Scared of Chemo

Sarah22
Sarah22 Member Posts: 13
edited July 2018 in Colorectal Cancer #1

I was just diagnosed at 38 with stage 3b colon cancer after resection and am freaking out. I have 2 small children 5 and 1.  I’m meeting with an oncologist next week to make a plan. Chemo scares the Heck out of me. Anyone mind sharing experiences of first chemo round and symptoms you’ve had. Did you continue working? How did you take care of your kids? Manage life? I’m a fighter and know I’ll make it through this awful nightmare just need some honest guidance. Tired of people putting on a happy face and telling me I’ll be fine. Im not dumb, chemo sucks, just need to know how to cope with the bad times. Thanks a bunch everyone. We got this!!!!

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Comments

  • abita
    abita Member Posts: 1,152 Member
    edited July 2018 #2
    First and foremost, remember

    First and foremost, remember that chemo is only 6 months. It is going to suck, and your body will take time to recover. But when it is at its worst, remember, there is an end, at which point you go back to "normal". Do you know which chemo you will be on? I started on folfox, then had a reaction to oxaliplatin, and switched to folfiri. Before you worry about reaction, first, I am allergic to EVRYTHING, so not surprised, plus, I had a gap for liver surgery (I was diagnosed at stage 4) and I guess reactions are more common in that case. For both, fatigue is bad. Not going to sugarcoat. Not the same as having kids, but I am single, and able to manage, but I don't do much, and having young kids is different. I started working from home after I recovered from the surgeries. I have had a bit of indigestion, but no loss of appetite. Quite the opposite, the steroid they give, plus all else, and I have gained weight. I got the takehome pump, the two days after that is taken off, so days 4 and 5 of the cycle are the most drastic fatigue. Holiday, so can't write more now, but will answer any questions you have. People can help you understand more when you know which drugs you will be taking. 

  • Sarah22
    Sarah22 Member Posts: 13
    abita said:

    First and foremost, remember

    First and foremost, remember that chemo is only 6 months. It is going to suck, and your body will take time to recover. But when it is at its worst, remember, there is an end, at which point you go back to "normal". Do you know which chemo you will be on? I started on folfox, then had a reaction to oxaliplatin, and switched to folfiri. Before you worry about reaction, first, I am allergic to EVRYTHING, so not surprised, plus, I had a gap for liver surgery (I was diagnosed at stage 4) and I guess reactions are more common in that case. For both, fatigue is bad. Not going to sugarcoat. Not the same as having kids, but I am single, and able to manage, but I don't do much, and having young kids is different. I started working from home after I recovered from the surgeries. I have had a bit of indigestion, but no loss of appetite. Quite the opposite, the steroid they give, plus all else, and I have gained weight. I got the takehome pump, the two days after that is taken off, so days 4 and 5 of the cycle are the most drastic fatigue. Holiday, so can't write more now, but will answer any questions you have. People can help you understand more when you know which drugs you will be taking. 

    Thank you so much!!! The

    Thank you so much!!! The surgeon said it will most likely be folfox but will update once I meet with the oncologist. 

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    edited July 2018 #4
    Chemo

    The only thing I would advise is to get your oncologist to discuss the odds of recurrence with or without the chemo, as well as the side effects to expect.  The necessity of being there for your children would likely be a great motivator to optimize your odds for disease free survival.  Some people breeze through chemo, while others have a hard time getting of bed.  If you proceed with chemo, it would likely be a good idea to have a support system in place in case things are not easy.  Once you know the chemo regime you are considering, searching that term in these posts can provide valuable real life insight that may not be available from other sources.  Sorry you are facing these issues.

  • Sarah22
    Sarah22 Member Posts: 13
    edited July 2018 #5

    Chemo

    The only thing I would advise is to get your oncologist to discuss the odds of recurrence with or without the chemo, as well as the side effects to expect.  The necessity of being there for your children would likely be a great motivator to optimize your odds for disease free survival.  Some people breeze through chemo, while others have a hard time getting of bed.  If you proceed with chemo, it would likely be a good idea to have a support system in place in case things are not easy.  Once you know the chemo regime you are considering, searching that term in these posts can provide valuable real life insight that may not be available from other sources.  Sorry you are facing these issues.

    Thank you!! My kids will

    Thank you!! My kids will definitely give me the motivation to beat this!! I will be sure to bring up your suggestions at my appointment And will search once I know the plan. 

  • traci43
    traci43 Member Posts: 773 Member
    working during chemo

    After my initial surgery I opted to stay home for the 6 months of chemo-FOLFOX with Avastin.  I had the usual side effects with cold sensitivity and fatigue.  the three days wearing the pump I had the most fatigue.  When my cancer recurred (I was Stage IV to start) I opted to keep working during post-operative chemo.  It was tiring on some days and my boss let me work at home more, but I did it.  I was on Xeloda, oxyiplatin and Avastin that time.  Without the pump I had much less fatigue.  One thing I did do was get a housekeepr and I've kept her for the last 11 years.  I had my husband do the heavy lifting-large water bottles, taking the trash out, etc. but did much myself.  We all have some side effects and some have it easier than others. 

    I agree with others have a plan in place for help, especially the first few days after infusion when the fatigue is at it's worst.  One thing I will note, I have continued to work since my diagnosis 11 years ago and I feel that has helped me to keep moving forward.  I hope your side effects are minimal and that you remain NED.  Traci

  • Sarah22
    Sarah22 Member Posts: 13
    edited July 2018 #7
    Thank you Track for sharing

    Thank you Traci for sharing your experience!!

  • Sarah22
    Sarah22 Member Posts: 13
    edited July 2018 #8
    lizard44 said:

    Folfox

    Sorry you have to begin chemo, but hope it goes well for you. I was diagnosed  with stage 4  rectal cancer in  2015 and began  chemo with Folfox plus Avastin.  As others have mentioned, fatigue is pretty much a given, so it would be good if you had someone around to help with the children.   I was lucky in that I'm older and retired so didn't have to worry about work or  children.  I didn't  have   many side effects  other than the fatigue, and a drop in my white  blood cell count that delayed treatment a couple of times before I began getting shots to raise the  cell count. I was able to complete  8 rounds of Folfox, but several   members here have had to  drop the Ox part of Folfox (oxaliplatin)  after  a few rounds because of  neuropathy. I have  a little neuropathy in my feet still, but  it's not  really bad and seems to come and go.  I was advised when I started to not let my hands and feet get cold (I slept in socks even in summer), to avoid eating or drinking anything cold, and to wear gloves when I reached in the refrigerator. One thing I learned in dealing with the fatigue is to not fight it, work with it and listen to your body- let your body rest when it needs to, but don't become a  couch potato- stay as active as you can (that's probably not a problem with two small children around). Everyone reacts differently   to chemo- I hope you are one  of those who has minimal side effects.  I've been on   several different chemo regimens and am still  on maintenance chemo  (Erbitux and irinotecan every other week) without it having  an adverse effect on my quality of life. If you do have  any side effects make sure to let your oncologist know- thay can often give you pre-meds to alleviate  the problems. It might help to keep a journal   of how you're feeling once you begin chemo- it's easy to fotget to mention something you meant to tell the doctor, especially if you  get in a hurry or  have other things on your mind. Best of luck with your treatment. Check back in  and let us know how it's going for you.

    lizard44/Grace

     

    Thanks so much Grace!! Great

    Thanks so much Grace!! Great ideas. I got a few journals from friends while in the hospital so I will definitively use them to track my side effects and overall well-being. Great idea!!! My mom is available to me anytime I need her so that will be most helpful. I will keep everyone updated!!

  • lisarjxo
    lisarjxo Member Posts: 3
    edited July 2018 #9
    Chemo

    Hi honey, I too have colon ca with one damn positive lymph node. I am getting my third folfox treatment tomorrow. I am a nurse and my kids are little older.I will be straight up honest. Everybody is different but I find chemo horrid.I have to try to go back to work bc my sick time is used up and bills continue.I find chemo makes me very tired yet I can’t sleep. I do suffer from nausea.here is the list of anti nausea meds you need zofran,compazine,decadron,reglan and maybe MarinoL. I take it all.Anything to get through it. Ohhh also don’t forget hurricane solution to swish your mouth.It is a shame we have to go through this.It will save us. Please text me anytime, be well

     

  • abrub
    abrub Member Posts: 2,174 Member
    lisarjxo said:

    Chemo

    Hi honey, I too have colon ca with one damn positive lymph node. I am getting my third folfox treatment tomorrow. I am a nurse and my kids are little older.I will be straight up honest. Everybody is different but I find chemo horrid.I have to try to go back to work bc my sick time is used up and bills continue.I find chemo makes me very tired yet I can’t sleep. I do suffer from nausea.here is the list of anti nausea meds you need zofran,compazine,decadron,reglan and maybe MarinoL. I take it all.Anything to get through it. Ohhh also don’t forget hurricane solution to swish your mouth.It is a shame we have to go through this.It will save us. Please text me anytime, be well

     

    Add Ginger and Atarax to the list of anti-nausea meds

    It has been shown that ginger capsules (1 g twice a day) enhances the efficacy of the other anti-nausea drugs.  For me, Atarax (Hydroxyzine HCl) was another important tool in my arsenal, as was ativan.

    Chemo is scary - I think moreso in anticipation than in reality (tho I don't know that I'd do it again.)  Good luck, and remember that you decide for yourself the value of the chemo.  Also let your dr and chemo nurses know about ALL side effects, no matter how trivial.  Your doses may be adjusted or they may have other suggestions.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited July 2018 #11
    Chemo is not a walk in the park....

    and its a gift that keeps on giving. BUT, if it keeps on giving, it means your alive and moving forward, and thats a good thing. 

    I remember well my first chemo.  I went in to the Cancer center and was taken back to an exam room. Here, the chemo nurse (they are so lovely) accessed my port - Do you have a port? - I had been really scared about this part. Such a big needle, and it stays in for so long. Surely it would be a terrible expereince, but NO, it was fine. I had applied some lidocaine gel about 30 minutes prior, and then they sprayed it. I barely felt it go in. I was now hooked up to a tube. 

    After sitting for a while, I was called back to the infusion room, where more chemo nurses hooked me up to my chemo bags. All of this is painless. I did get a tingling in my throat, and the nurses came and slowed the chemo infusion down a notch. 

    After the four hour infusion, I had to travel to get hooked up to my 5FU. I know, wild. Its different now. But I did it and got hooked up to 5FU and came home attached to that for 48 hours. 

    The first infusion did make me tired. The mouth sores and sensitive skin started on the second infusion. Then it all cranked up, and I have a long list of things that happened to my body, but I won't bore you with them, because everyone reacts differently, and you may just breeze right on through and only suffer a few. Fatigue will definitley be one of them, I would guess. 

    I think your chemo nurses will tell you to be careful around your children the first few days after infusion, if you are on Oxaliplatin and 5FU. Be sure and ask them.  Things like keeping the toilet seat down after you go to the bathroom and flush.   

    Its all very scary that first visit, but you will soon become acustomed to all of it. 

    I wish you well. Come back as you move forward with your treatments, and we can share more of what you can expect. Not meaning its what will happen.

    So yes, no beating around the bush. It is a long road, but you will be surprised at how well you do. Go forward with a positive attitude, and that will really help. 

    I wish you all the best. 

    Tru

  • lizard44
    lizard44 Member Posts: 409 Member
    Folfox

    Sorry you have to begin chemo, but hope it goes well for you. I was diagnosed  with stage 4  rectal cancer in  2015 and began  chemo with Folfox plus Avastin.  As others have mentioned, fatigue is pretty much a given, so it would be good if you had someone around to help with the children.   I was lucky in that I'm older and retired so didn't have to worry about work or  children.  I didn't  have   many side effects  other than the fatigue, and a drop in my white  blood cell count that delayed treatment a couple of times before I began getting shots to raise the  cell count. I was able to complete  8 rounds of Folfox, but several   members here have had to  drop the Ox part of Folfox (oxaliplatin)  after  a few rounds because of  neuropathy. I have  a little neuropathy in my feet still, but  it's not  really bad and seems to come and go.  I was advised when I started to not let my hands and feet get cold (I slept in socks even in summer), to avoid eating or drinking anything cold, and to wear gloves when I reached in the refrigerator. One thing I learned in dealing with the fatigue is to not fight it, work with it and listen to your body- let your body rest when it needs to, but don't become a  couch potato- stay as active as you can (that's probably not a problem with two small children around). Everyone reacts differently   to chemo- I hope you are one  of those who has minimal side effects.  I've been on   several different chemo regimens and am still  on maintenance chemo  (Erbitux and irinotecan every other week) without it having  an adverse effect on my quality of life. If you do have  any side effects make sure to let your oncologist know- thay can often give you pre-meds to alleviate  the problems. It might help to keep a journal   of how you're feeling once you begin chemo- it's easy to fotget to mention something you meant to tell the doctor, especially if you  get in a hurry or  have other things on your mind. Best of luck with your treatment. Check back in  and let us know how it's going for you.

    lizard44/Grace

     

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member

    Chemo

    The only thing I would advise is to get your oncologist to discuss the odds of recurrence with or without the chemo, as well as the side effects to expect.  The necessity of being there for your children would likely be a great motivator to optimize your odds for disease free survival.  Some people breeze through chemo, while others have a hard time getting of bed.  If you proceed with chemo, it would likely be a good idea to have a support system in place in case things are not easy.  Once you know the chemo regime you are considering, searching that term in these posts can provide valuable real life insight that may not be available from other sources.  Sorry you are facing these issues.

    Optimizing the odds

    As you prepare for your chemo decisions, I would be remiss in not mentioning that there are lots of what I call "free" strategies that optimize your odds for disease free survival.  At the top of the list is exercise.  Closely related is raising your vitamin D levels (sun exposure as well as supplements help with this, almost everyone with colon cancer has vitamin D deficiency.  If your physicians have not already tested your levels, you should be sure they do!).  Coffee, surprisingly, gives a big step up in your chances of disease free survival, as does consuming tree nuts (like walnuts).  Assuming you are in your first year after surgery, you might consider taking cimetadine (tagamet), available for a few bucks at Walmart.  There are a ton of supplements to consider, starting with curcumin (tumeric) and going down a list as long as your patience.  Of course, avoid sugary and processed foods as well as red meat, and consider a pesco-vegetarian diet.   My guess is that you want to do everything to be there for your children.  Some of the simple and natural strategies appear to give you as much advantage as chemotherapy in surviving.  Of course, some will reply to check everything with your doctor, and they are probably right.  But sometimes doctors do not seem to be as educated as to these issues as those of us who depend on the information for survival.  

    This post is a bit dated, but it may still provide useful information: https://csn.cancer.org/node/310395

  • SophDan2
    SophDan2 Member Posts: 150 Member
    edited July 2018 #14
    Hi Sarah

    I was diagnosed with Stage 3C colon cancer in April of 2017. I went through surgery, had a port placed and went through 6 months of Folfox 5FU chemo (every 2 weeks for 48 hours). If you have the same treatment the one drug to watch is the Oxaliplatin, as it is the one that has the more intense side effects such as extreme sensitivity to cold, neuropathy and nausea. I was given a steroid for the first 3 days after my hookup for treatment. Unlike others on this thread, I chose not to take the anti nausea drugs and went with marijuana edibles, which have no side effects, allowed me to eat, sleep and not feel nauseous. I only needed them 5 times out of my 12 treatments. I tried to work in the beginning, but was stressed about my health and work, so I went on long term disability until my treatments ended. You don't mention what you do for work, hopefully they offer disability. My 2 kids are older (18 and 19), but they each dealt with my situation in their own way and are fine.

    Te good news:

    You are young, you have every reason to think that you will beat this, and you will. Keep yourself well fed (very important), even though you won't feel like eating (everything will taste metallic), as it will allow your body to come roaring back as the chemo wears off (replenishing white & red blood cells, platelets etc....)

    I am so glad that you found your way to this forum; everyone responds and deals with their treatment in different ways, and you will too. Keep a positive attitude, because before you know it, this will all be in your rear view mirror.

    I have made friends on this forum!

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Treatments

    Sorry to hear of your diagnosis as you are so young.  Treatments vary from one to another and depending on the cocktail they want to give you and the length of time they give you.  There are some that can get treatment and go back to work the next day and miss very little from work but there are other's that have a harder time.  If you tend to get sick, make sure you ask for something to help as there are many medicines that can help you.  Make sure that you are very comfortable with your doctor too and if you don't feel comfortable with their explanation or you don't agree, get a second opinion.  Wishing you well and make sure you come back on here with further questions as there are many that will be taking the treatment you will be.

    Kim

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    Support

    Sorry to hear of your diagnosi. I was 39 when diagnosed in 2006 and have survived cancer three times now. Having a close knit group of people to rely on is key. I don't know your circumstance but my wife was truly my lifeline. She took care of me and made sure I didn't give up even when that's all I wanted to do. Chemo was terrible for me each time but everyone's experience is difference and I pray you will have an easy time with it. 

    I was very hard-headed (according to my wife) and continued working through all my chemo except for treatment day. I even wore my pump to work, during fire calls, and while mowing the lawn. All this helped me to feel as normal as possible during my treatments. 

    All of us are different but my faith really guided me through these past 12 years also. 

    We are all here to offer encouragement and advice whenever you need it. 

  • Mikenh
    Mikenh Member Posts: 777
    I finished up 6 months of

    I finished up 6 months of chemo though I was on XELOX (Pill form of 5FU and Oxaliplatin infusions). Chemo was tough but particularly so because I started during the winter and it was a very cold winter. The cold sensitivity is rough if you live in a cold part of the country but you would be starting in the summer which means that you could modify things gradually.

    I worked through chemo. I had the infusions on Wednesday and worked from home, sometimes sleeping for an hour or two in the afternoon. I usually worked during the infustion (just brought my laptop and the hospital had WiFi). The chemo drains your energy for several days and the oxaliplatin has all of these crazy side-effects that you have to tip-toe around. Some people work through it and some go on short-term disability or take sick/vacation days around the infusions. Your overall health and fitness seem to be a determinant on the level of normalcy you'll experience. You do have your young age as a positive factor.

    It helps to have help. That can take on many forms. Sometimes you have to comfort others (coworkers, relatives, friends) because others can get freaked out when you tell them you have cancer. Sometimes you choose not to tell some people. I've tried to act as normal as possible and haven't told everyone. You do work it out.

  • danker
    danker Member Posts: 1,276 Member
    age

    your young age is definately in your favor.  I was 77 when cancer discovered.  Currently 86, and NED for last 8 years.  If I could do it, you are a cinch!!! Best of luck with it all!!

  • Sarah22
    Sarah22 Member Posts: 13
    edited July 2018 #19
    lisarjxo said:

    Chemo

    Hi honey, I too have colon ca with one damn positive lymph node. I am getting my third folfox treatment tomorrow. I am a nurse and my kids are little older.I will be straight up honest. Everybody is different but I find chemo horrid.I have to try to go back to work bc my sick time is used up and bills continue.I find chemo makes me very tired yet I can’t sleep. I do suffer from nausea.here is the list of anti nausea meds you need zofran,compazine,decadron,reglan and maybe MarinoL. I take it all.Anything to get through it. Ohhh also don’t forget hurricane solution to swish your mouth.It is a shame we have to go through this.It will save us. Please text me anytime, be well

     

    Thanks Lisa!!! I am also a

    Thanks Lisa!!! I am also a nurse. Just wondering how to work everything out. thanks for the nausea meds. I’ve written them in my book to talk with the doc about. I hate nausea!!!

  • Sarah22
    Sarah22 Member Posts: 13
    edited July 2018 #20
    abrub said:

    Add Ginger and Atarax to the list of anti-nausea meds

    It has been shown that ginger capsules (1 g twice a day) enhances the efficacy of the other anti-nausea drugs.  For me, Atarax (Hydroxyzine HCl) was another important tool in my arsenal, as was ativan.

    Chemo is scary - I think moreso in anticipation than in reality (tho I don't know that I'd do it again.)  Good luck, and remember that you decide for yourself the value of the chemo.  Also let your dr and chemo nurses know about ALL side effects, no matter how trivial.  Your doses may be adjusted or they may have other suggestions.

    Yes!! The anticipation is

    Yes!! The anticipation is killing me. I want to just get to it so I can at least stop worrying about what it will be like. Will definitely get some ginger capsules. Thanks!!!

  • Sarah22
    Sarah22 Member Posts: 13
    Trubrit said:

    Chemo is not a walk in the park....

    and its a gift that keeps on giving. BUT, if it keeps on giving, it means your alive and moving forward, and thats a good thing. 

    I remember well my first chemo.  I went in to the Cancer center and was taken back to an exam room. Here, the chemo nurse (they are so lovely) accessed my port - Do you have a port? - I had been really scared about this part. Such a big needle, and it stays in for so long. Surely it would be a terrible expereince, but NO, it was fine. I had applied some lidocaine gel about 30 minutes prior, and then they sprayed it. I barely felt it go in. I was now hooked up to a tube. 

    After sitting for a while, I was called back to the infusion room, where more chemo nurses hooked me up to my chemo bags. All of this is painless. I did get a tingling in my throat, and the nurses came and slowed the chemo infusion down a notch. 

    After the four hour infusion, I had to travel to get hooked up to my 5FU. I know, wild. Its different now. But I did it and got hooked up to 5FU and came home attached to that for 48 hours. 

    The first infusion did make me tired. The mouth sores and sensitive skin started on the second infusion. Then it all cranked up, and I have a long list of things that happened to my body, but I won't bore you with them, because everyone reacts differently, and you may just breeze right on through and only suffer a few. Fatigue will definitley be one of them, I would guess. 

    I think your chemo nurses will tell you to be careful around your children the first few days after infusion, if you are on Oxaliplatin and 5FU. Be sure and ask them.  Things like keeping the toilet seat down after you go to the bathroom and flush.   

    Its all very scary that first visit, but you will soon become acustomed to all of it. 

    I wish you well. Come back as you move forward with your treatments, and we can share more of what you can expect. Not meaning its what will happen.

    So yes, no beating around the bush. It is a long road, but you will be surprised at how well you do. Go forward with a positive attitude, and that will really help. 

    I wish you all the best. 

    Tru

    Thanks you for sharing your

    Thanks you for sharing your experience. It’s very comforting. I will definitely keep everyone updated.