New Member here on the forum

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retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Tue May 08, 2018 10:29 am

Hi Susan - feeling great - have been able to do some gardening and getting out. Side effects have pretty much dissipated although diarrhea is still present it's minor. Next infusion and cycle start is Thursday May 10 - my big enemy is the AC and cold toilet seat in the infusion clinic bathroom - it sets off every side effect simultaneously including voice loss etc. during the last half hour or so. This time will go in with extra clothing layers and polar-tek panties. We are still fairly cool in our little valley here. Set pool solar heat temperature high - it was 87 yesterday, but afraid to get in. Xeloda dosage will be reduced back to about 2000 (2x 1000) to try to avoid the gut problems. Hope you are doing well and pushing through your Oxi effects ---
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Fri May 11, 2018 12:03 am

So I was able to work every day this week despite infusion on Thursday. Twelve IEPs this week which meant report writing and such. I have to admit cognition is a little slower, some word finding difficulties. Hot cocoa is now my favorite afternoon treat.

Glad you are doing better, hope today wasn’t awful. One of the nurses advised me “ just don’t panic when you feel symptoms, it makes it worse.”
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

NHMike
Posts: 1554
Joined: Fri Jul 21, 2017 3:43 am

Re: New Member here on the forum

Postby NHMike » Fri May 11, 2018 5:19 am

Caat55 wrote:So I was able to work every day this week despite infusion on Thursday. Twelve IEPs this week which meant report writing and such. I have to admit cognition is a little slower, some word finding difficulties. Hot cocoa is now my favorite afternoon treat.

Glad you are doing better, hope today wasn’t awful. One of the nurses advised me “ just don’t panic when you feel symptoms, it makes it worse.”
Susan


I'm going to pick up a tin on the way in this morning. I was thinking about it yesterday.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Fri May 11, 2018 2:01 pm

I think the panic actually did make things worse - no problems yesterday though - doc reduced Oxi by 20% and made a world of difference. I was also calmer and prepared to NOT panic no matter what. Did get the speech defect (lateral 'S' lisp) yesterday and some numbing in the lips today - this is new. Cold sensitivity in hands, but overall much less. Kudos to you for hanging in there at the job - inspiration! Hot chocolate sounds wonderful ....
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Sun May 20, 2018 10:25 am

retiredteacher wrote:I think the panic actually did make things worse - no problems yesterday though - doc reduced Oxi by 20% and made a world of difference. I was also calmer and prepared to NOT panic no matter what. Did get the speech defect (lateral 'S' lisp) yesterday and some numbing in the lips today - this is new. Cold sensitivity in hands, but overall much less. Kudos to you for hanging in there at the job - inspiration! Hot chocolate sounds wonderful ....


The nausea kicked in big time this round. It was constant and the rock on my chest awful. What are your feelings this time? How did you get oxi reduced? I want to talk mine into something less intense. Side effects were almost debilating, nausea and cold sensitivity, metal mouth.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

Eleda
Posts: 132
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: New Member here on the forum

Postby Eleda » Sun May 20, 2018 12:36 pm

Hi Susan,
I'm not much help as I'm only 10 days post op, but my surgeon said I'm up for discussion at the MDT meating June 1st but all going well reversal will be n 4 /5 months as oncology now will b following the new 3 month chemo regime instead of the 6month as new protocol so I'd imagine anything after 3months I would ask to reduce as u don't want to he long term side effects
Hope u feel better soon
Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

heiders33
Posts: 250
Joined: Sat Nov 04, 2017 11:08 am

Re: New Member here on the forum

Postby heiders33 » Sun May 20, 2018 1:49 pm

I remember getting that rock feeling in my chest - I described it as a piece of lead or a bowling ball in my insides. I had never felt anything like that before, wasn’t even sure if it was nausea or some other appetite suppression. But it wasn’t fun. I got my Oxi reduced in round six to 50% due to neuropathy in my feet and it was much better.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI inconclusive
August 2018: PET abnormal, liver enzymes normal, CEA 2.4

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Sun May 20, 2018 8:38 pm

heiders33 wrote:I remember getting that rock feeling in my chest - I described it as a piece of lead or a bowling ball in my insides. I had never felt anything like that before, wasn’t even sure if it was nausea or some other appetite suppression. But it wasn’t fun. I got my Oxi reduced in round six to 50% due to neuropathy in my feet and it was much better.


It isn't something they described in my chemo teaching. Sorry you experienced it too.
It feels like a gigantic gas bubble, I have been burping like a frat boy trying to ease it. I will ask for a lighter dose as side effects lingered way longer this time. I am going NYC on the 29th, would like to have some quality time with our kids.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Mon May 21, 2018 12:36 pm

Susan, the oncologist reduced the Xeloda by 20% after round 2 due to profound diarrhea - a replay of the neoadjuvant treatment. CapeOx Round 2 gut was in terrible pain due to the spasms. I don't have an ileostomy so no basis for comparison, but wondering if your gut pains are similar? The oncology nurse wasn't willing to proceed on the last oxi treatment (Round 3) because of the all the side effects that kick in before I even leave the infusion clinic - notably that feeling of strangulation. She grabbed the oncologist from his office and had him reconsider the dosage. Even with the dose reduction, I am having a harder time with nausea general malaise, and fatigue. Cold sensitivity and painful, freezing feet.


Susan wrote:
"The nausea kicked in big time this round. It was constant and the rock on my chest awful. What are your feelings this time? How did you get oxi reduced? I want to talk mine into something less intense. Side effects were almost debilating, nausea and cold sensitivity, metal mouth."
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Mon May 21, 2018 8:56 pm

The CBD helped the nausea but the lump is still in my chest. Feels like When you swallow air but big time. I called oncologist to see about a reduction but am afraid even a small change will reduce my possibility of a cure.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

NHMike
Posts: 1554
Joined: Fri Jul 21, 2017 3:43 am

Re: New Member here on the forum

Postby NHMike » Tue May 22, 2018 3:33 am

Caat55 wrote:The CBD helped the nausea but the lump is still in my chest. Feels like When you swallow air but big time. I called oncologist to see about a reduction but am afraid even a small change will reduce my possibility of a cure.
S


Did you have a Pathological Complete Response with surgery?
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Tue May 22, 2018 9:36 am

NHMike wrote:
Caat55 wrote:The CBD helped the nausea but the lump is still in my chest. Feels like When you swallow air but big time. I called oncologist to see about a reduction but am afraid even a small change will reduce my possibility of a cure.
S


Did you have a Pathological Complete Response with surgery?

Yes, pathology report was clean. T2n0, clean margins, just scar tissue.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Tue May 22, 2018 11:54 am

Caat55 wrote:The CBD helped the nausea but the lump is still in my chest. Feels like When you swallow air but big time. I called oncologist to see about a reduction but am afraid even a small change will reduce my possibility of a cure.
S


This is my concern as well ... however my oncologist explained that the respective power hitters for RC cure are 1) the initial neoadjuvant chemo and radiation and 2) having a good, qualified surgeon. He says the evidence for this third part is weaker and the % benefit is smaller ... depending upon initial stage ... and that it is not unusual for the oncologist to have to adapt treatment to individuals. Then again, have seen Stage II folks who have skipped chemo then have it come back as a Stage IV. It just seems to me that if they've pulled over 20 lymph nodes, and they were clear, and with a good response to neoadjuvant, that would be an argument for some wiggle room in the treatment. My oncologist is saying he'll be happy if I can go five cycles, so that's the goal for now.

Never got a good initial staging, but all the later diagnostics seem to point to a Stage 2. However, the local docs were very concerned my tumor was "huge" 6 cm plus. So I know that's why he is treating it as a hard Stage 3.

Packing up and putting ourselves on a plane to Orlando for a few days after the last Xeloda. Mental health trip. Will still pack my heating pad - am needing for my feet at night - I may be sweaty hot, but feet are painfully cold. Sometimes a girl just needs a warm butter beer ...
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Tue May 22, 2018 5:04 pm

Have a wonderful trip. I am both excited and nervous about mine. I spoke to oncologist about chemo on Thursday, he said we could reduce it to 80% but couldn't give me any numbers about how the outcome might be changed. I decided to tough it out. We can go by dispensary to pick up whatever I need to help with nausea this weekend.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Tue May 22, 2018 7:29 pm

Susan if you have time, could you PM the dispensary you are using? I am getting mixed reviews on the Calaveras Co outfits ... the Zofran is not as effective as it was earlier, and I have Compazine, but the side effects are more pronounced. We are leaving in the morning, but back Sunday, so I should have time to get something before next infusion on the 31st ... hang in there ...
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.


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