Chemotherapy Journey

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heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Chemotherapy Journey

Postby heiders33 » Sun Jan 21, 2018 12:02 pm

I’m thinking about asking for a reduction for my sixth and last cycle. I don’t know. This fifth one has hit me hard with fatigue, cold sensitivity, and lack of appetite. It’s definitely more acute and lasting longer. But maybe I should just power through for the last one since none of these side effects are abnormal. It’s hard to say because it’s so tough, and yet I know it’s doing its job.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Chemotherapy Journey

Postby Rikimaroo » Sun Jan 21, 2018 12:10 pm

It is really hard especially without an ileo. pellet pooping hurts alot then it comes normal with diarrhea and that hurts. I am on the 12 day break right now, today is day 2. 31st my next treatment. Not being able to even drink room temperature water sucks. Florida is actually cold right now, nothing like up north, but still cold enough to keep the water cold.

reduction of Oxi might be an option since these shocks are really painful and brutal. I will mention to my Onc. I am hanging in there, but dread my next treatment and feel like throwing up just thinking about it. I just want to get this over with.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Chemotherapy Journey

Postby susie0915 » Sun Jan 21, 2018 12:21 pm

My ileo was reversed early due to a bowel blockage so I also didn't have it during chemo. It was tough as I did experience alot of diarrhea. My oncologist prescribed questran which is a powder you put in water or orange juice. It is used for cholesterol but bulks up stool and helps with diarrhea. It seemed to help.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Chemotherapy Journey

Postby NHMike » Sun Jan 21, 2018 12:28 pm

heiders33 wrote:I’m thinking about asking for a reduction for my sixth and last cycle. I don’t know. This fifth one has hit me hard with fatigue, cold sensitivity, and lack of appetite. It’s definitely more acute and lasting longer. But maybe I should just power through for the last one since none of these side effects are abnormal. It’s hard to say because it’s so tough, and yet I know it’s doing its job.


I think that some of this depends on what's going on with the rest of your life. I have a friend that's retired and he went through four cycles and it was hell for him. But he could sleep all day and didn't have a lot of other responsibilities. If I had one more to do and was on short-term disability, I would ask for a dosage reduction and go through with it. It's a tough decision.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Chemotherapy Journey

Postby NHMike » Sun Jan 21, 2018 12:30 pm

Rikimaroo wrote:It is really hard especially without an ileo. pellet pooping hurts alot then it comes normal with diarrhea and that hurts. I am on the 12 day break right now, today is day 2. 31st my next treatment. Not being able to even drink room temperature water sucks. Florida is actually cold right now, nothing like up north, but still cold enough to keep the water cold.

reduction of Oxi might be an option since these shocks are really painful and brutal. I will mention to my Onc. I am hanging in there, but dread my next treatment and feel like throwing up just thinking about it. I just want to get this over with.


I bought an electric kettle and it's been a life-saver. It heats up water very quickly and I pour it into a mug and it stays warm for quite some time. If the water in the mug gets too cold, then I just add some more hot water. I would have trouble getting enough fluids without it. It sits next to my laptop.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Chemotherapy Journey

Postby heiders33 » Sun Jan 21, 2018 3:32 pm

NHMike wrote: I think that some of this depends on what's going on with the rest of your life. I have a friend that's retired and he went through four cycles and it was hell for him. But he could sleep all day and didn't have a lot of other responsibilities. If I had one more to do and was on short-term disability, I would ask for a dosage reduction and go through with it. It's a tough decision.


I have a fairly flexible job with an extended sick leave policy that I have been using for chemo days (and this time I used it on the second day as well). However, February is a pretty busy month at work with lots of deadlines. It's not going to be fun to have chemo brain during that time. I'll talk to my onc about options. Thankfully my boss is understanding, and I have colleagues who have been pulling some of the weight.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Chemotherapy Journey

Postby heiders33 » Sun Jan 21, 2018 3:40 pm

NHMike wrote:
Rikimaroo wrote:It is really hard especially without an ileo. pellet pooping hurts alot then it comes normal with diarrhea and that hurts. I am on the 12 day break right now, today is day 2. 31st my next treatment. Not being able to even drink room temperature water sucks. Florida is actually cold right now, nothing like up north, but still cold enough to keep the water cold.

reduction of Oxi might be an option since these shocks are really painful and brutal. I will mention to my Onc. I am hanging in there, but dread my next treatment and feel like throwing up just thinking about it. I just want to get this over with.


I bought an electric kettle and it's been a life-saver. It heats up water very quickly and I pour it into a mug and it stays warm for quite some time. If the water in the mug gets too cold, then I just add some more hot water. I would have trouble getting enough fluids without it. It sits next to my laptop.


I haven't heard of these shocks being a side effect. Definitely ask your onc about it.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

Tdubz
Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: Chemotherapy Journey

Postby Tdubz » Sun Jan 21, 2018 4:01 pm

heiders33 wrote:
NHMike wrote:
Rikimaroo wrote:It is really hard especially without an ileo. pellet pooping hurts alot then it comes normal with diarrhea and that hurts. I am on the 12 day break right now, today is day 2. 31st my next treatment. Not being able to even drink room temperature water sucks. Florida is actually cold right now, nothing like up north, but still cold enough to keep the water cold.

reduction of Oxi might be an option since these shocks are really painful and brutal. I will mention to my Onc. I am hanging in there, but dread my next treatment and feel like throwing up just thinking about it. I just want to get this over with.


I bought an electric kettle and it's been a life-saver. It heats up water very quickly and I pour it into a mug and it stays warm for quite some time. If the water in the mug gets too cold, then I just add some more hot water. I would have trouble getting enough fluids without it. It sits next to my laptop.


I haven't heard of these shocks being a side effect. Definitely ask your onc about it.



A shocking sensation is possibly a sign of neuropathy. It usually runs down your arms and legs. I have them now. They began around treatment 7 or 8. These were never painful though so it could be something else. Definitely let your onc know.

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Chemotherapy Journey

Postby NHMike » Sun Jan 21, 2018 4:05 pm

Are they cramps?
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Chemotherapy Journey

Postby Rikimaroo » Sun Jan 21, 2018 6:46 pm

susie0915 wrote:My ileo was reversed early due to a bowel blockage so I also didn't have it during chemo. It was tough as I did experience alot of diarrhea. My oncologist prescribed questran which is a powder you put in water or orange juice. It is used for cholesterol but bulks up stool and helps with diarrhea. It seemed to help.



Unfortunately mine is constipation. I think I prefer diarrhea even though I know that hurts just as much. I rather evacuate then not. I am going to talk to my Onc when I go in for next treatment. This really stinks :(
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Chemotherapy Journey

Postby Rikimaroo » Sun Jan 21, 2018 6:49 pm

No they are shocks (not like electric shocks lol or maybe irritation spikes) Maybe like Gas shocks, hard to explain, the butt hole one is just sensitivity and irritation. Correct it is not normal, that is what I heard from another doctor. I think I must of got some damage from the Radiation Therapy back in Feb 2017 and since shocks are related to nerves and oxi affects your nerves it is most likely what it is. At least that what the other oncologist said. They are very painful in my stomach and anus. They go away after 1-2 days of treatment so highly doubt there going to stop treatment.

Drinking warm water is hard and sucks. Really not easy especially when under this treatment.

I don't know if I can handle, I just want my surgery. I gotta stay strong. Not easy.

I got it good on the job side, I am in IT so I can work from home. The mgmt loves me and just wants me to get well.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Chemotherapy Journey

Postby orlar » Sun Jan 21, 2018 7:12 pm

I know several people have stated having "shocks" in their legs and feet when bending the head forward. Those may be tied to Lhermitte's Sign. Mine happen every time I tilt my head forward somewhat fast and started around cycle 9. I don't know if it affects the stomach area. As always, keep your ONC up to date on your side affects. I know it's hard, but stay as positive as you can. It keeps your mind from the dark places.
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Chemotherapy Journey

Postby heiders33 » Sun Jan 21, 2018 7:23 pm

I know it’s not easy but you do have to stay strong. If I can do it you can too! Hang in there.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Chemotherapy Journey

Postby NHMike » Sun Jan 21, 2018 8:00 pm

Rikimaroo wrote:No they are shocks (not like electric shocks lol or maybe irritation spikes) Maybe like Gas shocks, hard to explain, the butt hole one is just sensitivity and irritation. Correct it is not normal, that is what I heard from another doctor. I think I must of got some damage from the Radiation Therapy back in Feb 2017 and since shocks are related to nerves and oxi affects your nerves it is most likely what it is. At least that what the other oncologist said. They are very painful in my stomach and anus. They go away after 1-2 days of treatment so highly doubt there going to stop treatment.

Drinking warm water is hard and sucks. Really not easy especially when under this treatment.

I don't know if I can handle, I just want my surgery. I gotta stay strong. Not easy.

I got it good on the job side, I am in IT so I can work from home. The mgmt loves me and just wants me to get well.


I tried drinking from a water fountain at the gym today and my throat had that closing up feeling (I really hate it). So I still can't drink cold water. I can swish it in my mouth until it's warm enough to swallow though. I am looking forward to my week off when I hope that I'll be able to drink cold drinks again. Having to drink hot all the time is a pain. I do like many hot drinks but cold is refreshing.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Tdubz
Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: Chemotherapy Journey

Postby Tdubz » Sun Jan 21, 2018 8:03 pm

Rikimaroo wrote:No they are shocks (not like electric shocks lol or maybe irritation spikes) Maybe like Gas shocks, hard to explain, the butt hole one is just sensitivity and irritation. Correct it is not normal, that is what I heard from another doctor. I think I must of got some damage from the Radiation Therapy back in Feb 2017 and since shocks are related to nerves and oxi affects your nerves it is most likely what it is. At least that what the other oncologist said. They are very painful in my stomach and anus. They go away after 1-2 days of treatment so highly doubt there going to stop treatment.

Drinking warm water is hard and sucks. Really not easy especially when under this treatment.

I don't know if I can handle, I just want my surgery. I gotta stay strong. Not easy.

I got it good on the job side, I am in IT so I can work from home. The mgmt loves me and just wants me to get well.


The cold sensitivity is the worst! I had my chemo in the summer and all I wanted was a cold drink to beat the heat. For me, the chemo made water taste bad too. I switched to gatorade after the first few rounds. It was much better at room temp than water.

You can definitely do this! If I was feeling bad, I’d always imagine that any cancer cell floating around had to feel 100x worse lol. I’d also celebrate any time I reached a milestone, like a quarter or halfway done. It made the whole process not seem so daunting, and instead of thinking how bad everything was, I was with my family celebrating how far I’d come.


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