Re: New member -- Wife recently diagnosed with ICC

Jason

I just copied and pasted your info to my husband in an email--

i'm curious HOW they now the cancer cells are dead as opposed to living?

We are scheduled to start a RE treatment and it seems like its not a good
think if the liver tumor is mostly dead (it has shrunk by 66% and that is
a GOOD thing).

I hate being at the hands of drs who know so much and i feel like we
know SO LITTLE....sometimes it's very frustrating. 

my husbands life is, quite literally, in their hands. ugh.

No one has said a word to us about dead v living cancer in his liver.

Re: New member -- Wife recently diagnosed with ICC

Dorien all I can say to you is I ALWAYS listened to my gut and if I didn't understand something I asked. Usually prefaced everything with, "My Cholangio site says this, and it says that" and our ONC was so good natured about it all and answered all questions with great patience. Wish I could help I kind of don't understand it either unless they are aiming for the other 34%.

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: New member -- Wife recently diagnosed with ICC

Dorien,

In my experience, the most capable people at reading the CT scans are the radiologists (makes sense I guess!).  The amount of information we got from the interventional radiologists (IR) was much more detailed compared to our discussion with the various oncologists.  These are the guys who do the RE procedure, and I am pretty sure they do the procedure guided by CT scans.

Anyway, we asked the IR how he could tell the cells were dead.  He said that looking at the scans before and after the contrast was injected as well as closely looking at the scans taken while the contrast was spreading was how he came to his conclusion (that is my memory anyway).

The doctors at UCSF, UCLA and Stanford all concurred that if you were having a strong response to Gem/Cis, the time was not right for RE.  The IR doctors went further and said they thought identifiable active cancer was a needed before they would suggest RE.  By this, I think they mean wait until there is a liver flare up of new cancer before thinking about RE.

If you are having a strong positive response to chemo I would definitely get another opinion or consultation to understand why RE is good now as opposed to later.  66% reduction...wow!  Docs have estimated Andrea's reduction at 50%+, but they are not certain if the remaining tissue is active or scar tissue.

Anyway, I am not meaning to upset the apple cart, but I don't understand an RE recommendation given the strong response.

Jason

Re: New member -- Wife recently diagnosed with ICC

Jason

thanks so much for your very detailed answer.

It would be very fun to sit down with you and pick your brain
about this cancer.  We both admire your knowledge and research.

Kyle says while he has had good response it appears that the
"uptake" during his PET scans is still significant--which is why
(I think) they want to feed that sucker (the tumor) with some
RE.

Our 3 drs (we consulted 3 locally) said that they DO want a tumor
that has active blood flow for this so it will use that flow to work
with the RE.

Who knows---  Good luck in Houston.  We are thinking of maybe
trying to make a trip there--but trying to work out logistics and such.

My husband said he would love to hear about your experience
there.  We are wondering if it IS worth the trip for us as well!

We appreciate your responses always!

Dorien (and Kyle)

30 (edited by LadyLinden Mon, 07 Oct 2013 11:14:02)

Re: New member -- Wife recently diagnosed with ICC

Dear Jason, I saw your posts late last night and read each one.  I want to thank you for all the time you have spent doing research!  You have provided me with valuable information. You sound like you are a devoted husband and probably a great friend!  Lucky wife and friends they are!  I hope your wife and family will stay strong throughout this difficult time.  You both are so young to go through so much trauma.  I am 62 and have enjoyed good health my entire life.   I note you mentioned your wife was healthy, too. I was in shock because I've always been physically active.  I have sought no treatment because I've been tired and depressed so much that I didn't have the mental strength to look into my options. Your wife's condition appears to be similar to mine. I was diagnosed in May 2013 and I am in Stage IV, lymph node involvement, inoperable. My only option is chemo (cis/gem) and I am afraid to start chemo because I am feeling quite well. I have sought two opinions and both doctors agree that I am not a candidate for anything except chemo.  Would you please keep us updated on how you and your wife are doing.  Thank you for the amazing information and for sharing it with us.  Some of us are too weak physically and mentally to do the work you have done.  Sincerely Pat a/k/a LadyLinden

Re: New member -- Wife recently diagnosed with ICC

I agree, Jason is a GREAT advocate not only for his wife but for those on this board like Pat who are too overwhelmed to do all that research for themselves.
Thank you for sharing your observations and opinions, Jason! 
Healthy blessings to All of you,
Willow

Willow

Re: New member -- Wife recently diagnosed with ICC

Hi Pat,

It does sound like your situation and Andrea's are similar.  I know chemo sounds scary.  Some people do have bad experiences, and for us, the warnings from the "chemo class" were alarming. 

However, I think many people handle it well.  In Andrea's case, the main side effect has been feeling tired and achey for a couple of days.  In fact, Andrea said that the fear of the unknown actually made the first few weeks tougher for her.  Once she did it, and found out she could handle it, later cycles were actually easier. (She is sitting right here finishing her 18th infusion, and says if you want to talk or e-mail she would be happy to give you more details smile )

I can't recall the specifics, but I am pretty sure that people that start chemo while feeling healthy tend to tolerate the side effects better.  I do know that starting off healthy is associated with better outcomes from chemo (later progression and longer survival).

Of course, all of these decisions are highly personal, and everyone has to decide what is best for them.  I did want you to know Andrea's experience, and I hope this information is helpful to you in making some of your decisions.

Jason

PS As far as an update on Andrea, there is not much to tell yet.  We get another scan later this month and have a visit to MD Anderson scheduled in a couple of weeks as well.  Hoping for a good report at that time!

Re: New member -- Wife recently diagnosed with ICC

Hi Pat,

I just want to echo what Jason has said here. My mum is 62, otherwise very healthy, no real symptoms and she was diagnosed with ICC, stage IV, several months ago. She too was scared to start chemo as she didn't like the thought of pumping 'poison' (as she calls it) into her body (she's lived a life of veggies, fresh air and lots of exercise).

However, she started on Gem/Cis a while back, had a few teething problems with a bit of (manageable) pain in her liver area and temporarily low platelets, but now she feels great on chemo and she has more energy than she did beforehand. She's living a completely normal life, apart from having to pop to the hospital once a week!

I've read quite a few similar stories on here and a lot of people do very well on chemo, with few or no symptoms.

Whatever you decide, I hope it goes well for you. Do keep us posted.

Best wishes, Jules.

34 (edited by thebompie4 Wed, 09 Oct 2013 21:16:50)

Re: New member -- Wife recently diagnosed with ICC

Pat
i would only echo jason...my husband kyle is young (44) and has
stage 4 inoperable.  he was diagnosed in March of this year.

He has been healthy his entire life.  He just finished his 19th infusion
(looks like he's one ahead of andrea) and has done REMARKABLY
well.  his worst side effects have been tired for the 2 days after
chemo as well.

I just wanted to give you one more positive chemo story to look
at and hear...obviously the decision is your very own to make, but
please know some people respond VERY well to the gem/cis combo.
take care.
Dorien

Re: New member -- Wife recently diagnosed with ICC

Jason,
Thank you for the update, sending prayers of healing.
Lisa

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

36 (edited by JScott Fri, 15 Nov 2013 18:45:38)

Re: New member -- Wife recently diagnosed with ICC

Hello everyone,

I can’t believe that I haven’t posted an update since before our trip to MD Anderson.  I thought I would let everyone know what we have learned, and how things are going.

Here is a little background on the situation as of October -- Andrea was getting treated at Stanford, and had been doing well on her Gem/Cis treatments.  However, we were well aware of the fact that Gem/Cis usually gets either ineffective or too hard to endure.  We decided that during Gem/Cis cycles 7/8/9, we would get 2nd/3rd/4th opinions on what would be a good next treatment for Andrea.

Our first visit was to UCLA, which I think I already described.  Next up was MD Anderson.  Wow, that place is huge!  Two tips if you decide to go to MD Anderson.  First, be sure to use their online web application.  This is how we found out the timing of our appointments.  Second, if you have a port, don’t be surprised if they refuse to use it.  They would not use Andrea’s port for her CT scan even though we had all of the documentation for what type of port it was and where it was.  Their policy is that if they did not put in the port they will not use it without a chest x-ray!

Anyway, I think the standard MDACC review includes a meeting with the surgeon (Dr. Vauthey), and a meeting with Dr. Javle.  We first met with Dr. Vauthey.  We were not surprised at all to hear that Andrea was not, and probably would never be, a candidate for surgery.  We have a long list of surgeons with that opinion!  We next met with Dr. Javle.  We found out from Dr. Javle that the CT scan indicated stable disease since the prior scan.  We were hoping for shrinkage, but thankful for stable.  Dr. Javle said that in his experience with stable disease, two approaches have been effective at prolonging the time to progression:  radiation or Tarceva.

Dr. Javle’s recommendation was to:

1.  Get a PT scan to get a baseline for current cancer activity.
2.  Continue on Gem/Cis for 3 more cycles (12 total)
3.  Come back to MDACC in January and get a PT/CT scan.
4.  Assuming the January scan confirmed stable disease, pursue either radiation or Tarceva


I believe the type of radiation would either be proton beam or IMRT depending on an analysis of the collateral radiation (the involvement of the duodenal seemed key here??)

We next met with Dr. Kelley at UCSF.  Dr. Kelley recommended continued Gem/Cis for 3 more cycles, and then to use IMRT radiation treatment on the primary tumor location.  Given this is the biggest tumor and given the central location, Dr. Kelley thought this would be the area that would cause problems down the road.  Hitting it with radiation while it was smaller and well-contained will hopefully extend the amount of time Andrea is stable.  Dr. Kelley also suggested Xeloda during the IMRT treatment, and then continuing on Xeloda as a maintenance drug.  Xeloda apparently makes the tumor cells more radiation sensitive.

We have decided to continue on Gem/Cis at Stanford until January, and then switch to UCSF and do IMRT + Xeloda.  We have found a good match with Dr. Kelley and feel great about the plan (although still apprehensive about new chemo and new radiation treatment).

Andrea also got a PT/CT scan at UCSF to get a new baseline.  Fantastic news…the CT part indicated additional shrinkage!  The PT part indicated that there were NO VISIBLE SIGNS OF CANCER ACTIVITY!  All of the tumors in the liver now have sugar uptake that is indistinguishable from the sugar uptake of the surrounding liver (or less if necrotic).  That is just awesome.

Many of you have written with prayers and support.  Thank you so much!  Sorry that was a bit rambling.  Feel free to post or email me if you have questions about our experience to date.
 
Hopefully, Andrea and I can continue to keep ahead of this monster…

Jason

Re: New member -- Wife recently diagnosed with ICC

Dear Jason and Andrea, I have this strong feeling to call you Batman and Robin! What a team you make and to hear no signs of Cancer activity ...pow, bam, smack, punch..you got that Monster in a vice! Kidding aside though this is just great news. You sure have cause to be thankful this Thanksgiving and our prayers do not stop because one is stable we keep that line busy from here to there. So happy for you and thanks for letting us know.

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: New member -- Wife recently diagnosed with ICC

Great news Jason!  I've been wondering how you guys were doing!

Kyle just finished round 11 (or was it 12?) of Gem/Cis....he's still
doing well with the drugs.  Had some ear ringing, but hearing tests
indicate he  is well within normal ranges....

Our 3 opinions here in Utah all agreed radiation was a great next
step to zap his liver tumor (he has one only).  So he goes in
for y 90 on Tuesday.

And yes, I agree, new stuff sure makes one nervous!
So we are nervous, yet hopeful!

Best wishes to you and your wife in the continued fight against
"this monster" (good term for it--my name for it usually includes
some not very nice profanities!)

Keep fighting the good fight!

Dorien (and Kyle)

Re: New member -- Wife recently diagnosed with ICC

Jason and Andrea,
You really have left no stones unturned. What an amazing support system you have in each other! Congrats in the zero activity pet scan!! The koan sounds really good. Have a wonderful Thanksgiving!
Willow
PS my sister had gem-Cis first (short lived due to low blood counts), then radiation (y-90) then Xeloda alone for about 6 mos and recently started on Taxol. She has stayed with Cheryl Cho-Phan at Stanford the whole time. Had ct scans but hasn't had a pet scan in quite a while.

Willow

Re: New member -- Wife recently diagnosed with ICC

I can't believe how long it has been (7 months!) since I officially updated this thread.

As I said in November, we had this plan:

"We have decided to continue on Gem/Cis at Stanford until January, and then switch to UCSF and do IMRT + Xeloda."

and that is pretty much what has happened. 

Andrea had her last Gem/Cis treatment Dec. 18.  In total, she was one treatment short of twelve cycles.  Overall, she handled the chemo really well.  A little tired, and a little hair thinning, but pretty manageable all things considered.  Towards the end of the treatment though her blood counts were starting to get low and not rebounding quite as quickly as earlier. 

The net result of chemo: 
-Main tumor 1/3 original size and PET inactive
-Two satellite "medium" tumors significantly small, necrotic looking and PET negative
-"Constellation" of tiny tumors no longer PET active or visible

Pretty good from where we started.

In late January (2014), Andrea started IMRT radiation therapy.  The plan was to irradiate the area around the main tumor.  The logic given was that this tumor would be the one most likely to cause problems in the future, and that all the shrinkage gave an opportunity to treat it within a manageable IMRT field.  The treatment regime consisted of 28 days of radiation (5 days a week for 5.5 weeks).

Radiation, it turned out, was much harder than chemo, both mentally and physically.  About halfway through treatment, Andrea was having difficulty keeping down any food or drink.  This lasted throughout the remaining weeks of treatment and didn't really start improving until 3 weeks post treatment.  During those weeks, Andrea lost 15-20 pounds and was very weak.  Mentally, the challenge was to get up every day and go to another treatment when you knew that was what was causing you to feel so lousy. 

Andrea had her last radiation treatment March 5.  I guess you never know how you will respond.  During chemo, the side-effects for Andrea seemed easier than advertised, but just the opposite was true for radiation.

Andrea also took Xeloda (aka capacitabine aka 5FU) during radiation, since that supposedly helps the effectiveness of the radiation treatment.  Since radiation was only treating the main tumor, the Xeloda also acted as systemic therapy for the other tumor areas.

Andrea got her first post radiation scan in late March.  Good news.  The treated areas looked as expected, and the untreated areas looked dormant (looking at the untreated areas was actually the purpose of the scan since they said it was too early to evaluate the radiation region).

At this point, the oncologist suggested a treatment break until June.  The idea was to let Andrea recover from the radiation, and then see what happens to the tumors.  If all remained quiet, the likely path would be localized treatment to each "medium" tumor.  If there was a recurrence, then that would dictate the treatment path.

By April 1 (Andrea calls it her "Canniversary"), Andrea was mostly recovered from radiation, and quickly getting her strength back.  When not knocked on her butt from radiation, Andrea likes to be active and involved.  Her new passion is fund raising for CCF...you will all be hearing more on that later!  smile

It is now mid-June, and the last two months without treatment have been fantastic.  Andrea feels great, and things seem almost normal.  We even got to spend a week in Paris.  Neither one of us had ever been to Paris, and it was fantastic.  Since the diagnosis last April, I think this was the best two months that we have had.

However, everyone says that this disease is a roller coaster, and I can see that more and more.  We just got the results from Andrea's June PET/CT scan, and the news was not good.  Two new tumors in the liver.  One is 1cm and one is 2.5 cm, both PET active. 

We don't have much in the way of details yet (we see the oncologist next Monday), but that seems like an awful lot of growth if nothing was showing up in March.  My theory is that since the March scan was not a PET scan, but only a CT scan, they missed the beginnings of these tumors.  I will find out more in a couple of days. 

I guess the one positive is that the tumors are still contained to the liver.  The report also indicated that no lymph nodes showed signs of involvement.  Still a major bummer.

So that is the latest.  Hopefully, Andrea can get back into the "good news / what's working" column soon.

Jason

Re: New member -- Wife recently diagnosed with ICC

Jason. .. have you and Andrea ever considered the HAI pump for treatment?  It has done wonderful things for Ron, my husband.  Read my latest post under "What's working"
It sounds like Andrea would be a good candidate for the pump and the side effects are minimal.
I suspect that it was more likely the Xeloda that was making Andrea sick rather than the radiation.  That is wicked stuff!

Re: New member -- Wife recently diagnosed with ICC

Jason....you might find the below article informative:
http://theoncologist.alphamedpress.org/ … 4/385.full re: nodule detection and observations. 
Hugs,
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: New member -- Wife recently diagnosed with ICC

Jason,
I'm truly sorry to hear of Andreas setback. Please let us know what the onc suggests at today's appt. keeping you and Andrea in my thoughts!
Willow

Willow

Re: New member -- Wife recently diagnosed with ICC

Jason,
This disease is a chronic illness with many ups and downs. Please don't give up hope. I have had five reccurences and yes, it is disappointing but new treatment options are popping up, have you looked at any clinical trials?
Lisa

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: New member -- Wife recently diagnosed with ICC

Hi Jason,

Thanks for the latest update on Andrea and I am sorry to hear of these latest developments on the tumours. GRRRR to them. Please though, do not give up hope here and tell Andrea the same. Major bummer as you say but you know all about the up's and down's with all of this. Hoping that this just a bump in the road and that the onc will have plans to deal with this when you meet next Monday. Please let us know how the meeting goes and you know that we're all here with you both as well.

Paris sounds good, I was there many years ago as a kid. Bit of an eye opener for a 13 year old lad!!

Stay strong Jason and know that I am thinking of you and Andrea.

My very best to you both,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member -- Wife recently diagnosed with ICC

Hi,   Jason,

Sorry to hear the findings about your wife.
The rate of the tumor growing   (1 and 2.5 cm) in  the last 2 and half months seems relatively fast to me which similar to mine. The good news  is that there were no mets outside the liver,
While I was at Mayo last Feb., I asked the oncologist about the liver function and the metastatic  growth in the lymph nodes, which one should I worry the most?
He told me that the most important thing is to keep the liver function as normal as it can be,the mets are secondary .  So I guest it can apply to everyone who have this  cholangiocarcinoma.
Since your wife had IMRT done, what is the Stanford interventional  radiologist says about the use of radioembolization at this point  ? Can it be done?
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member -- Wife recently diagnosed with ICC

Jason,

Please know we are hoping the best for Andrea and for you. I am familiar with the aggressiveness of this disease. As a caregiver, you can never relax. You have to stay focused on dealing with the reality of each day while looking for alternatives for improved response to this disease.

You have done so much to research all scenarios regarding treatments and trials. You and Andrea will make the right decisions as you continue your journey.

I wish I could do more to help both of you right now. But I want you to know Lynn and I will be thinking of you.

Carl

Re: New member -- Wife recently diagnosed with ICC

Jason.....I can't add much other than my heart and prayers are with you and Andrea.  As so many have already said, there are still things to be tried and you have been a fabulous caretaker by researching the possibilities for treatment.  That's a job in and of itself.  Hugs to you both. 

Julie T

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: New member -- Wife recently diagnosed with ICC

Thanks all for the ideas and the encouragement.  We are not at all thinking about giving up, so not to worry on that front.

The basic plan is to do chemo and then either radiation or ablation on the (hopefully) shrunken tumors.  It sounds like they would lean towards ablation given the previous radiation and the potential for overlap (they are checking on this).

They thought there was evidence that Xeloda kept the tumors in check since Jan, so the plan is to start there and monitor CA 19-9 for a 6 weeks or so.  If it keeps rising, we will have an early scan and change strategy (tougher chemo or local therapy).

Jason

Re: New member -- Wife recently diagnosed with ICC

I just looked back at this and realized how much had changed since that last update.  They talk about the roller coaster, and it has been so true for us.  Unfortunately, the roller coaster has been mostly going downhill since the last update.

Starting in late June, Andrea started to have pain in her shoulder.  It turned out that this pain was "referred" pain.  The pain was really from one of the liver tumors pushing on the diaphragm, but her brain interpreted the pain as coming from her shoulder.  Andrea got another scan in early July that indicated there were now 3 tumors, and the biggest was 3.5 cm (the one causing the pain). 

The shoulder pain had been steadily increasing, and with the tumor growth the decision was made to switch from xeloda to GEMOX.  The hope was to shrink the main tumor away from the diaphragm to allow for easier local treatment.  Unfortunately, this did not work. 

About a three weeks ago, started to get bloating in her belly.  We first thought this was just constipation caused by all her pain meds, but eventually we figured out that she had developed ascites.  Not a good development.  Our oncologist said there were basically two possibilities for the ascites.  One was that the fluid was a reaction to the tumor that was irritating the diaphragm (this was the leading hypothesis), and the other possibility was that the cancer had spread to the abdomen. 

Andrea had a paracentesis procedure where they removed 3 liters of fluid.  They tested the fluid and determined that the fluid was malignant.  This basically meant that the cancer had left the liver, and progressed to somewhere in the abdomen.  Malignant ascites is not a good development.  About 11 days after her first paracentesis, she had another where they removed 5.2 liters of fluid.  The fluid build up is very uncomfortable, so she is now on a weekly schedule to try and keep it better controlled.

What is the plan?  Well the number of possibilities seems to be much more limited.  She has switched from GEMOX to FOLFIRI.  This has hit her hard after just one treatment.  Heavy fatigue and painful cramping.  It has helped the shoulder pain though, so perhaps it is working.  We will see what the tumor marker shows next week.  Andrea also had a biopsy done that was sent off for genetic testing.  We should get the results for that on Oct. 6.  I am hoping that the genetic testing finds something that we can either target with an off-label treatment, or qualify for a clinical trial.

So that is the update.  Lots of twists and turns.  So many have been negative recently, we are really struggling to try to stay positive.  Hopefully we will get some good news soon.

Best to all,

Jason