Topic: New Member-Caregiver

Hello Survivors and Caregivers!!!
My name is Brittany and my story is about my best friend Joanne. In July of 2011 she went in to have a CT scan. She was diagnosed with Uterine cancer two years earlier and had a Hysterectomy. Dr. Smiley said it had been a couple of years since her last scan and said lets do one just to make sure nothing has  popped up somewhere else. Well it did!!! She had a tumor the size of a grapefruit in her liver close to her Inferior Vena Cava. So she meet with Dr. Johnson (a gastro oncologist at West Clinic) he basically told her that the only cure was a transplant so her sent her to Dr. Campos (a liver transplant surgeon at Methodist University in Memphis). Dr. Campos told her that with this particular type of cancer that she would not be a candidate for a transplant. So here we go -  Plan A!!!!! After reviewing her scan he said that she possibly could have a resection but was skeptical if he could do it because he was afraid that the tumor had wrapped itself around the IVC. The only way that he would know was to open her up. So in September the surgery was scheduled. Well our worst fear happened he opened her up and closed her up, called in the family and basically told the family she would be here for thanksgiving but not christmas. This man had no bedside manners what so ever!!!!!!!! Not once out of this whole situation did he say that she could start any type of chemo and possibly put this at bay till some other option came available.
  Ok Plan B!!! She went back to West Clinic and met with Dr. Johnson he immediately started her on chemo consisting of Tarceva 100mg, Cisplatin, Gemzar. During that time he sent her file out to various surgeons and scheduled a scan in 6 weeks. After her scan the chemo was working and the tumor was shrinking. Dr. Alexander Parikh a surgical oncologist at Vanderbilt-Ingram Cancer Center responded to her file and wanted to meet with her.
  Plan C!!!! Joanne met with Dr. Parikh and he was very confident that he would be able to do the resection. He scheduled the surgery in Feb. of 2012. The surgery was successful!!!!!  The tumor had not wrapped itself around the IVC but instead penetrated it so the Dr. was able to repair the sidewall. So Joanne was on the road to recovery. After nine days in ICU she was able to go home and start her recovery. After meeting with Dr. Parikh on a follow up visit she was told that she had positive margins and needed to start Radiation mixed with Xeloda. 27 treatments!!! It liked to have killed her literally!! The radiation ulcerated her esophagus and she developed Hand Foot syndrome. With her esophagus being ulcerated she had a had time swallowing and was limited to what she could eat!!!Which was tuff because her body was still trying to recovery from surgery. Joanne went for a scan in May 2012 and the scans where clear. Then she went for a scan in August 2012 and Dr. Parikh found 3 spots on the left side of her liver. Which the doc said wasnt surprising to him considering that her Hormones where in hypermode to help her body heal. Which as we all know that is what the chemo feeds off of.  He told her to go back and meet with Dr. Johnson about starting chemo again.
   Plan D!!!!! When we meet with Dr. Johnson and gave him the scans from Dr. Parikh the spots didn't show up. We were baffled!!!!!!!!! So Dr. Johnson ordered an MRI and what it showed was very saddening there were spots on the left side and spots in the new growth and a spot on a lymph node between the liver and kidneys. Dr. Johnson pretty much told her to go home and get your affairs in order!! Not again!!!! That was the hardest news to hear and the talks that we had afterwards. Funerals wishe, promises that friends make for each other, going through the emotions of not being able to see her granddaughter (who will be two in dec) grow up, or to watch her children start families of their own.
   So the next day I woke up with a new attitude and so did Joanne!!! She wanted to fight this with everything she has!!! So I started doing a lot of research to see what was out there and I found this website. The information that is on here has given insight has to the options that are out there. She has since started chemo again and has a scan in 6 weeks in the mean time we go to Vandy next week to meet with Dr. Parikh and Dr. Laura Geoff to see if there are other options. Also she she is possibly looking at going to M.D. Anderson in Houston.
   One of the things that Dr. Johnson mentioned was chemoembolization.
Has anyone had that done and was in successful? Also is there anyone out there that has had this same situation happen and what where your options/treatment?

Joanne's Hope - "Each day there is Hope in my Heart that my purpose is not done here yet"

Re: New Member-Caregiver

Hi Brittany,

I just wanted to welcome you to this site. Wow!! Joanne sure has been through a lot, but it is so wonderful that she has such a wonderful friend in you. I am sorry I don't have any experience with cheoembolization, but others on here have and I am sure they will let you know about it. Also, if you go to the home page and type in chemoembolization, I'm sure a lot of posts will come up that might help. My daughter has CC and has had chemo and radioembolization. We have been through Plans A, B, C, and D as well, but are lucky that so far Lauren's oncologist has had another plan up his sleeve. I think it is great that if you are not happy with a doctor or treatment you will seek out something different. That is our motto, Never give up hope. If something doesn't work, then move on to something else and hope it does. I wish you and Joanne all the best and hope to hear from you again.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New Member-Caregiver

Dear Brittany and Joanne, Welcome to our elite club that no one wishes to join! I am speechless, what a warrior Joanne is, OMGosh. Talk about attitude and fight and courage! Your post also shows how important it is to get 2nd and 3rd opinions. If you go to our Home page and click on Search you can type in anythig you need info on and lots of previous posts will appear. I can't help with chemoembolization as my husband had radiation and Cyber Knife. How blessed is Joanne to have you for a friend, and vice versa as well. We are glad you found us and please keep us updated on Joanne and I love your attitudes. I know you will get some answers here that you seek!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New Member-Caregiver

Hi Brittany,

Welcome to the site. So sorry that you had to find us all and I am sorry hear about your friend Joanne. Thanks for sharing her story with us all and she sure has been through so much up to now. I am glad though that you have joined us all here as you will get a ton of support and help from everyone. What a great friend you are as well to Joanne.

I have no personal experiences to share with cheoembolisation with you. But I did a search of the site here and there are some posts that will be of interst to you. Many of the posts and threads in this links have links to other sites and research pieces that should also be of interest and use to you.

http://www.cholangiocarcinoma.org/punbb … =325187228

I love hearing how you both woke up that day with a new attitude! That is a great fighting attitude you both have and that is so good to hear! If we can help in any way then please just ask and we'll do what we can. And please keep coming back here and let us know how things go for Joanne. We are all here for you and we care.

My best wishes to you both,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New Member-Caregiver

Thank you everyone for the feedback!! I will definitely check into the searches and will update later on in the week.

May piece be with you all!!!


Brittany

Joanne's Hope - "Each day there is Hope in my Heart that my purpose is not done here yet"

6 (edited by PCL1029 Mon, 29 Oct 2012 10:42:33)

Re: New Member-Caregiver

Hi,

www.hopkinsmedicine.org/liver_tumor_center/treatments/intraarterial_therapies/tace.html

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member-Caregiver

Hi my New Friends,
It's me Joanne, the other half.  I am truly blessed to have Britt, she is an amazing women and unwavering in her goal and that is to find a cure.  I can't tell you how much I appreciate all your input.  We will continue to post as we know more and how well I am responding.  I'm feeling very good, just a little tired but it has not stopped me.  Take care to all of you, may God Bless each and every one of you.

Joanne




Joanne's Hope - "Each day there is Hope in my Heart that my purpose is not done here yet"

Re: New Member-Caregiver

Hello Joanne and so happy to meet the other half of this dynamic duo! A friendship such as yours is to be cherished and blessed. You are one courageous warrior and very much admired on this Board! Please do keep us informed on your progress as we truly care. P.S. My brother is a neighbor of yours, albiet not too close, he lives in Chattanooga.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New Member-Caregiver

Joanne....I would like to echo Lainy and welcome you to our site.  Know that a tidal wave of good wishes is heading your way.  Rest up and stay strong.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New Member-Caregiver

Hi Joanne,

Let me join in with Lainy and Marion in welcoming you here, although we do wish that you didn't have to be here. What a great friend you have in Brittany and what a fighter that you are! I am glad to hear you say that you will continue to post here as I know that you will both get tons of support and help from everyone here.

Feeling good sounds good to me! And I know that a little tiredness won't stop you, but make sure you rest up as well. Please keep us updated on how things are going for you. And should you feel that want to shout, rant or scream then again, come here! And if you just want to come here and have a blether with everyone then please do so also! We are all here for you.

My best to you and Brittany,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.