When chemo ends

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PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

When chemo ends

Postby PainInTheAss » Wed Jun 11, 2014 4:38 pm

I am getting my last round of chemo (Xelox) on the 17th. Yay for me!

Butt... I have been feeling more and more fatigued with each infusion. So much so that the other day I almost started crying in the grocery store because it was so hard to go shopping. My house has gone to s*** because I have lost the energy ( or even the care about it) to clean anything. I used to make coffee every morning, but now I just don't want to. I have completely lost my appetite and started losing weight again. My onc is not concerned since we are almost done, but my lack of calories is certainly not helping my energy (please don't recommend ensure or carnation instant breakfast... Blah... Milk products taste gross on oxi).

So my question is...

How long did it take you after your last infusion before you felt like "yourself" again?

I read one blogger say it took him about six months before he was 80%. Others seems to bounce back after their last cycle. I am so tired of feeling like this. I miss me.

Mary
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: When chemo ends

Postby skypup » Wed Jun 11, 2014 5:39 pm

It took me about 6 weeks to get most of the "normal me" back. Some side effects lingered, of course, but nbd.

Congrats on the milestone!

ASTEPHENS33
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Location: Seattle, Washington
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Re: When chemo ends

Postby ASTEPHENS33 » Wed Jun 11, 2014 6:22 pm

Physically, my energy was back in about 3 months, but it took almost a year for my feet issues to go away. My oncologist said it takes about a year for everything to flush out. Emotionally, I don't remember the time duration, but it was hard. My whole like had been organized around treatment and then it was just over and people seemed to have an expectation that it should be over for me, too. I was NED, but was concerned about recurrence. (After 9 years, I still cry when I have my yearly survellience colonoscopy because of the possible outcome. I have polyps every year, but a manageable number and small. I have a genetic mutation.)

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elise
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Location: Ontario (Canada)

Re: When chemo ends

Postby elise » Wed Jun 11, 2014 6:30 pm

2 weeks and I was starting to feel better. 6 months and it was about as good as it got.

Hang in there!!

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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Guinevere
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Location: NE TX

Re: When chemo ends

Postby Guinevere » Wed Jun 11, 2014 7:24 pm

Mary,
One valuable hint is to use the electric carts at the store! You won't believe how much difference it makes. You'll think way more about than others will. One note, you become "invisible" and people will walk right out in front on you! :shock: Anyhoo, that's one way to help yourself now. Another is to have someone with you if you're buying a bunch of stuff. Lots of times, DH would take in the refrigerated stuff and leave the rest until after we're rested. Just because you've always done something a certain way, like carrying in all the groceries at once, doesn't mean you have to do it that way now. :wink:

Okay, enough about now. Let's face what happens after chemo. Your fatigue level should start getting slowly better in about two weeks and should build from there. Give your body time. Time for the chemo to work it's way out of your body. Something my cardiologist's PA told me that's helped in being patient in healing was your whole body is affected by cancer - not just the organ(s) where the cancer is. Add to that the havoc that chemo can cause and it's no wonder it takes a while to start getting over chemo.

Your house - if you don't have help from a loved one or friend and have insurance, look into home health aid. They will sweep, mop, do laundry and even cook for you. I know it gets on my last nerve when things are messy and I'm not up to taking care of it.

I wish you the best of luck and hope you're NED forever!

God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: When chemo ends

Postby PainInTheAss » Wed Jun 11, 2014 7:34 pm

ASTEPHENS33 wrote:Physically, my energy was back in about 3 months, but it took almost a year for my feet issues to go away. My oncologist said it takes about a year for everything to flush out. Emotionally, I don't remember the time duration, but it was hard. My whole like had been organized around treatment and then it was just over and people seemed to have an expectation that it should be over for me, too. I was NED, but was concerned about recurrence. (After 9 years, I still cry when I have my yearly survellience colonoscopy because of the possible outcome. I have polyps every year, but a manageable number and small. I have a genetic mutation.)


Thank you for sharing and congratulations on your 9 year Ned status!

I had heard about post treatment depression, too (not sure if that's what you're describing exactly). I really don't feel like I'm "fighting" cancer. Just obeying orders. Go here get a scan, get your blood drawn, here's your radiation schedule, show up for surgery, this appointment, that shot, show up for chemo and so on. Then treatment stops. You are left with the aftermath of your obedience. And the quiet full realization of what you've been through (with no appointments to distract you). And the constant fear of recurrence and what that might mean for your time on this earth. It's something a non cancer patient can't comprehend. How could they?

I'm sure my two unsupportive children will expect me to be "over cancer" once treatment stops, but I doubt it will be that soon or that easy.

My brother and I are planning an end of treatment celebration in September because it takes oxi three months to get out of your system so I won't know for sure how much neuropathy I will have until then. Right now, it's very mild, but I'm aware that can change even after treatment ends. I've always thought it would suck to be cured but left with permanent pain or some kind of damage that affected your quality of life. You obey anyway because staying alive is the goal. Yes, I would accept pain to still be around, but it would be great to skate through this with few lingering after effects (my permanent colostomy and bladder control issues are plenty!).
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: When chemo ends

Postby PainInTheAss » Thu Jun 12, 2014 12:27 am

Guinevere wrote:Mary,
One valuable hint is to use the electric carts at the store! You won't believe how much difference it makes. You'll think way more about than others will. One note, you become "invisible" and people will walk right out in front on you! :shock: Anyhoo, that's one way to help yourself now. Another is to have someone with you if you're buying a bunch of stuff. Lots of times, DH would take in the refrigerated stuff and leave the rest until after we're rested. Just because you've always done something a certain way, like carrying in all the groceries at once, doesn't mean you have to do it that way now. :wink:


Oh man, I used those electric chairs after surgery and nothing in life has ever made me feel older! But I do get your point. On that trip, I left the groceries in the car until I picked up my 16 yo from her fast food job and told her what happened. She took everything in which was very nice because I'm sure she was tired. I try to only get a few things each trip but I had not been to the store in a long time so we were out of a lot of stuff. Amazing how your mind can think one thing and your body just won't cooperate.

Okay, enough about now. Let's face what happens after chemo. Your fatigue level should start getting slowly better in about two weeks and should build from there. Give your body time. Time for the chemo to work it's way out of your body. Something my cardiologist's PA told me that's helped in being patient in healing was your whole body is affected by cancer - not just the organ(s) where the cancer is. Add to that the havoc that chemo can cause and it's no wonder it takes a while to start getting over chemo.


That helps. Good to know. I think part of the problem emotionally I'm realizing is that my 16yo moved in with me after Christmas last year after living with her dad (2 miles away) for the last four years and I feel so bad that she's getting the worst version of me. I'm anxious to feel better and be a better mother... More fun, lots of food, clean house, on top of things. I did fine the fist few infusions and then just crashed. I hate feeling like I'm disappointing her and I really hate when she is the one helping me. I want to mother her because she is my baby and the last fading light on my 25 year career as a mother. I've loved motherhood and am sad it's coming to an end. Being a mother to independent adults is very different than even a teen. Blah, crying again. Chemo sucks.

Your house - if you don't have help from a loved one or friend and have insurance, look into home health aid. They will sweep, mop, do laundry and even cook for you. I know it gets on my last nerve when things are messy and I'm not up to taking care of it.


Oh my god! I couldn't imagine letting a stranger come in a clean up after this (I have a stack of empty canned fruit cans on my nightstand. They are my friends.... Haha). I used to clean before the housekeeper showed up when I had one. I'm just trying to do something, even small each time I'm up so things are more under control. But thank you for the advice! I might look into it (if I part with my " friends") and a few other embarrassing "friends."


I wish you the best of luck and hope you're NED forever!

God bless ~
Guinevere


Awwww thank you! You gave me such great advice when I was going through chemorad lat year. You are such a welcome and appreciated voice on this forum.

I wish you many happy days!

Mary
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

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Cherie
Posts: 590
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Facebook Username: cherie
Location: New Zealand

Re: When chemo ends

Postby Cherie » Thu Jun 12, 2014 1:43 am

Hi Mary,

It is clear that getting back to normal is different for all of us. I am six months out from my last chemo and I feel about 60% back to normal. I have heard many say it takes a full year. I actually got worse after chemo for a month or two then slowly regained energy and the numbness has improved. I still take pain medication everyday and I am also still quite under weight. I'm not sure if its because I have an illeostmy or I just really busy at work and not eating enough. I guess you just have to be patient. I don't do a lot of exercise but I'm sure that would speed up the process. I guess I just want to say, don't stress, if you don't feel better right away don't give yourself that pressure. As for keeping the calorie intake up I either smoked weed or ate spicy food so I could still taste it. I'm glad I did I hate to think how much thinner I would be. Yay for you, you are nearly there!
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: When chemo ends

Postby PainInTheAss » Thu Jun 12, 2014 5:10 pm

Cherie36 wrote:Hi Mary,

It is clear that getting back to normal is different for all of us. I am six months out from my last chemo and I feel about 60% back to normal. I have heard many say it takes a full year. I actually got worse after chemo for a month or two then slowly regained energy and the numbness has improved. I still take pain medication everyday and I am also still quite under weight. I'm not sure if its because I have an illeostmy or I just really busy at work and not eating enough. I guess you just have to be patient. I don't do a lot of exercise but I'm sure that would speed up the process. I guess I just want to say, don't stress, if you don't feel better right away don't give yourself that pressure. As for keeping the calorie intake up I either smoked weed or ate spicy food so I could still taste it. I'm glad I did I hate to think how much thinner I would be. Yay for you, you are nearly there!


Thanks Cherie. I'm not sure where I am now, feels like 10% so even 80% sounds good to me. Strong spicy foods used to work for me, but my appetite is at a whole new level of not there now. I went out with my brother to my favorite restaurant and ordered my favorite dish and could only eat two bites. I'm seriously considering asking for medical THC my onc has mentioned before mainly just to get my appetite back on track after my last infusion to help boost my energy level faster. I know it will take time, but knowing it's over is going to be such a thrill. I am eager to get on with my new life along with my "new normal." But I I not having a whole of expectations for myself for a few months.

Thanks for your input!
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

SkiFletch
Posts: 6361
Joined: Mon Dec 07, 2009 3:39 pm
Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: When chemo ends

Postby SkiFletch » Thu Jun 12, 2014 10:25 pm

My memory of my last folfox treatment isn't the greatest anymore since it was 4 years ago. What I do remember though was that most of the annoying cold sensitivity was gone after 2 weeks. Food tasted a lot better from 2-4 weeks post treatment. My energy levels were back to probably 90% by 2 weeks and 100% by 4. Hair and nails took a while to recover actually. I'd say 2 months of so, just in time for me to cut it all off for my HIPEC surgery :)
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."


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