Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 1849
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Feb 28, 2018 10:16 am

I met with the oncologist and he looked at my pictures of the forearm and called in a nurse. I think that he wanted the nurse to check it for infection which would mean taking off the dressing and then redressing it. But she was comfortable with the pictures that I took so we didn't need to do that.

I mentioned the arthritic symptoms and we agreed to dropping the Xeloda from 4,000 to 3,500. I get the 500 mg pills so everything is in 500 mg increments. He also suggested staying on 80% Oxaliplatin but I asked for 75% as I was worried that what happened in cycle 2 would happen again because of the cumulative nature.

Someone on another forum posted some research on 50% of Adjuvant cycles and I have to look at that but we chatted about that. But I'm at four so I need to start looking at the research as I'd like the number six for confidence and less pain. My blood work is okay and I'm getting a prescription for Zofran.

The oncologist asked me a few times if I wanted to do the infusion today so I think that he was spooked by me falling down the stairs but I do feel good enough, particularly with the reduction. The warmer temps (it's about 45 out) are a big help.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

NHMike
Posts: 1849
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Feb 28, 2018 5:39 pm

Symptoms were comparable, maybe slightly worse than Cycle #3. More throat and eye sensitivity. The finger cold sensitivity didn't feel that bad on its own but it's a nuisance combined with the Xeloda hands/feet syndrome. What made today tolerable is that it was in the 60s when I drove home and my car was sitting in the sun. Despite that, I still had the heat on. I took a couple of naps in the afternoon (I've been putting in a lot of hours at work so I felt okay taking a few breaks).

Only disturbing thing is that CEA climbed to 2.6. It was in the 2.2 or lower before the other infusions. 2.7 at diagnosis. Normal is <= 3.8. I've seen a lot of threads on CEA rising during 5FU/Xeloda threads so it's a common worry.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

NHMike
Posts: 1849
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sat Mar 03, 2018 1:52 pm

I slept for 11 hours last night after being tired for a good chunk of the day. Felt like crap yesterday and this morning but I feel better today with some coffee. I still have cold sensitivity but it's a bit better now as I have a space heater blowing on me.

I was at Trader Joes yesterday and feeling awful and a checkout clerk asked how I was feeling and I mentioned chemotherapy and she offered me a plant as I was leaving the store. I declined but I guess that's what playing the "chemo card" is like. At the moment, I have questions about cycle #5 but we'll see how I feel in a few days. Hot coffee and food do help.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

mpbser
Posts: 512
Joined: Wed Apr 19, 2017 11:52 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby mpbser » Sat Mar 03, 2018 2:39 pm

My husband had no qualms about playing the "chemo card." I think he might even miss having it in his pocket. It's OK to be vulnerable. Plus, I think it's nice that people show generosity and kindness. We need more of it in this world.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1849
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sat Mar 03, 2018 3:20 pm

mpbser wrote:My husband had no qualms about playing the "chemo card." I think he might even miss having it in his pocket. It's OK to be vulnerable. Plus, I think it's nice that people show generosity and kindness. We need more of it in this world.


I'd really rather not have the card myself.

I hope that he's doing well.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

NHMike
Posts: 1849
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sat Mar 03, 2018 9:16 pm

The nausea is back and the side-effects of the Zofran are drowsiness, dizzyness and something else. So I'm undecided on taking it tonight. I might as well just go to sleep if those side-effects affect me. The main problem is eating - I don't feel like eating much or drinking much with the nausea.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Shana » Sat Mar 03, 2018 9:57 pm

Nausea is the worst, so sorry that you're having such a hard time. Just don't get dehydrated, if you can't get fluids down then consider asking for hydration tomorrow to keep your electrolytes in check. I speak from several ER experiences last year.

I found that warm tea with honey was tolerable. I usually drink tea unsweetened but the honey seemed to make it more palatable with the nausea and tastebud issues that I had. I used dissolvable Zofran when I was unable to swallow the pills and it helped some but make me loopy.

I hope tomorrow is better for you
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

NHMike
Posts: 1849
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sat Mar 03, 2018 10:08 pm

Shana wrote:Nausea is the worst, so sorry that you're having such a hard time. Just don't get dehydrated, if you can't get fluids down then consider asking for hydration tomorrow to keep your electrolytes in check. I speak from several ER experiences last year.

I found that warm tea with honey was tolerable. I usually drink tea unsweetened but the honey seemed to make it more palatable with the nausea and tastebud issues that I had. I used dissolvable Zofran when I was unable to swallow the pills and it helped some but make me loopy.

I hope tomorrow is better for you


My daughter will make honey/lemon/hot water drinks for me. I drank a lot of tea for a while until I got sick of it.

Tonight I'm drinking warm water mixed with Zevia Ginger Ale (the electric kettle has been a lifesaver). The ginger helps with the nausea (I hope) but the downside is gas in the bag from the carbonation.

BTW, cheese sets off my nausea - I seem sensitive to it these days.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

NHMike
Posts: 1849
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sun Mar 04, 2018 8:14 am

The nausea is gone this morning but I had cramps this morning so I need electrolytes for sure. Getting enough fluids is harder too because I have to drink everything warm. Salt would probably help but it's hard to tell how much salt I'm getting because my taste buds are AWOL. I have some Nuun tablets and will go with those to get a boost this morning. It's basically a slow grind towards normalcy.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

Caat55
Posts: 546
Joined: Sat Dec 23, 2017 6:01 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Caat55 » Sun Mar 04, 2018 1:36 pm

Glad you are somewhat better. Try chicken bouillon, salty and hydrating. I find it a comfortable way to get both some warmth and balance electrolytes.

Lots of bruising around new port site. Challenging washing my hair. How long did it last for you?

Heading out to play with dog in the snow, grateful it's a rat thing in California's I am so cold these days.

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
CT NED 9/2018

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Shana » Sun Mar 04, 2018 6:22 pm

I had top ramen to boost my sodium intake. It was actually very comforting food and I could taste it in spite of my tastebuds which were also AWOL as you said so well.

I love sparkling water and have the same issue with carbonation, since I wear a two piece appliance it's pretty easy to burp it.

No one told me that this was going to be easy but it's a lot tougher than I ever imagined. Hang in there, there's light at the end of the tunnel!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

NHMike
Posts: 1849
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sun Mar 04, 2018 11:05 pm

Caat55 wrote:Glad you are somewhat better. Try chicken bouillon, salty and hydrating. I find it a comfortable way to get both some warmth and balance electrolytes.

Lots of bruising around new port site. Challenging washing my hair. How long did it last for you?

Heading out to play with dog in the snow, grateful it's a rat thing in California's I am so cold these days.

Susan


It was a real nuisance for three days, I had range-of-motion for about a week and didn't think about it after two.

The buillon is a good idea. I do have some beef broth or maybe vegetable broth.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

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juliej
Posts: 2878
Joined: Thu Aug 05, 2010 12:59 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby juliej » Mon Mar 05, 2018 5:41 pm

NHMike wrote:The nausea is gone this morning but I had cramps this morning so I need electrolytes for sure. Getting enough fluids is harder too because I have to drink everything warm. Salt would probably help but it's hard to tell how much salt I'm getting because my taste buds are AWOL. I have some Nuun tablets and will go with those to get a boost this morning. It's basically a slow grind towards normalcy.

Nuun tabs worked best for me. I had to drink things a bit warmer than room temperature. It's hard to drink water so you kinda have to force it. After awhile everything tasted like cardboard so I had to force eating too. It wasn't easy, but I knew that if I got weak one of two things would happen: 1) I'd feel even crappier than I already felt, or 2) my onc would lower the chemo dose. I didn't want it lowered unless absolutely necessary because I was a Stage 4 (although I did eventually need a reduction in the oxaliplatin), so I made myself chew and swallow the cardboard. :D
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 9/14/2018, CEA<1

NHMike
Posts: 1849
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Mon Mar 05, 2018 5:46 pm

juliej wrote:
NHMike wrote:The nausea is gone this morning but I had cramps this morning so I need electrolytes for sure. Getting enough fluids is harder too because I have to drink everything warm. Salt would probably help but it's hard to tell how much salt I'm getting because my taste buds are AWOL. I have some Nuun tablets and will go with those to get a boost this morning. It's basically a slow grind towards normalcy.

Nuun tabs worked best for me. I had to drink things a bit warmer than room temperature. It's hard to drink water so you kinda have to force it. After awhile everything tasted like cardboard so I had to force eating too. It wasn't easy, but I knew that if I got weak one of two things would happen: 1) I'd feel even crappier than I already felt, or 2) my onc would lower the chemo dose. I didn't want it lowered unless absolutely necessary because I was a Stage 4 (although I did eventually need a reduction in the oxaliplatin), so I made myself chew and swallow the cardboard. :D


That's a really good description. Eating and drinking aren't enjoyable so you have to force yourself.

I need to vary the flavors on Nuun as I get tired of them after a while.

I'm drinking Dunkin coffee, hot chocolate, warm ginger ale, warm nuun, sometimes warm water and sometimes tea. I would just love to chug a cold glass of water. I have to wait another 10 days for that and then get in as much as I can for four days.
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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
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

cbsmith
Posts: 75
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby cbsmith » Mon Mar 05, 2018 8:37 pm

One thing I was told when I was having nausea issues was not to force yourself to drink something you normally enjoy as it will make you not like it when you feel better. I was told to drink something that I normally didn’t enjoy or was different when I was nauseous.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin


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