My Introduction
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Hi Mr. Positive! You betcha! 12 is very respectable! I am wishing you continued good progress and indeed, attitude is everything!
Matt…..excellent news. Your CA 19-9 sound awesome. Enjoy and don’t worry about the equipment. You are doing great and deserve a wonderful weekend as well.
Hugs,
MarionI’m considering this good news. I got a call this morning from the nurse at MCV where I had some labs done yesterday and my CA 19-9 results were 12. In December at Mayo prior to my resection they were 453. The tests weren’t performed on the same equipment so it’s not fair to compare, I’m told, but 12 seems like a good low number so I’m happy about it. Next follow up is an MRI at MCV in a few weeks and then back to Mayo in June for labs and a CT.
Make the best of your day and weekend everyone – I’m intending to! (exercising my positive attitude here)
-Matt
Matt I completely understand what you are going through and how you are feeling. Emotions all over the place! I go to a psychiatrist for talk therapy and medication management, mainly anxiety. I have also tried massage, acupuncture, and will soon begin an exercise regimen and I find all these helpful and are great distractions to keep you and your mind busy.Good luck.
Dear Matt, so glad to hear that all tests are normal up to now. I am not sure there is a human being who could go through CC without getting the emotional ups and downs. I always thought I was ‘wonder woman’ when I took care of my Teddy for 5 years. Yeah, well I am paying for it still 3 years later. One needs to be strong but you need to also let the emotions come out!
In December I reached a point where I could not stop crying. I had an appointment with my GI and he put me on a very mild antidepressant. I had never taken one in my life and do not take well to new RX. I am on Lexapro 10mg a day. What a difference and NO side effects. But everyone is different. The fact that you are thinking about it means it is time to ask your Doctor. It does not mean forever but to help you through these tough times. You never know how strong you are until “strong” is the only choice you have! But a little help can help a lot.Matt….you have gone through quite a bit and you still are in the healing process. Emotions will be all over the place. I would seek the advice of a counselor as it provides a safe place to scream, cry, and simply let it all hang out.
You might want to consider reaching out to our very own Dr. Giles
http://www.cholangiocarcinoma.org/ask.htm
He is a wonderful resource to us all and has offered his services to our members since the inception of this discussion board.
Hang in there, dear Matt and continue to speak, write and share with this group of understanding and kind people because; we are in this together.
Hugs,
MarionThanks for the info and replies!
I had an appointment with a local liver surgeon here at MCV in Richmond, VA today for what I thought would be a post-surgical follow up visit. After getting some blood drawn and waiting for 90 minutes I never did see the doctor, only a pair of nurses. They’re scheduling a scan for me in the next week or two to establish a new basline of my anatomy after surgery and make sure things look ok. Of course they’ll also be looking for any recurrence too. I asked for an MRI vs CT since my last scan at MCV was also an MRI and they could easily compare the two.
Since I waited for so long, my labs were ready and they all looked normal, which is great. They didn’t run a CA 19-9 so I asked if they would and they agreed. MCV uses different equipment than Mayo for the test. Mayo uses a CA 19-9 assay mfg by Beckmann Coulter and performed on a Unicel DXI 800 and warned that results not obtained from the same setup can’t be used for apples to apples comparisons. It should be interesting to see where the MCV number comes out nonetheless.
I’m scheduling a trip to Mayo for June that will include a CT scan and CA 19-9.
They are also scheduling a visit with an oncologist for me in the next few weeks. I still have at least 2-3 weeks to go before my surgical wounds heal so my hands a tied when it comes to starting adjuvant chemo anyway. More time to dwell on the decision and gather facts and advice.
Trying to stay positive and live a day at a time… It’s the hardest thing! Finding myself brought to tears at the slightest thoughts and sights… Other than “talking” with all of you wonderful people, any suggestions to seek counseling/group/self help in that area as well as reducing stress? I’ve always been a worrier and this really cranks it up!
-Matt
Hi Matt. I am curious if a certain amount of time has passed if it’s considered “too”long. Marion, do you have any idea about that in regards to adjuvant chemo and how much time has passed since resection? My doc said at least 6 weeks to allow for healing process. When I saw her last week I know she mentioned that she wanted me to start soon and I see my onc tom. I will ask her that. I wish you well on your continued recovery!
PorterPorter, I’m still undecided on the adjuvant chemo. I’m 8 weeks post-op now and still have a few open wounds on my incision that need a few more weeks to heal up. I don’t think I could start chemo with these open wounds – I assume they would stop healing and infection would likely set in, but I don’t know for sure.
I spoke with my primary doc at Mayo this week and his opinion is still “why do something that has no evidence of being effective”. I also got a the notion from him that the length of time that has elapsed since resection might be a factor – the longer you wait to do it, the less effective it would likely be.
Of course the oncologists at Mayo recommended it…
Please keep us updated on your chemo as you go and best of luck to you!
-Matt
Kathy, I am curious about the MRI versus CT and anyone please feel free to chime in. I don’t like how I react to the dye with CT so my onc always sticks with MRI’s. She says she prefers them over CT’s. Is there one that is more proficient than the others, or mainly Dr’s preference?
Matt have you had any more thoughts on whether “to chemo or not chemo?”
Porter
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