A Plea for HELP!!!
Please Help!
I learned that I have inoperable cancer of the bile duct (cholangiocarcinoma) this morning. That unknown spot on my liver I mentioned somewhere around here three or four months ago unexpectedly grew 40%, the bloodwork that looked great then sucks now, and there are about twenty tiny new spots as well. The biopsy results came in this morning.
If anyone here knows anyone involved in cancer research or treatment of any kind, I’m searching for specialists in this rare cancer (1-2 cases per 100,000 per year) or ongoing studies of experimental treatments anywhere in the United States. May not prolong my life, but just might help save someone else’s.
My email address is: rogersrw@gmail.com
Hey – I’m even trying the Norman Cousins “Laughter is the Best Medicine” regimen from here on out. In the end, it may not make a big difference, but it beats debating who is responsible for the current fiscal crisis, and it should definitely improve the odds of going out smiling!
Here’s wishing all the best to each and every one of you here. It’s been a pleasure meeting you all online or in 3D.
Thank you!
Ambiance 
Icepick said,
July 26, 2011 at 10:20 pm
When you say “inoperable”, does that mean that removal of the whole liver and a transplant is also out of the question?
chickelit said,
July 26, 2011 at 10:24 pm
Randy that is heartbreaking news. We’ve met too, in Oceanside at the cafe.
I don’t know of any resources off hand. I’d never heard of that type of cancer until you mentioned it. I’ll ask my RN wife tonight- she used to work in oncology but got out.
What you could use is more publicity to gather info. I’ll put it out there on Twitter if you like, but it’ll take a wider audience. A fellow Althousian might pick it up over there too.
In the meantime, I’m being think about you.
chickelit said,
July 26, 2011 at 10:25 pm
Sorry I garbled that last part.
Randy said,
July 26, 2011 at 10:28 pm
When you say “inoperable”, does that mean that removal of the whole liver and a transplant is also out of the question?
Apparently so, although I was told that there is no sign that the cancer has hit any other organs or the lymph nodes.
chickelit said,
July 26, 2011 at 10:32 pm
So what did they say for prognosis?
Randy said,
July 26, 2011 at 10:33 pm
Thanks, chickelit – much appreciated! As you say, publicity can only help. It was extremely tough to write this post, but as my mom said tonight, “There’s no harm in asking anyone and everyone you know!”
EDIT: Prognosis: “Get your affairs in order as soon as possible” The spread within such a short period of time was described as “aggressive,” but then I was considered down for the count due to something else 25 years ago and am still standing.
Icepick said,
July 26, 2011 at 10:43 pm
Randy, I’m looking at the cancer.gov site for clinical trials. Unfortunately there is not a search option for cholangiocarcinoma as such, but there are potentially trials for “extrahapatic bile duct cancer”, or “liver cancer,adult primary”. Especially given the rarity of this form looking at some of the other categories might be helpful. I’m doing a quick scan now, but because of the particulars it would probably be bestif you or someone close to your situation did the searches.
Randy said,
July 26, 2011 at 10:46 pm
Thanks ‘pick! I’ll check that out – the “extrahepatic bile duct cancer” is one of the terms, I think. (It was a long morning…)
Icepick said,
July 26, 2011 at 10:48 pm
Randy, I would push back with the doctors about removal and transplant options. They may not be possible but it can’t hurt to get clarification. Especially since living donors can be found who don’t have to suffer long-term ill effects*.
If there is any doubt whatsoever about diagnosis or prognosis, get other medical opinions. Perhaps push for a tumor board meeting if there is any doubt on the surgical side. DO NOT LET THE DOCTORS BULLSHIT YOU OR BRUSH YOU OFF. I say this with very recent family experience – you can’t trust anyone in the medical profession to care about this as much as you and your loved ones will care.
* Subject to the usual risks from surgery, of course.
Michael_Haz said,
July 26, 2011 at 10:48 pm
Randy,
I am so sorry to hear that news, but also admire how well you are handling it.
I’ve just gone through my own cancer battle and suggest the you check the University of Wisconsin Medical School and UW hospitals in Madison, WI. UW Hospitals/medical School is one of the top 10 cancer treatment centers in the US.
Also check Cancer Centers of America (several locations) and MD Anderson in Houston.
Looks like I’ll be okay, at least for a while, but when I got the news my MD sat me down and told me that it is a blessing to know in advance when the end is coming so that one can get one’s life in order, hug those who need to be hugged, say the right words to loved ones, etc. People who die suddenly don’t get to do that.
And remember, you’re not a statistic, you are you. Never mind the statistics.
Michael
Icepick said,
July 26, 2011 at 11:00 pm
Randy, make them give you paperwork so that you can look up the terms later. Make them explain things. Hell, make them explain EVERYTHING – if they can’t explain why a rainbow is always round they might not understand the cellular biology of a 1 in 50,000 type of cancer.
Bring along someone you can trust* to the meetings with doctors so that more than one set of ears are listening. Record the meetings if you have to. (I wish I had done that in my mother’s case. And if they won’t let you do it openly, record them clandestinely.)
Do not let them shuffle you around as though you were just a file. What they can’t do is tell you with certainty what will happen with your treatment. What they CAN do is do the administrative things they say they will do in a timely manner. If they tell you they will present your case to the tumor board on a certain date and don’t do so,consider new doctors. If they shuffle your paperwork around once, they will do it again.
And push back tomorrow on the question of whether or not removal and transplant is an option. With the cancer this aggressive, you need to determine your options now. Espcially if you CAN get a transplant, you need to find out if any matches are available amongst family friends and more generally.
Most importantly, don’t go down without taking your shots when they are available. I am kicking myself now for not getting Mom different doctors sooner. That was a shot I should have taken back when.
* I mean trust in a very specific sense. You will want someone who listens and understands things, can take notes (before or after the meeting) can independently ask questions and understand the answers. It is also best if they have a little bit of asshole in their make-up – you are now in the maw of the system, and you may have to fight it as well as the cancer at times. (Note that they need to be able to use, or not use, their assholery as needed. No sense in being a bunghole if everything is going well.)
Icepick said,
July 26, 2011 at 11:03 pm
Yes, don’t be a statistic. Also, don’t let the doctors turn you into a chart, or a list of symptoms. You are a person, and you and those close to you will recognize things the doctors won’t. Remember that they know the medicine, but you know the patient. Don’t let them bully you on that front.
Randy said,
July 26, 2011 at 11:03 pm
Thank you, ‘pick and Michael for the suggestions, encouragement and the timely reminder to not be passive about treatment.
Aside to Bruce: Did you really think I might have forgotten who you were? My liver may be going south but the mind is still reasonably sharp. ;-) (Just teasing, in case it doesn’t come across that way – you did make me LOL and I thank you for that.)
Time for an episode of either Monty Python or Black Adder….
EDIT: P.S. to ‘pick: You and my mom definitely think alike here – almost her exact words!!! Thanks again.
amba12 said,
July 26, 2011 at 11:15 pm
I wrote you this directly but I’ll put it here too, so others can benefit, and I have more info: fasting for 48 hours before chemo, the day of chemo, and 24 hours after (I will double-check the time periods, but I think that’s correct) causes normal cells to go into self-protective, low-metabolism mode and cancer cells to become even hungrier and slurp up the chemo. It makes chemo MORE potent against cancer and LESS toxic to normal cells, so the side effects (nausea, hair loss) are strikingly less. Here’s an early report. Here’s a more recent one with an interview with the researcher, whom a friend of mine is helping to fund.
Michael_Haz said,
July 26, 2011 at 11:16 pm
My wife is a very good note taker, and can when necessary push emotion aside. She went to all my appointments, took notes, then typed them up as soon as we got home. Having the notes was a great help as they eliminated a lot of opportunity for confusion about what an MD may have said.
Icepick said,
July 26, 2011 at 11:18 pm
Good to hear about your Mom – she might be theperson to bring along.
Also, I truly hope your primary physician goes about simplifying your end of it as the patient.
Best wishes and good luck. And remember that there are people who can help you find a liver for transplant.
amba12 said,
July 26, 2011 at 11:18 pm
And: there is a cholangiocarcinoma foundation.
amba12 said,
July 26, 2011 at 11:52 pm
Here is more about liver transplantation!
(go to the link for more)
amba12 said,
July 26, 2011 at 11:56 pm
“the 5-year survival rate after transplantation is 82%. These results exceed
those achieved with resection even though all the transplantation protocol patients have unresectable cholangiocarcinoma or cholangiocarcinoma arising in the setting of primary sclerosing cholangitis.”
amba12 said,
July 27, 2011 at 12:04 am
From the same link, an “integrative approach” that turned around a woman who was really sick:
reader_iam said,
July 27, 2011 at 12:38 am
{(xx)}
Beth said,
July 27, 2011 at 12:41 am
Randy, I just dropped in to say hi. I have nothing useful to offer, other than to share some time and space with you and these friends here online. You sure are in the right company for asking help with research and networking. And what a resource you have in Michael_Haz. You’re in my thoughts and prayers.
mockturtle said,
July 27, 2011 at 12:46 am
Randy, I am so sorry to hear this! I will ask my doctor friends and relatives in the Seattle area to see if they know of any specialists in that field either here or across the country. You’ll be in my prayers, too. God bless!!!!
mockturtle said,
July 27, 2011 at 12:49 am
PS: Randy, Black Adder is one of my favorites, too! :-D And do you remember Ripping Yarns?
mockturtle said,
July 27, 2011 at 12:51 am
PPS: BTW, where do you live?
Peter Hoh said,
July 27, 2011 at 1:22 am
Randy, sorry to hear this news. Will keep you in my thoughts, and will ask a relative in the business if she has any ideas about treatment.
Ruth Anne said,
July 27, 2011 at 1:29 am
Randy,
I am stunned and saddened for you. My girlfriend’s sister recently traveled to this clinic: http://www.sanoviv.com/index.html after a diagnosis of breast cancer where they recommended mastectomy, chemo and radiation. After her treatment in Mexico, she went into remission with no surgery. I know some clinics in Mexico are pure quackery, but this place used a combination of traditional cancer treatments AND alternative treatments. Three years later and she’s still cancer-free. It’s about 45 minutes south of San Diego.
Thank you for telling us. I will pray for all your intentions.
Tom Strong said,
July 27, 2011 at 6:51 am
Shit. I am sorry to hear of this turn of events. Annie and Icepick seem to have come up with a ton of good resources, but I will go ahead and ask my friend who used to work at the NEJM to see if she’s aware of anything else. Warm regards; you’ll be in my thoughts.
Randy said,
July 27, 2011 at 10:08 am
Thank you all for the good thoughts, prayers and ideas!
‘pick: that video made me laugh!
Annie: Thanks for the leads – spent some time on that site and will bring some of the ideas along when I meet the oncologist.
Reader: Thanks for the call. {{xx}} back at you.
Mockturtle: I live in the Sierra foothills east of Sacramento. I do remember Ripping Yarns! Haven’t thought of it in years. Going to see if it is available in DVD.
Ruth Anne: I’ll look into that clinic. Thanks.
Melinda said,
July 27, 2011 at 10:12 am
Randy, there is nothing more I can add here except that in 2004 my husband was diagnosed with lung cancer that had metastasized to his brain and was given months to live, had surgery, chemo and radiation anyway and lived another three years, two of them cancer-free.
You’d think Sloan-Kettering would have known more than the other guys, but they didn’t. The best resource was doing what Annie’s done, which is looking up links to other resources.
Ron said,
July 27, 2011 at 11:01 am
Randy, I have no resources with which to help you, but you have my support and concern. I wish I could do more.
George Purcell said,
July 27, 2011 at 11:32 am
Start calling doctors at M.D. Anderson in Houston.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1906
Here’s a research paper on the cancer with three authors:
http://www.uptodate.com/contents/clinical-manifestations-and-diagnosis-of-cholangiocarcinoma
Here’s a research paper with some clinical trial results and the doctors:
http://www.cancernetwork.com/display/article/10165/102238
Good luck.
Pogo said,
July 27, 2011 at 11:37 am
I sent you an e-mail about a Mayo Clinic MD who specializes in that diagnosis.
DocEpador said,
July 27, 2011 at 11:51 am
MD Anderson, Mayo Clinic are the two tops
I know the liver transplant chief at Mt Sinai NYC, but I think we’d both be happy if you went to one of the first two.
Avoid Cancer Treatment Centers of America, US Oncology and Mexico.
GO NOW!
Good Luck
Glenn said,
July 27, 2011 at 11:59 am
After being given only months to live due to a huge tumor on my liver, I had a liver transplant 5 years ago. I am completely recovered and good as new, and I’m a very active person (I even hang glide regularly). They have gotten very good at liver transplant. I also had chemo prior to the transplant in order to reduce the tumor and prevent spread. The biggest things I learned are that survival is possible, but you need to fight this battle yourself, by pushing everyone, the doctors, the hospital, the labs, the insurance. Nobody has the time to do it for you, and you are one of many. Be the squeaky wheel. Fight! There is no time to worry, or feel bad, or waste. Live hard and fight hard. No matter what happens, it’s a good way to spend the coming months. Make a challenge of it. You gotta play to win.
Patrick Ford said,
July 27, 2011 at 12:06 pm
http://www.cholangiocarcinoma.org/majorcancercenters.htm
g2-7c788d40f2894bf14b208839a1718283 said,
July 27, 2011 at 12:39 pm
Mayo Clinic. Go. http://www.mayoclinic.org/bile-duct-cancer/
Mary Beth Sancomb-Moran said,
July 27, 2011 at 12:41 pm
Sorry about the weird link above – not sure why the system did that. I live in Rochester, MN, and the Mayo Clinic is here. And works with this cancer. I would strongly encourage you to get in touch with the Mayo doctors and have them evaluate your case. They can help.
Here’s the webpage that talks about their services: http://www.mayoclinic.org/bile-duct-cancer/
PeterHohPeter Hoh said,
July 27, 2011 at 12:43 pm
Randy, I sent an email from work that has a link to a specialist at Abbott Northwestern.
Theresa McAvinney said,
July 27, 2011 at 1:18 pm
Randy, I’m a nurse friend of Karen in Vermont and have begun working with cancer victims with a formula called PROTOCEL. I encourage you to go to http://www.outsmartyourcancer.com and read/listen to the testimonials. The success rate of cures with this alternative are phenomenal. The simplicity of this treatment makes it easy to comply with. It was developed to destroy only cancer/abnormal cells and does not adversely effect normal cells. The destroyed cells are then removed by normal body processes. Conventional cancer therapies cannot offer you what Protocel can. May God be with you, and lead you to the right treatment choice based upon the Truth.
amba12 said,
July 27, 2011 at 1:27 pm
Some perspective on that, perhaps.
karen said,
July 27, 2011 at 1:34 pm
Randy– if you need me for any part of my liver– it’s yours.
That said, i told Theresa about this as soon as i saw the post– what a rotten thing this is, but it’s not definite, no freaking way. To quote Michael above: “And remember, you’re not a statistic, you are you. Never mind the statistics.” Word.
Theresa is working w/our friend that had her hip replaced and then found out she had cancer- remember? She’d been complaining about her stomach and the doc told her that she ~had to poop~ or had reflux problems when, in actuality, she had a lymph node growing to the size of a fist or better. She’s doing really well w/the protocell, gaining weight and strength- it’s a blessing in her life.
Love to you and please giive your Mom my love, too– she’s a star:0).
karen said,
July 27, 2011 at 1:42 pm
Hmmm, amba. I don’t know much about it- illegal??
Why would it work, then?
Perspective is a good thing.
Cathryn said,
July 27, 2011 at 3:42 pm
I have sent you an email about a Phase II study for just this. My husband is in the study. God Bless and keep hope. The shell shock will wear off as you take control. I promise. Please ck your email asap.
pathmv said,
July 27, 2011 at 4:52 pm
Randy, not much I can offer you other than my prayers and deepest wishes for a recovery.
If you have not read it, you should take a look at this essay by Stephen J. Gould, when he was diagnosed with cancer: The Median Isn’t the Message. The main point is that statistics are averages, and there are some who do better than average and some who do worse. The doctor’s going to give you the averages. You’ll have to dig for yourself to look at the survival statistics for people who are more like you.
Randy said,
July 27, 2011 at 7:22 pm
Once again, thanks to everyone for their suggestions and good wishes. I’ve already checked out a couple of things mentioned and will undoubtedly be following up more. Some who wrote privately I have yet to respond to, but I will and your notes are appreciated.
The oncologist I’m meeting tomorrow is not the abdominal specialist I was referred to – she passed my file to him. They said I’d have to wait a month for an appointment with her.
The oncologist who I am seeing apparently practiced for 20+ years in Bremerton before relocating here, and appears to be more of a generalist. We’ll see what tomorrow brings – might make the decision to seek treatment at Mayo or Anderson much easier. At the very least, should get the information I need to make an informed request at either of those places.
The assistant for the internist I’ve been seeing for almost 17 years has been great – she’s already collecting all the records I may need and volunteered to help me go through any hoops needed to get radiology DVD’s and pathology slides, etc.
Continuing with the “Laughter is the Best Medicine” policy, we’re going to see a revival of “Anything Goes” tonight at the California Musical Theatre. Should be great fun.
Before I go, I do want to especially thank Ann Althouse for drawing attention to this post. Your compassionate gesture has already made a difference, Ann. Thank you.
Irene Katele said,
July 27, 2011 at 8:13 pm
Hi Randy,
I also will check here periodically to read your updates and to see how you are doing.
You also may find this article helpful (sorry that I cannot find the free link).
Irene
Theresa McAvinney said,
July 27, 2011 at 8:57 pm
I would recommend to anyone who wishes to know more about Protocel to go to the Sheridan Family site at http://users.tc3net.com/jsheri/entelev/index.html. Not only will you discover the history of Protocel, you’ll understand the mind of the inventor and be able to link to other useful sites. I read the information from the Masonic Cancer Center, and unfortunately found much of the content inaccurate. The fact that the product Cantron is linked to Protocel in the heading of the article is misleading, for they are not the same formulation. I pray that the truth will be evident to those who seek it in earnest. God Bless.
Tom Strong said,
July 27, 2011 at 9:02 pm
Randy, my friend at NEJM recommended the following article (it’s free):
http://www.nejm.org/doi/full/10.1056/NEJMoa0908721
May be worth emailing the authors.
Among Britcoms (well, Irishcoms), I also recommend Father Ted.
Rod said,
July 27, 2011 at 11:14 pm
No advice on doctors. I’m just wishing you well. I always read your posts with eagerness because your humanity always showed through.
Icepick said,
July 27, 2011 at 11:39 pm
‘pick: that video made me laugh!
Just trying to help with the alternative therapy.
Karen wrote: if you need me for any part of my liver– it’s yours.
Better check that link I provided earlier….
Melinda said,
July 28, 2011 at 9:12 am
@pathmv: “If you have not read it, you should take a look at this essay by Stephen J. Gould, when he was diagnosed with cancer: The Median Isn’t the Message.”
That article was indispensible for me when my husband was diagnosed.
karen said,
July 28, 2011 at 10:34 am
That sucks- i would gladly give part of mine.
Tim (formerly Theo Boehm) said,
July 28, 2011 at 6:40 pm
Randy,
Not having any particular knowledge or insight about your condition, all I can offer is every well wish, and to let you know you are in my thoughts and prayers that you’ll win this battle as well as you did the last one.
Tim
Cathy said,
July 28, 2011 at 8:17 pm
Randy- I am a CC survivor!! I was diagnosed 3 years ago and given 6-8 to months. I was lucky enough to be diagnosed at Barnes-Jewish Hospital in St. Louis MO. They are one of the few hospitals that have expiereince in CC. My hero was Dr. William Chapman an amazing man and doctor. I am alive because of a clinical trial involving chemo, radiation and a liver transplant. Please read my story at thetelegraph.com under christmas miracle.
I would suggest you contact him immediately. (the Mayo Clinic also has this trial). I also would go to cholangiocarcinoma.org it is full of support and information from all over.
Please feel free to email me at jrdunnagan@gmail.com if I can be of more help
Lots of prayers-Cathy
michael reynolds said,
July 29, 2011 at 12:22 am
For what it’s worth I put this out on my Facebook and Twitter.
michael reynolds said,
July 29, 2011 at 12:27 am
This so far, for what it’s worth from a friend with some knowledge. It’s general, not specific, I’m afraid:
As far as trials go, I think the best place is M.D. Anderson Medical Center in Houston. Although, they were not able to help ________. She was suppose to get on a trial but by the time the trial was even approved, she was dead. That is the trouble with trials. There are so many obstacles. You have to get approved and they usually won’t accept you if you have had any prior treatment. Finding a Dr. who is up on all of this is hard as well. Although I know UC has a great reputation I have a lot of issues with that place having been through cancer treatments with _________ and __________. Memorial Sloan Kettering is suppose to be one of the best cancer hospitals. Wake Forest Hospital in South Carolina (or north) is suppose to be good for cancer trials and easy to get into. A small hospital but specializes in trials.
Donna B. said,
July 30, 2011 at 1:39 am
Randy… I haven’t read the 50+ comments preceding this so I might repeat something.
First… I’m so sorry that this cancer hit on you. It’s either completely random or a matter of genetics and it would be so much easier on everyone but you if we could identify who was responsible when. We can’t. Again, I’m sorry.
So… I will tell you only about the treatments that either I or my relatives have had with various cancers. I know they are not all the same disease. My husband and myself have had good fortune with treatment locally — Shreveport LA.
My mother and stepmother both had treatment at MD Anderson in Houston. My mother was deemed cured, my stepmother not.
My father was diagnosed at Scott & White in Temple TX and his very early diagnosis is the best thing. His lung cancer was treated in Texarkana TX. Treatments are much more available than are diagnostics.
Even the best treatments suck.
Radiation has (my observation only) the best result when side effects are considered… for most cancers. This may not be true for yours. I don’t know. It’s certainly not free of side effects and it may not help at all, depending on the cancer. (It is of no use on one of my husband’s cancers, but “cured” him of another.)
I can’t put my self in your shoes, but I think if I could I’d ask my docs to try radiation for palliative and shrinkage accompanied by chemo to kill and immunotherapy to fight along side what your body might do for you.
And I know that some of those therapies may not be compatible with each other for your situation… but ask for an explanation or trial at least.
The last thing I know is that my thoughts and advice are rather meaningless. You gotta do what you gotta do. My wish for you is peace with your decisions.
Danielle said,
July 30, 2011 at 5:24 am
Hi Randy,
I wish you all the best and I’m sorry that I’m not able to comment with links to clinics and other resources as some people have been doing. However, I would STRONGLY urge you not to listen to any advice regarding “alternative”, “complementary” or “integrative” therapies. These therapies are all totally ineffective. The unfortunate truth is that none of these methods have any basis in science. Please don’t waste your time on ineffective treatments.
An excellent resource on the integrative/alternative fallacy is Science-Based Medicine: http://sciencebasedmedicine.org
Again, I wish you all the best and I really hope that there’s some valid scientific treatment out there that can help you.
Andrew said,
August 2, 2011 at 9:27 am
http://www.cancer.gov/clinicaltrials/search
karen said,
August 7, 2011 at 8:34 pm
Hey, Randy!!!!
I’ve got a couple of cd(s) by John Cabot Zhinn(sp, pretty sure that’s wrong) and he is a cool dude. Writes books and lectures on ~Awareness~.
Maybe he could help, too.
Deborah Scott said,
June 10, 2014 at 1:48 pm
Just finding this thread now 3 years later and am wondering if Randy had a transplant. Thank you.
amba12 said,
June 10, 2014 at 2:28 pm
No . . . I’m really sorry . . . Randy was not approved for a transplant and he eventually lost his life . . . he did so magnificently . . .