Re: Clean so far (sort of ...)

Jim,  Great news on the clear scans! Whew! Yes, you and Janis enjoy your celebration. You both deserve it!
Jim and Lainy, Hope you get your thyroid problems under control ASAP!  Seems to be a common problem these days and as Jim said generally easy to control but not fun while you are trying to figure out what's happening!
Hugs. Nancy

Loving my husband from afar.

Re: Clean so far (sort of ...)

Jim-so excited for you!! Hope you and Janis "Dance like no one is watching"!!
Lots of prayers-Cathy

Re: Clean so far (sort of ...)

Jim,  Sounds like you have the right attitude and the right surgeon.  I look forward to hearing good news from you soon.
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Clean so far (sort of ...)

Jim...how great is that?  You had a clean report and you were able to connect with Kim in person.  It is a great feeling when meeting someone we know solely by contact via this discussion board.  I am happy for both of you.
I have to ask this: will your hair grow back?
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Clean so far (sort of ...)

Hi Jim,

Great news on the scan results and thanks for sharing that with us all. And I hope that your doctors manage to get to the bottom of your thyroid issues and can do something about that as well. Looking forward to hearing more good news from you.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

56 (edited by Jim Wilde Fri, 19 Aug 2011 06:01:00)

Re: Clean so far (sort of ...)

Marion, the hair deal is only small amounts at a time, so there's no appearance effects ... just a nuisance.  And yes, it was great to finally meet dear Kim, even if if had to be at the hospital.  We're working on a lunch in Philly soon, which will be a more fun setting.

Gavin, we'll see if it's definitely the thyroid mischief at work.  If the blood test comes back positive, there apparently are other blood tests and Dr. Siegel said I would get a PET of the thyroid area next in that case also.  The docs at Presbyterian are unbelievably thorough.  I mentioned to Dr. Siegel that I had a soreness deal on one of my ribs and she immediately had a radiologist reexamine the CT's to make sure nothing was going on there.  Turns out it's likely a bone bruise of unknown origin.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Clean so far (sort of ...)

Jim....Wonderful news many clear scans in your future!! I also had some thyroid issues during chemo...on my CT it showed a fairly large nodule..my surgeon and onc thought nothing of it but, my PCP who I worked for 8 years was adamant about a biopsy....thanking God everyday the biopsy was negative....hoping that your issure is soon resolved...Celebrate your great news!

Re: Clean so far (sort of ...)

Jim...I will be in Philadelphia for a meeting with the GI Steering Committe and that meeting happens to be in Philadelphia.   Is there a chance for us to meet?  Would Kim be able to join us?
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Clean so far (sort of ...)

Thanks for that Jim. From what you say, it sounds like your doctors at Presbyterian are very thorough indeed and that is great to hear. It seems like you are in great hands there. Hope that the bruise and the soreness on your rib clears up very soon.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Clean so far (sort of ...)

Well, now I'm really puzzled.  Thyroid test came back normal, as did everything else, but CA 19-9, which came down from 133 to 73.  Something's going on, just not clear what.  Talk to the doctor Monday.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Clean so far (sort of ...)

Jim..We have had pancreatitis associated with rising CA 19-9, a not so uncommon occurrence with resections.  Can't wait to hear what the doctor has to say.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

62 (edited by Jim Wilde Fri, 21 Oct 2011 12:36:57)

Re: Clean so far (sort of ...)

Pancreatitis has been ruled out.  10/12/11 PET/CT scan head to mid thigh showed no lesions at all.  CA 19-9 from 10/12 also is now 59, so that is moving in the right direction.   Bili numbers still slightly elevated but appear stable for the time being.   We will probably go back to quarterly scans and monthly blood tests.  Still some mystery, but may take just careful monitoring for the next six to 12 months.  I was hoping to start a new thread, i.e. Part 2, but I think I'll wait for the current smoke to clear.  At least there doesn't seem to be anything immediately ominous, which I guess is very good.

On a lighter note, my dear onc, Abby Siegel recently adopted a little child, which has been no problem at all for her.  My cardiologist, Sun Hi Lee also adopted a little girl, Adela almost 2 years ago.  Adela is going through the 'terrible twos' and has been a real challenge.  I suggested to Abby that maybe Dr Lee had gotten in the wrong adoption line (i.e. returns).  When I saw Dr. Lee the next day, I told what we had concluded, and she had an aha moment and a really good laugh!  Life is too short to miss these opportunities!

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

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Ah, Jim, so glad to hear the Stable news! I will find out mine Monday. That made me very happy for you. By the way, the terrible two's are not so bad, try living in adult community with the terrible 70's!!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Clean so far (sort of ...)

Jim....can't wait for part two, but gladly hang in there with you in part one for some time longer.
Terrible two's come as a real surprise to us super parents, but it is the terrible teens that really wipe us out.  Seems to come all together in adulthood though. 
And, now Lainy is throwing the terrible 70th in to the mix.  Not sure I am ready for that quite yet.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

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Marion, I added my daughter's advise (she has a six year old, plus a 17 and a 19) to Dr Lee.  My daughter said little kids are really easy, compared to teenagers ... their issues are way bigger and harder to handle.  She (Dr Lee) muttered something about being too old for this (she's just 50) ...

I think I may have sent poor Dr Lee into terminal depression!

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Clean so far (sort of ...)

H,Jim,
Good luck and God bless .

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

67 (edited by Jim Wilde Sun, 16 Oct 2011 08:22:36)

Re: Clean so far (sort of ...)

Percy, thanks for the good thoughts ... I see we both signed up on this site the very same day.  For me, it was way after my resection 4/09.  The very best to you as well.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

68 (edited by PCL1029 Sun, 16 Oct 2011 08:52:09)

Re: Clean so far (sort of ...)

Hi,Jim,
My first resection was done 6/09.
My second one was done on 6/11.
Even I THINK I know what to do with this disease; I actually don't.
I learn,I ask, I think with all those info.that we find,NONE is preventive(that is how to avoid the recurrence after we aware of our disease);so as a patient like you and me, in reality, CC is a waiting game more than current medical knowledge know how can provide cure or meaningful extension of our lives back to normal. We hope ,we cross our fingers,we pray instead.
Then again, as the bible said---suffering produces perseverance,perseverance produces hope and hope---.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Clean so far (sort of ...)

Jim who were your doctors at NY Presb? I am trying to see Dr. Kato for a second opinion regarding surgery and Dr. Siegal for her second opinion as well. My grandmother was diagnosed last month, and life just hasn't been the same.

Thank you,

Elsy

In loving memory of my beloved and cherished grandmother who fought until the very end. Loving you forever abuelita...

70 (edited by Jim Wilde Thu, 17 Nov 2011 10:38:01)

Re: Clean so far (sort of ...)

Dr. Kato is the one you really should see first.  His secretary Delia is who you will need to contact.  He will give you an honest opinion as to whether surgery is an option.  Dr. Kato was my surgeon, and 2 1/2 years later I stay in touch with him.  I've had elevated CA 19-9 marker tests since early August and I'm on a reduced time monitoring program.  So far, so good.  It would be hard to find a better surgeon than Dr. Kato, in my opinion.  If you'd like to discuss this in more detail, I can email you my cell number.

Elsy, I completely understand how your life has been upended.  I hope you can find a good protocol.  Keep in mind surgery is a very good thing indeed.  Good luck!

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

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Jim...We will keep you in our prayers!  Sending good thoughts your way...

Stay optimistic!  Stay strong!  We are optimistic, as well...and look forward to the great news when you are able to share it.

Re: Clean so far (sort of ...)

Patti , thanks for your kind thoughts.  I'm thinking now of starting a Part Two of this thread at the end of this year, with the same title!

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm