Congrats on your good news!!!  As with everyone else, I am so very happy for you.

See you some time soon...renee

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(25 replies, posted in Members' Cafe)

Kris, congrats on the new title!  You deserve it.

xoxo Renée

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(3 replies, posted in Members' Cafe)

Hi Lainy.  Yes, I have heard of Silvia Brown, but have not read any of her books.  I'll have to put them on the list of Things to Do when I don't have the energy to do anything but read or watch TV.  Luckily, I am not there now...too much to do smile

Keep up the great work, Lainy.  You are one of the many blessings on this board.

Have a peaceful evening, and I hope your tummy behaves tonight.  Renée

Thanks, Danna, for getting back to me on this.  As mentioned, my oncologist does not think outside the box, and if his senior partners are of the old school thinking, he probably has to go along with it.

For now, I have applied for Melinda's clinical trial and should that go through, transplant won't be on the table for a while.  But like every other patient on this board, all options are in consideration until proven otherwise.

Best wishes and thanks again, Renée

Hi Kris.  Yeah, I know, what a cold fish he was in the beginning.  He is starting to warm up a bit, mostly because I keep him on his toes.  But as I have mentioned before on other posts, there are only 3 CCA patients in this rather large oncology practice, so I don't think the focus is too sharp when it come to CCA.

One issue is the attitude (I believe) on the part of the physicians:  this is business, nothing personal.  And when you've worked in medicine for over 30 years, you see the signs.  Another issue is that my oncologist is the youngest and lowest member of the group; from what I hear from other patients with other doctors, I believe he is following the edicts from above.

I did not take his prognosis to heart, but it did get my butt in gear to tidy up some very loose ends.  Now we are in a better place for when the inevitable happens...many, many years from now smile

See you next week!!!  Renée

Regarding this discussion board:

Not only is there an abundance of information to be gathered for patients and caregivers, I believe the medical community at large would benefit from taking a few hours to peruse this site for the wealth of information about this disease that is not all that readily available.

I have been communicating with Melinda regarding her trial in NIH and brought some of the information she shared as well as information from this board about the TIL Trial.  Both oncologist and nurse practitioner were surprised that I was able to get such information from this format, and that we actually communicate with each other be it on the board, via email, or telephone conversations.

I believe I mentioned this in a previous post, but I blew away some of the nurses at the oncology office when I started dropping words like KRAS, EGFR, etc and actually knew what I was talking about.  The nurses said they wished they had a means of getting continuing education along those lines, but since I am one of only 3 CCA patients in a rather large oncology practice, I am sure they won't go through all that much trouble.

The monitors on this board are fantastic, and your time, effort and concern shows in your posts.  Thank you all so much from the bottom of my heart.   xoxoxo Renée

Hi Marion.

I am rather fussy about the accent in my first name, and especially fussy with how the name was pronounced when I was a child (a whole different topic).  I had to pay extra for the accent on the wedding invitations, and that was in 1998, not all that long ago...or is it???

Years ago, I worked with a women who's sister had the same name, and she accomplished the accent by typing 'fiancee' and used spell check to add the accent.  I don't think it works will all word processors (it does not work on Outlook), but we had Excel and that did it at the time in 2001-2002.  I have been able to cut-and-paste it ever since, even adding it to the dictionary of Open Office.

I can be quite persistent smile

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(3 replies, posted in Members' Cafe)

Lainy, I am starting to feel a love/not-so-much-love relationship with you wink  When I read posts like this I start crying because I know the pain John will go through with my passing.  And honestly, although I imagine we can be 'with' our loved ones, I feel I will miss him terribly.  I just hate that I have to put him through all of this!!!

On the other hand, you always take your topics into a positive direction...hence my love for you and your posts.  Your Teddy is a great guy, giving you signs of his love and support.  When I see him - which will be a long time from now! - I will have to ask him for some tips smile

I seldom cry about all of this nonsense we go through, so I suppose a good cry is due now and then, cathartic I suppose.  So again, I am leaning more towards loving you and your positive attitude.

Take Care, Renée

Thank you Marion.  I am quite the lurker myself.  There is so much put out for us that I usually don't comment unless no one else comes forth.
You are right, of course.  All comments are helpful to someone or another I suppose.  I know I am all the better for the comments of other posters.  The information I have gathered has made me much smarter about this disease and how to approach it.  And has opened up many a discussion with my oncologist with a knowledge that I am sure he did not expect.

Thank you, Marion, for your continued support for all of us, Renée

Hey Patty, I forgot about that darn jaw pain...felt like I bit into something sour.  Just another one of those PITA side effects, but nothing worrisome.

The trick for the painful eyes I found incidentally.  My eyes were burning, so I bent over and made a silent scream (so as not to scare my husband since it hurt like a SOB)...which was more like bearing down.  And it stopped the burning!  Ever since, whenever I had that eye pain, I would bend over and bear down and it would stop.  I hope that helps.

Glad you do not have the diarrhea issue that I had, but that was Xeloda related so I left that rather distasteful subject out! 

Best Wishes to All, Renée

I remember when CC meant Canadian Club.  Man, am I getting old...or just missing the days when I could ask for such a beverage?

Tiff, great story of course, and great to put a beautiful face to the story we have been following...much better than an Avatar.

Continued success to you, sweetie.  Enjoy your new life with the family.

Take Care, Renée

Hello Dorien/thebompie4, please let us know if you are able to get a telephone consult from Dr. Javle.

I live in NJ and don't have any connections in Texas that would make it practical for me to travel that distance for a consult that would offer no change in the current treatment plan.  For some reason, the East Coast does not look favorably on transplant as does Pittsburgh, Mayo, or MDA.  I wish I knew why?  I showed my onc a report on a successful transplant in U of Maryland and he brushed it aside stating one success does not mean anything.  I get the feeling that they don't believe in giving good livers to bad outcomes?

We don't have any children - by choice - but I do want to live my life as long and healthy as possible.  Not only for myself, but mainly for my husband John who loves me dearly and means the world to me.  To that end, I would be willing to go to Texas if it meant a chance to extend the 12-18 month initial prognosis given in May 2012.

So far, my oncologist is following the straight and narrow treatment lines, but I have been looking for alternatives.  I have been researching this site for successful clinical trials, liver transplants and the constructive information to back up my suggestions.  But I am not willing to spend what little money we have to no avail so I really have to weigh my choices.

So back to my request, please let us know if you have any success with a phone consult.  I did get one with a specialist in NYC once and it saved me a long trip to get the same answers I had already received.  That was back in May 2012 and a lot has changed since then, so who knows.

Thank you and Take Care, Renée

Hello Regina, thank you for your response!
Since my most recent entry on this thread, I have started the FOLFIRI at a 25% dose reduction as my onc knows Quality v Quantity is my goal.  I started my 2nd treatment yesterday and am on the pump until tomorrow.  So far, I have not had the horrible experience I anticipated...phew.  But it is still early in the game.  I shouldn't be due for my next PET/CT until October, but will watch my CA19-9 for any further increases.  I am one of those that can rely on the CA19-9 as an indicator of success or failure of treatment.

I am applying to NIH for their GI TILS trial, and because of my onc's resistance to the trial to the point that I had to do something as my markers were rising, with the start of the FOLFIRI, it has to fail before they can put me on the trial...that is if I qualify in the first place.  So my plan is to stay on the FOLFIRI for 4 cycles and take 1 cycle off before we go away to Bermuda for 2 weeks.  That would give me the 28 day chemo wash out necessary to start the trial.  And also gives the week before we leave to get the biopsy I would need for the trial, or I would want anyway to check for the genetic sequencing.  Sounds like a good plan to me, but "man plans, God laughs", so who knows.

The reason I need another biopsy is that it had been sent out so many times for evaluation, there is not enough tissue remaingin to evaluate.  And with all that slicing and dicing, no one thought to check for genetic sequencing?  But thanks to all of the information on this site, I know what needs to be done this time.

Does anyone know of success with FOLFIRI?  It does not look to be very promising.  On the bright side, however, that lack of success would get me on to a trial quicker...if I qualify.

BTW, what happened with your MD Appt yesterday?  Any new plans in your future?  I they come up with something that can help.  Do keep us in the loop.

Take Care, Renée

Hi Shari.  I was on Oxaliplatin along with Xeloda for almost 7 months (with a 6 week break in the middle).  The Oxali has a lot of 'fun' side effects.  Kris already mentioned the cold sensitivity and I am pretty sure the nursing staff gave you the heads up with that.  As mentioned, gloves will be your best friends.  Bring them when food shopping as refrig/frozen food will be painful.  Keep several pair around the kitchen if you can.  I had granite counters and even that was too painful at times.

Don't even try to eat or drink cold items...the best it will do is feel like you are swallowing small shards of glass, cause a freeze/burn sensation on your lips and tip of the tongue.  The worst is that it will give the sensation of your throat closing, and that can lead to anxiety and worsen the situation...NO ICE CREAM at all!!!  At least for the first week, maybe even longer according to what your body will tolerate.

When brushing your teeth, make sure the water you use to rinse your mouth is room temp...it is surprising how little things like that can make a difference.  Now that it is summer, not such a big thing.  But when colder weather comes and colder water come from the tap, it will make a big difference.  I used to test the water with my pinky knuckle.

When it gets cold outside (or you go into the refrigerated areas at CostCo and the like), cover your mouth/nose so as not to breath in the cold air.
Be aware that you might have muscle cramps at the most unusual times for no apparent reason:  'charlie horses' in calves and/or forearm, lip curls, eye lid twitches, hand contractions.  I even notice that my eyes would hurt - a lot! - if the cold got to them, if I yawned, or if I cried.  I even had an incident when I had a swelling in the front part of my tongue, like a muscle contraction that came for a minute and left.  I could breath and swallow so I did not worry.  But when I told the nurse about it the next week, boy did I get a tongue lashing!  So be sure to report any unusual reactions to the onc team so they (not you or me) can decide what to do.

BTW, I did not lose hair with the Oxali/Xeloda treatment, but it did not appear to grow all that much over the last 8 months.

I haven't had the Cetuximab...yet.  I would be interested in anyone's side effects as well.

Good luck with everything.  I hope this regimen keeps the beast quiet for a long, long time.  If your "oral maintenance" is Xeloda and you need any helpful hints, I'd be glad to share.  But I am sure you will hear much and better from the more experienced members of Our Team.

Best Wishes to You, Shari....Renée

Just got my schedule for next week and wouldn't ya know it...they scheduled me for a doc appoint that day.  Soooo, I called with my sweetest voice and begged for a reschedule, telling them about this really cool meeting with fellow members of the CCA club, and they were willing to work around it.  Yippee, I'm still in as long as the fatigue gods (very small 'g') are kind - can't wait for the Part-tay!

Kris, do we need a Secret Password; need to wear a special color (I don't have much green); or will we recognize each other by our ports and thinning hair...LOL.

Enjoy the last official week of summer all, Renée

Dear Percy.
I just saw this thread this evening.  Although I read the original entry previously, I re-read it from the beginning through to the most recent updates.
I  apologize for bothering you with nonsense regarding the TCM/CAM topic while you are going through such a trying time.  I might suppose you would say it is a distraction, but I want to apologize none the less.  You post so many entries, I never noticed this thread.  It is hard to keep up with you smile
A few points I would like to make:
- Yes, kind sir, you DO deserve such kind words.  I cannot imagine where I would be without your diligence in researching this disease process.  Learning the information you have shared makes me look far more intelligent than I really am!  (I even wow'ed the nurses today at the office, giving credit to you even though they don't know who you are.)
- Indeed, you are an instrument of God, a fine tuned instrument at that.  And for that I am deeply grateful.
Please take care of yourself.  Although I haven't met you, I have a deep respect for you and the work you do that benefits this site.  Although there are only three Cholangio patients in our oncology practice, I made copies of the brochure to be made available to anyone at the practice that would be interested...just in case.  This site is a God send, and a wealth of information and support.
Take Care and Be Well, Renée
(Sorry to be so word-y!)

Percy, thank you for your response.

I guess if I feel the need, I could take my chances on someone relatively local.  The same friend who bought into the cannabis oil went to a nurse who practices naturopathic medicine, and walked out with recommendations for hundreds of dollars worth of supplements that she could purchase through their practice...surprise.  The best our Oncology Nurse Practitioner would comment was that some could not hurt, others were a waste of money...she bought them all anyway.

Thank you for your 'personal opinion that is not intended nor implied to be a substitute for professional medical advice'.  I fully understand that, and appreciate your time and research that becomes beneficial so many of us on this site.

Take Care, Renée

Hi Percy. 
How would one know if they are getting 'good quality product'?  Do you have some resources you would be able to recommend?

Not living in a major metropolitan area, being somewhat sandwiched between NYC and Philly on the Jersey Shore does not count as a mecca for Eastern Medicine, or even Western Medicine at times.  I would not recognize a reliable source on the internet.  And I do not know anyone who is well versed in Eastern Medicine or CAM.

Even though I have been taking some for decades, I sometimes find it difficult to wrap my head around taking vitamins, herbals and supplements.  How does one know that they are doing the job you intended them to do?  And how do you know when you are getting 'good quality product'?  It is not like taking a bite of delicious chocolate and knowing you got the 'good stuff'.

Similarly, the reality of chemo or any cancer treatment is that we never know for sure what is working until it stops working.  It is all a leap of faith.  You roll the dice and take your chances without regret.

Thank you in advance for any thoughts on the matter, Renée

Sadly, one of my 'chemo buddies' gave up on the chemo because it was so debilitating.  She is 47, has four children - all have Asperger's syndrome to some degree.  She said she did not want her children's lasting memory of Mom to be of her lying in bed, or being on or over the toilet.  Can't say I blamed her, the FOLFIRI really beat her up.  The next line of treatment was said to be even worse with stronger side effects.

She saw a TV show about cannabis oil and how it kept an ALS patient alive and relatively well, and that it was 'proven' to cure cancer.  That was all she needed.  She researched and found a Canadian company that would sell her a one month supply of cannabis oil for.....$1200 a month!  And she bought it.  I did a quick internet search on the company she is using and all I read were negative comments.  I told her and sent her the links, but she ignored them.  I guess she is grasping for anything at this point.  I haven't heard from her in a while, and of course I wish her well and that this is her miracle cure.  But to me, it sounds like someone taking advantage of a desperate person. 

Do I believe that Big Pharma is taking advantage of us as well?  Probably.  Do I believe that some (not all!) physicians do not have the patients best interest in heart?  Absolutely, I've been in medicine for far too long to believe otherwise.  But I have faith in the science and research behind the treatments available, and sometimes faith is the best thing we have.

Hey Kris, I in.
Of course it depends on the date since my situation is kinda fluid.  But I can try my best to make it work.
YIPPEE!!!

Thanks, Lainey, for making me write this through teary eyes.  I have never cried for myself, even knowing that this is a terminal disease.  When I cry, it is for my husband and the pain he feels now and will feel for some time after my passing.  For some reason - maybe my medical background? - I have been able to take a logical approach to this journey, hence the reason for this entry.
Right now it is 'easy' for us as I don't have any pain or symptoms, just a good liver gone bad...and getting badder by the moment.  I think it was Kris who wrote that people would approach her and say 'but you look so good', and that happens quite a bit to me...I think mostly because of the much-needed-weight-loss smile   However, chemo treatments are failing, and unless I can get into a life-extending Clinical Trial - like the one in NIH that Melinda attended - I expect things to start going downhill fast.

So I have a question to ask the Caretakers/Spouses/Loved Ones:
Was it/will it be easier (if one could even use that word!) having your loved one pass away in your home or in the hospital?  Please don't think of me as being morbid!  Sadly, I am a planner and like my ducks in a row when possible.  I am concerned that John would look at the house that we built together and think 'that is where she died'...just thinking/writing this is making me cry again.  I would like to make this as easy as possible on him and wonder what your thoughts are on this delicate subject.

I hope this is not hijacking a rather wonderful thread.  I don't know where else I could have posted this.  Thank you for your indulgence, Renee

Thank you so much for these and yesterday's post on the same topic.  This gives me some ammunition as I go for my Oncology appointment today.

PCL:  the oncologist knows if you know what you are talking about, they will look into your case more closely and carefully and who will be benefit for that? You the patient.

There have been times when I think he gives me answers that he believes will placate me.  And sometimes I know he is giving me a line of hooey, but I don't have the information to back up my argument.  I have learned to go into an appointment with papers in hand to support a point I want to make.

My oncologist already thinks I am a bit of a PIA, but in a good way he says.  This will only strengthen that argument...thanks to you!

Renée

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(13 replies, posted in General Discussion)

Hmmmm.  I love seafood, all kind of fish, mollusks and shellfish.  I have noticed a lot of our shrimp has been imported from Vietnam.  I hope there is no connection!  And I do live in New Jersey...on the East Coast.  Oh boy.

Hello Percy.  Thank you for your usual prompt response.  And my apologies for my delayed reply.  It has been of a busy bunch of days.
Rather than continue to hijack Sandie's thread, I thought to jump onto this one, keeping the continuity of the conversation.

To review:
PCL1029  20 July 2013
“If I may, Sandie, I had my 3rd recurrence in June,2013. It was about 20 months after my 2nd resection on Oct. 2011. Therefore  we are a kind of similar in the tumor growth rate for intrahepatic cholangiocarcinoma(CCA).
Since I do not know about the medical systems in France, but if you can have a biopsy of the tumor to do a " next-generation sequencing genomic profile ", it may be of value in current and future treatment. The idea was suggested to me in my 2nd consultation from MD Anderson for oncology consult .
This CCA really a disease of its own; most other cancers, after the removal of the tumor will enjoy a much longer disease free period,even primary liver cancer .
I know how it feels when CCA come back to say hi to me. But I know and prepare it will be back anyway because of the odds are high for intrahepatic CCA.”

rvb  21 July 2013
“Percy, did I read correctly that you had a "next-generation sequencing genomic profile", did it make a difference in treatment approach?  Has anyone else had it done, and what was the outcome?

PCL1029  21 July 2013
“The following is the exact quoted from the consult from MD Anderson:
...To make some suggestions, if not done I would recommend genetic sequencing for additional genes .....
I also got another oncology consult from university of Chicago, the direct quote
is as follows:
---I would also send the tumor tissue away for full sequencing if it has not already been done, just to see if there are any hints as to how to best treat your tumor....
What i think is that they try to leave no stones unturned for future treatments since targeted agents are famous for developing resistance early.
I am EGFR positive, so they recommend Tarceva for me if all the tumor were removed completely by RFA and PEI.
BTW, if TIL from NIH is not for you, you may consider clinical trial of PD-1 and the like (PDL-1).(immunotherapy agents).”

rvb:  If I am understanding correctly, the testing offered a more directed approach to your treatment?  So it was successful as it appears to me, and good news for you.  I will bring this information to my Nurse Practitioner on Monday's appointment for her response.  As mentioned previously, I am not looking forward to FOLFIRI.  All options are on the table.
I did some quick research on the PD-1 and there appears to be a trial by Merck in Philadelphia.  Side effects will have to be evaluated, of course.  I am feeling pretty good for the state of the disease, and I would preferred not to feel too much worse.

Again, I will pose the question:  has anyone else had the testing?  If so, what was the outcome...was it worth doing?

Again, thank you Percy for your help and information.  Have a pleasant week, Renee