(1 replies, posted in Chemotherapy)

First thing is to eliminate the desperation.  You've made it through seven years, this is not the time to panic.  Take a deep breath, or as many as you need.  Look into Tom's eyes and take strength from him.  I am the patient, but sometimes I think it's harder on the primary support person.  You've been doing your best for all these years and you have so much to show for it.  I'm not sure how this idiom will come over, but "keep on keeping on."  ==> Don't give up.  Treasure every moment you have and look for miracles where you can find them.

As for a second opinion, that will be endorsed by everyone on these Boards.  So much has been learned in the last few years that was not even suspected seven years ago.  Look at all the reports Gavin has posted.

There are excellent centers on the East coast in New York, Boston, and elsewhere you can go to for a second opinion.



(2 replies, posted in Members' Cafe)

Wanted to see if the Boards were back up and taking new posts.

My wife practices Dragon's Way QiGong and works with me on some exercises.  My favorite is "Rocking the Baby Dragon".  Her Master is my acupuncturist so I get a little encouragement from him.

Still a little reluctant about the herbs.  They are chemicals and have not been tested.  My western mind has trouble with that.

I just signed up on the KEYTRUDA/Merck website to get mailings as new info comes out.  Has anyone else done this?  Was it useful?



(9 replies, posted in Introductions!)

Cillie -

You are a tailor and an herbalist.  Good choice on the second.  Nice threads on the first, but can't say I love the hat.  (And a recent BSN graduate in real life.)

Can't wait for an update.


There is a least one discussion line on "statistics" - search on that word.

There is also a topic on deciding whether or not to do adjuvant chemo after resections in "General Discussion" from anrena18 on 10 Oct 2014.


Thanks folks, it's nice to be appreciated.

Gavin, you don't write them, you just report them.  Keep it up!



(21 replies, posted in Chemotherapy)

Lymph node was removed Tuesday and I had chemo today.  Biggest "problem" was having three people ask me the same questions before surgery - ones that were on a form that no one asked if I had completed.  When I asked about that, the answer was, "Most people don't remember to complete it so we don't ask for it."  No stitches - they glued me back together.  No pain afterwards,but taking antibiotics.  There were two nodes they could have used, picked the one farther from the aorta and a nerve.  This node had grown perceptibly over the last 14 months so it was a good candidate.

This is from update I sent my family about getting tissue to send to FoundationOne:  "..., getting three hospital systems, two oncologists, a surgeon, and a test lab to move in the same direction is like herding cats.  Not to mention all the support people who actually get the work done."

I will post whatever I learn from FoundationOne.

Does anyone have something that works for them to get platelet count up?  Mine was 139 late last week but down to 84 today.  Had to cut back on my dosages.


"Grrrr"? - is that an obscure Scottish dialect for "Oy vey"?

From Cancer.gov (as a reminder of what the different "phases" are:

"What does a trial’s “phase” mean?

New interventions are often studied in a stepwise fashion, with each step representing a different “phase” in the clinical research process. The following phases are used for cancer treatment trials:

    Phase 0. These trials represent the earliest step in testing new treatments in humans. In a phase 0 trial, a very small dose of a chemical or biologic agent is given to a small number of people (approximately 10-15) to gather preliminary information about how the agent is processed by the body (pharmacokinetics) and how the agent affects the body (pharmacodynamics). Because the agents are given in such small amounts, no information is obtained about their safety or effectiveness in treating cancer. Phase 0 trials are also called micro-dosing studies, exploratory Investigational New Drug (IND) trials, or early phase I trials. The people who take part in these trials usually have advanced disease, and no known, effective treatment options are available to them.

    Phase I (also called phase 1). These trials are conducted mainly to evaluate the safety of chemical or biologic agents or other types of interventions (e.g., a new radiation therapy technique). They help determine the maximum dose that can be given safely (also known as the maximum tolerated dose) and whether an intervention causes harmful side effects. Phase I trials enroll small numbers of people (20 or more) who have advanced cancer that cannot be treated effectively with standard (usual) treatments or for which no standard treatment exists. Although evaluating the effectiveness of interventions is not a primary goal of these trials, doctors do look for evidence that the interventions might be useful as treatments.

    Phase II (also called phase 2). These trials test the effectiveness of interventions in people who have a specific type of cancer or related cancers. They also continue to look at the safety of interventions. Phase II trials usually enroll fewer than 100 people but may include as many as 300. The people who participate in phase II trials may or may not have been treated previously with standard therapy for their type of cancer. If a person has been treated previously, their eligibility to participate in a specific trial may depend on the type and amount of prior treatment they received. Although phase II trials can give some indication of whether or not an intervention works, they are almost never designed to show whether an intervention is better than standard therapy.

    Phase III (also called phase 3). These trials compare the effectiveness of a new intervention, or new use of an existing intervention, with the current standard of care (usual treatment) for a particular type of cancer. Phase III trials also examine how the side effects of the new intervention compare with those of the usual treatment. If the new intervention is more effective than the usual treatment and/or is easier to tolerate, it may become the new standard of care.

    Phase III trials usually involve large groups of people (100 to several thousand), who are randomly assigned to one of two treatment groups, or “trial arms”: 1) a control group, in which everyone in the group receives usual treatment for their type of cancer, or 2) an investigational or experimental group, in which everyone in the group receives the new intervention or new use of an existing intervention. The trial participants are assigned to their individual groups by random assignment, or randomization. Randomization helps ensure that the groups have similar characteristics. This balance is necessary so the researchers can have confidence that any differences they observe in how the two groups respond to the treatments they receive are due to the treatments and not to other differences between the groups.

    Randomization is usually done by a computer program to ensure that human choices do not influence the assignment to groups. The trial participants cannot request to be in a particular group, and the researchers cannot influence how people are assigned to the groups. Usually, neither the participants nor their doctors know what treatment the participants are receiving.

    People who participate in phase III trials may or may not have been treated previously. If they have been treated previously, their eligibility to participate in a specific trial may depend on the type and the amount of prior treatment they received.

    In most cases, an intervention will move into phase III testing only after it has shown promise in phase I and phase II trials.

    Phase IV (also called phase 4). These trials further evaluate the effectiveness and long-term safety of drugs or other interventions. They usually take place after a drug or intervention has been approved by the FDA for standard use. Several hundred to several thousand people may take part in a phase IV trial. These trials are also known as post-marketing surveillance trials. They are generally sponsored by drug companies.

Sometimes clinical trial phases may be combined (e.g., phase I/II or phase II/III trials) to minimize the risks to participants and/or to allow faster development of a new intervention.

Although treatment trials are always assigned a phase, other clinical trials (e.g., screening, prevention, diagnostic, and quality-of-life trials) may not be labeled this way."



(5 replies, posted in Hospitals)

Marion -
Once I get a report I will share it.

One thing that Dr. Alberts recommended was that the analysis by FoundationOne should perform both the solid tumor panel AND the hematology panel.  The second one will check for FGFR4 which will be of use in determining future treatments. 

BTW - this is another of those post-treatment nights where I have trouble getting to sleep.  I think my cat has even given up getting me to go to bed.


Suzanne -
There is so much help available on these Boards that is almost overwhelming.  Take some time each day to explore.  The Search function is good, but randomly following individual stories can tell you a lot, also.

Help comes in three forms.
There is an enormous amount of medical information here.  It can help you form questions for your medical team.

The personal stories fill in the cracks not covered by medical information.  They provide the inspiration to keep on, especially when the going gets tough.

Last, and most important, is faith.  Faith in God.  Faith in your medical team.  Faith in each other.  This is the part of your wedding vows where "in sickness and in health" steps up.  It has been said by at least one person here that "This cancer sucks!"  True, but it teaches you quickly what is important and what is not.


I cannot overstate the importance of a second opinion.  Make the connection now.  I waited over a year.  It did not influence my diagnosis or treatment, but it helped me mentally.  Also, by getting connected now, if things change, you can quickly bring the second opinion team up to date instead of starting at square one.

One other thing I recommend getting done now is to send biopsy material out for genetic testing.  It may not always return an answer you can act on for treatment options, but if it does, it can get you specific information instead of the generic treatment options.  That's what I will be using it for.  Currently on gemcitabine/gemzar but the time will come when that won't work any more.  The combination of a second team and genetic testing will help with "what's next?".

Plus, a connection to a major cancer center may help with selecting clinical trials if one comes up you can enter.  It looks like you are only about an hour and a half from Boston so Dana-Farber is a good option.  Mass General also has a good reputation.

It may seem strange to you that people on this site may be envious of you looking at the possibility of surgery.  That mean your CCA was found early before it had grown and metastasized.  Surgery is not an option for me or for many here.  If nothing else, know one thing:  all of us on this site and pulling for you and praying for you.

One last bit of business about this site - the search function can give you a lot of information fairly fast.  Use it often.  It can give you answers and also questions you should follow up on with your team.  Other than that, just browse the various Boards and get to know us.  You can send private e-mails to individuals.


And Percy keeps on helping.



(5 replies, posted in Hospitals)

I had blood work done on a Wednesday at the Mayo Clinic.  One thing you need to remember is that some of the results may be dependent on the machines performing the analyses, so the results may not be directly comparable to those from your “home” clinic.  CA 19-9 comes to mind.  Mayo also has a way to set up so that you can access your results from your computer.  I did not have to have a CT scan since I had had one a month before my visit.  If you don't have a recent one, they may schedule one for you there.

Thursday I came back.  Check in was smooth.  Stayed on schedule.  After the required height and weight measurements (and birthday confirmation) waited maybe 15 minutes and met with nurse practitioner.  She was great.  Knowledgeable.  (I was impressed that both she and Dr. Steven Alberts knew of our site and the discussion boards.)  She opened with a leading question and I got on a roll.  I love to tell stories and I had a captive audience.  I had a question about an item from my CT scan report.  She brought up the first and last scans and showed me what the item meant.  NOTE:  Even though they ask you to bring only the last three scans, I suggest you bring them all you have.  Better to have too much info than say, “If only you had brought one more thing.”  Since it all on DVDs, it's no big deal.

She left and talked with Dr. Alberts for a few minutes.  After he came in we chatted for a few minutes then got down to the reason for my visit.  He agreed with the revised treatment plan of going back to what worked (carboplatin and gemcitabine) since I had tolerated it well and was a first line treatment.  (My onc here had planned for me to go to FOLFOX6 which is a second line treatment.  I thought she had given up too early and disagreed with that approach.  She and I eventually agreed to go back to carbo/gem.)  So, everyone was in agreement with my next series of chemo treatments.  Dr. Alberts then brought up what possibilities existed after the carbo/gem had run its course.  This is where his knowledge really came out.  Things he had in mind were not even in my onc's world.  We discussed the option of clinical trials.  We also discussed genome testing and how it might help (something my onc mentioned only after she had been treating me 14 months).  He said that it was important that a certain test be performed which was not in the normal plan.  We ended by agreeing that I would keep sending him updates, especially the results of the genome testing.  When it looked like a treatment change might be required, he would review everything and discuss with me and my onc.  Probably could be done over the phone.

Dr. Alberts is confident that there will be a major breakthrough in CCA treatment in a few years.  Probably in using existing treatments from other cancers in treating CCA.  That's where the pharmas can get the biggest bang for their bucks.  Follow the money.

Physical impressions:
Mayo Clinic is HUGE.  The main campus takes up about six blocks.  The second campus takes up a few more.  And that is just downtown Rochester.  It has an underground tram and above ground skyways connecting buildings.  Over 34,000 people work there.  The public rooms, like the entrance and waiting areas are beautiful, like a fine hotel.  Marble and wood.  Possibly leather chairs (definitely not fabric). 

Things I'd do differently in travel and lodging if I have to go back.
1.  Fly to Rochester instead of Minneapolis.  Try to avoid a layover in Chicago.
2.  Find motel with airport and Clinic shuttles to avoid paying for car rental (make sure there are restaurants within walking distance).
3.  Get a reservation that allows changes without paying extra.  I stayed an extra day in case they wanted more testing.  But it would have been expensive to change flights after they were booked.
4.  The Mayo Concierge service can help with all that – just call them.

Things Mayo could improve:
I completed some forms twice.  One set said to send back in 7 days; other set said to bring with to consult.

Have patients go right to 10 South Gonda (oncology center), not to Admissions.

They take a picture of you to enter into your file for security.  That is done right next to Admissions at Window 18.  Stop there first if the line is short, otherwise go to 10 South Gonda first.

Final impressions: 
Mayo Clinic is a top shelf institution.  People are knowledgeable.  They exude confidence.  They are calm and reassuring to patients.  Professional and kind.  They know why you are here and act accordingly.  Not syrupy sweet, but understanding. You get the feeling that you are in good hands.


When I clicked on the "Read more" the link did not work.


(21 replies, posted in Chemotherapy)

FoundationOne reported back that there was not enough material to study.  So, I am getting a lymph node removed tomorrow to send to them  ENT could not promise there would be enough material using just a needle biopsy (he failed once a year ago).  Onc wants the sample taken before I restart chemo "(because there will be more cancer cells now").


I'm sorry, but what was the purpose of this study?  They discovered that 30% of cancer patients have anxiety.  That tells me that close to 70% of the patients were lying.

Again, I apologize for the cynicism.



(15 replies, posted in General Discussion)

This is one thing that I don't think I've convinced my onc on.  I will never be stronger than I am now, so now is the time to be aggressive and find out just what my limits are.  We can always back off later as conditions dictate.   I'm concerned if we slow down too early, we can never regain the lost ground.  As to whether or not I should expect an improvement, the only way to find out is to try.  Easy to say now, ask me again in six months.



(15 replies, posted in Chemotherapy)

Hope you are not traveling through O'Hare on the way home.  Major issues resulting in flight delays and cancellations.

If you can't keep down chicken soup, warm, flat ginger ale is the next best thing.

So, you had no trouble with your local clinic/hospital administering the treatment plan developed by Dr. Javle?  I am running into a little unhappiness here simply because I was going to see Dr. Alberts at the Mayo Clinic for a second opinion.  Fortunately, his opinion matches (for now) what my onc is planning (after some pushback from me on her first plan).



(21 replies, posted in Chemotherapy)

Fourteen months after I was diagnosed my onc sent a sample to FoundationOne.  Not sure why she waited so long; I had asked about it months ago after reading about it in the Boards.  It could take up to three weeks to get results back.

One thing I learned at Mayo is that the standard testing is the solid tumor panel.  I was advised to also get the hematology panel testing done to look for a specific thing - FGFR4.

Chances of getting a match back are small, but if you get lucky, you will be able to get a specific treatment plan with a higher probability of success.



(6 replies, posted in Members' Cafe)

In my line of work, people frequently come back as consultants and some have asked if I would too.  I tell them that I don't have time to work.  Not sure how I ever fit it into my schedule before I retired.



(6 replies, posted in Members' Cafe)

Please keep posting.  You need to know that some of us take strength from you and your normal life.  As long as there are people like you, and many others on these boards, who have cleared the hurdles, we have hope.  THAT is the biggest gift of all.


One opinion I got at Mayo that surprised me was that the pharma companies are looking more into CCA than I had believed.  Not so much at new treatments (starting from scratch is expensive), but getting approval to apply existing treatments in new areas.  If they can get them approved in new areas it helps their reputations (and bottom line by being able to sell more).  The opinion/hope was that this is where a major breakthrough would come.  And combine this with genome sequencing to selectively treat patients instead of the broad brush approach.


Stats are just that - numbers and probabilities.  Without seeing the entire data set you have no idea what went into the curves.  Without being given the statistical deviation you don't have the complete picture.  These are averages.  Here is an analogy:
You are shooting at a target.  All ten arrows are spread an even distance around the center.  On the "average" you shot 10 bulls eyes.  That is considered "accurate" but will have a large standard deviation.
On your second attempt, all ten arrows are clustered in a circle two inches across, but five inches from the center.  That is considered "precise".  And will have a low standard deviation.
Neither will get you an award, but at least the second one can be easily corrected by changing your aim.

Bottom line, like Gavin said, is not to get wound up too tight about averages.  All you can do is your best, aided by the best the doctors can do.  Maintain a good attitude, hold your head high, trust in God, and live the best life you can.  Sounds like a good plan regardless of whether or not you have cancer.


Marion -
No.  that was part of an email that Julie received from a "Patient Navigator" at the Mayo Clinic that she forwarded to me.  I will forward it to you.



(21 replies, posted in Chemotherapy)

I am not a candidate for resection.  I started with eight rounds of carbo/gem then went to gem only for about 10 rounds to take some stress of liver and kidneys.  The main tumor in my liver decreased from about 18 cm to about 11 cm with carbo/gem and help steady for the first eight rounds of gem only.  It increased slightly over the last 2-3 rounds of gem only.  I am going back to carbo/gem because it worked.  When it no longer works, I will explore other alternatives, probably going to second line treatments, then eventually to a trial if I can find a suitable one at the time.