase your chances? It will decrease your chances, if anything. I think you should do the chemo, if that's what your doctor recommends.

    --Greg
  • kristasplace
    kristasplace Member Posts: 957 Member
    Welcome, PITA
    I'm tending to agree with most everyone else in saying, don't delay. You're probably going to get bad neuropathy no matter what time of year it is. I started in March, 08 when it was very cold, and it just got worse the warmer it got. So i don't think it makes a difference.

    Many people get spread and/or recurrence without any lymph node involvement at all. I think you should wait just as long as it takes to heal from your surgery then do what you need to do to get rid of the cancer. Did you have to get an ostomy?

    Much luck, and many hugs!
    Krista
  • robinvan
    robinvan Member Posts: 1,012
    Hi DJ
    Welcome to the Colorectal Cancer discussion board. So sorry to hear about the positve lymph node. Between the eyes indeed! Especially if it was looking like stage 1 to begin with.

    I was diagnosed stage 4 right off the bat in August 2004, as it followed the lymph to the liver. Virtually symptom free! It has a way of doing that!

    I had FOLFOX for 3 months and then FORFIRI for another 3 months after an initial colon resection and liver resection. Fortunately I was off work on a good medical plan. I was not badly affected by the neuropathy and managed it well in the cool winter climate of Vancouver, BC (think Seattle) (cool damp, rarely freezing)

    As others have said here, I think the lymph involvement trumps the otherwise light show in the colon. Colon cancer seems to be able to skip through to stage 3 and 4 fairly quickly, sometimes with only small colon tumours and no "local spread". Lymph node involvement indicates the beginning of a systemic problem. If it were me, I would not leave it to move on to the liver or elsewhere.

    Get ahead on the research of how to minimize the chemo side-effects. You may find they are not as bad as you expect.

    Good luck in your difficult decision making.

    Rob; in Vancouver
  • butterfly23
    butterfly23 Member Posts: 256
    Don't Delay!
    I am on oxy and also heading into the winter months! I live in Rhode Island so it does get very cold. But there are things we can do to keep warm! You don't want your cancer to have a chance to spread in those few months. Just my opinion. I have heard that alot of people don't even get the real side effects until they are done with treatment, so I would go for it. Like I said this is just my opinion, whatever you choose , I wish you the best of luck and your are in my prayers!
    Karyn
  • butterfly23
    butterfly23 Member Posts: 256
    Don't Delay!
    I am on oxy and also heading into the winter months! I live in Rhode Island so it does get very cold. But there are things we can do to keep warm! You don't want your cancer to have a chance to spread in those few months. Just my opinion. I have heard that alot of people don't even get the real side effects until they are done with treatment, so I would go for it. Like I said this is just my opinion, whatever you choose , I wish you the best of luck and your are in my prayers!
    Karyn
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Oxi side effects
    HI Pita, I am in Villa Rica, Ga. and my chemo ran from Feb. til August 12th. I'm 8 weeks out from chemo and my neuropahy has worsened AFTER the end of chemo. I can still use the computer, tho it can be uncomfortable in the afternoon. I kept my hands busy during the months of chemo, knitting and typing, etc. It's not unbearable! More of an aggravation and clumsy...

    Please don't delay chemo. I'm also Stage III with a few microscopic cancer cells in 5 out of 17 lymph nodes. Chemo increased my 5 year disease free survival rates by 20%. Please don't take a chance and risk your health.

    BTW.... the chill in Georgia did not bother me Feb. - May. The summer heat bothered me a lot!



    Buzzard (Clift) 5% IS 20%. It's all in how you do the math. 100% - 60% = 40. 40% X 5% = 20%. 60+20=80% Hubby is a math major/ teacher. I kept trying to figure out 'if Vit D3 adds 39%... so he showed me the math. :o)

    Diane
  • DennisR
    DennisR Member Posts: 148
    I'm typing this post with
    I'm typing this post with numb fingers as a result of the Chemo I had last summer, my feet are numb on the bottoms as well. I have an electric blanket (several in fact) that I use, but I still can't tell whether my feet are warm or not.
    The point is that whether you get the Chemo in the summer or the winter the side effects will be the same and if you have the Cancer on the run, I advise doing the Chemo ASAP and finish it off if you can.
    DennisR