New Member saying Hello!

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thecommodore
Posts: 3
Joined: Sat May 05, 2018 2:13 am

New Member saying Hello!

Postby thecommodore » Sat May 05, 2018 6:09 pm

HI!

I am a 55 year old male diagnosed with colon cancer in January 2018. I had a routine colonoscopy in January that found a small tumor (about 3.5 mm) in my colon. I had surgery on January 31 to remove the tumor, at which point 30 lymph nodes were taken, and cancer markers were found in one of them. This makes me Stage 3. I was put on a course of oxaliplatin (four infusions), and xeloda (to be taken every 12 hours, once in the morning, once in the evening, for 14 consecutive days with seven consecutive days off). There are four cycles of this, and I'm about halfway through the third cycle.

At first both were manageable, but this third cycle of xeloda has been very hard, which I will detail in another post.

I'm happy to be here and looking forward to interacting with you all. :D
- The dr​ said that what they found was adenocarcinoma - not uncommon for colon cancer.
- There were NO associated tumors.
- They took out 30 lymph nodes. Of those 30, one showed signs of cancer/metastasis, so I'm Stage 3.
- The doctor said I will need about 4 months of chemotherapy for the maximum cure rate.
- I will NOT need radiation therapy.

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: New Member saying Hello!

Postby SteveNZ » Sun May 06, 2018 3:10 am

Hi, thanks for sharing it makes things easier being part of this 'band of brothers/sisters' sharing a common battle.
I didn't handle Xelox well at all. But for some of us that is the case.
All the best with this challenge
Steve
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
August 27th-November 2018 - Surgery and long, long recovery
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member saying Hello!

Postby retiredteacher » Sun May 06, 2018 9:24 am

Sorry to hear of your diagnosis and the reason for being here, but welcome! Many knowledgeable and caring people. Hopefully you may pick up some tips for making your last cycle a little easier!
Terri
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: New Member saying Hello!

Postby O Stoma Mia » Sun May 06, 2018 9:48 am

thecommodore wrote:...I'm happy to be here and looking forward to interacting with you all....

Welcome to the forum, and I'm sorry to see that you are having problems with your Xelox treatment. Please give us further details and continue posting messages until your message count is high enough to promote you to Regular Member status.

Also, you should consider creating a signature because this will help readers understand your situation better.

Infomation for creating a signature is found here:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

RulaLenska
Posts: 24
Joined: Fri May 04, 2018 8:13 pm

Re: New Member saying Hello!

Postby RulaLenska » Sun May 06, 2018 10:22 am

thecommodore wrote:HI!

I am a 55 year old male diagnosed with colon cancer in January 2018. I had a routine colonoscopy in January that found a small tumor (about 3.5 mm) in my colon. I had surgery on January 31 to remove the tumor, at which point 30 lymph nodes were taken, and cancer markers were found in one of them. This makes me Stage 3. I was put on a course of oxaliplatin (four infusions), and xeloda (to be taken every 12 hours, once in the morning, once in the evening, for 14 consecutive days with seven consecutive days off). There are four cycles of this, and I'm about halfway through the third cycle.

At first both were manageable, but this third cycle of xeloda has been very hard, which I will detail in another post.

I'm happy to be here and looking forward to interacting with you all. :D

Welcome to the club though I’m sorry that you need to be here. You’ll find a fine bunch of people here with much helpful information, incite and experience. This cancer business can be a little lonely and that is understood here. I come here often and I find it comforting.
Dx 8/16 IV stage with mets to lungs liver adrenals
KRAS wt MSS CEA over 400
2 x folfori caused refractory diarrhea but dropped CEA to 200
Switched to folfox stopped after 10 due to neuropathy
Avastin leucorvorin 5fu dropped after 11 due to hfs
Chemo break to travel.
Nov. 2017 emergency sleeve colectomy of primary tumor.
Vectibix irinotecan
PET scan shows no lung or adrenal tumors
5/2 Portal Vein Embolisation in preparation for liver resection.
6/12 extended right resection removing 60%.

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

Re: New Member saying Hello!

Postby NHMike » Sun May 06, 2018 10:51 am

It sounds like the studies that say that half is as good as a whole for Adjuvant Chemo is being used.

I'm a tad older and going through Adjuvant Chemo, similar to yours but it's 8 Cycles of Xeloda and Oxaliplatin. I'm scheduled for #7 this week. I was originally on 4,000 of Xeloda but we switched to 3,500 either on the fourth or fifth cycle. Oxaliplatin dosage was 100%, 100%, 65%, 60%, 0%, 55%. The plan is one more Oxaliplatin infusion in the remaining two cycles. This regimen is very hard, especially if you live in a cold climate and you're doing it in the wintertime. Be sure to communicate with your oncologist on what you are feeling as they can reduce the dosage or give you a break. I have taken two one-week breaks from chemo (I'm on the second right now) and it can help quite a bit.
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

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New Member saying Hello!

Postby DarknessEmbraced » Sun May 06, 2018 1:49 pm

Welcome to the group!*hugs* Sorry you're having a hard time with chemo! I would let your doctor know. Hopefully, your doctor can prescribe something that will help with side effects!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

thecommodore
Posts: 3
Joined: Sat May 05, 2018 2:13 am

Re: New Member saying Hello!

Postby thecommodore » Sun May 06, 2018 7:08 pm

Some more information:

I am currently taking 2000mg of Xeloda during each day - 1000 every 12 hours - for 14 days with a seven day break.

I did some reading here and saw that some folks were having problems with nausea because they were either taking it on an empty stomach, or they hadn't waited long enough after eating before taking it. Until yesterday, I was taking it with meals, and so far, I haven't felt nausea today.

However, as I mentioned in my first post, I am nearing the end of my third cycle, and this one has been very rough. In fact, until this cycle, the only trouble I had was during the breaks, and the problem there was relatively mild nausea, and unrelenting diarrhea, tho Imodium took care of that for the most part. I also had really bad "had/foot syndrome" (a form of neuropathy). At one point my feet were blistering and it was very painful to even walk. However, the good news I can report is that I have been regularly applying generous amounts of moisturizing lotion to both my hands and feet, and while they are still very red, this is not one place I am feeling pain. When I told my oncologist this, he said that were he working with an intern, he would present my case as a textbook example of the kind of side effects one gets from this treatment.

But the past 2-3 weeks have been really bad. I hate to get too graphic, but here's what's been happening in a nutshell for the past couple of weeks:

I have had persistent diarrhea, regular abdominal pain (a feeling of having been punched in the gut) that sometimes makes standing up for even short periods of time difficult, nausea, vomiting, lack of appetite, insomnia, and fatigue - sometimes all I want to do, or can do, is lie around on the couch, or in bed. Doing something as routine as taking out the garbage is a project. I had been taking a prescription for the diarrhea (lomotil), but it did not work at all, and even made eating an ordeal because I had zero appetite (I was down about 30 pounds from where I was at the beginning of all this). My oncologist took me off that drug and now I'm back to (Imodium) regularly, and that has helped a good deal, but not completely. I'm also taking Zofran for nausea, and that has also helped a good deal, but not completely. For overall pain relief they gave me Neurontin, which I took once, and not only did it not relieve the pain, it made me feel strange and uneasy, so I stopped taking it. The good news is I am the proud owner of a State of California medicinal marijuana card, and I bought a really nice tincture that has done more to relieve me completely of pain than anything I've been prescribed, and I'm grateful for that. It's also increased my appetite (the munchies - brings back memories! 8) ) so I've put a little bit of the weight back on, but I'm still way down from my regular level.

And all of this this has, for the most part, zeroed out any quality of life. I've missed a lot of work, and I'm considering taking a leave of absence because I can't really function.

Honestly, I never expected anything like this to happen.

So, did any of you experience things like this during your time taking Xeloda? What was/is your dosage level? Also, once you completed your course, did you continue to feel any after effects? If so, for how long?

Anyway, my wife and I are talking about possibility reducing the dosage, but in spite of this ordeal, I'd rather just bite the bullet and deal with it, because there's just one more cycle after this one, and the sooner I can finish it, the better it seems to me. But we'll see what the doctor says.

So that's about it. In spite of this wicked curve ball I'm doing my best to keep up a positive outlook - namely trying to accomplish at least one otherwise routine household task a day just so I have that normalcy in my life. But still this has thrown me for a loop.

Any insights you can offer would be greatly appreciated.

Thanks! :)
- The dr​ said that what they found was adenocarcinoma - not uncommon for colon cancer.
- There were NO associated tumors.
- They took out 30 lymph nodes. Of those 30, one showed signs of cancer/metastasis, so I'm Stage 3.
- The doctor said I will need about 4 months of chemotherapy for the maximum cure rate.
- I will NOT need radiation therapy.

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

Re: New Member saying Hello!

Postby NHMike » Sun May 06, 2018 8:36 pm

I have run into the problems that you describe on another board with a couple of people. One person was retired and spent a lot of time sleeping and the other went on disability. So it can sometimes be very bad. The retired person quit after two cycles I think - he was Stage 2 and and did his research. The other slept most of the day and wound up with mets (Stage 4). I would recommend working with your oncologist and seeing if you can take a break or modify the dosage. You could look into short-term disability as well. I did that for the surgery.
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

thecommodore
Posts: 3
Joined: Sat May 05, 2018 2:13 am

Re: New Member saying Hello!

Postby thecommodore » Sun May 06, 2018 10:26 pm

NHMike wrote: I would recommend working with your oncologist and seeing if you can take a break or modify the dosage.


I am going to do just that. I realized there would be pain, but nothing completely debilitating like this.
- The dr​ said that what they found was adenocarcinoma - not uncommon for colon cancer.
- There were NO associated tumors.
- They took out 30 lymph nodes. Of those 30, one showed signs of cancer/metastasis, so I'm Stage 3.
- The doctor said I will need about 4 months of chemotherapy for the maximum cure rate.
- I will NOT need radiation therapy.

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member saying Hello!

Postby Caat55 » Thu May 17, 2018 12:37 am

I on third round. Nausea is unrelenting even with zofran , a patch behind ear and Prilosec. What is the tincture you are using? I am tired of feeling like I am going to barf or this constant gas bubble in my throat, chest.

S


thecommodore wrote:Some more information:

I am currently taking 2000mg of Xeloda during each day - 1000 every 12 hours - for 14 days with a seven day break.

I did some reading here and saw that some folks were having problems with nausea because they were either taking it on an empty stomach, or they hadn't waited long enough after eating before taking it. Until yesterday, I was taking it with meals, and so far, I haven't felt nausea today.

However, as I mentioned in my first post, I am nearing the end of my third cycle, and this one has been very rough. In fact, until this cycle, the only trouble I had was during the breaks, and the problem there was relatively mild nausea, and unrelenting diarrhea, tho Imodium took care of that for the most part. I also had really bad "had/foot syndrome" (a form of neuropathy). At one point my feet were blistering and it was very painful to even walk. However, the good news I can report is that I have been regularly applying generous amounts of moisturizing lotion to both my hands and feet, and while they are still very red, this is not one place I am feeling pain. When I told my oncologist this, he said that were he working with an intern, he would present my case as a textbook example of the kind of side effects one gets from this treatment.

But the past 2-3 weeks have been really bad. I hate to get too graphic, but here's what's been happening in a nutshell for the past couple of weeks:

I have had persistent diarrhea, regular abdominal pain (a feeling of having been punched in the gut) that sometimes makes standing up for even short periods of time difficult, nausea, vomiting, lack of appetite, insomnia, and fatigue - sometimes all I want to do, or can do, is lie around on the couch, or in bed. Doing something as routine as taking out the garbage is a project. I had been taking a prescription for the diarrhea (lomotil), but it did not work at all, and even made eating an ordeal because I had zero appetite (I was down about 30 pounds from where I was at the beginning of all this). My oncologist took me off that drug and now I'm back to (Imodium) regularly, and that has helped a good deal, but not completely. I'm also taking Zofran for nausea, and that has also helped a good deal, but not completely. For overall pain relief they gave me Neurontin, which I took once, and not only did it not relieve the pain, it made me feel strange and uneasy, so I stopped taking it. The good news is I am the proud owner of a State of California medicinal marijuana card, and I bought a really nice tincture that has done more to relieve me completely of pain than anything I've been prescribed, and I'm grateful for that. It's also increased my appetite (the munchies - brings back memories! 8) ) so I've put a little bit of the weight back on, but I'm still way down from my regular level.

And all of this this has, for the most part, zeroed out any quality of life. I've missed a lot of work, and I'm considering taking a leave of absence because I can't really function.

Honestly, I never expected anything like this to happen.

So, did any of you experience things like this during your time taking Xeloda? What was/is your dosage level? Also, once you completed your course, did you continue to feel any after effects? If so, for how long?

Anyway, my wife and I are talking about possibility reducing the dosage, but in spite of this ordeal, I'd rather just bite the bullet and deal with it, because there's just one more cycle after this one, and the sooner I can finish it, the better it seems to me. But we'll see what the doctor says.

So that's about it. In spite of this wicked curve ball I'm doing my best to keep up a positive outlook - namely trying to accomplish at least one otherwise routine household task a day just so I have that normalcy in my life. But still this has thrown me for a loop.

Any insights you can offer would be greatly appreciated.

Thanks! :)
Do at 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
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

GilletteRazorMan
Posts: 10
Joined: Sun May 20, 2018 3:27 pm
Facebook Username: Marc Lowell

Re: New Member saying Hello!

Postby GilletteRazorMan » Sun May 20, 2018 4:15 pm

Thanks...me new too here in Canada. Am 56. See my long post when approved. Good Luck to both of us and Others at the beginning.


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