Side effects from chemo? And any general tips? 30yr, Male, U.S. Navy

G'day Fillium

   Sorry you had to be here. Unfortunately colon cancer is no longer the realm of the over 50 old farts. You are probably much younger and I was considered young at 48 when diagnoised with an aggressive stage 3c tumor that had invaded six nodes. Apart from the time I spent in hospital and recuperation  , I did not stop working. I had 48 sessions of chemo. Every week for 48 weeks. It was not like you will be having in some ways it was better and in others very much worse. I have been cancer free since my operation in January 1998. It will be 17 years next January. I have worked thru to the present day. It is almost impossible to anticipate how chemo will effect you. I felt quite ill whilst on it but I did not suffer the neuropathy that many now suffer. That came much later with me. Once you are diagnosed life changes. If you want to survive you have to become your own advocate. You have to be tough and  i don't mean Arnie tough. You need to follow the rules , have your colonoscopies and scans at regular intervals as well as regular blood work. It is very easy if you are doing well , to slacken off. You cannot afford to. You have fulfilled the criteria to develop cancer once unless you remain vigilant it can happen again.  We are all different and our biology and genes play a large part in how we get thru cancer. I have survived seventeen years but survival has not been particularly kind to me, My archilles heel is my immune system and possibly my endocrine system . I suffer several severe auto immune problems some of which require transplant grade immuno- suppressants. I get by , at times I do it tough but I get by. I wish you well for your treatment and your ongoing survival . Good luck, Ron.

Hi Phil

Welcome to a place where you can ask any question about the journey you now share with us.  Lots of experience here so someone will likely be able to help.

Because you are so very young to have this happen, do you know if there is a history of it in your family?  Do you have siblings?  If so they should probably get tested way earlier than the "usual" 50 yrs old.

Where are you receiving your treatment?  Some of the usual suggestions might not apply if it is service related.

As for how you do with chemo, you will just have to take it a treatment at a time.  The effects are cumulative, so you will probably notice that the side effects change over time.  As for working, it all depends on the type of job you have.  If it is physically demanding, you might find it difficult to do.  Since each human is unique, how we respond to treatments can also be different.

One of the best suggestions for this stage of the process is to get a notebook.  Write down questions that you have so that you can remember to ask them of your medical team.  Write down what treatment you are getting, when, and how you feel after.  It also helps to keep track on your lab results. 

One of the blood tests is for CEA levels.  While it is a cancer marker, it is not always a good indicator for all.  Some folks never have it above normal ranges, while for others it can go up and down depending of the effectiveness of the treatment.  It is also one of those things which can be influenced by other things, such as infections, so not every rise means ineffectiveness.  If a good indicator, trending is more important than a single rise or fall since the last test.

As for the "lingo", we have discussed that before here that there should be a reference list somewhere.  There may well be one.  Best bet until someone identifies it for you, just ask here.  The one we all pray to hear for everyone is NED...No evidence of disease. 

One of the best tips, is to report all changes in how you feel to your medical team.  You do not have to "tough out" the side effects without some help, either suggestions like ginger ale and ginger snaps for nauesa, or meds which can help with others.

Even though we are statistically much older than you, I hope you will hang with us and let us help you along this journey.  We are very good at listening too.  This is an emotional roller coaster as well as a physical one.

Wishing you best outcome with your treatments.

Marie who loves kitties

 

Typical Treatment

Phil,

Your oncologist may individualize your treatment, but so far what you've said matches up almost precisely with my diagnosis (same location, tumor size, number of nodes involved). Here's what my treatment (FOLFOX with 5FU) looked like:

Week 1, Tuesday: Show up at oncologist's office by 11 am. First stop is to get a blood draw to ensure that my blood chemistry shows I'm able to withstand the chemo. Some people see a drop in white blood cell count or platelets count, and these can force a delay of treatment. Mine was always pretty stable. Second stop: either a short physical from the oncologist (every other visit) or straight to the infusion chair. Get hooked up to the IV pump, get comfortable with my iPad and watch a streaming movie or read a book. Each infusion took around 2 to 3 hours. At the end of the infusion, the nurse replaces the IV pump with a portable IV pump that I will carry with me for the next 46 hours.

Week 1, Thursday: Show up at oncologist's office by 9 am. See the nurse to get the portable pump disconnected. This takes less than 5 minutes.

Week 2, Tuesday: Show up at the oncologist's office for a blood draw to check blood chemistry. Wait 10 minutes for the quick results (virtually all of the Complete Blood Count was available in 10 minutes), get them from the nurse with any explanations of changes and then go home. 

Week 3: repeat the above for the next 11 cycles of two weeks each.

 

As to side effects, I found that mine varied a little bit from some other patients' but not by a lot. Yes, they're cumulative for the most part (especially the fatigue, the sensitivity to cold, and neuropathy) but for me not all the symptoms showed up in each treatment cycle. Like many, I had a weird sensation for the first four or five treatments where my jaw would hurt for the first bite or two of every meal. After those first bites it disappeared. Also, there's a strange sensation where it feels like you're swallowing glass. You're not, of course, but your nerves are playing with your head and it's really hard to make yourself swallow. I fixed that by pouring a glass of scotch. It went down just fine, right through the glass and I stopped paying attention to the glass after that. The whole symptom only lasted for the first few treatments, as I said.

The most potentially long-lasting side-effect of the FOLFOX treatment is peripheral neuropathy. What happens is that the platinum in the oxaliplatium (the OX part of FOLFOX) tends to settle in certain axons of your legs and hands, causing a combination of numbness and pain that's hard to describe. Generally, if you find yourself being sensitive to cold (pick up a cold beer right after a treatment and you may drop it out of shock that it hurts your hand to hold the can) then you're a likely candidate to develop neuropathy. If this happens, ask your oncologist about trying to mitigate the oinset of neuropathy. There are a few possibilities that work somewhat well during treatment, but once the treatment is over and the neuropathy has set in, it's a really persistent effect.

This is already a lot to digest and chances are you're reeling a bit from the diagnosis. Learn as much as you can about your disease and about the treatment. An informed patient is best able to help himsel get better.

Hi Phil, take care of your

Hi Phil, take care of your hands, take care of your feet, put the recommended creams on before you start treatment.  Get a port!  Get an anti nausea. I did 3 treatments before I had a port. The treatment is a lot worse than the port.  I went once a week for a few hours.  Some people go twice. Depends what your doctor thinks is necessary.  Mine had me on pills (xeloda) as well, one week on and one week off. 

 

My list of side effects that I recall off the top of my head:

Hurt to touch cold (I wore gloves everywhere including the supermarket, never wear shorts to the supermarket either, that is PAINFUL)

Hurt to be cold

Hurt to drink cold. Felt like my neck was cramping.

Hurt to chew for the first 3 minutes of every meal

Very dry feet, hands and butt (I started from day one, if you wait the burning on your butt can get incredible.  It still gets incredible but at least you have a head start).

I also slept with the cream on my feet with socks and plastic bags.

Pain in the heels.

Pain every day when standing up the first 15 minutes (I still get that).

 

I continued working for a long time, through the whole first round of chemo and some of the second.  I only stopped working when I started radiation because the combo and having to run to the bathroom (which by then was painful)  took me down.

Most of all remember, this is going to end!!!!  It's hard when you're in it but it will be over.  On hard days just say to yourself, next year at this time I'll be on a beach.

Hi Phil

1- Sorry to hear about your DX (diagnosis)
2- Thank you for your service
As others pointed out the side effects can vary but I can basically only echo what others have said. One thing that differed was that I did not return to my facility SK (Sloan Kettering) to get my pump removed. Instead, they hired Nurse Ratched to come to my house and torture me before she removed the pump. SK was too far to go just to have that simple procedure done. I'm pretty sure she still makes house calls.

As far as the nausea went, I found Emend (which was commonly used to help curb nausea) to be ineffective and expensive. I went with Mother Nature's remedy...pot* 

While I was on FOLFOX I had treatments every two weeks worked the entire time. I also kayaked for 81 consecutive days leading up to my initial surgery.

I found this Common list of Terms and Abbreviations that someone posted on this site in 2009. You should find it useful.
Best of luck moving forward.
-Another Phil

* DISCLAIMER: While I do not promote or condone the use of illegal drugs, there are many studies that show it is effective and it's use is legal in many states for medicinal purposes

Fillium said:

I hope I do this correctly

Hi everyone, I hope this posts so everyone can see it otherwise I will probably just send multiple replies. Thank you all for all the information, well wishes, and additional messages. I go in tomorrow for my treatment plan layout with my oncologists. I am being treated at Walter Reed in Bethesda so if anyone is treated there maybe I will see you around. It really means a lot that all of you took the time to message me and answer my questions even though there are multiple posts about chemo already I just needed to put it out there. I have a positive outlook but now I am only wondering about how dependent I will be on other people during my chemo. I am new to Maryland and I'm a private person so I am hoping I can handle the chemo on my own as much as possible just because I feel bad having my parents stopping their lives to provide car rides and help me out. Anyways again you are all awesome and if I can help any of you in any way please don't hesitate to message me :-) you are all in my thoughts and I hope to talk to you all soon :-) Have a Super Navy Day!

 

Phil

You got it right

I was glad to see you post again. 

I saw you mention in your other post that you wil be treated at Walter Reed in Bethesda, MD.  I took a peek at their web site and it seems like they have a comprehensive cancer center.  I don't know how it works in service related treatment, but we always say you are your own best advocate.  You are the admiral of your ship (your body), so make sure that it is treated as you feel necessary.

You say you hesitate to have your parents help you out.  I can understand, but also look at it from their perspective...I am sure they want to help you.

Take it as it comes, but don't totally block them from offering assistance.  Even things like doing the laundry or grocery shopping or fixing a favorite meal might give you and them a boost.  I have been on both sides of this cancer story...I had my own diagnosis about 5 1/2 years ago.  About 1 1/2 years later my sister got a different cancer diagnosis and I became her medical advocate and part time care giver.  Having those willing to help is something you could come to appreciate and even count on.

By the way, it doesn't matter that questions you have may have been asked before.  Over time the answers can change or be expanded on.  Ask away.

I think I can speak for all here, patients and care givers, that no one can truely understand this journey like those who are or have walked it.  When each of us came here, we were greeted and made to feel welcome and "found".  It is our pleasure to be able to pass that on to all the new folks and give them a hand.

Best wishes for your treatment plans and positive outcome.

Marie who loves kitties

Welcome!

I'm sorry you're here but you picked a great place to get information and to make new friends. I won't give any advice because you've gotten so much good advice here from many different people. I wish you an easy road and I hope you become NED very soon, and stay that way!!!

 

Lin

John212 said:

Typical Treatment

Phil,

Your oncologist may individualize your treatment, but so far what you've said matches up almost precisely with my diagnosis (same location, tumor size, number of nodes involved). Here's what my treatment (FOLFOX with 5FU) looked like:

Week 1, Tuesday: Show up at oncologist's office by 11 am. First stop is to get a blood draw to ensure that my blood chemistry shows I'm able to withstand the chemo. Some people see a drop in white blood cell count or platelets count, and these can force a delay of treatment. Mine was always pretty stable. Second stop: either a short physical from the oncologist (every other visit) or straight to the infusion chair. Get hooked up to the IV pump, get comfortable with my iPad and watch a streaming movie or read a book. Each infusion took around 2 to 3 hours. At the end of the infusion, the nurse replaces the IV pump with a portable IV pump that I will carry with me for the next 46 hours.

Week 1, Thursday: Show up at oncologist's office by 9 am. See the nurse to get the portable pump disconnected. This takes less than 5 minutes.

Week 2, Tuesday: Show up at the oncologist's office for a blood draw to check blood chemistry. Wait 10 minutes for the quick results (virtually all of the Complete Blood Count was available in 10 minutes), get them from the nurse with any explanations of changes and then go home. 

Week 3: repeat the above for the next 11 cycles of two weeks each.

 

As to side effects, I found that mine varied a little bit from some other patients' but not by a lot. Yes, they're cumulative for the most part (especially the fatigue, the sensitivity to cold, and neuropathy) but for me not all the symptoms showed up in each treatment cycle. Like many, I had a weird sensation for the first four or five treatments where my jaw would hurt for the first bite or two of every meal. After those first bites it disappeared. Also, there's a strange sensation where it feels like you're swallowing glass. You're not, of course, but your nerves are playing with your head and it's really hard to make yourself swallow. I fixed that by pouring a glass of scotch. It went down just fine, right through the glass and I stopped paying attention to the glass after that. The whole symptom only lasted for the first few treatments, as I said.

The most potentially long-lasting side-effect of the FOLFOX treatment is peripheral neuropathy. What happens is that the platinum in the oxaliplatium (the OX part of FOLFOX) tends to settle in certain axons of your legs and hands, causing a combination of numbness and pain that's hard to describe. Generally, if you find yourself being sensitive to cold (pick up a cold beer right after a treatment and you may drop it out of shock that it hurts your hand to hold the can) then you're a likely candidate to develop neuropathy. If this happens, ask your oncologist about trying to mitigate the oinset of neuropathy. There are a few possibilities that work somewhat well during treatment, but once the treatment is over and the neuropathy has set in, it's a really persistent effect.

This is already a lot to digest and chances are you're reeling a bit from the diagnosis. Learn as much as you can about your disease and about the treatment. An informed patient is best able to help himsel get better.

did you continue the scotch

did you continue the scotch therapy?