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Side affect question

Kime2014
Posts: 7
Joined: May 2014

Hi Everyone:

Sure wish I knew about this site when I was first diagnosed and through my treatment.  I was diagnosed with colon cancer 11/2012, surgery the next month, then chemo every other week for 6 mth, ended July 2013.  Subsequent check ups have all been good.  My question is about a few side effects.  First is how long has your chemo brain lasted?  I'm pretty much back to normal, except with short term memory.  I've read and have been told it usually lasts about 18-24 months.  Second, do you ever really get your old brain back or just a new normal?  Third is the return of physical energy.  I'm 54 and used to be able to go at a fast pace all day.  Now I can do slow-medium all day and pay for it being exhausted at night.  I'm trying to force myself to do things to build up my stamina, but it just doesn't seem to be moving forward.  Last question is has anyone had trouble doing anything outside in the shade or sun? Recently I had my hat and sunblock on to help my daughter work in our garden, which has a lot of shade.  She did all the heavy lifting.  All I did was use a shovel to pull the fertilizer out of the bag; barely physical at all.  Anyway, aftter about 3 min, I got very dizzy, saw stars, weak in the knees and a bit nauceous.  My daughter helped me sit down and I couldn't even think about getting up for a few min.  When I did, hubby had to assist me into the house as I felt like I could pass out.  Felt fine after 5-10 min inside, but was exhausted the rest of the day.  I've tried to find this side affect on the internet, but no luck.  I appreciate any info ya'll can provide.

 

Thanks

 

Kim

Trubrit's picture
Trubrit
Posts: 4851
Joined: Jan 2013

Hello Kim

I too was diagnosed Nov '12, surgery Dec '12, chemo until June and then Chemo and radiation until July. And I am 55, so just a tad older.  So our timeline is quite alike.

I still suffer from the chemo brain. Definitely not as bad as when I was getting the chemo, but I certainly have problems finding words, and sometimes putting them together. I often come up with something totally unrelated that the word I need. 

I also still have neuropathy, worst in my feet, but some tingling in my fingertips. 

Luckily, my energy levels are back to normal and I'm pretty much doing what I did before treatment. 

They did find a met in my liver, so I've been bumped up to a stage IV. In spite of this, I feel pretty darn normal.

Chemo is nasty stuff, and lingers in our bodies for a good amount of time. Your symptoms sound normal to me. 

Thinking about your experience in the garden; do you think you might have been dehydrated? The symptoms sound familiar to that. I've found that I have to drink tons of water now. 

Also, I've found that I burn in a moment if I go out in the sun. I think thats radiation damage. Did you get radiation? 

I'm glad you found us here. The forum really has been a HUGE blessing in my life. So, better late than never. 

Be sure to join in. You have allot to offer new folks just stating on the journey, and of course, you (as do I) have allot to learn from others here who have been 'at it' allot longer than us. 

SUE

Kime2014
Posts: 7
Joined: May 2014

Hi Sue:

I suppose I may have been dehydrated.  Anything's possible.  I do tend to trink ice all day long though.  Picked that habit up from my hubby.

I was fortunate that I did not suffer from long term neuropathy.  The worst I had was not being able to touch anything cold and the tip of my tongue being numb during chemo.   Once that ended, within about a month, those side effects went away.

I'm a wanna be ginger (strawberry blonde as a child, then to brunette; very light skinned and the few times in my life I tanned, I was the only one who knew it) so I've never been a fan of being out in direct sunlight.  Sunscreen, shades and a hat under some kind of shade...

A very nice side effect I received it when my hair grew back, it came in a very pretty white/light silver.  In some lights it looks like there's blonde thrown in and in others, sometimes it looks like I have a lavenderish tint.

I really appreciate the input, thank you.

 

Kim

Trubrit's picture
Trubrit
Posts: 4851
Joined: Jan 2013

Oh Kim, my hair also came back in white. It was lovely. Now its gone back to the darker grey. Still looks nice, but I did like the shiny white hair. 

I had thick waves, too, but they've gone also. 

danker's picture
danker
Posts: 1187
Joined: Apr 2012

Just wait a while!!!I STARTED GETT ING GREY WHEN I WAS 35. Since then it has become snoW white!!  At age 82, I don;t care what color it is as long as I still have lots up ther.  LOL

Trubrit's picture
Trubrit
Posts: 4851
Joined: Jan 2013

But I can promise you, I will be extatic if I live to 82 even if all of my hair falls out. 

You are such an example for us, Danker. You must post a new thread and let us know how your wife is doing. (now my chemo brain is asking me if I got the right person)

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

There are know actual timeline for these side effects to resolve everybody is so different. That one episode in the garden could have been a isolated incident.

As far as energy learned to pace myself during the day. I don't plan too much at once. I am a big friend of coffee now. I found that if I have coffee after my meals, I can maintain a good energy level during the day. But I have to watch my blood sugar, because caffein can drop it then I have that aweful anxiety and feel like I'm gonna faint. 

The rest is just a new normal I guess. Chemo brain I believe is a combination of real demage to the brain and also let's not forget that we constantly think about our illness or health which takes up a lot of brain capacity and can be very distracting. 

Laz

Kime2014
Posts: 7
Joined: May 2014

Hi Laz:

It is a relief to know someone who has not recovered all of their energy yet too.  I'm trying, but it going so stinkin slow.  I'm much better I was, but still far from where I was before chemo.

Hubby kids me that I can only claim chemo brain for 18 months, then it's just 'cause I'm getting old.  I think I'd rather claim chemo brain 'cause it makes more sense to me.

Thank you for your input.  I am so appreciative.

 

Kim

marbleotis's picture
marbleotis
Posts: 696
Joined: Mar 2012

Well I was dx'ed Jan of 2012 with stage 3cc/signet cell at 49 years old.  Had the surgery and 6 months Oxiplaton and 5fu

I am NED now almost 2.5 years.

Side effects:

  1. Neuropathy - hands feet, used to be hands, feet, face, teeth and tongue - so Yeah!
  2. Chemo brain, ah yes it does exist you are not going crazy, it gets better with time
  3. Enery - definetly affected, however I go to the gym 3x week and that helps, after work some days I come home and take a 30 min cat nap to re-energize
  4. Eating - I eat exclusively organic and feel much better - not that I ate badly before cancer - so go figure
  5. Emotional - very thankful I am still here but also still have the scan-xiety moments.  I allow myself time to process what I have been through but twice as much time to appreciate my life and be thankful

This is such a hard thing to get through and this forum has been a golden place for me.  Many people have helped me with their info and kind, thoughtful and sometime stern posts(because I needed it)

Hope you continue to get stronger - keep posting

Kime2014
Posts: 7
Joined: May 2014

Hi Marbleotis:

What does NED mean?  Sounds like 2.5 yrs cancer free maybe.

I was also on Oxiplaton and 5FU.  However, my side effects were so bad, the doc removed the Oxiplaton.  I was considered cancer free after surgery because it had not broken through the colon wall, but did travel through the lymph canal to 1 node.  I had chemo as a precaution.  Had it not been precautionary, my doc said she wouldn't have removed the drug.  I constantly felt like I was crawling out of my skin until it was removed.  After that it was still a rotten experience, but not nearly as much.

Once I let family know of my cancer, I found out colon, intentestinal and breast cancer run in my family.  After I discovered that, I too went organic.  Every little bit helps.  I also started making my own deoderant, shampoo, body soap/lotion, laundry detergent and dryer sheets, dishwasher soap.  I plan to make other items as well; just haven't gotten to it yet.  I read every label now and have a list of chemicals that after researching I determined are OK for me or not.  Don't use anything with bad chemicals in it.

Thank you for sharing with me.

Trubrit's picture
Trubrit
Posts: 4851
Joined: Jan 2013

No Evidence of Disease. 

I was there, ableit briefly. 

darlad
Posts: 18
Joined: Nov 2010

I was diagnosed in 2010 and completed chemo 5/2011. I worked through chemo and at the time, the most bothersome side effect was being super tired and pain with touching cold. After work I would come home and sleep.

I thought after chemo I would feel so much better but I started noticing difficulties finding the right word and short term memory problems. I made a lot of mistakes at work. I had a brain MRI and they found deep grey matter in the frontal lobe. I also had a psychological testing and the indicated that my thought process was fine but that I made a lot of mistakes. 

I couldn’t seem to get all my work completed in the office and took a lot of work home.  I didn’t want anyone at work to know how slow and inaccurate I had become.  I had to check and double check everything.  I felt stressed and maybe a little crazy and finally decided to change my career to a less stressful position last July, 2013 (after 22 years of employment).

Then about April of 2014 I started feeling much more like my old self.  I still make more mistakes than I use to; but felt confident in my decisions.  My thought process seems clearer.  Surprisingly, my previous employer asked me to come back to my old position and I just went back in May 2014 and so far so good.

For me, I now finally feel I am to my new normal.  I feel clear and able to focus.  The effect of chemo, in my opinion, lasted 2 ½ years. I saw so many others who lives were much more challenged and I didn’t want to whine.  I felt glad to see your message and hope that my story gives you hope for getting back to your old self or at least to a better new normal.

Best of Luck to you!

Darla

 

Trubrit's picture
Trubrit
Posts: 4851
Joined: Jan 2013

What a wonderful post. We all know there are going to be side effects, but to hear your story is a real encouragment that think can get better in time. Thank you!

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I think you said drinking ice. Is that biting ice?    Biting ice all day is a sign of low iron. Have you had that checked?  

 

My hips and legs hurt for a good year after chemo. Slowly started to get better. The sun never bothered me.   I'm on chemo again so chemo brain is back. 

 

Hope that things get better for you. 

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