My history
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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..22.98..dJzj698IB3Tgwn6E790ZoOZENI0TGdWj.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
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
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
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.
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/1573222224/102-1551144-1868104?ie=UTF8I 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=UTF8I 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.
-PeterHi 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 AnneThanks 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!
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.
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.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.
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.
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.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,
ManeeshCongratulations 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!
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