Hello – Introduction and important message about 2nd opinions
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I had the same issue with cold affecting my fingers – especially taking food out of the freezer – when I was on FOLFOX6. It gradually lessened over a week or so. Am now on irinotecan which is part of the FOLFIRINOX it seems.
Sounds like your Mayo team has the experience and a plan to get you through this. Hang in there.
Duke
Hi Todd,
Welcome to the site. Sorry that you had to find us all here and I’m sorry to hear what is going on with you right now. But I am so glad that you have delurked now as it were and joined in with us here as you are in he best place for support and help and will get loads of both from all of us here. My thanks to you as well for sharing everything that has been going on with you as I so know that it will be of great use to everyone.
Yep a second opinion, a great idea and so glad that you sought one out! Really not much that I can add to what the others have said to you but I wanted to stop by and welcome you here. I do hope that you get some good news in your upcoming visits with the med teams and please let us know how that goes. Looking forward to hearing more from you.
Best wishes,
Gavin
exactly, seek for another opinion! and good to know you’ve come to Mayo.
My dad’s tumor was also 2cm, klatskin tumor, he had a resection 9 days ago. I’m also going to ask for another opinion about his bile leak and further treatment though we tend not to do any chemo. afterwards.
things can be solved with good people around, I hope you’ll be treated by the best doctors in the USA. All the best for you. You sound like a very strong man, like so many people here too. Such people are sure a source of my admiration.
Hi Matt,
My tumor is 2 cm and I also have two lymph nodes compromised right outside the pancreas.
My cancer marker in Arlington was 353 and when I took it at Mayo ten days later it was around 275. They explained at Mayo that it didn’t necessarily go down, but they do the testing slightly different which could cause to be a bit higher and/or lower.I was super impressed with Mayo. That’s one of the reasons I have such a positive outlook on things. It’s one of those cases where you wish you had a video camera on your forehead so others could see what type of experience it was because they tend to think your exaggerating when you tell them about your experiences.
I’m doing my chemo in Arlington, VA so I can be closer to my family. My surgeon at Mayo reached out to my oncologist out here and they actually both previously worked at the cancer center in Houston (I think) and know of each other which is good.
Good Luck this week at Mayo.
Todd
I’ll travel back out in late June for additional tests and most likely (knock-on-wood) the Whipple.
I’m fortunate that my wife grew up in Rochester (her dad was a doctor there and her mom still works there as an interpreter.) so my wife and kids will come out there a week or two after surgery.
Todd
Todd,
Welcome – I’m sorry you’re here but glad you found us! It sounds like you’ve got a solid plan and imagine that you’ve been as impressed with Mayo in Rochester as I have been.
Have you been given an estimate on the size of your tumor?
Did they test your blood for any cancer markers such as CA 19-9? If so, what’s it looking like? If not, ask them to…
I’m in Rochester this week for testing – where are you doing your chemo? Locally in Arlington or at Mayo in Rochester?
Feel free to reach out any time – having others to talk to can be really helpful. If you’re on Facebook, feel free to “Friend” me.
-Matt Reidy
Todd, Wow…..the power of the 2nd opinion strikes again. Kudos to you for realizing that there may be more answers and push to find someone who would also push to give them to you. Your posting may help someone, someday, who is in the midst of testing to seek another opinion. While pancreatic cancer is no walk in the park, it sounds like you have found an onc who is ready to be aggressive and try for the best outcome. When I went to Mayo, there was some discussion for about 30 seconds…..about doing chemo first because there was some success with shrinking the tumor first if chemo worked, but I was there and they were ready to operate and scheduled me for the next noon…not even 24 hours later. My best to you and hope to hear from you again here.
Todd….a warm welcome and a big, huge thank you for sharing your story with all. Obtaining a second, professional opinion from a center/physician treating a high volume of patients is a must with any diagnoses and recommended by the National Cancer Institute as well. Great job, Todd.
Pancreatic cancer treatment is very similar to that of cholangiocarcinoma, but as you had mentioned, they are two distinct, different diseases. Distal bile duct cancer is treated with a Whipple surgery just like it is for pancreatic cancer. Makes sense as it involves the same area of the body. Same goes for treatment with Folfirinox
FOL – folinic acid (
F – fluorouracil (5-FU)
IRIN – irinotecan (Camptosar),
OX – oxaliplatin
Watch these tingling fingers and report to the physician. Platin drugs can cause peripheral neuropathy triggered by cold.
I am sure for others to chime in real soon.
Again, welcome to our site.
Hugs,
MarionHi All
My name is Todd and I’m 46 years old and live in Arlington, VA. I have two kids (8 and 5) and a beautiful wife.
Like many new posters, I’ve been a lurker for approximately one month reading your stories and drawing inspiration from the majority of them.
I wanted to tell my story in hopes it might help someone and I also wanted to thank you for your inspiring stories that have helped me over the last month. Ones that especially stick out or resonate with me including Matt R, (similar age and young kids), Iowa Girl, Randi, Duke “you don’t have an expiration date stamped on your forehead” Nukem, Pfox, Hercules) and many, many others that I’m missing. Thank you. Here’s my story.
March 11th: had severe itching for 2nd day in a row with no rash – so went to my GP and had some blood work done.
March 12th: phone call from GP at 09:00 asking me to come in. Liver enzymes and bilirubin off the charts. GP also noticed jaundice. Order more blood tests.
March 13th: levels still sky high. Sent me to the hospital for an ultrasound. Results came back same day and showed the the top of my bile duct was dialated and the bottom part was restricted. My urine was also very dark and my stools were pale colored. I had zero pain which scared me after checking my symptoms on Google. That’s when I first found this group! My GP put me in touch with a GI specialist who recommend that an MRI which was scheduled for early the following week.
March 16th: MRI had similar results but more details. GI specialist recommended an endoscopy and they would place a stent in my bile duct to relieve the jaundice, other symptoms and more importantly, to get the bile out of my system!
March 20th: (the day before we were suppose to the take the kids to Mexico for spring break) they attempted to put in a stent but could not get it through because of the restriction. They then woke me up and told me that they had to do a PTC which was successful with one exception. Bile got into my cavity and talk about pain. Probably the most painful thing (so far) I’ve experienced in my life. They were able to take some brushings from the endoscopy during the first procedure.
March 27th: Went back to check on the stint and get some more brushings. GI specialist also recommended that I see a specialist (GI surgeon) at Georgetown MedStar Hospital which was scheduled for April 1st.
March 31st: Got a call about my brushing and they were inconclusive. At the time, I didn’t realize that these aren’t all that accurate and they are only about 20-40% accurate?
April 1st: Met with Georgetown. Doctor came and without saying much told me I had bile duct cancer (still can’t spell it the proper way!) and recommended that I have the whipple procedure. The entire meeting was about 10 minutes.
After lurking on this site daily for two weeks the one lesson I got was get a second opinion, which is what I did!
I got an appointment at the Mayo Clinic in Rochester the following week (Thursday, April 9th) and met with Dr. Peterson. What a great experience. He spent an hour with me going over every chart, blood test, ultrasound, etc.. and answered every question that I had.
After looking things over he told me what the plan was, which was as follows:
April 9th: blood tests after our consultation.
April 10th: blood test in the morning (fasting)
April 14th: Endoscopic ultrasound @ 12:30
April 14th: Meeting with Dr. Peterson (clinician) and Dr. Trudy (surgeon) at 3:30 to go over the results.The spent an hour with me going over the results and this is where the 2nd opinion is important. I didn’t have bile duct cancer but I have pancreatic cancer! Talk about stunning news.
I have a 2 cm tumor on the tip of the pancreas which is actually in the best spot possible. Because of it’s location, it pushed up against the bile duct and caused the restriction. Two of lymph nodes are also compromised.
They spend about another 30 minutes going over a plan of attack on how he (surgeon) wanted to treat it.
Rather than going straight to a Whipple, he recommended an aggressive chemo therapy first. I’ll be doing Folfirniox which I actually started today! I’m going to do 4 sessions over the next 2 months and will then go back to Mayo in late June for testing and most likely surgery.
He told me that some surgeons might recommend (even other surgeons at Mayo) surgery first, but he felt that it was important to try and treat the cancer that has the potential of spreading to other organs first. I thought his plan was sound and thought it made a lot of sense.
Once we all agreed that this was the best of action for me – they set up two more procedures for me.
April 15th: removed my plastic stent and replaced it with a metal stent. It’s small so he can maneuver around it during surgery.
April 16th: place a port in my chest.
I then returned to Arlington on 21 April and met with a local oncologist at Arlington Cancer Center on 23 April.
Finally, today, I started my first chemo session and I’ve been wearing the bag for about 8 hours so far and all good. Washed my hands in cold water and that got my fingers tingling!
Anyway, I just wanted to tell my story and emphasis the importance of a 2nd opinion. Everything was pointed in one direction, but in the end, I’m confident that my 2nd opinion is the correct one.
I also wanted to thanks for letting people lurk without joining. It was so super helpful for me and I’m really thankful.
Now that’s I know what’s going on with me, I felt a responsibility and a need to tell my store in the hopes that I can help someone else.
Also, I’m not sad about having cancer right now (although it sucks a little). I’m really confident in the course of action I’m taking and I’m confident that I’m going to beat it! It will be tough a road, but I’m looking forward to the challenge.
Sincerely
Todd
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