Time to Introduce Myself

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.

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. 

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.

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 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 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 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 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.

  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.

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.

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