Topic: Received bad news yesterday and looking for advice

Hello,

My dad receive a Whipple and partial liver resection with Dr. Kato at the end of March. He received gem as adjuvant chemo. His scan in July was clean, however his CA-19 had been rising in very little increments. Yesterday we were floored when the Oncologist at Dana Farber told us that he now has a significant amount of liver mets including a very large tumor on the side they resected. Of course we were shocked because since day one everything had been going in the right direction. They gave him a year and said no surgery, no radiation just chemo (folifornox). I don't understand why they wouldn't suggest anything like Y90 or radioembolization. I am sick to my stomach. I can't sleep or eat. I have been his caretaker and advocate and I was so happy when we thought we were coming to the light at the end of the tunnel.  I don't know where to turn. Do I get a second opinion? Where?  I just can't understand how the reoccurrence happened so quickly and the tumor grew to the size of a grapefruit from July to December. Please help me with suggestions. I am so lost. Please feel free to call me at 978-360-9613. Thank you so much.

Nikki

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Received bad news yesterday and looking for advice

Nikki,

I am so sorry to hear about your Dad.  And yes, I would suggest a second and maybe a third opinion.  I am sure that others will post soon with specific suggestions as to who to see or where to go.

Cancer really is a sock to the stomach as it sneaks up on us when we are feeling better.  I can relate to how you are feeling and just wanted to offer my support.

We are all here for you.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Received bad news yesterday and looking for advice

Hi
Try to get a multidisciplinary team of liver surgeon ,medical onc,interventional radiologist , and oncology radiologist for a 2nd opinion at Mass General or Sloankettering . You may have to specify the above specialties you need to see to get a complete picture of the tumor situation.
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: Received bad news yesterday and looking for advice

Nikki, I am so sorry, not the news anyone wants to hear. My suggestion would
be the same as above. I am wondering if Dr. Kato knows and if he could recommend anything. Are you all alone in this or do you have other family or close friends? We are here for support. You never know how strong you are until "strong" is the only choice you have!

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: Received bad news yesterday and looking for advice

I have family including 3 younger brothers, 29, 10 and 8. My parents are divorced, so I am the only one to take care of my dad in terms of getting him to the right Doctors.  Everyone else is more there for emotional support. They just don't know enough to help me with finding the right care. I just called MGH and am setting up an appointment. I also left a message for Dr. Kato's medical assistant who was in the OR during his surgery. I am in the process of filling out the new patient form for Dr. Javle. I didn't think about Sloanekettering. I agree in that we need a multidisciplinary team...I'm guessing Dana Farber doesn't offer that? Is folifornox used specifically for liver mets? If it shrinks these tumors, do they then use radiation?  I know he is never going to be rid of this cancer which is the hardest part to deal with. His one chanced to be cured was the initial surgery.  Still praying that God gives us a miracle so he can be around for his children. Thank all for getting back to me so quickly. It means more than you know.

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Received bad news yesterday and looking for advice

Nikki,
I also suggest you get second opinions. Getting an entire team together might require a lot of perseverance, but it will help. I never met with an entire team, but my onc and radiologist discussed my situation and I met with them separately.
I also think Dr. Katos team need to be informed.
Unfortunately, we don't know a whole lot about this cancer. I've heard some say it is extremely fast growing. My surgeon said the tumor in my abdomen was probably about 9 months old.
I am so sorry your dad has to go through this again. May I ask if he's feeling well? If so, he could also look into trials. There are so many promising trials out there now. Of course, that decision depends on the doctors suggestions.
I hope you can get a plan in place quickly. Please keep us informed.

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: Received bad news yesterday and looking for advice

He is feeling well except for some mild cramping which he's pretty much always had since the Whipple. His energy is definitely depleted - I think the cancer is consuming his energy. All other tests are normal. He continues to gain weight which is great. I just hope the folfirinox works. I just spoke with Dr. Kato's assistant and she is going to have him look at the scan when it arrives. A second surgery is not ruled out at this point. We will have to see what Kato says. I think it depends if he has enough healthy liver. I'm so lost and distraught. My dad is just crying sad

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Received bad news yesterday and looking for advice

It's tough. I allow myself a good cry and then shake it off. It's hard, tho. I think loss of energy is normal for all of us.
Does your dad have someone to talk to? Has he thought of trying Xanax or something to help his emotional problems? I used Xanax for almost a year. I still have some, but try not to take it.
Fingers crossed that Dr. Kato has a great idea.

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: Received bad news yesterday and looking for advice

Nikki, Teddy's ONC had him on B12 injections once a month and they really helped energy wise. Stay strong!

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: Received bad news yesterday and looking for advice

Nikki....you have much on your plate; I admire you for your commitment and devotion.  Your family has much to be thankful for.  Personally, I believe that everyone should undergo a resection (if possible) with a highly qualified surgeon. That has happened with your Dad.  Unfortunately, we see a high rate of occurrence with this cancer for both, non-resected and resected patients. 
Already, you have taken steps to obtain additional, professional opinions.  Hoping for you to receive responses real soon. 
I also wanted to mention that the below institutions fall under one umbrella (so to say) hence, you might also want to be referred to someone within the Harvard system.     
Beth Israel Deaconess Medical Center
Boston Children's Hospital
Brigham and Women's Hospital
Dana-Farber Cancer Institute
Harvard Medical School
Harvard School of Public Health
Massachusetts General Hospital

Please stay strong and continue to reach out to this great community for support, questions and answers.  We are in this together. 
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: Received bad news yesterday and looking for advice

Nikki -
We never saw a full complement of our team at any one time....ONC, surgeon, GI doc, interventional radiologist, etc but they do meet weekly here at Virginia Mason and when things were critical in the very beginning they did meet weekly and discuss his case. We were given updates from theses meetings afterwards from which ever one saw us next. That seemed to work pretty well since we got everything we needed in a timely manner. You may need to push people and push hard if you need to. Never worry about being a good advocate for your loved one.....we all have to do it.
Also if you don't understand something be sure to ask why....you may to ask several times but ask. We called a "time out" several times in the beginning to get us on the same page as the docs.
So sorry that things aren't going well right now but as we know this is a disease of up and downs.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Received bad news yesterday and looking for advice

Nikki-
I too am the daughter of a father who is dealing with the same cancer. Different situations, but similar feelings of helplessness. As his advocate/researcher/daughter/supporter, start at the beginning. It's overwhelming to know which avenue to explore/which doctor to contact/which resource to tap into for research. Just do one thing at a time. It worked for me. Make lists. Contact anyone and everyone until you get answers. Search through the forums on here for names of specialists. Call hospitals, ask for names, numbers, email addresses of doctors, nurses, and specialists. It's stunning and humbling how helpful and informative people (on here, in hospitals, etc)have been and continue to be. Mostly though, take care of yourself. And by that I mean try to sleep. Go outside and take a walk when you can. Just my opinion, but those two things usually keep me from totally losing my stuff! You don't realize it right now I'm sure, but having his daughter by his side to give him perspective and hope is your dad's fuel to fight this fire. If there's anything I can do, please let me know.
Kerry

Re: Received bad news yesterday and looking for advice

Hi,

Dr. Kato takes some of the most difficult cases of liver surgery. Therefore your father is in good hands. But on the other side of the coin,the patient may take a bigger risk too. Try to hear what Dr. Kato 's suggestion after he read the scan and decide the next step that you think, based on your dad's current condition,you will do.
The chemotherapy of "FOLIRINOX" right now is using much more than before as a 2nd line chemotherapy after GEM/CIS. In my opinion, it is a tougher regimen.
Why they were not recommend Y90? may be the multidisciplinary team did not involved the interventional radiologist but only the oncology radiologist.

I agree this disease is tough if patient does not have that much options; but equally tough or even tougher is when a lot of options are available and that is why we, as patients or caregivers have to study ,to read others' experiences, and to keep up to date with the new development to find the best way to treat each individual case.

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: Received bad news yesterday and looking for advice

Thank you all so much for taking the time to read my post. I honestly do not know what I would do without your support...it really is priceless. The CT scan is already on it's way to Dr. Kato so he can tell us if a second surgery in the future is ever possible. We knew what the risks were and we knew the reoccurrence rate, however, it is just shocking at how quickly and aggressively the cancer came back. I say this because of his wonderful results from surgery and the adjuvant chemo regimen.

Percy - I will ask his oncologist if she has consulted with an interventional radiologist. The thing that frustrates me is the fact that I even have to ask.  You would think they would automatically do this without the patient having to request it be done.

I talked to Dr. Javle via email. He suggested that I look into getting a genetic sequencing done by FoundationOne. What a blessing he is getting back to me in less than 24 hours. He said he was confident Dana Farber was on the right track with the next chemo regimen.

I'm trying to take one day at a time, but my head is spinning. I'm obsessing about getting him on an anti-cancer diet, stressing about him getting exercise, worrying that he isn't going to go back to tong ren healing....all I think about all day is my dad and cancer. I'm angry because he deserved a longer break from all of this. It still doesn't seem real to me because he is feeling better than he has. I don't get it.

Thank you all again.  Sending love and hope. 

Nikki

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Received bad news yesterday and looking for advice

Dana Farber gave my mom our 5th opinion...said she had a Klatkins tumor (she did not) and said she was inoperable....(they were wrong) we sought out Dr. Chapin in St. Louis. We simply called sent our records and the team of doctors viewed everything with out even getting insurance info?? Cost us nothing and ended up saving my mom. She had her resection and is undergoing chemo. She is doing great. Give Dr. Chapman a call and speak to Heather. Mention my name (Rosetta, Rose Famiglietti's daughter) they will help you. Feel free to call me anytime 850-836-2600

I really thought Dana Farber was the best we were VERY wrong. I am curious if it was the same doctor. We saw Dr. Enzinger

Re: Received bad news yesterday and looking for advice

Hi Rosetta,

I almost got sick when I read the last sentence, as my dad is under the care of Dr. Enzinger (the female as her husband also works at DFCI).  When we first went there we were seen by Dr. Abrams and Dr. Enzinger and now we just see Dr. Enzinger.  Before my dad had surgery they didn't tell us whether surgery was an option or not, they just said they didn't recommend it which I didn't like. 

Our last meeting (after we found out the cancer came back) she didn't sound too keen on radiation or surgery, just kept saying sorry over and over instead of giving us hope and coming up with solutions to fight.  I have reached out to Dr. Javle at MD Anderson (oncologist).  Before my dad got surgery with Dr. Kato at NY Presbyterian, I had consulted with Dr. Chapman who said that he didn't think surgery was an option at that time.

I'm hoping I'm on the right track (sending the latest scan to Dr. Kato) and reaching out to other oncologists for a second opinion.

I tried to contact you at the number you listed, but it didn't work.  If you are able to speak, I would love to chat. 

Nikki

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Received bad news yesterday and looking for advice

So sorry my cell is 860-836-2600 please call

Re: Received bad news yesterday and looking for advice

Nikki,
Sorry I am late posting to this. I agree with a multidisciplinary approach. I am treated at the Cleveland Clinic and they use this approach. This cancer has such a high reccurence rate, I have had 5 reccurences and each time I just tell myself it is a chronic illness. I pray you find the right team of doctors for your Dad. You sound like a wonderful and caring daughter. My phone is 330-903-6868. Call anytime you would like to talk.
Hugs
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: Received bad news yesterday and looking for advice

Dear Nikki,
I too, am a patient of Dr. Kato's. He did a partial resection for me in January followed by y-90 in February. His IR guy is the best, Dr. Sperling. They are a great team. I think if he did not suggest y-90 there must be a very good reason. It does not cure the disease either, merely puts it off till midnight, like Cinderella. It is also not at all easy on the body. What is hard to take is that this is not really a "re-occurrance" like we think of the word, as in went away and then came back from nowhere -- the disease has microscopic origins that we cannot see until they grow into measureable tumors. Your Dad's whole liver was already "seeded" with cc cells before the surgery. So the "re-occurrance" rate is a bit misleading. Dr. Kato was always very upfront with me that the surgery he was doing for me was palliative, to get rid of the one big tumor so I could fight the disease more effectively. I would be less than honest if I didn't say I was hoping for a cure or a complete remission or whatever. We knew there was disease left in the liver but Dr. Kato wanted enough viable liver tissue so I could go on fighting. So resection is only a cure if the disease has not gone to mets to the liver, and by that is meant the individual cells that we cannot see and do not know if they are there or not. But if you have even one tumor plus one tiny little other tumor, it has already spread. I am so very sorry about the roller coaster of hope and despair that that you have had to travel. Sometimes I think the emotional toll of the disease is the hardest. I hope this is helpful and not too depressing. Call me if you want to talk about kato and team. I have been there and still consider myself a happy patient of his. 202-907-3568  Holly

Re: Received bad news yesterday and looking for advice

Hello,

We are still trying to deal with the shocking news, but I am working diligently on trying to stay on top of his treatment.  His scans are to arrive at Dr. Kato's office today to get his thoughts.  Also, we are meeting Dr. Zhu at MGH for a second opinion.  My dad's current Dr. at Dana Farber told us that she isn't going to pull in an interventional radiologist or a surgeon because she doesn't think it's an option at this point.  I did not like this response, so I decided to search elsewhere for a Dr. that is going to work with other specialists.  I also have contacted an organization that is made available to me through my company called "Best Doctors."  They gather all of your medical records, upload it onto their systems and the top Doctors that specialize in BDC in the country will give you their opinion(s).  They also put all of your records on a USB drive for you. 

My dad has had one round of FOLFOX and has finally bounced back from treatment.  We don't have a scheduled CT scan at this point, but will probably have one after a few more treatments.  I am so confused because I pulled up his blood work and his CA-19 was pretty normal at 33.6 and CEA at 2.1.  His liver function tests are all normal too.  The CA-19 reading is a reduction from last reading and he hadn't even received the 1st round of FOLXFOX at this time.  My dad's CA-19 has always been a good indication of his situation, so I'm not sure why it's reading normal when he supposively has a "6.7 x 4 cm heterogeneously enhancing lesion
is noted along the resection site and multiple ill-defined hypodense
enhancing lesions measuring up to 2.3 x 1.9 cm scattered
throughout the liver".  Do they just assume these are cancerous without taking a biopsy?

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Received bad news yesterday and looking for advice

Nikki NOTHING should ever be assumed. Don't know much about Dana Farber except that others have sought other opinions who went there. Please do me a special favor and please take a break with your family for the next 2 days. Enjoy to the fullest, make Memories and sing, laugh and eat and enjoy your family. You will start again all recharged, one must do that once in a while. The Company you work for must be outstanding to do all that to help their employees. Good luck on it all and you know already....keep us updated. In the meantime wishing your family a Happier and 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: Received bad news yesterday and looking for advice

Thanks Lainy!  I will continue to seek out second, third and fourth opinions - i think I am on the right track.  I have been told a lot lately to take care of myself...I am trying!  I started this weekend by getting my nails done for the first time in a long time.  I promise to enjoy the holidays, so I can recharge my batteries!  Wishing you nothing but health and happiness in the coming new year.  Thanks for always being the first one to respond smile

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Received bad news yesterday and looking for advice

Nikki I remember when Teddy's Grandkids all got together and got me 3 Massage certificates. Best gift ever! I know you and your nails will enjoy being pampered.

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: Received bad news yesterday and looking for advice

Hi, Nikki,

may be you can e mail him to see what he can do for you ?

http://www.cholangiocarcinoma.org/punbb … 979#p76979

I had a CA19-9 value of 37 when I had my first resection of a 5x6cm tumor.
Now, for the third recurrence, I had microwave and cryoablation to burn off the tumor and on Tarceva, There were no tumors but some inflammation left at sitem ofm the procedure;the PET scan after 8 weeks looked overall "stable" but CA19-9=61; await next scan in Febuary,2014 and as always, I have make arrangement to get a second opinion at Mayo Clinic in next January,2014 and a up coming medical oncologist 2nd opinion at  University of Chicago.

It is indeed a roller coaster ride for sure.May God's Grace be with you and your father during this holiday season.

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: Received bad news yesterday and looking for advice

I wanted to share our progress so far and a little bit of good news.  My dad received his first round of FOLFOX on December 12th.  During his second treatment on December 27th, he had an allergic reaction to the Ox and had to discontinue treatment after only 20 minutes.  We had to be transferred to Brigham and Womens Hospital, so that they could monitor him for the next 4 hours before sending him home.  He went home with two days worth of steroids and amazingly, these took away all of the lower abdomen pain he had been experiencing since he was diagnosed.  It is my thought that these somehow reduced the inflammation he was having which I related back to his records stating that he has mild diverticulitus and colitis.  On the 8th, we went for a second opinion at MGH and met with Dr. Zhu who was the most compassionate, intelligent and patient Doctor we have met with thus far.  He did state that the treatment of FOLFOX was the right move, but he also said that he has a lot of "tricks up his sleeve" for treatments.  He heads up many clinical trials and does a lot of research specific to CC.  He did say my dad is just one of the unlucky ones that not only had it come back so quickly, but also aggresively. 

Because of his allergic reaction to Ox, he now has to be tested for the true allergy.  Then we have to decide whether or not he wants to be de-sensitized.  This means either a very long day in infusion or even inpatient infusion (depending on if we continue at Dana Farber or switch to MGH). 

My dad is having infusion as I type this, but it is only F-5U. 

I wanted to start this paragraph off by saying THANK YOU to Percy.  A few weeks ago, I sent my dad's CT scans to Dr. Moeslein from the University of Maryland.  He just called me a few minutes ago and said that my dad is a great candidate for radioembolization.  This had not been offered to us at Dana Farber.  I asked Dr. Moeslein why and he said because a lot of hospitals do not want to take the risk because they do not have a lot of experience with this procedure.  Dr. Moeslein said that this isn't a short term (say 6 month) fix, but that it has the ability (with good response) to produce long term results.  He has one patient that was in a situation worse off than my dad that is 5 years out because of this procedure. 

I have yet to share this news with my dad, but hopefully once he talks to Dr. Moeslein (who gave me his cell phone number and said call anytime!) he will be excited about this opportunity. 

I know I say it all the time, but I can't stress how important this board is to us and how grateful I am that it has connected me with some of the most amazing people that have let me into their lives and shared their stories with me.

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs