Topic: Newly Diagnosed

Hello Everyone!  I am so glad that I found this website.  My 59 year-old husband, Ron, was recently diagnosed with Stage 4 inoperable Cholangiocarcinoma, which has spread to the liver.  There was no other presence of cancer in the body according to all the scans.  One lesion on the liver was 10 cm on the original scan with several smaller lesions on the other lobe. It took nearly a month to determine the origin of the cancer and finally a regimen of chemo was started this month.  Before chemo was started Ron was nauseated most of the time, smells bothered him, he suffered from pain, and lost 15 lbs.  After his 1st chemo treatment he felt great.  Pain and nausea are rare.  We live in a small rural area in ND and are seeing an Oncologist in Bismarck, ND, whom we have a lot of faith in.  However, he is telling us that the cancer is not curable and chemo will only prolong Ron's life for 2-5 more years, unless of course he can get his cancer into remission.  Dr. was impressed how much the lesion shrunk after only 1 treatment.  If blood levels continue to look good, Dr. may increase his chemo treatments to once a week for 3 weeks with 1 week off, instead of the present 2 weeks on, 1 week off.   It seems to me that since the cancer was not found in the lymph or anywhere else other than the liver, Ron's chances of survival should be higher than average.   Dr. did refer us to Mayo Clinic in Rochester for a 2nd opinion but Mayo wants Ron to go through 3 months of treatment and have new scans done before coming to Mayo.  In 5 weeks we'll be leaving for our winter home in the Sun City, AZ area and will need to start with a new oncologist.  None of our doctors in Bismarck are familiar with any oncologists in the Sun City area.  Does anyone in this Forum know of a good hepatic oncologist in this area?  Here are some other questions I have:
1.  If the treatments shrink the tumor enough can a resection usually be done?
2.  If the treatments are successful is it necessary to get another opinion?
3.  How long do patients usually undergo chemo treatments as in Ron's case?  Months?  Years?
Thank you in advance for any feedback.  I'm learning a lot reading everyone's topics.  Godspeed!

Re: Newly Diagnosed

Hi,
Tobe honest,since you husband ,Ron, had tumor involvement in both lobes of the liver. The best answer to question #1 is  to get rip of the  small tumors in one lobe by RFA ablation if the size of each <3cm each and the number is no more than 3-4 tumors. It is possible that if the systemic  chemotherapy works well, you may not need the RFA treatment and , the little tumor will be gone too and become clear of tumor of the one lobe. If that will be the case, and your big tumor is shrink big enough too because of the chemotherapy works, then resection may be possible after they try to regenerate  bigger your healthy part of the liver; and that ,I think will be the best outcome.
For question#2, the answer is no.
For queation#3,for adjuvant chemotherapy usually will administer till tumor progression or untolerable side effects occur. In general, 6month to a couple years with chemo breaks in between.
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: Newly Diagnosed

Hi Snowbird, sorry I saw your other post \first so now I will try to answer this one. YES, we have had members DX Stage IV had chemo and were able to then have surgery. We have learned not to listen to time frames as we were not born with expirations dates stamped on our feet. One needs an ONC and a Hospital who are experienced in CC.  Like I said we have had members in Stage IV who did get surgery after chemo.
We always urge 2nd and 3rd opinions. We never know how long the treatments take as it depends on Scans to guide the ONC and then it is his decision. One learns to be very patient with CC and you must be very strong!
I am in Gilbert the other side of Phoenix but it doesn't matter if you care to meet we can meet 1/2 way. I am not familiar with ONCs in the Sun City area. Downtown is not that far with our wonderful expressways. Let me now if I can be of any further help.

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: Newly Diagnosed

It's been a while since I've updated Ron's status.  Before we left ND in late October, Ron's ONC did a new CT scan.  This was after only 5 chemo treatments of Gem/Cis.  The scan indicates that the chemo is definitely shrinking the large tumor (now 8.2 cm), down from 10 cm from the original scan.  The other small lesions have remained stable or shrunk some.  This sure was great news.  Although we have been happy with the treatment so far, this ONC gave us very, very little hope of Ron ever having surgery or any other treatment, other than palliative chemo.  On Oct. 28th, Ron saw his new ONC in AZ for the first time, Dr. Choi at the AZ Center for Cancer Care.  And wow, what a difference in attitudes!  He specializes in hepatic cancer and stated that he's had 4 patients with CC in the past.  He mentioned all kinds of treatments that he will offer Ron in the event that he will need them.  Our heads were spinning when we left his office.  Instead of being told that Ron might live another 5 years, we were told that NO ONE comes into this world with an expiration date and he will do anything he can to keep Ron alive and feeling good. 

We were very impressed with Dr. Choi.  He came highly recommended from my hematologist here in AZ and I can see why.  The infusion lab is much different from what we were used to back in ND.  Now I know that they spoiled us back home!  Here there are no volunteers that bring you snacks, soda, water, ice cream, etc.  At the AZCCC infusion lab, it is a community setting where all patients pretty much sit around the oval shape of the room.  There is no privacy, no personal tv/headphones, and no way to dim the lights in your cubicle, which is what it was like in ND.  Ron doesn't seem to mind and maybe he'll meet some new friends this way.  Both places take good care of him so no complaints with this part.

Dr. Choi mentioned something that I've not heard of before..... perhaps some of you have???  He said something about a Dr. at Sloan/Ketterling in NY has invented some type of pump that they surgically place in the abdomen.  He mentioned that there are only 3 doctors in the US that have been trained to do this surgery.  One of those doctors is in Tucson, but Dr. Choi said that it is a very touchy surgery and he would recommend going to S/K if we would opt to have this surgery.  He mentioned something about "finances" so I'm sure the procedure is not covered by insurance.  I am going to have to ask more questions about this next time we meet.  We were just so overwhelmed with everything he was telling us at that first consultation that neither of us could remember what it was called.  He talked about emobilization, radiation, etc. 

Ron has been doing quite well with the Gem/Cis treatments so far.  Last week after we flew from ND to AZ he ended up having nausea for 3 days, before he had his next chemo treatment (last Friday) and he's been good ever since.  He's been fighting a head cold for about 10 days now and is almost over that.  This really threw him for a loop.  It seems that he feels great on days 1-3 or 4 of chemo and then exhaustion sets in.  So far he has never experienced any jaundice but he has some itching on his lower extremities.  So overall, he's handling the cancer and chemo quite well.  His liver enzymes are normal now, but the CA 19-9 is still quite high.  Hgb has been staying steady around 9.0.  He's had 2 shots to boost his WBC count and platelets haven't been affected so far.

Dr. Choi's plans are to continue the chemo treatments for 4 more weeks with one week off in between and then do all new scans, including a PET scan.  Then we'll see what he has in mind.  Could be a merrier Christmas than what we expected!

Re: Newly Diagnosed

Welcome back Snowbird. Is it not beautiful here! I am glad to hear Ron is doing so well as you know we love the word Shrinkage and the word Stable.
If you ever feel inclined to meet up somewhere in between let me know. In the meantime enjoy Ron's good report and the weather. Thanks for updating us.

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: Newly Diagnosed

Hi Snowbird,

I'm being treated at Sloan Kettering and I think I know the pump you're talking about.  It's not part of my treatment but I've heard about it through Sloan.  If we're talking about the same thing, it's called Hepatic Arterial Infusion (HAI).  There's a medical oncologist at Sloan, Dr. Nancy Kemeny who's office may be able to direct you to the surgeon who does it at Sloan. 

If you go on the Sloan website (MSKCC.org) you can look up Dr. Kemeny's contact Info.

I hope this helps.

Peace,
Mary

Re: Newly Diagnosed

I believe that Kris, our Moderator has or had that Pump and Doctor.

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: Newly Diagnosed

Hi, yep I have the pump but I no longer use it nor do I have Dr. Kemeny anymore. I am so glad to read of good results! And you must be enjoying being away from those ND winters!!
If you check my name you can find a topic about the hepatic liver infusion pump. You can also call and ask me anything you want to know about it. And I will tell you this... I LOVE LOVE LOVE Dr. Fong (my surgeon), but don't miss Dr. Kemeny at all. She is brilliant but unfeeling.
Briefly... It is a pretty major surgery, with restrictions for the rest of my life. No baths, jacuzzis (anything to raise body temp), running, scuba diving, etc...
The treatment is easy. 5-15 min. to empty and replace fluids in the pump. Maintenance is every 8 weeks. While getting chemo, it is every 2 weeks. If you can get the pump working, the chemo used is really really strong, so it kicks butt! Unfortunately for me, it proved too toxic for my body. There are others that could handle it, though, and got wonderful results.
Call or email me and I can give you more info. Entail is kris00j@gmail.com and phone # is 267-625-9873.
I hope this helped a little.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Newly Diagnosed

Thanks for the replies.  Yes, this is the pump Dr. Choi was talking about.  He also mentioned Dr. Kemeny.  While Dr. Choi has great respect for her intellect, he insinuated that she wasn't much of a people-person.  Dr. Choi told us that Dr. Kemeny sees 50 patients a day and only spends 10 minutes with each one.  There is a surgeon in Tucson that does this surgery also.... but he's quite new at it and says it sounds like one would want a very experienced surgeon for this.

Yes, we are definitely enjoying the AZ winter.  We are so blessed to be able to spend our winters here!

Take care!
Judy

Re: Newly Diagnosed

Judy, Dr. K sees more than 50 patients a day. On average, I saw the team (who are great) and they asked all the pertinent questions... How are you feeling?, bathroom issues?, dizzy?, nausea?, etc... Then they went over it with Dr. K. She then would come in and either say "everything looks good. We will continue." Then exit. Or "there's a problem." It everything was good, she was an 8 second onc. If there was a problem, she might be a 10 min. onc.
I always attributed her lack of compassion to the fact that she pretty much deals with patients with a poor prognosis. Many of her patients are sick. I figured she didn't want to get to know anyone when many of her patients don't last a year or more....
I started to feel that she lost interest in me after the pump proved too hard on my body. So I eventually changed to another facility where I love my onc! It is so refreshing!
Good luck with your decision. I am not trying to sway you one way or another, but be prepared for Dr. choi's description to be politically correct.
Take Care,

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Newly Diagnosed

Thank you, KrisJ & Lainy.

Re: Newly Diagnosed

I forgot. My surgeon is Dr. Yuman Fong. I LOVE LOVE LOVE him!! He is the main reason I stayed at Sloan Kettering so long.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Newly Diagnosed

Thought I'd give you an update on how Ron is doing.  He just finished Round 4 of Gem/Cis since first being diagnosed.  2 of those rounds included 3 weeks/1 off.  Last week his RBC count was super low so they gave him 2 pints of blood, which helped tremendously.  All other counts have been staying pretty good.  CA19-9 started out >6000 at diagnosis, climbed to >8000 and has been steadily dropping since then.  Right now it's down to around 2000.  His biggest complaint now is neuropathy in his feet.  It has been getting worse and worse.  Now his Dr. says he has to stop the Cisplatin after today's treatment.  Last week he was sick for 3 days with vomiting and nausea.... couldn't even keep water down the 1st day, then on the 3rd evening it just disappeared and the next day (yesterday) he felt great.  Strange!  Dr. says it was probably an intestinal virus.  Dr. says that the 2nd most favorable chemo regimen is also noted for causing neuropathy so he doesn't want to use that either (Oxy?).  So.... next week Ron will have an MRI and PET scan to see how things look.  Hopefully the cancer hasn't spread beyond the liver.  Dr. wants to start targeted chemo to the liver.  I'm assuming this is chemoembolization?  Can anyone tell me .... is this type of treatment widely accepted as the most logical next step?  From what I've read online, a Radiologist performs this procedure.  How often do they do this... like once a month or something like that?  I sure wish there was no neuropathy because the Gem/Cis has been working well and Ron has tolerated it well for the most part.  Hope you all had a blessed Thanksgiving!

Judy

Re: Newly Diagnosed

Hi Judy!

I was diagnosed Oct 2012 and did 4 rounds gem/cis and had great shrinkage. But the truth is that once there are mets to the liver they will always be waiting. I did y-90 and resection surgery last February and blasted every tumor out of there. But about 7 months later I have a whole new "crop" of little tumors. That's what the problem is with this disease. I don't think I have ever heard of it going 'INTO REMISSION' but maybe someone out there knows more about that. The main thing to do is try to keep your general health up, the tumor burden down, and keep the cc from going anywhere else. But sadly, mets to the liver mean it is microscopically all through the liver already. Chemo regimens can work from months to years depending on the person and there are different kinds, radiation can kill and shrink tumors, and surgery can de-bulk the liver of tumors. The newest things and no doubt the wave of the future are the targeted therapies that try to get in the tumor's way of growing and building its blood supply, or just growing in size,......or things that actually work with the body's immune system. There are lots of clinical trials, but we are just not quite there with a cure yet, though ever-hopeful for a miracle.......   Holly

Re: Newly Diagnosed

Thanks for your input, Holly.  I've never really heard of remission for this disease either, except from Ron's first Dr.  I think he was just saying that it's possible the tumor could stop growing after enough therapy.  But I know this is rare.  This targeted chemo sounds more promising as far as all the bad side effects.  I'll update this board when we find out more in 2 weeks.
Judy

Re: Newly Diagnosed

Here's an update on what's going on with Ron's CC.  He finished his 5th round of Gem/Cis 3 weeks ago.  The Dr. is stopping the Gem/Cis because Ron is experiencing moderate neuropathy in his feet. Ron has been feeling great for the last month or so (maybe because it's been 2.5 weeks since he had his last chemo) with the exception of the neuropathy.  An MRI and PET scan were done last week.  We have not seen the results yet, but were informed by a nurse that the cancer has not spread anywhere beyond the liver, so no change.  We will find out on Monday if and how much the large tumor has shrunk since the last scan 2 months ago.  Ron will be starting Xeloda next week.  We are waiting for it to come in the mail.  I asked the Dr. if Ron could still have the Gem, but he said he didn't think the combination would be of any advantage.  Is this the norm?  I have seen on this site where others receive a combination of Gemzar and Xeloda.  Future plans are to try and get the tumor shrunk down more and then go with the Y90 procedure.  Dr. says that Y90 is usually not recommended for a patient "with as much disease" as Ron has.  The previous scan indicated the large tumor was about 9 cm wide.  For now, Y90 is planned for the end of Feb.  Lainy - do you know what doctors perform the Y90 procedure in the Phoenix area?  Our kids will both be here for Christmas and we are thankful for that.  Merry Christmas everyone!

Re: Newly Diagnosed

Sorry, it took a little time to research. I GOT HIM! THE BEST

His name is Jon Kresl and he did Teddy's radiation and CYber Knife.

Google   Phoenix Cyber Knife & Radiation ONC Center

There are few on there but he is the absolute best!!!!

Y-90 is done at 3 hospitals all in the Banner Network (mine)

602.441-3845   If you get in please mention Ted Sardina who had Cyber Knife with him. He is not only a great ONC Rad he has a kind bedside manner. I believe he is at Banner Good Samaritan downtown. Actually he is head of the department.
Good luck and please let me know.
Have a wonderful Christmas with the family and if you ever want to meet let me 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: Newly Diagnosed

Thanks, Lainy.  I'm going to bring this up to Ron's doctor.  The Banner hospitals are all covered through our insurance so I'm guessing the cyberknife procedure, if needed, would be covered.  I will certainly mention Teddy if we end up with Dr. Kresl.  I see that he is associated with several hospitals in the area, including Arrowhead, which is nearby.

Do you know.... is the cyberknife procedure used very often with CC?  Ron's CC is only in the liver, but he has more than one area involved.  It seems like a more viable treatment than chemo.  Perhaps they want to keep shrinking the tumor before they use any type radiation?

Does anyone have any thoughts on 2nd line of chemo treatment being Xeloda only?  I know we're limited because of the neuropathy :-( 

Again, thank you Lainy for all the information you provide to everyone!!! You're a Godsend!

Judy

Re: Newly Diagnosed

Judy, on Cyberknife, the tumor must be under 7cm. T's was 7cm so he had to have 5 weeks of radiation to get it right under 6cm. The radiation was not bad he just got very tired at the end for about 2 weeks. Then he was fine. Then they waited another month to let the radiation work and then he had the Cyber Knife. The C.K. only took 4 sessions and was done in one week. The only side effect he had was tiredness. They would give him something for nausea but fortunately he never got sick. It is a miracle if it can be done. Marion posted quite an article on C.K. today that made me feel so good as it validated for me once again that we did all we could. If you can Google Cyber Knife and it will tell you a lot about it. It is a newer treatment and quite interesting. I got so excited when I saw all the fabulous things they said about Dr. Kresl. He is honest and upfront. I used to laugh a little as he is a tall man and T was 5'5" and he would pull his little stool right up to T and I called them Mutt and Jeff. Oh I almost forgot I believe there cannot be a mass of tumors or they cannot do it. Guess it works best on 1 tumor. At least I think that was it. It actually started out for brain cancer. Good luck and please let me 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: Newly Diagnosed

Judy,

I think they do y90 for pretty large tumors, but it might depend a bit on where it is situated.  At diagnosis, my wife had a number of tumors, the largest of which was 9cm.  The plan at the time was to use y90 if chemo did not work.  I don't think size would necessarily prevent the procedure in Ron's case.

As far as combining gem and capecitabine (xeloda), there has been some research on the combinations.  This chart has references to lots of the chemo trial research:

http://www.discoverymedicine.com/Daniel … jhtml?id=2

GemCape and Gem/5FU are the ones relevant for your question.  It looks to me like the combination does have a reasonably good response profile. 

Hope that helps,

Jason

Re: Newly Diagnosed

Judy,

I'm glad that Arizona is agreeing with you! My PET scans are continuing to improve. Weather here in ND has been cold. I ended up with influenza A a week ago or so, and man did that throw me. I'm feeling much better now. I have been keeping you in my thoughts and prayers. Merry Christmas!

Shari

Re: Newly Diagnosed

Thank you, Jason for your input.  I am going to ask Dr. Choi about doing a combo.  Since I last posted, we were able to get a copy of Ron's PET scan report.  It indicates that the tumor has shrunk by 2 cm since the beginning of August, so we are happy with that.... for now.  Since they took Ron off the Gem/Cis, the  neuropathy in his feet has improved greatly.  This, we are extremely thankful for!  Ron started Xeloda yesterday.  Prior to then, it had been over 3 weeks since he had taken any kind of chemo drugs.  We're praying that nothing grew by leaps and bounds in those 3 weeks.  The radiologist says that there is still no activity anywhere else in the body besides the liver EXCEPT in the neck of the gall bladder.  Dr. Choi told us that the cancer hadn't spread so we need to discuss this activity at Ron's next appt. on Dec. 30th.  If the Xeloda continues to shrink the large tumor then Y90 is planned for March or April.

Good to hear from you, Shari.  We've been thinking about you too and hoping that you not only continue to be cancer-free, but staying warm also!    I'm sorry to hear that you had the flu.  I have read on FB that many churches in that area cancelled services because so many were sick with the flu, but I don't think it was actually Influenza.  That's the last thing you needed!  Glad you're feeling better now.  We sure are enjoying the beautiful weather here.  Take care and enjoy the rest of your holiday.  Merry Christmas!

Re: Newly Diagnosed

Xeloda only lasted a day and a half.  Ugh!  Ron was very ill from the new chemo drug... couldn't keep any food down.  Doctor had Ron stop the Xeloda and come in for hydration and infusion of anti-nausea drugs.  This helped tremendously but once again, Ron is not on any treatment regimen... now going on nearly 4 weeks.  Plan now is to travel to Sloan-Kettering for an HAI pump to be "installed" in the abdominal area and have targeted therapy every 2 weeks since Ron has been unable to tolerate any of the systemic drugs.  Ron has an appt. with his onc on Monday and hopefully the referral to MSK-NY will be expedited.

Blessings to you all for a happy and healthy new year!
Judy

Re: Newly Diagnosed

Dear Judy, so sorry about everything going on. I am relieved though that you will be going to MSK and wishing you the best outcome! Also wishing you a much healthier New Year!

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: Newly Diagnosed

Judy....so good to hear that another game plan is in place for Ron and that you can enjoy the New Year chemo-free.  Looking forward to hearing about the upcoming Oncology appointment.
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