Scared of Chemo

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  • Sarah22
    Sarah22 Member Posts: 13
    SophDan2 said:

    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!

    Thanks so much!!! my husband

    Thanks so much!!! my husband is suggesting edibles for me because he knows how much I hate nausea. Would love to know more about them. I am currently working as a labor and delivery nurse but hoping they are accepting of my needs and will work with my schedule. Thank you so much for sharing your experience. 

  • Sarah22
    Sarah22 Member Posts: 13
    edited July 2018 #23

    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

    Thank you so much!! Was

    Thank you so much!! Was wondering about second opinions. Will keep this in mind. 

  • Sarah22
    Sarah22 Member Posts: 13
    edited July 2018 #24

    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. 

    Thank you so much!!! You

    Thank you so much!!! You sound very much like my husband. He would totally work as well. 

  • Sarah22
    Sarah22 Member Posts: 13
    Mikenh said:

    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.

    Thanks for sharing!! It’s

    Thanks for sharing!! It’s very comforting to read how people have made it through and how to cope. 

  • Sarah22
    Sarah22 Member Posts: 13
    danker said:

    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!!

    That’s awesome!!! Thank you

    That’s awesome!!! Thank you so much!!!

  • Nessmike
    Nessmike Member Posts: 1
    edited July 2018 #27
    Same Boat

    I’m in a pretty similar situation. Age 37. Stage 3. Kids age 5 and 3. 

    Had my first infusion of chemo yesterday, so clearly not a source for long-term effects, but aside from being tired from not sleeping too well last night, and some of the other nagging side effects popping up occasionally (jaw pain with the first bite of food, tingling sensation in finger tips with cold water, throat irritation with cold water), it seems to be ok after the first treatment. My wife and I even took the kids to the aquarium this morning, and I was able to keep up just fine. I, of course, know that things will probably feel differently as time goes on, but I really think the mental aspect has been the toughest part so far, and life with kids has preceded pretty much as normal in the first 36 hours.

    Best of luck!

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Nessmike said:

    Same Boat

    I’m in a pretty similar situation. Age 37. Stage 3. Kids age 5 and 3. 

    Had my first infusion of chemo yesterday, so clearly not a source for long-term effects, but aside from being tired from not sleeping too well last night, and some of the other nagging side effects popping up occasionally (jaw pain with the first bite of food, tingling sensation in finger tips with cold water, throat irritation with cold water), it seems to be ok after the first treatment. My wife and I even took the kids to the aquarium this morning, and I was able to keep up just fine. I, of course, know that things will probably feel differently as time goes on, but I really think the mental aspect has been the toughest part so far, and life with kids has preceded pretty much as normal in the first 36 hours.

    Best of luck!

     

    Welcome

    Welcome Nessmike.  The "first bite syndrome" is something many of us have and continue to have after treatment.  It's not fun and especially the tingling.  I'm sorry that you have to be here but we are here to help you as well.  If you could post a seperate post and let us know a little about you it would be great to have other members of the group you have joined.  Please ask away as we are always here to help all. 

    Kim

  • Mommy T
    Mommy T Member Posts: 8
    edited July 2018 #29
    I am 49 with one child left at home age 9

    I was so frightened to start chemo, as well.  I was diagnosed with stage IIIb colorectal cancer March 2018 after my surgery. My world was turned upside down. I had to sell our chickens, goats, and pigs.  No fresh milk, nor fresh eggs. Garden was a no no through chemo, so therefore no canning this year. I have one child left at home age 9 and 8 grown children. I can honestly tell you that chemo SUCKS!  I was supposed to do 3 months of the Oxaliplatin along with 6 months of F5U but I could stop both at 3 months, if I wanted.  I had a total of 3 chemo days every other week.  One week chemo - next week recover - then start all over again.  Oxaliplatin and F5U. Oxaliplatin was infused 5 hours on Monday.  No children are aloud in the infussion rooms.  So, I had to find someone to watch my child at that point.  It worked out good, due to excellent support group in my family.  F5U was given to me by our local pharmacy using my port and I had worn a balloon pump for 48 hours at home.  My disconnect day was my third day and it was the start of hell for at least 3-4 days after and gradually got better as the days go by.  It was really hard taking care of my child during that time. I had to have someone here watching her. Every person will go through chemo differently because our bodies are different.  I never vomited through the chemo - Nausea, yes.  Mental aspect has been the toughest part for me too.  Anxiety level went through the roof.  I have some memory loss "chemo brain" and the normal side-effects that come with these drugs. My balance is slightly off but I deal. I had problems with my port - it went sideways on me. I had problems almost every week.  Emergency room visit for fever. Visit to IR for possible port causing a clot (neck swelled). I had to stop chemo completely by my 6th cycle due to eye issues to my optical nerve. I fell in the 1% - so, I am dealing with that at this point.  I also have been diagnosed with thyroid cancer too but that will be a piece of cake. I have a possitive attitude towards life and I just keep going. I felt like my experience with chemo was not a normal chemo process. I was thankful I did not have to work. I could not have pulled it off. The fatigue from chemo kicked my butt. I tried so hard to do normal household chores during my bad week but I could not.  I had to wait for my good week to do chores. I learned to get everything done prior to my chemo start day.  It was a whirl wind but I did it! I am someone that does not like sit still, so this was different for me. I take one day at a time. Every morning I am thankful to have another day.  Life changed for me but not necessarily in a bad way. I wrote in a journal during chemo and it helped. I had several issues but dealt with everyone of them with a smile because I was here to experience it good or bad.  I could not worry about things that I could not control. I just dealt with it! I would read other peoples journey's through chemo and they made it through. So why not me! Found out that my journey was not so bad compared to others. I got through it because I had to - you just do it! I fought all the way because of my children and I made sure I smiled a lot because I was thankful. Don't get me wrong - I have shed a lot of tears too. I did not look to far ahead because I would worry.  Just look at the day you are in and finish that day.  The days will pass by and you will have finished your chemo. Your journey will be different but you keep up the fight. We are all in a special club and you are not alone. I found that my 9 year old dealt with this wonderfully and she learned alot. There was a lot of real life learning, cooking, and caretaking.  Although yours are younger, they will still be watching others help you. Don't be afraid to say "yes" to people bringing you food.  Easy to fix meals! Take the help, any help you can get.  Have a list of names with what they can help you with - along with there phone numbers. If grandparents are close - use them!  My mother helped alot - my relationship grew because of it.  It is hard but you will manage to get through it.  HANG IN THERE!

  • darcher
    darcher Member Posts: 304 Member
    Chemo, its not candy

       They put me on Xeloda.  I didn''t get anything else with it and I noticed how anything stressful would make me throw up.  I don't know if it' was the chemo making me puke my guts out or the knowledge of having cancer.  Since it's a pill and not via needle I figured ir can;t be that bad.  At first it wasn't but it gradually sneaks up on you.   I had it pre-op and for post op mop up.  Although my surgeon believed it was completely eradicated the oncologyst wasn't buying that.  So, 6 two weeks cycles on one week off.  By the forth I was so tired and irritable I was a mess.  You're mielage may vary but I've been off it for just over 2 months and I'm still feeling the affects.  Neropathy in my fingers and toes and of course bathroom trips more often than they should be. Other than that most is well on the home front. It's been about a year since my diagnosis.   Time flys.  

  • Mystimom
    Mystimom Member Posts: 10
    edited July 2018 #31
    how's it going?

    I just read your post tonoght and was wondering how you are doing with chemo.

    I was recently diagnosed with Stage IV colon cancer and have begun chemotherapy. It is very distressing to fear the unknown. That's why children fare so much better psychologically with treatment- They don't think like we do as adults....anticipating the worst.

    Therefore...I recommend just focusing the strong aspects of your body and remembering that chemo won't kill you- it will only temporarily test your resources.

    I am on the tough regime of 5-Fu, leuvocorin. oxaliplatin, irinotecan and Avastin. (this is together called Folfoxiri).

    I have diarrhea and sleepiness for a few days...but it passes. Keep in touch!

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited July 2018 #32
    Mystimom said:

    how's it going?

    I just read your post tonoght and was wondering how you are doing with chemo.

    I was recently diagnosed with Stage IV colon cancer and have begun chemotherapy. It is very distressing to fear the unknown. That's why children fare so much better psychologically with treatment- They don't think like we do as adults....anticipating the worst.

    Therefore...I recommend just focusing the strong aspects of your body and remembering that chemo won't kill you- it will only temporarily test your resources.

    I am on the tough regime of 5-Fu, leuvocorin. oxaliplatin, irinotecan and Avastin. (this is together called Folfoxiri).

    I have diarrhea and sleepiness for a few days...but it passes. Keep in touch!

    Sorry

    I'm so sorry that you have to find yourself here but glad you found us.  My treatment was almost the same except without the Avastin.  It's rough on you that's for sure.  The future is always uncertain when you don't know what to expect.  Treatment alone is scary.  Joining this board was a big help to me and I'm hoping that you will continue to ask away if you have anymore concerns.  Wishing you the best going forward.

    Kim

  • abita
    abita Member Posts: 1,152 Member
    Mystimom said:

    how's it going?

    I just read your post tonoght and was wondering how you are doing with chemo.

    I was recently diagnosed with Stage IV colon cancer and have begun chemotherapy. It is very distressing to fear the unknown. That's why children fare so much better psychologically with treatment- They don't think like we do as adults....anticipating the worst.

    Therefore...I recommend just focusing the strong aspects of your body and remembering that chemo won't kill you- it will only temporarily test your resources.

    I am on the tough regime of 5-Fu, leuvocorin. oxaliplatin, irinotecan and Avastin. (this is together called Folfoxiri).

    I have diarrhea and sleepiness for a few days...but it passes. Keep in touch!

    I was also diagnosed at Stage

    I was also diagnosed at Stage 4. Why all the drugs? I was on folfox, then folfiri when I became allergic to oxaliplatin. But I didn't gt them all each round. My spread was to the liver, and had surgery to remove those. I am curious as to whether I have more chance of recurrence because didn't get all each time. I never had Avistan.

  • Olle
    Olle Member Posts: 12
    edited July 2018 #34
    I wonder if chemo really is so good?

    How to Win the War on Cancer

    Very intersting but scary "facts" :  https://www.youtube.com/watch?v=l_C26gt1LbA

  • annie4145
    annie4145 Member Posts: 218 Member
    edited July 2018 #35
     I haven't started chemo yet,

     I haven't started chemo yet, and actually have a different type of cancer (AC), but I just wanted to tell you, that I suggested to the site that they set up a discussion group for all of those that have children, so we can talk about some of those issues.  Haven't heard back yet.  Mine are alot older (10, 12), which makes my life a lot easier, as far as day to day care, no need for a babysitter, etc.  There are some good books OK there for young kids that might help explain cancer to the 5 year old.  Hang in there!  My thoughts are with you.