Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jan 17, 2018 11:15 am

I called McKesson last night asking where my ostomy supplies were. I had started the ordering process mid-December. They dropped the ball multiple times (I was calling weekly). The guy went through the notes on my account, said that nothing had been done, apologized and said that they'd send them out immediately. And they did. I have them with me now. So I'm safe for two months.

I also bought Burt's Bees Hand Salve for my dry hands, vanishing fingerprints and cracks at the tips. I tried it out and it's slippery though it's not petroleum-based. What was nice, though, is that there's something in there that makes my hands feel warm. And that takes away the cold sensitivity/neuropathy. At least for now. If this works, then I'm going to be a good customer of this stuff.

The week after the second infusion was brutal and I was weak, tired and frustrated. I'm better today and will get better in the next few days. This stuff is rough!

The stuff that makes your hands feel warm is Eucalyptus Oil.
Last edited by NHMike on Wed Jan 17, 2018 2:14 pm, edited 1 time in total.
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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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Wed Jan 17, 2018 2:01 pm

I did love my week off. Chemo is tough. It's amazing how crappy it can make you feel. You're getting closer to the end.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

heiders33
Posts: 285
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Wed Jan 17, 2018 2:41 pm

I just had my fifth round today and boy do I feel terrible. But it helps knowing that I’m near the end, and that I can recover.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

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susie0915
Posts: 847
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Wed Jan 17, 2018 5:05 pm

heiders33 wrote:I just had my fifth round today and boy do I feel terrible. But it helps knowing that I’m near the end, and that I can recover.

You're almost there. I had six rounds of Xelox also. I remember how excited I was for my last round. Hope your next 3 weeks aren't too bad.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Caat55
Posts: 527
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed Jan 17, 2018 9:08 pm

Mike
I am sorry things are so rough for you. I appreciate your honesty as it give those of us behind in treatment you a realistic picture of what's ahead. I don't like euphemisms, but facts. Honestly everyone's comments and suggestions are great. I found No Crack Super Hand Cream works great, doesn't make my hands feel oily, slippery.
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: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jan 17, 2018 10:38 pm

Caat55 wrote:Mike
I am sorry things are so rough for you. I appreciate your honesty as it give those of us behind in treatment you a realistic picture of what's ahead. I don't like euphemisms, but facts. Honestly everyone's comments and suggestions are great. I found No Crack Super Hand Cream works great, doesn't make my hands feel oily, slippery.
S


A person on another board thought that we were all doing pretty well because we didn't often express our problems.

I do like to tell it like it is and prefer that others do the same. The first two stages weren't that bad for me but the third phase has been tough. And I know that it's tough for a lot of other people. There are a few people that don't have problems with Oxaliplatin but I think that the percentage is small.
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

rockhound
Posts: 109
Joined: Fri Jul 14, 2017 5:00 pm

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

Postby rockhound » Wed Jan 17, 2018 11:02 pm

susie0915 wrote:
heiders33 wrote:I just had my fifth round today and boy do I feel terrible. But it helps knowing that I’m near the end, and that I can recover.

You're almost there. I had six rounds of Xelox also. I remember how excited I was for my last round. Hope your next 3 weeks aren't too bad.


Did not do the Xelox, but six rounds of Folfox on that two week cycle. It was a nice feeling when finished.. round 5 seemed rougher than the last (but maybe I was just glad to be done?!)... almost there!
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
1/18 - 5mm polyp removed during colonoscopy
5/18 - CT, NED

rockhound
Posts: 109
Joined: Fri Jul 14, 2017 5:00 pm

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

Postby rockhound » Wed Jan 17, 2018 11:08 pm

NHMike wrote:
Caat55 wrote:Mike
I am sorry things are so rough for you. I appreciate your honesty as it give those of us behind in treatment you a realistic picture of what's ahead. I don't like euphemisms, but facts. Honestly everyone's comments and suggestions are great. I found No Crack Super Hand Cream works great, doesn't make my hands feel oily, slippery.
S


A person on another board thought that we were all doing pretty well because we didn't often express our problems.

I do like to tell it like it is and prefer that others do the same. The first two stages weren't that bad for me but the third phase has been tough. And I know that it's tough for a lot of other people. There are a few people that don't have problems with Oxaliplatin but I think that the percentage is small.


It is tough but you are doing a nice job powering through it; it is important for people to know that you can get through it also! I was on a wed to Friday infusion cycle; Sat was bad, Sun just as bad, but felt more or less OK by the following Friday (cycles 3, 4, 5 were worst for me). My hat is off to everyone doing this now when the weather is cold here in North America (or have in past winters) also!
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
1/18 - 5mm polyp removed during colonoscopy
5/18 - CT, NED

Caat55
Posts: 527
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Sat Jan 27, 2018 2:50 pm

Hi Mike,
Things are quiet from you. Hope you are doing okay!
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: 1723
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Jan 27, 2018 9:35 pm

Caat55 wrote:Hi Mike,
Things are quiet from you. Hope you are doing okay!
S


Thanks for asking.

Today's my first decent day, 18 days after the infusion. I contacted the doctor Thursday indicating my problems and asking for a dosage reduction and/or a week break. He thought that a break might be a good approach with tests to see how I am doing. I will see if I can get the tests on Tuesday - he was worried about one of the test results before the 2nd infusion. So we might delay infusion by a day or two or up to a week. My wife is heading out of the country for a month so things will be more challenging for a while.

Feeling better really changes your outlook. A few days ago I was fairly miserable.

Temps hit the 50s today which probably helped. We have been below freezing all day that being in the 40s and 50s feels incredibly refreshing. I drank a few cool drinks today as well and was okay.
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

James65
Posts: 377
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

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

Postby James65 » Sun Jan 28, 2018 10:21 am

Hi Mike,
James here. We spoke when you first started on this journey. I live in Exeter and not sure how far that is from you, but if you need anything feel free to ask. I had a very difficult time with chemo too, especially oxalyplatin. I went through this treatment in 2006 so I imagine some things have changed, but I found that the meds they gave me to manage side effects caused their own side effects. The more I could simplify meds and food, the better off I was.

To manage side effects I only took lorazapam and smoked tiny (really tiny) amounts of pot and that got me through my infusion weeks well. The other thing that helped was I noticed that I felt way worse is I didn't eat than if I did. So, even though I had no appetite I experimented with different favor profiles (salty, sweet, spicy, etc.) to find things that broke through that metallic taste in my mouth and forced myself to eat. Increasing food intake helped and I found flavors or tastes that worked. For example, pepperoni pizza (frozen, not from a pizza place) was tolerable and that bland flavors--chicken without spice, plain rice or potato, etc.--were worse than things with a little heat or spice. I also found that tonic water mixed with lemon was good too. I think the bitterness of it was helped. The tonic water also helped ease my symptoms. I wouldn't mix grapefruit juice, though.

I hope this helps. As I said, feel free to reach out. If you don't still have my contact info let me know.

Best,
James
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.

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susie0915
Posts: 847
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Sun Jan 28, 2018 10:38 am

It does help when the weather isn't so cold. Hopefully postponing treatment will be helpful
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

mpbser
Posts: 471
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Sun Jan 28, 2018 5:46 pm

Sorry to hear that the side effects are hitting you this hard, Mike. It is so strange how people react so differently. Hope you feel better soon!
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

James65
Posts: 377
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

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

Postby James65 » Mon Jan 29, 2018 10:18 am

I've always thought that if there was one thing I would want people to know it's that cancer and the treatments affect everyone uniquely. There isn't a single cancer experience, though many shared experiences.
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.

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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 » Mon Jan 29, 2018 12:49 pm

James65 wrote:I've always thought that if there was one thing I would want people to know it's that cancer and the treatments affect everyone uniquely. There isn't a single cancer experience, though many shared experiences.


James, you nailed it above. We are all unique and so is our cancer. Chemo experiences can vary greatly.

Mike, I hope this week is gentler for you. The honest sharing of your journey is inspiring and thoughtful to so many of us!
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...


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