I'm back everyone

Lily Flower
Lily Flower Member Posts: 260 Member
in Colorectal Cancer #1

I'm still alive! Since my last visit here back in July, I had my partial colectomy surgery in August. Staged at 3b. Syncopsis: A tumor was found in my sigmoid colon during colonoscopy in July. 

Currently I'm half way into my adjuvant chemo. Just had my 4th treatment on this past Friday out of 8 that my oncologist prescribed. I'm on the CAPOX combo (Oxaliplatin drip every 3 weeks; Capecitabine for 2 weeks; then 1 weeK recovery). The first two treatments knocked me out. Fatigue is no joke. I felt like a blowup doll that got deflated. Lol! My 3rd and 4th treatments weren't  as severe since they reduced my Oxaliplatin by 10%. I do feel the tingling in my fingers and wear gloves to take stuff out of fridge especially ring the first week and a half after the drip. No numbness yet..hope it stays that way. Although the first couple of days after the drip, I do have some vertigo issue. Best week is the recovery week when I can actually feel normal.  My oncologist said if side effects get worse, he would stop my treatment at 6. I'm thinking of stopping it at 6 as I do not want permanent neuropathy. 

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Comments

  • Mikenh
    Mikenh Member Posts: 777
    #2
    Welcome back! I love your

    Welcome back! I love your attitude.

  • BRHMichigan
    BRHMichigan Member Posts: 368
    edited November 2017 #3
    Glad you're doing well!

    My Onc also just suggested Capox for me; however he said few people could handle 2 weeks of Capecitabine so he recommended 7 days on 7 days off.  I wonder if it would improve your fatigue?

    Just FYI of course.  Best wishes to you.  I haven't begun yet so can't offer up personal experience yet.

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #4
    Mikenh said:

    Welcome back! I love your

    Welcome back! I love your attitude.

    Thank you Mike. I believe

    Thank you Mike. I believe that attitude plays a very important role in combating this awful disease. 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #5
    BRHMichigan said:

    Glad you're doing well!

    My Onc also just suggested Capox for me; however he said few people could handle 2 weeks of Capecitabine so he recommended 7 days on 7 days off.  I wonder if it would improve your fatigue?

    Just FYI of course.  Best wishes to you.  I haven't begun yet so can't offer up personal experience yet.

    Thank you Beth. I was told

    Thank you Beth. I was told that everyone would receive the side effects differently. I can even see myself having different effects from each treatment. Good luck to your upcoming treatments and hope it'll be a smooth one to handle. 

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    #6
    Glad your back and running

    Glad your back and running the program, I was 3b and put on straight Folfox for 12 rounds. The neuropathy was annoying but it faded, so I was on the lucky side of that. However I still had 2 reoccurances in the liver, they said the "seeds" were in  there before chemo. The doctors seem alot more careful with chemo now then ten years back, and have more drugs and combinations to work with, as well as the genetic testing to guide them, so I hope they can get you treated without the damage some here have had to endure. Keep checking in, sharing success and setback, helps everybody feel less lost and alone...............................................Dave

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #7
    beaumontdave said:

    Glad your back and running

    Glad your back and running the program, I was 3b and put on straight Folfox for 12 rounds. The neuropathy was annoying but it faded, so I was on the lucky side of that. However I still had 2 reoccurances in the liver, they said the "seeds" were in  there before chemo. The doctors seem alot more careful with chemo now then ten years back, and have more drugs and combinations to work with, as well as the genetic testing to guide them, so I hope they can get you treated without the damage some here have had to endure. Keep checking in, sharing success and setback, helps everybody feel less lost and alone...............................................Dave

    Thanks Dave! Neurapathy is

    Thanks Dave! Neurapathy is definitely my main concern. So far I only feel the tingling at the arm where the needle goes and that usually lasts about 3-4'days. Sensitivty to cold lasts about a week and half after the infusion. No numbness at fingertips and toes yet and I hope it stays that way. My oncologist did say if my fatigue and neuropathy get worse, he will eliminate my last 2 treatments. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #8
    Glad your back

    So glad that treatment seems to be going well for you.  It's a hard decision to make when you are on oxy and wanting the full effect of the drug yet hesitant because of the side effects.  You might want to make a mental note about how you are feeling with the oxy from one treatment to the other and your fingers and feet.  If it gets too bad let your doctor know.  They can reduce it.  Good luck and thanks for posting your update.

    Kim

  • SophDan2
    SophDan2 Member Posts: 150 Member
    edited November 2017 #9
    My Onc was big on getting through all 12 treatments

    My Onc was big on getting through all 12 treatrments. The Oxy was reduced by 20% for #10 & #11, and eliminated for #12. It has been 6 days since my last and final treatment; left with slight neuropathy in my finegrtips. I hope that is lessens and / or goes away eventually; if not, it is at a tolerable level.

    I found that from treatment #7 and on things became more intense.

    You'll know when enough (Oxy) is enough.

    Barry

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #10
    Annabelle41415 said:

    Glad your back

    So glad that treatment seems to be going well for you.  It's a hard decision to make when you are on oxy and wanting the full effect of the drug yet hesitant because of the side effects.  You might want to make a mental note about how you are feeling with the oxy from one treatment to the other and your fingers and feet.  If it gets too bad let your doctor know.  They can reduce it.  Good luck and thanks for posting your update.

    Kim

    Thanks Kim! Yes, I annotate

    Thanks Kim! Yes, I annotate everything down to discuss it with my oncologist. 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #11
    SophDan2 said:

    My Onc was big on getting through all 12 treatments

    My Onc was big on getting through all 12 treatrments. The Oxy was reduced by 20% for #10 & #11, and eliminated for #12. It has been 6 days since my last and final treatment; left with slight neuropathy in my finegrtips. I hope that is lessens and / or goes away eventually; if not, it is at a tolerable level.

    I found that from treatment #7 and on things became more intense.

    You'll know when enough (Oxy) is enough.

    Barry

    Thanks Barry! Since my

    Thanks Barry! Since my treatment is every 3 weeks, I'm getting 8 treatmento for 6 months. So I'm half way done currently. Thanks for the warning...I'll be prepared for my 7th. I thought about stopping it at my #6 but as long as I don't feel numbness, I will complete all my 8 treatments which will be at the end of January. 

  • SophDan2
    SophDan2 Member Posts: 150 Member
    #12
    Lily Flower said:

    Thanks Barry! Since my

    Thanks Barry! Since my treatment is every 3 weeks, I'm getting 8 treatmento for 6 months. So I'm half way done currently. Thanks for the warning...I'll be prepared for my 7th. I thought about stopping it at my #6 but as long as I don't feel numbness, I will complete all my 8 treatments which will be at the end of January. 

    The way I looked at it.

    I experienced numbness after each treatmwent, which last longer the deeper I got into the treatments. The only time that the numbness lasted from one treatment to the next, was for #12, which is why I discontinued the Oxy for the las treatment. I'm hoping that the (slight) numbness will go away overtime.

    It sounds like you get you merds through an IV, I chose to have a port implanted for my 12 treatments, which I will leave in until my follow up tests in March after I hear the words "you clean" (hopefully).

    You're halfway there Lily!!!!!!

  • SophDan2
    SophDan2 Member Posts: 150 Member
    #13
    I should check for typos before sending

    I should check for typos before sendingSealed

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #14
    SophDan2 said:

    I should check for typos before sending

    I should check for typos before sendingSealed

    Don't worry about it

    Blame it on chemo brain. 

    TRU

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #15
    SophDan2 said:

    I should check for typos before sending

    I should check for typos before sendingSealed

    Just remember... Every time

    Just remember... Every time you make a typo, the errorists win. ;)

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #16
    SophDan2 said:

    The way I looked at it.

    I experienced numbness after each treatmwent, which last longer the deeper I got into the treatments. The only time that the numbness lasted from one treatment to the next, was for #12, which is why I discontinued the Oxy for the las treatment. I'm hoping that the (slight) numbness will go away overtime.

    It sounds like you get you merds through an IV, I chose to have a port implanted for my 12 treatments, which I will leave in until my follow up tests in March after I hear the words "you clean" (hopefully).

    You're halfway there Lily!!!!!!

    That's right. I'm half way

    That's right. I'm half way there!!!! Yes, I'm getting the Oxy via IV drip every 3 weeks. I know majority of people prefer the port but I guess I just don't want to have the port on me throughout the duration of the treatment. I'm an oddball. Lol. I do feel the tingling in my left arm where the IV goes few days after but it's tolerable if I keep a heating pad on. Sensitivity to cold ilasts bit longer. The other day I got such a craving for ice cream. I gave myself a small bowl and I felt my lips spasm up and my throat burned. Ugh! So much for my craving huh?! 

    Good luck on your follow up in March. We all want to hear "You're clean!" And those are the 3 words you will hear! :)

  • lizard44
    lizard44 Member Posts: 409 Member
    #17
    Congratulations, Lily

    Congratulations  on being halfway through the  treatments- and stay away from ice cream! WinkYou are a brave soul for getting the treatments without a port.  I've had my port (this is the second one) for so long  I don't even notice it most of the time, and since I'll be on maintenance chemo long term, I'm kind of glad to have it.

    Grace/lizard44

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #18
    Thank you Grace! I get these

    Thank you Grace! I get these crazy cravings. Is this normal from the chemo? No, I'm not pregnant. Lol!!!

    I think I'm more of a chicken for not getting the port of being insert a hole in my body especially after my surgery. Having the IV isn't really that bad for me. 

    Sucks that you have to be on chemo long term but wishing you the best! :)

  • SophDan2
    SophDan2 Member Posts: 150 Member
    edited November 2017 #19
    Lily Flower said:

    That's right. I'm half way

    That's right. I'm half way there!!!! Yes, I'm getting the Oxy via IV drip every 3 weeks. I know majority of people prefer the port but I guess I just don't want to have the port on me throughout the duration of the treatment. I'm an oddball. Lol. I do feel the tingling in my left arm where the IV goes few days after but it's tolerable if I keep a heating pad on. Sensitivity to cold ilasts bit longer. The other day I got such a craving for ice cream. I gave myself a small bowl and I felt my lips spasm up and my throat burned. Ugh! So much for my craving huh?! 

    Good luck on your follow up in March. We all want to hear "You're clean!" And those are the 3 words you will hear! :)

    Icecream

    Hi Lily,

    It is funny that you mention icecream, as as soon as the sensitivity to cold subsided I would go and get an icecream sundae (after all 12 treatments). I didn't care if the nerves spasmed, as long as it didn't hurt!

    I guess cancer turns us all in to an oddball, as we have to make decisions that we never even thought about, like how to eat.

    Thx again

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #20
    SophDan2 said:

    Icecream

    Hi Lily,

    It is funny that you mention icecream, as as soon as the sensitivity to cold subsided I would go and get an icecream sundae (after all 12 treatments). I didn't care if the nerves spasmed, as long as it didn't hurt!

    I guess cancer turns us all in to an oddball, as we have to make decisions that we never even thought about, like how to eat.

    Thx again

    Hey Barry

    Hey Barry

    Ha! I go for ice cream as soon as my recovery week starts. I need to gain some weight back. At my last treatment I was being weighed before my IV. it read 119. I gained 1 pound and I was thrilled. Then the nurse said we take 2 pounds off for clothes. O_O 

     

  • Mikenh
    Mikenh Member Posts: 777
    #21
    Lily Flower said:

    Hey Barry

    Hey Barry

    Ha! I go for ice cream as soon as my recovery week starts. I need to gain some weight back. At my last treatment I was being weighed before my IV. it read 119. I gained 1 pound and I was thrilled. Then the nurse said we take 2 pounds off for clothes. O_O 

     

    I seem to be able to put on

    I seem to be able to put on weight quite easily and still have to work to not gain. I suspect the reason is that I'm normally very active and I can't be these days. I did the military press on the Smith Machine at the office yesterday and it was quite a challenge to figure out how to do them. I can't pick up the bench because it's too heavy so I just pushed it into place. The weight plates are 2.5s, 5s, 10s, 25s, and 45s and I could only move the first three weights. But people rack weights in oddball orders so they may put the 25s over the 10s which means that I'd have to remove the 25s before getting to the 10s.

    I think that I need to do more weight training to keep my muscles up. I tried doing the flexbar in my office (it's a piece of rubber about a food long and the exercise is just to twist it). It's used for tennis and golfers elbow rehab, repetitive strain injuries and to beef up the wrist and forearm.

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