mattreidy
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Congrats Julie! May there be many many more…! -Matt
Iowagirl wrote:It’s been 6 months since my 5 cm intrahepatic tumor was found in late January 2014 and 5 months since surgery to remove the left liver lobe along with the 5 cm tumor and one small one next to it.Today, August 1, I had an MRI (problems with the CT that was planned) which came back totally negative….no sign of any new growths anywhere or anything remotely suspicious.
I come back here again in 3 months for another scan.
More in the next couple days regarding round 6 of my chemo. Right now, I”m exhausted after a full day at the clinic and then in the ER at a local hospital tonight for an abscessed toenail infection. GAH!!!!
God is good….life is good.
Today I celebrate 6 months of being cancer free after diagnosis in Dec 13 and surgery in Jan 14.
I post this to offer hope to those that may follow who are lucky enough to have caught this beast in time for a curative resection.
-Matt
I was diagnosed in Dec 2013 and took it upon myself to go to the Mayo Clinic in MN where I underwent two weeks of testing for their transplant protocol. I was lucky and resection without transplantation was an option that I choose and it was successful.
I do have to say that the numbers referenced for the protocol can be misleading. The “bar” to be accepted into this transplant protocol is very high. They only accept the most healthy individuals so that has to skew the numbers upward, I would think.
I wanted to post an update on my latest scare.
My wife and I took an expensive, spur of the moment, trip to the Mayo Clinic in MN last Tuesday to get to the bottom of my elevated bilirubin level. I had blood tests and an MRCP last Wednesday and met with my doctor for results on Thursday. Everything came back completely normal. Bilirubin was not elevated, CA 19-9 was 10 (down from 11 in April). MRCP images were all normal too – no strictures or blockage of any kind. We came home to VA Friday evening. My Mayo doctor doesn’t want to see me again until early 2015 for my next follow-up scan.
While I’m glad the results were all clear, I can’t explain why I was feeling poorly or why the local bilirubin blood test result came back high. My Mayo doctor said there are some differences in how bilirubin is tested/calculated from place to place.
The doctor also recommended that I try “bulking up” my stools using metamucil to see if that helps with the chronic loose stools I’ve been having. I’m giving that a try…
-Matt
MattReidy wrote:Hi all,I’ve been feeling fatigued for a few weeks and has some blood work done this past Friday. I got the results and my total bilirubin is a bit high at 1.7 mg/dL – up from 0.5 mg/dL in April.
My doctor suspects a stricture of/in my anastomosis and wants to do an MRI/MRCP to take a look and then if necessary, and ERCP to place a stent and open it back up.
Does anyone have experience with anastomosis strictures that would like to share anything?
I’m worried…
Thanks!
-Matt
Hi all,
I’ve been feeling fatigued for a few weeks and has some blood work done this past Friday. I got the results and my total bilirubin is a bit high at 1.7 mg/dL – up from 0.5 mg/dL in April.
My doctor suspects a stricture of/in my anastomosis and wants to do an MRI/MRCP to take a look and then if necessary, and ERCP to place a stent and open it back up.
Does anyone have experience with anastomosis strictures that would like to share anything?
I’m worried…
Thanks!
-Matt
Thank you all for the med suggestions. I’m not taking anything at the moment nor have I tried anything yet. I’ll look into it. xo
Hello Everyone,
I’m almost 5 months post-op and still battling daily abdominal cramps and diarrhea. The only regular meds I’m taking are a baby aspirin and multivitamin.
I know it’s fairly common to have issues digesting fat without a gallbladder, but does anyone have any tips/suggestions/medications to help alleviate the symptoms besides the obvious (eating less fat)?
Is it also the constant flow of bile into the intestines that causes this? Is there something I can take to absorb it?
Thanks!
-Matt
Here are the details of my surgeries (I had a bile leak after the initial surgery so they had to go in and fix that the next day) and my outcome/diagnosis:
OPERATIVE PROCEDURE:
17-Jan-2014:
1. Diagnostic laparoscopy.
2. Hilar and celiac lymphadenectomy.
3. Left hepatectomy.
4. Roux-en-Y hepaticojejunostomy.
5. Cholecystectomy.OPERATIVE PROCEDURE:
18-Jan-2014:
1. Abdominal exploration.
2. Ligation of posterior bile duct branch.FINAL PATHOLOGY:
A. Lymph nodes, gastric, dissection: Lymph node tissue,
negative for malignancy.
B. Soft tissue, new bile duct margin, excision: Negative for
tumor.
C. Left lobe of liver, gallbladder, extrahepatic bile duct and
regional lymph nodes, Left hepatectomy, cholecystectomy and
lymphadenectomy: Invasive, moderately to poorly differentiated
cholangiocarcinoma is identified, forming a 2.5 x 1.4 x 0.5 cm mass
involving the common hepatic and the left hepatic bile ducts. The
tumor invades into periductal soft tissue. Perineural invasion is
identified. The surgical margins including the hepatic parenchyma
and the bile duct are negative for tumor. Small
vessel invasion is identified but no major vessel invasion is seen.
The gallbladder is negative for tumor. Multiple (9) lymph nodes are
negative. The non-neoplastic parenchyma is negative for tumor.DIAGNOSIS:
AJCC stage: pT2aN0 (7th edition)Congratulations to you and Mark both Kris! May there be many many more!
I’m about 6 months behind you and will be cheering for you all along the way.
-Matt xo
There’s this too… http://www.ncbi.nlm.nih.gov/pubmed/24535250
I’m going to start taking a “baby” aspirin, daily…
Julie,
After reading your post on H. Pylori I actually sent my local GP doc an email asking him if I could get a blood test for it and, if positive, be treated with antibiotics…
Here’s the link to the Hope Lodge – there’s a free shuttle to/from the clinic too. I’ve not stayed there personally, but it looks very nice. I’m not sure if you’re allowed to stay without a caregiver with you… things to look into, for sure.
Keep us posted. I’m rooting for you!!
-Matt
I’m SO SORRY to hear that you’re experiencing all of this. After experiencing the level of competency and care I received at Mayo I’m scared to go anywhere else… I’m wondering if your local oncologist is behaving the way he is because he has little/no experience with cholangiocarcinoma? That’s no excuse, and you DO deserve better.
Do you have the option to stay in Rochester while you’re getting the chemo? Perhaps you could stay for free at the Cancer Society’s Hope Lodge?
Hello and welcome Vince. I’m a 47 yr old married man with 4 children. I was diagnosed with perihilar CC in late Dec ’13. I had a successful resection with clear margins and no spread to lymph nodes etc. in January ’14. My tumor was 2.5 x 1.4 x 0.5 cm. I’ve chosen not to do chemo. My decision was based on my personal belief that the chemo doesn’t have proven benefits but does have proven significant short and long-term side effects. If the CC comes back I’ll have to revisit that decision. Only the oncologists I met with recommended it (6 rounds of gem/cis). The rest of my doctors effectively recommended against it. If I had signs of metastasis, like you do, I think my decision would have been different. Ultimately you need to make the best decision for you. Best of luck to you! -Matt
I’ve had (I like to say had to stay positive) Perihilar CC.
My father has lost several siblings to colon cancer at various ages. Some young, some old. My father just turned 79 on Easter Sunday (4/20/14) and has been getting non-cancerous colon polyps removed just about annually.
I had my first colonoscopy at 40 and was clean. CC diagnosis at 47 in December, successful resection in January, and because I was “freaking out” about all the different feelings from my ribs on down after surgery I had a colonoscopy in March. They did find one very small non-cancerous polyp near my rectum and removed it.
I, for one, think genetics definitely play a part.
I got cut short a bit on my previous reply due to work…
Latest medical update as of March: Clean scans and blood work – no recurrence. Decided not to do any adjuvant chemo.
I’m honestly still in shock and wish I could wake up from this nightmare. I’m coming to terms with my mortality – which I guess most of us do, eventually. All of us except those taken swiftly and/or by accident at a young age. It’s giving me more appreciation for the little things in life and a better perspective, for sure.
I reached a new milestone for me this Easter weekend – my surgical wounds healed to the point that I no longer need to care for them so I took my first bath in a tub (vs shower) since before my surgery in January. That was nice. Not having to spend time twice a day unpacking and packing open wounds is nice too. I’m sure my wife will appreciate me putting away all of the wound supplies and getting our bedroom looking less like a hospital room.
Basically, I’m trying to just live fully, as if none of this has happened to me. My emotions have improved a lot but I still have triggers, songs, memories, thoughts, etc. that cause me to fall apart and into tears.
The Gift of Life Transplant House in Rochester, MN has this on the wall and I’m finding it a good daily reminder. I hope others here like it too. It’s called Living Life – by Bonnie Mohr:
Life is not a race – but indeed a journey. Be Honest. Work hard. Be choosy. Say “thank you”, “I love you”, and “great job” to someone each day. Go to church, take time for prayer. The Lord giveth and the Lord taketh. Let your handshake mean more than pen and paper. Love your life and what you’ve been given, it is not accidental – search for your purpose and do it as best you can. Dreaming does matter. It allows you to become that which you aspire to be. Laugh often. Appreciate the little things in life and enjoy them. Some of the best things really are free. Do not worry, less wrinkles are more becoming. Forgive, it frees the soul. Take time for yourself – plan for longevity. Recognize the special people you’ve been blessed to know. Live for today, enjoy the moment.
This forum is GREAT – I really appreciate all the perspectives, information, feedback, and love that everyone here has.
-Matt
