1 (edited by Peter Tue, 01 Aug 2006 13:43:50)

Topic: My history

My BDC, cholangiocarcinoma, took about 4 months to diagnosis once I knew there was a problem.  I made the rounds thinking I had hepatitis or Lyme disease and got an eventual diagnosis of a Klatskins tumor, ERCP, stents, and finally surgery on August 29, 2003.  Klatskins are rare and difficult, difficult to diagnosis and difficult to treat.   Current Chemo and Radiation technology do not have much success against them.   I was extremely fortunate to be put in contact with Dr Roger Jenkins at Lahey Clinic outside of Boston ((781) 744-2500).  He, and his team, resected about half my liver, my common bile duct, gallbladder, a portion of my portal vein where the tumor had spread, and a few lymph nodes.  Very major surgery taking over 10 hours.  He connected a few small bile ducts directly to my intestine. The margins came back clean and I am now a little over 29 months from surgery and doing well. First few days after surgery are a blur, or perhaps I have blocked them out.  I know they had me sit on the edge of the bed and stand on, I think, the second day in my room.  By the third or fourth day I was slowly (very slowly) walking the hall and I worked hard at doing this a few times each day.  My time and distance walking increased every day.  I went home after 1 week.  The 2 hour drive to our home in Vermont was rough but wonderful when we got there.  I continued walking everyday, had home health nurses visiting to help with care (I still had external drains in) and of course follow-up visits at Lahey.  I was back at work 1/2 time at about 6 weeks and full time a few weeks later. 
I never had chemo or radiation.
I was 56 at the time of my surgery and in reasonable fitness.  I try now to eat well, drink lots of water, Essiac tea and green tea.  I work with a Chinese Medicine provider as well as my regular Docs, practice Qi Gong and yoga, walk, bike, and hope to XC ski if it would ever snow instead of rain here.
I now have occasional bouts of Cholangitis, an infection of the tiny bile tubes I have sewn into my intestine, which is common for the few of us with this disease.   
Overall I am incredibly fortunate and able live an engaged and active life.  I am well aware of the odds and count each day a blessing.

(7/14/06 - adding lower case singular spelling of 'klatskin' so it will show up in the search engine.  )

8/1/06  I have had a miraculous run of almost 3 years following my successful Klatskin

Re: My history

peter,

your story is inspiring, you did very well to be discharged from hospital after just one week! - my dad has had a similar op and has been told that he won't need chemo, initially you think - can this be right? (as many people seem to have chemo post op) it is great to hear that you are doing so well.

Jules

Re: My history

Congratulations to you! WE love a success story.  My husband, 73, had a Whipple August 2005. He is now doing wonderfully. Had hiccups for  5 months but after his T Tube and another tube were removed last Thursday the hiccups have stopped! We are on our way and now will just do surveillance with an oncologist. We were told that chemo and radiation just does not help this kind of cancer. It must be removed. It was and he had a  resection.  HE had a longer than usual recovery as he had 2 ecoli infections between 2 surgeries! But all turned out well and he may go back to work part time in another week.
We too feel very blessed and love hearing these kind of stories. There is hope!

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: My history

Jules,  I too was advised that chemo and radiation have little effect on this cancer.  I have read however of many experiences where patients are able to shrink tumors, sometimes to the point of enabling surgery that had not been possible earlier.  Also patients have extended their lives with chemo, but sadly always at the cost of the effects of chemo. 
I view it as a very personal decision with no right or wrong path.
-Peter

Re: My history

Congratulations on your progress. I was out of the hospital in 6 days, after the required one mile walk in the hospital. While I was in the hosp., my mom was at home on hospice care, suffering from leukemia.  She was my inspiration to get up and moving. I thank God that she waited for me to come home before she passed.I was blessed so many times through this ordeal. I know the odds, but I live each day like I never have before!  Keep up the progress, and perhaps we can prove that there really IS hope!

Re: My history

Peter,

I am so sorry that the cancer returned.  I hope you and your family are dealing with this problem ok.  I would like to thank you for posting a reply about my mom's diagnosis of Klatskin's tumor. 

Thanks,
Maneesh

Re: My history

Peter. So sorry the cancer has returned. Your story is so similar to my Mums somehow. It is good to know you had 3 years free of it all. I hope the same will go for my Mother who has also not had any chemo/radiation.
Please keep us all posted on what is going on for you.
Best wishes to you, I hope you are doing OK.

Re: My history

An update copied from email to my friends and family.
-Peter
-----------------------------
I have had 3 primary tests over the last 2 weeks.
New blood work, a draw of the ascities (fluid) in my abdomen, and a 700 image/2 hour MRI of my liver and abdomen.
The blood work continues to show elevated (but not off the charts) liver distress, an increasingly rapid rise in a tumor marker (CA19-9),
and a new tumor marker (CA125) also elevated.   The Ascities was
negative showing no tumor cells and the MRI also did not show any specific tumors or identifiable cancer.

If you're now confused, join the club!  Amy and I met with Dr. Stuart, a Boston oncologist with BDC experience, and looked over his shoulder as he explained what he saw in the MRI.  His advice was:
- There is no identifiable cancer where we're looking right now and therefore nothing for oncology to treat.
- Possibilities for my symptoms may include cancer that is microscopic or not showing up,  liver disease which can sometimes result from the kind of extreme surgery I had,  maybe an infection.
- Repeat all the tests in 2 to 3 months and look again.

There is some disagreement among the Doctors who are helping me about what the results, and my symptoms,  may mean.  I'm still waiting for the 'official' radiologist report on the MRI and will likely have that scan read by a second radiologist, perhaps in Boston.

Quite an emotional roller coaster ride so far.   My thoughts this
morning...........
I'll just 'be' with he confusion and questions, this where I am right
now.   At the same time we'll continue to look for what's going on.
Perhaps talk to my GI doc again.
Focus even more on diet, TCM and perhaps some supplements aimed at liver health.
Exercise and look into getting this foolish hernia repaired before all that great powder I'm expecting this winter arrives.

Always remember the Chinese symbol for Crisis is the combination of characters for danger and opportunity.

Re: My history

A cautious sigh of relief for you Peter. Did they explain what was seen on your CT scan back in July?  Dawn and I will continue to pray for you well being.  She had CT and PET scans yesterday. Waiting for the results is always an extremely anxious time. She continues to feel well although a nagging abdominal pain persists when she takes a quick breath. I have noticed that her appetite is not at the same level that is was just a few months ago, which is causing some concern.

Re: My history

Thankyou Evan.   One complexity seems to be radiologist with no CC experience, nor understanding of my very unique plumbing after surgery, reading scans with often different interpretations then the Doctors who are familiar with BDC.  Essentially this new information refutes the read other radiologists had on my earlier scans.  The Docs with BDC experience don't see cancer on those scans either.
My best to you and Dawn.  I understand about her appetite, I feel the same way probably from the ascities.
A note to all of us that CA125 may be a helpful marker for either abdominal mets or liver disease.   This protein can apparently result from either of the above or just from Ascities whatever it's cause even though it is most often considered for cervical cancer.

Re: My history

Peter, my heart goes out to you with your symptoms, the confusion and the new roller coaster ride.  I hope that what you are experiencing is indeed not due to a recurrence of the cancer.  I was especially interested in your story because I live south of Boston, and Dr. Stuart has been my oncologist since my diagnosis of gallbladder cancer 4 months ago.  Although my cancer and surgery are different from yours, and I do understand you are now dealing with new compllications, I am heartened by your story and the length of time since diagnosis and surgery for you.  For a long time, it seemed that everything I could find (which wasn't much) was extremely gloomy and sad.  I'm doing well, and my cancer does not seem to be progressing at this point, and I'm grateful for that, but this is such a difficult disease.  So, thanks for sharing your story.

Re: My history

Thanks for the update Peter. You sound quite philosophical about it all. I wish you calmness and peace of mind. Continuing to nurture yourself sounds like the best and wisest, and perhaps only option at this point! Best of luck to you!

Re: My history

Hi peter,
Thanks for your post.  My husband Joe has intrahepatic cc diagnosed two months ago but probably going on for over a year.   He has mets to live and lungs.  We have been using a strictly vegan diet  called the Halleluia diet(I can't spell it) but the website is h.acres.com.  Is that similar to the diet you are on?  I can't find anyone who has tried diet control and the M.D.'s all  dismiss it as having nothing to do with helping.  We strongly believe that we have eliminated sugar ,animal fats and dairy for sure and that we hopefully are starving the tumors.  Anyone else tried diet of any kind?  when you are diagnosed people offer all sorts of helps and some are kind of strange.  We know they are trying to help. Joe is going to start drinking a juice called mangostein today.  It seems routine medicine doesn't have a lot to offer if they cant resect the tumor.  We will pray for you  Peter and keep posting so we know what is going on.  Mary Anne

Re: My history

Mary Anne,
I do believe diet is a key to our health and well being.  It's most effective in staying healthy of course but at the very least I believe it can be beneficial when used in concert with other therapies.  One very simple example to understand is that a diet that aids our liver can help the liver in the work it must do to filter other toxins (like Chemo) from our bodies.
I'm going to list two books I've found especially helpful and will put in the Amazon links so anyone interested can check the comments and reviews.   This is not an endorsement of Amazon, it's just easy.

The first "How to Prevent and Treat Cancer with Natural Medicine" has a lot of good information on using diet while taking Chemo as well as some supplements that can be used with Chemo.
http://www.amazon.com/gp/product/157322 … 04?ie=UTF8

I also use "Healing with Whole Foods; Asian Tradition and Modern Nutrition" by: Paul Pitchford.
ttp://www.amazon.com/gp/product/1556434308/102-1551144-1868104?ie=UTF8

I also see, and work with, a TCM (Traditional Chinese Medicine) practitioner.  Great guy and human being who I also talk with about diet as well as other things.  One thing I respect about TCM is that it doesn't make the exorbitant claims of success that some of the herbs, remedies and centers (mexico comes to mind) make these days.  TCM has just quietly worked with people for thousands of years.  Not always with a cure but also without inflated claims.   Something I've always remembered that this man told me early on in my cancer was "If the cancer is going 100mph and the natural remedies may be able to help at 20 mph you need to do the things that may work to slow the cancer down so diet, TCM,  or whatever have a chance of helping you."
My 2 cents.
-Peter

Re: My history

Time for an update.  Pasted in below is a copy of message I sent to famiy and friends this week.
Courage all  - Peter
------------------------------
My scans and appointments at the Lahey clinic yesterday, Dec 5th, got off to a bumpy start when I had a bout with Cholangitis  (big word for an infection in the bile duct) on Monday night.  Chills and fever kept Amy and I up much of the night but I was stable although a bit tired for the CAT scan early the next morning.   The infamous Murphy Law esq came along to help with the tests as well and we were delayed for 2 hours by bureaucratic screw ups.  This made us late for the remaining appointments with Dr Jenkins (surgeon) and Dr  Stuart (oncologist) but at the end of the day good folks prevailed and we got all the time we needed with everyone after the results were in.

Simply put my cancer is progressing.  While the clinical evidence of recurrence has been pretty clear since July the scans have now evolved to show small but identifiable tumors especially in my abdomin.   The other key risk factor is mass at the surgical sites of my portal vein and bile tube.  This can never be clearly defined by scans but is almost certainly a combination of scarring and cancerous growth.  Not great news but frankly not a surprise.  Even with our pretty extensive understanding of what can be known of this rare cancer, and where I am in the process,  it still has a bit of the effect of a cast iron frying pan whack in the face.

So what does this all mean right now.  Well guess what,  a bit more confusion but there are things we must now consider.

Re: My history

Peter, lots of love to you, I don't know what else to say!

Re: My history

Peter,

You are fantastic!  Keep at it.  I hope you will be able to go to Germany.  Someone has got to give it a try.

Stacie

Re: My history

Thanks Stacy.
I've written to Dr Gorter asking direct questions including the name of a patient he has worked with that I can contact but so far no reply.  I'll likely need to try to get him by phone.
Did you notice that Jeannine Walston, the young woman with the brain tumor whose blog documents her DC treatment, did not experience a reduction in the size of her tumor?  Interestingly she went into the treatment with stable disease and it remains stable, hopefully with a strengthened immune system.

-Peter

Re: My history

Peter

If you are considering going to Germany for DC treatment I suggest that you also consider the clinic in Duderstadt (close to Goettingen) which is run by Dr Nesselhut:

http://immuntherapie.org/cms/98/?i=1.10 … I0TGdWj.de

I'm not suggesting that it's better or worse than Dr Gorter's clinic in Cologne but it's another option.  By the way I recently embarked upon a course of DC treatment under Dr Nesselhut (I live in UK so flights to Germany are relatively short).

Geoff

Re: My history

Geoff

I was very interestedto read that you are going to Germany to try DC therapy . Jon's brother-in -laws brother is a GP in Germany and he had mentioned something about that ,( he has a friend who is a liver specialist in Hamburg) when we asked him for advice , unfortunately we were not in a position to have treatment in Germany.

I wish you really good luck and will follow your progress on the site with great interest.

Regards
Alison

Re: My history

Geoff,
I know a lot of us will be very interested in any details of your DC experience you can share and of course your results when the time comes.

Does Dr Nesselhut have any experience/results with other Cholangio patients?  Does he combine the DC with other treatments like herbs (mistletoe) or hypothermia?

Good luck and all the best results with your treatment.

-Peter

Re: My history

Yes I'll report on this site when I have something worthwhile to say, at the moment it's very early days in my treatment.  All I can say for the moment is that I had no side-effects other than fever in the evening after vaccination.

I have met a few other patients also staying at the nearby hotel, mainly from the US, but none with CC or related cancers.  Dr Nesselhut does offer hypothermia.  I don't know about Mistletoe, I got the impression that he is not convinced about its value.  He also offers chemo for some patients but not in my case.

I want to stress that I am not recommending either DC therapy nor Dr Nesselhut's clinic, this is really a research type of approach and everyone needs to weigh up the pros and cons for themselves.  I'm willing to give it a try because the approach seems logical to me, and in any case I don't seem to have many options to choose from.  My oncologist in the UK is totally unconvinced.

Geoff

23 (edited by marions Sat, 16 Dec 2006 14:57:03)

Re: My history

Geoff,

I don't pretend to understand all the details of DC therapy, but obvisously they have substantial experience - both basic research and clinical - with dendritic cell therapy.  Basically, in my opinion, this therapy is another long shot at treating a difficult cancer, and it's similar to other chemotherapy long shots which have been tried, some successfully and some with ultimately disappointing results.

In view of the very limited other chemotherapy options, I  see more benefit then harm in trying this approach, except for the logistical issues of travel, expenses, etc.

You have done great  holding your cancer at bay which may or may not be attributed to the strict diet you are adhering to, so it seems logical to approach this cancer with therapies least harmful, and the possiblity of proving to be highly beneficial to you.

Dendritic Cell Therapy has shown some very positive results.

Thinking of you and wishing you the very 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: My history

Geoff,

I'm very excited to hear the results of your DC therapy.  Dr. Nesselhut's was one of the clinics we did a lot of research on.  There is something else you may want to look into as well while you are having treatments there.  It is called Oncothermia, the website is www.oncotherm.com - this is another item that Pinnacle care suggests.

Please keep us updated Geoff.  What is the time frame for knowing how things are going?

Stacie

Re: My history

Another update copied from a mail message to my family and friends.
Geoff,  I saw on another thread that you have completed 3 DC treatments and, I think, have a scan in Feb.  We're all praying for you and for news of break thrus in these new technologies which will hopefully become available here.

-----------------------------
I'm about to embark on the next step in this journey with cancer and
it seems a good time for an update.

The disease is progressing.  I am  more aware of changes in my body,
the most obvious of which is increased bloating which is called
ascities.   I remain very fortunate that I am not in pain and most
days my energy level is pretty good although I  usually don't sustain
that for a full days activity.  Fortunately I was never much of a
'work all day and dance all night'  kind of guy so the extra naps fit
in pretty well.   I am walking a couple of miles most days before work
and I skied (dust on crust is the closest we get to skiing in VT this
year) over the weekend.

I will be in Colorado next week visiting my daughter (Carolyn,  I'll wave in your direction)  and will be starting chemotherapy the first week in February when I return.  In conjunction
with the chemo I'll also be talking some off label drugs that are
available in this country but are not normally used against cancer as
well as some pharmaceutical grade mushroom extracts that must be
imported from Japan and require special compassionate use approval
from our government.   We're being helped in this are by Dr Chang  in
NY city who combines 3 areas I am interested in.  Dr Chang was trained
as a Doctor in China, came to the US for  a medical degree from Brown
and has worked at places like Sloan Kettering and the National Cancer
Institute.   He also has connections with the immunotherapy  work
being done in Germany that I feel holds promise.

This all gives us renewed hope that I'll be one of the lucky ones
where the bulk of the cancer is reduced by the therapies and I gain
extra time for miracles to happen or new treatments to emerge.