Received bad news yesterday and looking for advice
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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.
KerryNikki –
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
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 HospitalPlease stay strong and continue to reach out to this great community for support, questions and answers. We are in this together.
Hugs,
MarionNikki, Teddy’s ONC had him on B12 injections once a month and they really helped energy wise. Stay strong!
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.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
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.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.
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!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.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-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
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