CSN Login
Members Online: 10

You are here

Scared of Chemo

Sarah22's picture
Sarah22
Posts: 13
Joined: Jun 2018

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!!!!

abita's picture
abita
Posts: 681
Joined: Dec 2017

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's picture
Sarah22
Posts: 13
Joined: Jun 2018

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

SandiaBuddy's picture
SandiaBuddy
Posts: 957
Joined: Apr 2017

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's picture
Sarah22
Posts: 13
Joined: Jun 2018

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. 

SandiaBuddy's picture
SandiaBuddy
Posts: 957
Joined: Apr 2017

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

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

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's picture
Sarah22
Posts: 13
Joined: Jun 2018

Thank you Traci for sharing your experience!!

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

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

 

Sarah22's picture
Sarah22
Posts: 13
Joined: Jun 2018

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
Posts: 3
Joined: Oct 2011

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's picture
abrub
Posts: 2103
Joined: Mar 2010

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.

Sarah22's picture
Sarah22
Posts: 13
Joined: Jun 2018

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's picture
Sarah22
Posts: 13
Joined: Jun 2018

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!!!

Trubrit's picture
Trubrit
Posts: 4960
Joined: Jan 2013

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

Sarah22's picture
Sarah22
Posts: 13
Joined: Jun 2018

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

SophDan2's picture
SophDan2
Posts: 135
Joined: Jul 2017

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!

Sarah22's picture
Sarah22
Posts: 13
Joined: Jun 2018

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. 

Annabelle41415's picture
Annabelle41415
Posts: 6305
Joined: Feb 2009

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

Sarah22's picture
Sarah22
Posts: 13
Joined: Jun 2018

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

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

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. 

Sarah22's picture
Sarah22
Posts: 13
Joined: Jun 2018

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

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

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.

Sarah22's picture
Sarah22
Posts: 13
Joined: Jun 2018

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

danker
Posts: 1200
Joined: Apr 2012

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's picture
Sarah22
Posts: 13
Joined: Jun 2018

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

Nessmike
Posts: 1
Joined: Jul 2018

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's picture
Annabelle41415
Posts: 6305
Joined: Feb 2009

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
Posts: 8
Joined: Jul 2018

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's picture
darcher
Posts: 257
Joined: Jun 2017

   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
Posts: 10
Joined: Apr 2018

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's picture
Annabelle41415
Posts: 6305
Joined: Feb 2009

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's picture
abita
Posts: 681
Joined: Dec 2017

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
Posts: 12
Joined: Apr 2018

How to Win the War on Cancer

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

annie4145
Posts: 162
Joined: Jul 2018

 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.

Subscribe to Comments for "Scared of Chemo"