Time to Introduce Myself

John212

Based on a couple of suggestions in the Semi-Colon Roll Call thread, I'm posting this to introduce myself. Here's what I posted there:

 

I found out I had colon cancer just about one year ago (1/14/14) from my first-ever colonoscopy at age 62. That led to an immediate CEA test and a CT Scan and a recommendation that I find a surgeon and an oncologist. It's my sense of humor, I suppose, but I asked the gastroenterologist if the Yellow Pages would be a good place to start. He was less amused than I hoped.

Here's the rundown:

January, 2014 - Colon resection to remove a distal sigmoid tumor; dx T3 N1, two of twelve lymph nodes involved

February, 2014 - Install a Mediport in advance of chemo treatments

March, 2014 - Begin 12 rounds of FOLFOX with 5FU on a two-week cycle turnaround

June, 2014 - During treatment #7 I had a violent reaction to the oxaliplatin so we dropped it from the regimen

August, 2014 - Completed the FOLFOX treatments

January, 2015 - One-year followup colonoscopy and CT Scan scheduled for later this week

I have to say that I've been lurking on a few of the cancer forums and I've found this one to be especially warm and  welcoming. I plan to stick around - here and in life in general. I live in a suburb of Chicago.

jen2012

Welcome John.  Yes we are a

Welcome John.  Yes we are a warm and wonderful bunch

Have docs been monitoring your CEA at all?   During and after chemo?   

Good luck with your scans - I hope all is clear.   What's the docs plan if (when!)  these scans are clear?  How often will you be monitored?

Look forward to seeing you around and hearing that you got good results from your tests.

Fight for my love

Good luck with your scan!

Good luck with your scan! Pray for a good result.

John212

jen2012 said:

Welcome John.  Yes we are a

Welcome John.  Yes we are a warm and wonderful bunch

Have docs been monitoring your CEA at all?   During and after chemo?   

Good luck with your scans - I hope all is clear.   What's the docs plan if (when!)  these scans are clear?  How often will you be monitored?

Look forward to seeing you around and hearing that you got good results from your tests.

Scans and plans

Thanks for the welcome.

We have not been monitoring my CEA level as it was normal at the time that the tumor was discovered (0.9 as I recall). Apparently mine was one of those colon cancers that does not produce a change in CEA, but it's worth checking at least annually.

Assuming my scans are clean, the plan is for quarterly visits with the oncologist and annual scans until we reach the five-year mark. We'll reassess the plan along the way, of course, but that's where we are right now - and I hope will be in a few days when we have the results.

John212

Fight for my love said:

Good luck with your scan!

Good luck with your scan! Pray for a good result.

Thanks

Thank you. I am always grateful for support - even from folks I've never met.

hippiechicks

Welcome John212! 
I agree

Welcome John212! 

I agree with you about the forum .. in comparison.  Lots of support and good peeps here!  In my experience, there does not seem to be a smarter bunch than those traveling the journey!

Learning all you can right now is crutial in my opinion, that way you are prepared for whatever comes down your path.  This disease is unpredictable and as we all know ... knowledge is power.  Having the tools in the box and knowing what questions to ask our doctors may make all the difference in the outcome later down the road.  

Hope you stick around and share some stories!! Best of luck for continued NED. 

 

Phil64

John, sorry you had to find

John, sorry you had to find us but happy you did. The group is very helpfull and supporting. Sending prayers and best wishes for your upcoming scans. Oxciliplatin was a rough drug on me too. I think I have permanent neuropathy in my feet from that drug.

John212

hippiechicks said:

Welcome John212! 
I agree

Welcome John212! 

I agree with you about the forum .. in comparison.  Lots of support and good peeps here!  In my experience, there does not seem to be a smarter bunch than those traveling the journey!

Learning all you can right now is crutial in my opinion, that way you are prepared for whatever comes down your path.  This disease is unpredictable and as we all know ... knowledge is power.  Having the tools in the box and knowing what questions to ask our doctors may make all the difference in the outcome later down the road.  

Hope you stick around and share some stories!! Best of luck for continued NED. 

 

Thanks. I definitely plan to

Thanks. I definitely plan to stick around.

John212

Phil64 said:

John, sorry you had to find

John, sorry you had to find us but happy you did. The group is very helpfull and supporting. Sending prayers and best wishes for your upcoming scans. Oxciliplatin was a rough drug on me too. I think I have permanent neuropathy in my feet from that drug.

Thank you. I, too, have been

Thank you. I, too, have been troubled by peripheral neuropathy from the oxaliplatin. I'm finding - and others in my local support group report the same - that it got worse once our cold weather hit for good about a month ago. I'm sorry to hear that yours is permanent. I'm hoping that mine will abate eventually.

Easyflip

John212 said:

Thank you. I, too, have been

Thank you. I, too, have been troubled by peripheral neuropathy from the oxaliplatin. I'm finding - and others in my local support group report the same - that it got worse once our cold weather hit for good about a month ago. I'm sorry to hear that yours is permanent. I'm hoping that mine will abate eventually.

Hey John

Keep that monster at bay. They cut the oxy for my 11th chemo and eliminated it for my 12th. That was 13 months ago and I'm sorry to say I still have neuropathy. The doc thinks it might be permanent. Nonetheless I'm completely thankful for modern medicine because I'm NED now and had a recent clean scan just 2 days ago. My wife and I are off to vegas this weekend to celebrate! Gotta keep busy livin', right? Good luck to you and best wishes!

Easyflip/Richard

lilacbrroller

Easyflip said:

Hey John

Keep that monster at bay. They cut the oxy for my 11th chemo and eliminated it for my 12th. That was 13 months ago and I'm sorry to say I still have neuropathy. The doc thinks it might be permanent. Nonetheless I'm completely thankful for modern medicine because I'm NED now and had a recent clean scan just 2 days ago. My wife and I are off to vegas this weekend to celebrate! Gotta keep busy livin', right? Good luck to you and best wishes!

Easyflip/Richard

Welcome

greetings. We are the "small town" of cancer boards, less busy than colon club but a good solid community nonetheless.  Nice to meet you.

atb 

Karin

Cathleen Mary

lilacbrroller said:

Welcome

greetings. We are the "small town" of cancer boards, less busy than colon club but a good solid community nonetheless.  Nice to meet you.

atb 

Karin

Welcome, John.  I am so glad

Welcome, John.  I am so glad that you made yourself known.  This board is warm, welcoming and knowledgeable.  I have found this forum a great resource and a soft place to land. Your experience will help others.

CM

Yolllmbs

Cathleen Mary said:

Welcome, John.  I am so glad

Welcome, John.  I am so glad that you made yourself known.  This board is warm, welcoming and knowledgeable.  I have found this forum a great resource and a soft place to land. Your experience will help others.

CM

Welcome John

It's always terrible when people have to find this forum BUT it is a great forum!  I've found the conversation, cyber hugs and information is the best.  I'm on the same track as you are with the exception that my onc cancelled the 11 and 12th round of chemo because of my side effects.  I go in March for my follow up scans and colonoscopy.  Neuropathy has gotten better but not gone away.  I'm hoping!

 

Yolanda

Annabelle41415

Welcome

Welcome and so glad that you found our boards and find them inviting and friendly.  We are a great bunch of people that can help you through almost any situation you find yourself in.  Don't ever hesitate to post a question, even in the most sensitive of matters, as we've answered it all.  You sound like a very upbeat person and that will get you a long way in healing.  Wishing you the best outcome on the scans coming up and please let us know how it goes.  Once again welcome and sorry you had to join our group but glad you found the best one. 

Kim

John212

Annabelle41415 said:

Welcome

Welcome and so glad that you found our boards and find them inviting and friendly.  We are a great bunch of people that can help you through almost any situation you find yourself in.  Don't ever hesitate to post a question, even in the most sensitive of matters, as we've answered it all.  You sound like a very upbeat person and that will get you a long way in healing.  Wishing you the best outcome on the scans coming up and please let us know how it goes.  Once again welcome and sorry you had to join our group but glad you found the best one. 

Kim

Thanks to you, Kim and to

Thanks to you, Kim and to everyone else who has commented so far.

I wish I could say that the scans went ok this week, but that would be a fib. I couldn't keep the colonoscopy prep down so the results were inconclusive. The doc found a couple of polyps (snipped and sent for biopsy) and he was able to pull some tissue samples from the anastomosis done last year, so in a few more days we'll know about that at least. I'll have to repeat the scoping in the next couple of weeks, but he is going to recommend a gentler prep than the SUPREP, which is truly vile stuff. He said that the second try will involve two days of clear liquids only, but I'm good with that if the colon blaster liquid is more bearable.

This morning I had my follow-up CT Scan, and should know early next week what it shows.

Now I'm spending some time looking into Cymbalta. I have seen from the Journal of Clinical Oncology that it's the only drug which ASCO can give even a moderate recommendation for mitigating the symptoms of Chemotherapy-Induced Peripheral Neuropathy, but I'm not yet sure that I want to willingly bring a new drug into my regimen. I know from posts at the Colon Club that some people have had real problems with the drug and others have been helped. Since it's a choice for me - after all, I could just put up with the pain for a while to see how it goes - I want to be sure of what i'd be signing up for.

ron50

John212 said:

Thanks to you, Kim and to

Thanks to you, Kim and to everyone else who has commented so far.

I wish I could say that the scans went ok this week, but that would be a fib. I couldn't keep the colonoscopy prep down so the results were inconclusive. The doc found a couple of polyps (snipped and sent for biopsy) and he was able to pull some tissue samples from the anastomosis done last year, so in a few more days we'll know about that at least. I'll have to repeat the scoping in the next couple of weeks, but he is going to recommend a gentler prep than the SUPREP, which is truly vile stuff. He said that the second try will involve two days of clear liquids only, but I'm good with that if the colon blaster liquid is more bearable.

This morning I had my follow-up CT Scan, and should know early next week what it shows.

Now I'm spending some time looking into Cymbalta. I have seen from the Journal of Clinical Oncology that it's the only drug which ASCO can give even a moderate recommendation for mitigating the symptoms of Chemotherapy-Induced Peripheral Neuropathy, but I'm not yet sure that I want to willingly bring a new drug into my regimen. I know from posts at the Colon Club that some people have had real problems with the drug and others have been helped. Since it's a choice for me - after all, I could just put up with the pain for a while to see how it goes - I want to be sure of what i'd be signing up for.

G'day John

  I was a stage3c of the transverse and descending colon. As you can see from my avatar I joined here nov 2001. It has been a long time. On the 22nd of this month I reach the end of year sixteen and the start of year seventeen of survival. I did not have any of the platinum drugs.I had a very old regime of cheme from the late 50's early sixties. It consisted of weekly infusions of 5fu enhanced every second week with levamisole ,three tablets a day for three days after the chemo dose. Levamisole was banned in the US for human use in 2001 because of often fatal side effects. Too little did nothing , too much killed you and just right may have killed your cancer. None of the chemo I was on was noted for causing peripheral neuropathy. I was sent to a neurologist the year before last because because I was getting severe flares from an immuno-suppressant called methotrexate. I asked him what was causing it and what I could do for it. He did nerve conductivity tests and he told me I had moderate to severe motor sensory peripheral neuropathy in both feet , legs and left hand he would not speculate on what caused it and therefore would not treat it. In other words that will be 500 dollars , go away and dont annoy me any more. My rheumatologist tried me on lyrica , neurontin , norspan and fentanyl patches none helped. One dr suggested cymbalta and I asked him if he had seriously looked at any of the patient based reviews of this drug. I would not touch it . My personal view only. I had the same problem with immuno- suppressants. I lose protein thru my kidneys , again suspected to be a side effect of chemo. It is an auto immune disease of unknown type and cause. I have had three kidney biopsies and all show problems but none that relate to known kidney disease. When I was under 3 grams a day loss the only drugs available to me were methotrexate and cytoxan. mtx cause flares in neuropathy and cytoxan is considered the nuclear waste of immuno  suppressants. I copped a dose of parainfluenza and my protein loss shot up to over seven grams a day. Nephrotic syndrome. I have been on cyclosporine for over a year. It is a very powerful drug and can kill kidneys and or liver. I am monitored carefully. It has dropped my protein loss to around 1.5 grams a day bu not into remission so I will probably never get off it. I suffer severe pain from grade two ankylosing spondylitis and severe psoriatic arthritis . both auto- immune problems. I take 80 mg of oxycodone a day as targin tablets they also have naloxone an opiat antagonist. The tablets are no good to addicts ,you cannot get high on them but you do get addicted. They help significantly with the pain ,but there is a down sidde. Opiate induced constipation. I take two targin 40/20 twice a day . After each dose I take two biscodyl and two coloxyl to restart colon motility and soften stools. It is a pain in the butt but it is working.  I can tell you now that you may have a dream survival and suffer nothing or you can ,like me , come to the conclusion that surviving survial is not easy. Good luck for the future, Ron.

janderson1964

I am glad you decidd to start

I am glad you decidd to start yournown post so everyone could welcome you and hear about your story so once again welcome.

Momof2plusteentwins

Welcome John

Sorry about your colonoscopy fun.  I will have one in April and I am not looking forward to it.  Is this your first CT since diagnosis.  I am Stage IV and I get a CT every 3 months.  My CEA is checked every other month when my port is flushed.  Good luck with your results.

annalexandria

John212 said:

Thanks to you, Kim and to

Thanks to you, Kim and to everyone else who has commented so far.

I wish I could say that the scans went ok this week, but that would be a fib. I couldn't keep the colonoscopy prep down so the results were inconclusive. The doc found a couple of polyps (snipped and sent for biopsy) and he was able to pull some tissue samples from the anastomosis done last year, so in a few more days we'll know about that at least. I'll have to repeat the scoping in the next couple of weeks, but he is going to recommend a gentler prep than the SUPREP, which is truly vile stuff. He said that the second try will involve two days of clear liquids only, but I'm good with that if the colon blaster liquid is more bearable.

This morning I had my follow-up CT Scan, and should know early next week what it shows.

Now I'm spending some time looking into Cymbalta. I have seen from the Journal of Clinical Oncology that it's the only drug which ASCO can give even a moderate recommendation for mitigating the symptoms of Chemotherapy-Induced Peripheral Neuropathy, but I'm not yet sure that I want to willingly bring a new drug into my regimen. I know from posts at the Colon Club that some people have had real problems with the drug and others have been helped. Since it's a choice for me - after all, I could just put up with the pain for a while to see how it goes - I want to be sure of what i'd be signing up for.

Welcome to the forum, John!

We're the nicest club no one ever wants to join.  

And in all seriousness, I'm very sorry you have to join us, but now that you're here, I hope we can help you out as you walk this path. It's a tough one, but made a little easier with good company.

Let us know how things go.  That prep stuff is vile, isn't it?  Hope the new kind is more palatable.

Helen321

Hi John, you know if you're

Hi John, you know if you're going to lurk there are some really fun places in life to do it but the cancer boards are not one of them.  We'll have to work on that.  Welcome to the board, Helen