Received bad news yesterday and looking for advice
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Wowser, Nikki, what a Journey you and Dad are having, something new and different with every turn of the corner and I feel all for the good. I am not sure how experienced Dana Farber is compared to MGH, But I am sure some of our family will give their great advice. I like the sound of this new ONC! You are the best asset your Dad has in this fight. This is why we order sons and daughters! I know you are going to keep us posted and I am sending much love and good wishes!
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.
Hi, Nikki,
may be you can e mail him to see what he can do for you ?
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=76979#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.
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.
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
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.
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?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 HollyNikki,
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
LisaHi 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
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
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
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.
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