Diagnosed in January 2020, new to the board

[bglass]

Hi Richard,

Welcome to our community and thank you for taking the time to write out your story.  The patient stories posted here are immensely valuable to patients and caregivers contending with a rare cancer.

Your odyssey of preparing and waiting for a transplant, then having the surgery, is an amazing story.  We do have a few patients who qualify for transplants, this despite the rigorous criteria that are applied.  It is great to hear you are recovering well, and looking forward to a new year.

Your case is one of many showing the importance of seeking treatment at a major cancer center with doctors experienced with this rare cancer.  I hope you will stay in touch and let us know how you are doing.

Take care, regards, Mary

[Richardw]

Good choice, December is Arizona is a lot warmer than December in MN.  My CA 19-9 was 106 in August.  My Doctors at Mayo weren’t concerned at all in that number.  They said it is common to see it so high and weren’t concerned.  My Doctor was Dr Gores who apparently  created a lot of the protocols for this so I trusted his opinion.

I was 48 when diagnosed and 49 now.  I thought the same thing, it wasn’t worth the risk of guessing it wasn’t cancer, I kept thinking about right until the moment they were taking me in for my new liver  =-).  The tumor shrunk a little however my tumor was right in the middle of my bile ducts blocking both ducts and was a decent size that it didn’t matter.  The did biopsy my liver and tumor afterwards.  My liver came back clean and I forget what the term they used for my tumor but it was less than the trace amounts of signs of cancer.   Whatever it was they were thrilled that the radiation appeared to have gotten it all.  (they throw a lot of info at you)

 

[Swadmin]

I am only just going to start the radiation and chemo next week. I’m at Mayo AZ and the protocol is slightly different here. I am getting oral chemo only and they don’t do the brady radiation. I did the radiation simulation Monday and the plan is to start the radiation and chemo Monday the 7th. If you don’t mind, how old are you?

Did they biopsy your old liver after transplant? What was your CA 19-9? Did the chemo and radiation shrink the tumor? I haven’t had a positive biopsy either and was really hoping that it was something else but I think the risks of hoping its not cancer and being wrong are too high.

[Richardw]

I was in for 8 days (I saw people getting out after 4), I was in not due to liver issue but lets say stomach issues.  I don’t think I was eating enough, my appetite wasn’t great and the food wasn’t either.   Have someone bring you food that you really like if you don’t like the food.

The pain after surgery wasn’t that bad the day after I felt great just because of I was still feeling the effects of the drugs from the surgery.  I thought this is a piece of cake.  The next few days there was some discomfort but they give you meds to make sure you are okay.  Only real issue is getting in and out of bed.   Which after 3 or 4 days it wasn’t that bad.    We are from NJ so we stayed in town 6 weeks after the surgery just to be safe and make sure the liver was okay.

I have had no side effect from meds at all.  I am on 7 meds right now, Mayo goes over all of them with you.. and over and over and over.

where in the process are you?

 

[Swadmin]

How long were you in the hospital after the transplant? How have the side effects been from the anti-rejection meds?

[Richardw]

Hello,

Was diagnosed in January in South Jersey with Bile Duct Cancer.   Never knew what it was but by the doctors reactions, I knew it wasn’t good.     Both Doctors had stated that due to the size and location my only option was Chemo and that the chances weren’t good.  Luckily for me I had made an appointment with Memorial Sloan Kettering in NY (Dr. Michael D’Angelica)  luckily for me the Stents that they had put in weren’t working and I was admitted to the hospital.  After MSK had a chance to do some test, Dr. D’Angelica said that the Mayo Clinic in MN had a program for liver transplants for Patients who meet a certain criteria.  I had about 7 brushings and 2 forcep biopsies, which were all inconclusive.  Luckily for me they DIDN’T DO A NEEDLE BIOPSY.  That would have excluded me from a liver transplant at Mayo.  I went out to MN in March after spending 3 months in a hospital because my Bilary drains wouldn’t work correctly and I couldn’t be my Bilirubin levels down.  I went through a week of test and appointments in MN and was accepted into the liver transplant program the next week.  I spent a month out in MN in April and parts of May getting Chemo and Radiation.  They never did get a conclusive cancer diagnosis from a biopsy.  There were so many things that could go wrong that could have eliminated me as a candidate as I waited which was stressful.  I was scheduled to go back in August for more test and a week before I was set to go, they called me to relocated to MN because I was moving up the list.  I went through more test, luckily the cancer had not spread and I was still was eligible for a new liver.  On October 11 I received the call they had a liver for me.  They examined my liver and found out that no cancer has spread to my liver  so that was good.   It has been 8 weeks and I am hoping that this is all behind me.  It has been a tough year but I know I am blessed.

Funny thing is, while in MN my step-mother ran into another lady who was diagnosed with CC five years ago, she wasn’t eligible for a liver transplant and had to go through Chemo and other treatments instead.  It worked and she goes back to Mayo every year for Chemo.  She has been Cancer free for 5 years.  It goes to show there are stories of hope out there.  From the Doctors reactions sometimes you don’t realize that.

 

The important thing is find a Doctor who has experience in Bile Duct cancer, getting the right things done is important but making sure the wrong things aren’t done is just as important.   The Doctors and MSK (Dr. Michael D’Angelica, Dr. Eileen O’Reilly, Jason A. Castellanos (now at Fox Chase) and the Doctors at Mayo (Dr. Gores, Dr. Rosen, Dr. Heimbach) and all the doctors and staff at those hospital were great.  I recommend them so much.    God bless.

 

 

• This topic was modified 3 years, 11 months ago by Richardw.
• This topic was modified 3 years, 11 months ago by Richardw.
• This topic was modified 3 years, 11 months ago by Richardw.
• This topic was modified 3 years, 11 months ago by Richardw.

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