nikki4470
Forum Replies Created
-
Posts
-
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?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
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
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
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.
Just another quick update…my dad could not handle the gem/ox combo, so he is now just doing 3 weeks on and 1 week off of gem. We went 10/3 and they decreased his dose by 25% because of his platelet count. He will be done on 11/1. He will get a base line CT scan, then it’s just back for regular CT scans and blood work. His Doctor was not there, so we asked the nurse how often he would get scans and she thought maybe twice a year. I thought that was a little too spread out, so we will see what the Doctor has to say. His CA-19 is still hovering around 26 which is fantastic! Other than the chemo completely making him sick to his stomach, he is doing A OK! His Doctor called him 1 in 1,000! I find it very difficult not to keep worrying…I don’t want to get too excited, but I feel like we should celebrate his good health. We are very blessed and we thank God everyday for each day he gives to our family.
First CT scan post surgery and it’s CLEAN! CA-19 is normal! Best part of receiving the good news was seeing my dad’s eyes well up with happy tears for the first time in almost a year
He received his first gem/ox post surgery treatment…6 more to go! My dad is a walking miracle.Thanks Lainy! It’s funny how their taste buds change as well as their reaction to foods they have been eating their whole lives! I guess it takes a long time to figure out what works and what doesn’t! We talked to his ONC about his ailments and they did offer suggestions – talking to a therapist, a low dose anxiety medicine, seeing a nutritionist…he is on pain medication for the cramping, but luckily he has been able to decrease his dose overtime. He hates taking any kind of medication at all! Although they give him all this advice, it is only him that can make the decisions on how he wants to handle his ailments. He can be stubborn and mostly I think because he doesn’t want to come off as “weak”. I keep telling him how strong he is and that it’s okay to need help. The doctors said that a lot of the cramping is from his digestive tract healing and growing. We hope that is the case!
Hello CC Family!
Even though I don’t have much to report, I wanted to give a quick update because I know how much it helps for other people reading the posts on this board to hear good news.
My dad is closing in on 2 months post Whipple/Liver Resection and is doing remarkably well according to his wound nurse and his doctors at Dana Farber. His wound only has about two inches to go before it is completely closed. He will start his one cycle of chemo on July 25th. His first CT scan is July 23rd (which he is already pre-stressing)! His doctors at Dana Farber told him that he has so much to be thankful for and that he is exactly where he wanted to be when this whole rollercoaster started back in September of 2012. They are very hopeful that he CT scan will be clean. I know it will be too
He is gaining energy back and eating a lot more than he was. He has his bad days too – nausea, cramping, exhaustion, anxiety – but like I said to him, he has more good days than bad. He is going to start working again soon – he is a bartender/manager at our family owned Italian restaurant. I think this will help get him back into the swing of life and will take his mind of the C word.I can’t tell you how important positive thinking is. We are thankful for everyday and go out to the world with the attitude that we beat CC because we did and we will continue to do so!
Nikki
Hello!
I wanted to give a little update on my dad’s progress. We finally travelled back to Boston from NYC on 4/19. We met with Dr. Kato that day to go over all of his biopsy results…Dr. Kato informed us that exceptionally clean margins were obtained with NO lymph node involvement (after removing 19 all together)! Dr. Kato said that for my dad’s stage, he couldn’t have asked for better results. He was thrilled as were we! My dad is still recovering at home. His biggest challege remains the enormous incision. Unfortunately, the incision got infected a few days after surgery, so they had to remove the staples which left a huge open wound. He is starting to eat a little bit more too which is also a major challege after a Whipple. We will be going to a follow up appointment at Dana Farber to discuss follow up chemo on 5/14. We are so thankful for each and every day and want to remind everyone that there is hope and never to take no for an answer!
Nikki
Pam,
This is great great news! I love to hear these success stories. Praying for lots of liver growth and a successful 2nd surgery. Lauren is very lucky to have such a great Mom! Having a “partner” through this battle is invaluable. I talked to Dr. Sonnenday over the phone when my dad was first diagnosed…he is amazing.
Love,
NikkiThank you ALL so so much for all of your responses! I love posting to this board because of the support and great feedback I receive from all of you! It has officially been 2 weeks since the day of his surgery. He would have been discharged, however, his incision is still infected (which is common). Today he has to walk A LOT – Dr.’s orders. His pancreas is still leaking so he cannot eat solids until that is cleared up. My aunt is with him now. Hoping and praying that he can come home Friday as we have a pilot lined up from Angel Flights!
Laura – thanks for giving me an update about your mom…obviously hearing from someone that has also had surgery with Dr. Kato is invaluable. They watch over him at the NY Pres like a hawk. It’s a great hospital. I’m happy to hear your mom is progressing well…that is great news!
Lainy – I took your advice and told him how large this surgery is and that he has to give himself some credit!
Taking one day at a time…focusing on the positive – that he was lucky enough to be a candidate for surgery and that we found Dr. Kato through this amazing web-site. I don’t believe anyone else could have accomplished what Dr. Kato and his team did for my dad. He is truly gifted from God and the most humble man I have ever met.
Hello! My dad’s surgery was on 3/26. We arrived at the NY Presbyterian Hospital at 5:30 AM. Surgery began at 7:30, right on time. Dr. Kato estimated it to be about 8 hours. I made my way to the waiting room and was a nervous wreck until about 11 when I knew that they must have gone through with the surgery since 2 1/2 hours had passed. Around 3:30 PM, Sarah (Dr. Kato’s assistant), came out of the OR and my heart was pounding. She told me that they were not finished resecting the liver and that surgery was going to be about another 4 hours because they were going to go ahead with a Whipple. The tumor, to everyone’s surprise, was wrapped around the duodenum and to get very clean margins, Dr. Kato decided this was the best route. At about 9:45 PM, Dr. Kato came out covered in sweat with bloodshot eyes and told me the tumor was out and they got clean margins! I didn’t even know what to say…I think I just babbled a bunch of words that I hoped were meaningful. Dr. Kato resected my dad’s right lobe of his liver (including the atery), the gallbladder, the duodenum, the bottom portion of his stomach and the head of his pancreas. He had to reconstruct his portal vein as well. He removed some tissue around a nerve near his pancreas which is being tested. He also removed a bunch of lymph nodes which are also being tested. Although I am worried about the results of the tissue surrounding a nerve, I am beyond thrilled the surgery was a success!
My dad spent two days in ICU. He would have went to step down on the 2nd day, but he has a bateria in his GI tract (that most of the general population has) so they want to keep him away from other patients for their protection. Once a single room was available, he went to the regular floor. He has been doing okay. He started eating clear liquids about 3 days ago. He is on a lot of morphine because of the pain. Today we found out that there is a leak from the pancreas that needs to be resolved (apparently this is common). He does not have to be asleep for the procedure. Besides that, he is making baby steps. I keep reminding him that this is one of the most difficult procedures to recover from and that he is doing great!
It is tough having him in NY when we are from MA. I just came home last night. Today was the first day he had to spend alone and although my heart is breaking, I know he is being taken care of. My family will be back with him starting Saturday. It looks like he will be there till at least 4/12. If anyone has ANY advice or information regarding recovery from a Whipple, please share!! Thank you so so much for all of your thought and prayers that have got us this far!
Okay…a pillow for coughing and an Epideral…got it! Thank you SO much for your kind words and advice. It’s nice to have people that know what you are going through support you! Every time I read a response from all of you, I tear up!
Pam – what a crazy coincidence! I will be praying for Lauren while I pray for my dad in the waiting room. I agree, just having the opportunity is a blessing. It’s such a mix of emotions, but I always remember to keep it positive. I truly believe that positive thinking brings positive outcomes!
Surgery is scheduled for 3/26. Pre-op PET scan shows no mets. He passed the cardiac stress test. We are on our way! Any advice for post-op is welcomed! We are nervous and excited! Hoping his recovery is speedy one so we can get back home. Might have to spend Easter in the hospital, but it will all be worth it!
