1 (edited by Jim Wilde Thu, 12 Jan 2012 13:59:27)

Topic: Part 2: Clean so far (sort of ...)

I'm going to continue being an optimist and post here.  Quick recap:
1)  Had a successful resection 4/2009
2)  Clean scans and blood results until August 2011
3)  I've had two PET/CT scans, one mid August and one mid October 2011, both clean (both were head through mid thigh).
4)  Blood work through August were perfectly normal until 8/1.

This is a summary of blood results through a few days ago:

Date      CA 19-9 Value    Hospital Lab
6/11/09           17    AGH
7/1/2009           13     AGH
7/9/2009           10    AGH
7/23/2009     7    AGH
7/30/2009    12    AGH
8/6/2009            29    AGH
8/14/2009    24    AGH
8/27/2009    16    AGH
9/3/2009            13    AGH
9/17/2009    82    AGH
9/23/2009    28    CPMC
10/29/2009    24    AGH
12/3/2009    13    AGH
3/13/2010    13    CPMC
2/11/2011    19    CPMC
8/1/2011            88    AGH
8/5/2011          133    AGH
8/17/2011    73    CPMC
9/22/2011    102    AGH
10/12/2011    59    CPMC
11/11/2011    102    AGH
12/9/2011    86    AGH
1/9/2012           156    AGH

Date            Bili Direct    Bili Total    Hospital Lab
3/18/2011    0.29    1.00   
8/1/2011            0.31    1.40            AGH
9/22/2011    0.41    1.60     AGH
10/12/2011    0.20    1.60            CPMC
11/11/2011       -    1.50            AGH
12/9/2011    0.42    1.40            AGH
1/9/2012              -    1.40            AGH

AGH=Atlantic General Hospital, Berlin, MD
CPMC=NY Presbyterian Hospital, NY, NY

All bili numbers prior to 3/2011 were normal and there have been no notable symptoms evidenced.  I feel well and everyone says I look great, but I'm concerned about the CA 19-9 results and wondering if anyone else in the cc community has seen this.  My doctors at NY Presbyterian are at a loss to explain the cause, and short term have opted for increased scrutiny (monthly blood tests and PET/CT scans every four months).

After two years of normal, normal and normal, this is worrisome at best!  I was hoping (and still am) to celebrate three years clean in just a few short months.

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: Part 2: Clean so far (sort of ...)

Jim, your doctors are doing exactly what Teddy's did for him. He also had CA19 increasing but everything else was normal. More scrutiny is all they can do if nothing else is showing up. I know its more anxiety but you are in great hands and I hate to see you spend the energy worrying when they see nothing to worry about, yet. I am sure you are going to make your milestone of 3 years and please try taking it day by day, I know, I know, easier said than done. I will keep sending good vibes and wishes your way!

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: Part 2: Clean so far (sort of ...)

Lainy, I don't like doing nothing, when something is clearly going on.  I think my visit with the onc next month will include a question about the wisdom of doing chemo again.

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: Part 2: Clean so far (sort of ...)

Hi Jim,

Lauren's CA-19-9 went up every month. Now it is going down. I was quite concerned because people on this site seem to freak out about them so much. I asked the PA that works with Lauren's oncologist about this and she said it is just one of the tools they use along with scans and other tests. It causes them to be aware but really as long as scans are looking good and the patient is feeling well they don't worry. So I am not going to anymore either!!
Take care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

5 (edited by PCL1029 Thu, 12 Jan 2012 18:13:14)

Re: Part 2: Clean so far (sort of ...)

Hi,Jim,
Can you quote the"impression statement" from the two PET/CT scans that you said are cleans.You can email me thru this web site if you want to to protect your privacy if you want.
The CA19-9 values cannot be compared between different hospital or labs due to different methods or machines used. At the most you can compare ca19-9 from AGH or CPMC in itself only.
Ca19-9 above 129 is of concern especially if is intrahepatic CCA.unless you were very stressful during those tested dates(eg. Infection,or fever or emotional related stress.)
I will try to get the PET/CT IN 2 or 3 month instead of four.
Low dose of Xeloda by mouth and do nothing but scan every three month was suggested to me after 14 month gemzae but I opted for nothing instead to see how my liver response,six month later my CCA recur with  2.1x2cm tumor and had a second resection later. So if you want preventive chemo,Xeloda may be your question to the oncologist next time.
As patients of CCA;The odds are high for recurrence (>65%); so be always prepare for options even you are feeling good now and I think when we think we feel health enough,this is the time that we will have enough  energy to help ourself to do research or go for second opinions. This is my current approach for handling my CCA because I think even I will do all my best, the hope of finding a good quality of life with current available treatment is no picnic.
Other people may think differently and for that I think they are not wrong either.
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: Part 2: Clean so far (sort of ...)

Jim....We know that the occurrence or recurrence has to be substantiated via
symptoms, lab, scan, open or exploratory surgery either, on it’s own or in combination thereof.
We also know that CA 19-9 on its own does not carry any value as it can rise due to numerous reasons.  With you however, it is different in that those values became a concern of your physician and ultimately led to the diagnoses of this disease.

We also know that due to the microscopic cell structure this cancer can be evasive to screening (CT, MRI. etc.)  until formation of detectable nodules. 

Question:  would open surgery (which carries numerous risks including, angering the cancer) be able to detect an occurrence.
Chemotherapy:  would an oncologist consider chemotherapy at this point? What field of radiation?
Radiation:  due to non visual nodules unlikely to be offered.

Waiting out to see a possible downward trend would be my choice at this time.

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: Part 2: Clean so far (sort of ...)

Jim Wilde wrote:

I think my visit with the onc next month will include a question about the wisdom of doing chemo again.

Jim,

I'm curious to hear what your oncologists has to say about your idea.

I often wonder why doctors don't use "maintenance chemo" to manage CC patients in remission.  Say, two cycles on an annual basis as a preventive measure. Was there a clinical trial that ruled out preventive chemo for some reason? Such as... a concern that cancer cells might become chemo-resistant too soon? Is it a cost issue, i.e. insurance companies not willing to pay?

Good luck, and please do let us know.

Best wishes,
Eli

8 (edited by Jim Wilde Sun, 15 Jan 2012 11:37:36)

Re: Part 2: Clean so far (sort of ...)

Eli, my dear wife reminded me about the quality of life during chemo, so I think we'll approach this with some caution.  I'll let everyone know after I see my onc mid-February.

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

9 (edited by marions Sun, 15 Jan 2012 23:05:48)

Re: Part 2: Clean so far (sort of ...)

eli......I would assume that physicians are hesitant for patients to undergo chemotherapy when in fact they are not sure as to whether it proves to be helpful.  With such varied responses to the current available, treatments - how do we know as to which one will kill off existing cancer cells?  These studies need to be conducted and evaluated.  (Some clinical trials are underway.)
We have noticed an increase in post-resection chemotherapy however; do we really know the benefits of such treatments?
All my best,
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: Part 2: Clean so far (sort of ...)

Jim,
First, kudos for approaching three years. For that you are hearby awarded three "atta boys"! Now as far as the rise of the CA19... well, here's my approach. I have been having various symptoms including fluctuating CA19 numbers for much of the last 5-6 years. Even currently after 15 years I have occasional symptoms indicative of recurrence. The various tests show nothing. The docs have no answers. So... I refuse to allow this evil disease to live rent free in my heart or mind. My best revenge against it is to live well each day. "This is the day the Lord hath made. I will rejoice and be glad in it"! May God grant you peace...

bob

Re: Part 2: Clean so far (sort of ...)

Bob, your guidance is invaluable, since you have walked the walk.  Thanks for your input.  I am slowly learning to live with this monster, and I too, will not let it take over my being.  I accept the atta boys, and think you likely deserve way more.  I have learned to hate cancer of all sorts, but most specially cc!  I guess I need to put the most weight on the PET/CT scans, and just keep chugging along.

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: Part 2: Clean so far (sort of ...)

Hello Everone,
I am so glad many of you are doing well with your treatments. Johanna

Re: Part 2: Clean so far (sort of ...)

Hello -right now I am living in a state of confusion. I had a CT scan in late December and an MRI last week at Johns Hopkins. Hopkins told me my tumor was stable, I had chemo radation since March. The CTscan shows  multiple new lesions in  the liver!
My numbers have been rising so I need to go on chemo again. I have not had any treatment since 3/14. I new I would go on Gem/Cis again.
I am feeling pretty good. I had a GI bleed and a paracentesis in November. My appetite is great  and I am thankful for that. The interventional radiologist and my Onc. should talk this week.
Any ideas of what questions I should ask? I have a copy of the CT scan results and will get a copy of the Hopkins results soon.
Anyone ever had this before? Please write and tell me what happened.
Thanks to all of you in advance! Fondly, Johanna

14 (edited by PCL1029 Sat, 14 Jan 2012 09:16:26)

Re: Part 2: Clean so far (sort of ...)

Hi,
May I ask where was the GI Bleed occur.Is it near the esophagus or in the colon? What are the numbers that high enough for your concern and how much?
How's your blood pressure? Any hypertension?How high is your blood sugar recently? Why had  both CATscan and MRI done within such a short period of time?
If you want to ,you can email the " impression" portion  of the  scan report,and I can take a look to see if I can be of help in decreasing your confusion? It may also be helpful if you can send along with the  last available MRI "impression" statement for more understanding of the situation.
I think you know by now I am only a patient like you and not a doctor.
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: Part 2: Clean so far (sort of ...)

Hii Johanna, while I can't help with your questions I just wanted to say how nice it was for me to see you post again. I am sorry about your 'bumps' in the road but at the same time glad you are feeling good. The best news is that the tumor is stable. We like that word! Please keep us posted and continue to feel good!

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: Part 2: Clean so far (sort of ...)

Jim:
I haven't been on this site for a few days, so missed your post until now. I am so sorry you have to go thru this worry of "what if". I pray every night that a cure can be found for this horrible disease.
I will continue to pray for you and all of us with cc. Hopefully the new studies I've been reading about will yield a possible cure soon for all of us.
Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Part 2: Clean so far (sort of ...)

I would say to not focus so much on the 'numbers' but rather how YOU are feeling.

I remember a time when Tom was in the hospital and his 'on call' doc was so worried about his Alk Phospate number.  I said "Was it 958?" and she said "yes, how did you know?"  My reply was "Because at the highest it was 1958, and 958 is VERY good for him.  He does have Cholangiocarcinoma and his Alk Phosphate may never be 'normal' but 958 is the lowest it's been in 3 years, so that is GOOD!"  She walked away....muttering that she was going to check into his history!

Tom's CA-19-9 markers were all over the place.  There are many things that can cause them to go up.  An infection anywhere in the body.  A recent surgery such as a tube exchange.  Low red blood cells, etc.  And with Cancer, we know that the CA-19-9 is going to be higher than for someone without cancer.

So again, my advice is to not worry about the numbers, let the doc's figure it out.  I know that Tom too worried about what his numbers were and then I'd compare them to previous results and show him that many numbers were improved over the last results and how all the numbers were up/down just like a roller coaster!

Go with God, and prayers are coming your way from Wisconisn and also Tom is sending prayers from Heaven!

Hugs,
Margaret

Re: Part 2: Clean so far (sort of ...)

Johanna....it is nice to hear from you again.  Do you know what caused the bleeding, ulcer, varices? 
The paracentesis was in November.  Are you experiencing any abdominal swelling presently?
Is your weight stable?
Good luck with the visit and please, keep us posted.  We love hearing from you.
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

19 (edited by Jim Wilde Sun, 15 Jan 2012 09:37:06)

Re: Part 2: Clean so far (sort of ...)

Kris, I'm with you on the cure deal!

Margaret, I think I just have to be more patient.  I worked years in a world driven by numbers, and just find it unnerving when they don't mean much.  This cancer just makes us more than a little paranoid!

Thanks again for all the thoughtful responses.

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

20 (edited by Jim Wilde Thu, 16 Feb 2012 12:07:27)

Re: Part 2: Clean so far (sort of ...)

This has been a medically busy week.  Tuesday AM PET/CT at NY Presbyterian, then noon appointment with Dr. Josh Sonett, the lung surgeon who did a tricky left lung procedure last spring.  He talked with radiology, who didn't see anything seriously illuminated on the PET/CT. This was a routine followup.  Wed am appointment with Dr Abby Siegel, onc.  The formal radiology report was now up and she's a VERY careful reader.  She saw something about a very small right lung mass that had grown from 4mm in 10/2011 to 9mm now.  She got Dr,. Sonett on the phone right away to discuss this new finding.  Bottom line, get another scan, a CT done stat the same day.  I went back to Dr. Sonett's office to see whether we should go back to MD or stay in NJ.  He very quickly decided that it was to be surgery for me (March 7) and I completed almost all the pre-admission testing yesterday.  All I can say for this huge hospital (29,000 employees, 6000 of them doctors) is they can really cut through the bureaucratic BS when there's a need, and knowing where I live, they do handstands to avoid me making any unnecessary trips there.  I love the care they've given me and they never cease to amaze me with their responsiveness.  A truly wonderful hospital.

We're still pursuing the elevated CA 19-9 and bili numbers, and a new blood test was ordered.  Apparently, inflammation in the pancreas without cancer can also cause elevated numbers and slight pain/discomfort in the right kidney region.  The scans both show no evidence of cc returning at this point, which is always great news.

My hope is this is an adeno carcinoma, unrelated to cc, and a new primary, but only a final path report in March will tell what the deal is.  CC is not all bad.  Had it not been for cc, the lung tumor removed from the left lung last year and this new one in the right lung would not have been discovered until much later, since there were zero symptoms with either, and wouldn't have been until I was in dire straights.  Perverse as it may seem, this all still belongs in the "Good News" section.  At least, that's how I'm reading it.

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: Part 2: Clean so far (sort of ...)

Jim, I read it the way you do and I agree your care has been above excellent!! You have to be an amazing man as apparently the Medical team loves you as much as you love them! AND as much as we love you too!

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: Part 2: Clean so far (sort of ...)

They all never cease to amaze me.  They have a huge, gaudy, red and white banner that hangs over Ft. Washington Avenue which proclaims AMAZING THINGS ARE HAPPENING HERE and it's true!

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: Part 2: Clean so far (sort of ...)

Jim:
I am so happy you have found all these doctors who you love so much and have so much faith in! I am sorry you have to go thru another bump in the roller coaster journey, but happy that you and your doctors are so certain of your next steps.
I also hope for a non-cc related mass. But I'm hoping it's benign!! Second place, I hope it's a primary... always hoping the cc hasn't spread.
Maybe if I end up in NY around the 10th or so I'll stop in and meet you and your wife! If I'm at the main hospital for S.K. it isn't far.
Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Part 2: Clean so far (sort of ...)

I'm thinking discharge 3/9 or 10, barring any problems, Kris.  For the last surgery, they kept me over a weekend, BC they didn't have a single room.  I had MRSA in 2001 following cardiac surgery, and Columbia's policy now is I can only have a single room and they can't discharge a patient from the ICU!

It would be very nice to meet you ... if we can't work it in NYC, then maybe Phila with Kim and my wife.  One way or another, we'll make it work.

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: Part 2: Clean so far (sort of ...)

Are you going to the fund raiser on Sunday? It's a little expensive for me, but I'm thinking of going. (I realize $50 isn't much, but it's my week's food charges!!)

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.