sherri
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Dear Sandie,
So sorry to read your post. I have read your past postings many times and they gave me hope when I was down. To read about someone who has won this battle like you for 5 yrs gave us hope. Thank you for taking the time to post and share your journey.
You keep fighting, and stay strong. Sending lots of prayers your way.
SherriYea! Matt, I was hoping to read good news this time. I’m heading to Anderson on the 27th and Susan goes to NY on July 5th. Hopefully we will all get good news and celebrate over lunch. Continue to enjoy your vacations.
SherriHi
I dont post on the site much but I do read it everyday. I felt I was reliving my first six months when I read your frustration and not knowing what to do next. My first chemo and oncologist turn out to be a disaster and I was left w no hope. That’s when I figured out that I had to pull on the big girl pants and take control. You have made the first correct step in finding this website I met a young man name Matt who post on this site and we both lived in Richmond. He met me for lunch and that is how I found out about cancer centers, foundation one to get mutations and much more. It but the fire in me to know there was hope. I found a onc in Richmond who was welling to help get me to the right cancer center and was willing to work with them. I see Dr. Shroff at MD Anderon. Once I had both doctors that I could communicate with I started to let some of the stress go. It’s a rough road but put in the work to find the right doctors.I have read that Vanderbelt has some clinical trials and some doctors you might want to check out if you want to stay close to home.
Look on the site for others in your area. I now meet with Matt and Susan and it helps to have lunch and talk to others that understand what you are going through. Post all your questions and someone will answer. Marion, Lainy, Gavin and many others are the wealth of information and keep hope coming to us.
Sending prayers and thoughts your way
SherriHi Matt,
The best news I have heard in months!! I am so happy for you and your family. Let’s get together for lunch to celebrate.
Could you post the mutation that you have to have to get in a clinical trail with Keytruda?
Look forward to seeing you.
SherriGlad to hear your good news. Enjoy your holiday and I look forward to having lunch with you and Susan after the holidays.
Merry Christmas
SherriKris,
Sorry to read that you have to fight again but you sound strong and positive so I beleive you will fight it off again.I saw where your doctor was check on other medicine to go with 5fu. I go to MDA for treatment and my doctor had me on Leucovorin, Irinotecan (camptosar) and I wore a pump for 46 hrs with 5-fluorouracil (adrucil). I haven’t read of this combination so I don’t know if it is something you have tried before. The first 6 cycles took my CA-19 from 7227 to 2398. The second 6 cycles everything stayed the same so they have me on maintenance with xeloda right now. My dr at Anderson is Dr. Shroff if you are interested in this combination.
Best of luck and I’ll send prayers and good thoughts your way.
SherriChristine.. . I see Dr. Rachna Shroff. She is young an thinks outside the box. I was diagnosed in January 2015 and wasn’t responding to the normal chemo used with CC. I went to MDA and she put me on different chemo altogether. First three months my Ca-19 went from 7227 to 2398. 1st positive I had ever had. She works with my onc here so I can stay home to get my chemo. I go every three months to MDA for blood work and scans. I got my second positive this week when I went back, they feel my Cancer is stable, I had no increase or decrease, CA-19 held at 2398 so I’m going on a maintenance program of xeloda. Never thought I’d hear “maintenance”. No more infusuion center on Tuesdays
Great news Matt,
What a wonderful way to start the holidays. Enjoy NY and family.
I go back to MDA on the 7th so I’m hoping to be able to share good news also. December last year is when the jaundice came and everything started to fall apart. This year in December I will have lots to celebrate because I’m still here.
I’m thankful this year for family, finding the foundation and meeting Susan and you. We will get together again soon.
To everyone on this site, thank you for all the time and encouragement and knowledge you give us.
Happy Thanksgiving
SherriHey Matt,
Glad to see you post and know you have your positive attitude back. It’s great they are willing to try new ideas.Susan and I want to meet with you for lunch one day to tell you all about our roller coaster rides. I’m at MD Anderson now and just had my 1st promising scan. My ca-19 had risen to 7227 but my 1st 6 cycle that they put together brought it down to 2398. I’m still celebrating.
Susan can’t meet until around Oct 22, has family things going on. Check your calendar and let’s have lunch.
Hope to see you sioon,
SherriDuke,
I wanted to thank you for always being there for me and answering my post with positive thoughts to me. You made me see it has to rain sometimes before the sunshine. You are one of those very rare finds that is truly kind, human and always putting others a head of you. I am praying for you and your family that peace and comfort are with all of you.You will be so missed but quality of life is the most imporant at this stage.
Sherri
Chucks daughter please tell Chuck that I am sending lots of prayers and hugs. You tell him to keep fighting. Your father has been so helpful to me on this journey. He always was positive and informative. Your father is a very special man and has helped so many of us.
Give him a hug. Thanks for up dating us.
SherriHi Katia,
Sorry to hear about your Dad but it sounds like you have a good handle on his health treatments.I wanted to thank you for the article on PIPAC. I was very interested in the chemo going directly to the cavity and Abdonmen since that is where my cc has spread and I’m on my third different chemo combo and nothing seems to work. I translated the article in English ( will email to anyone that wants to read it) and took it to my onc yesterday. He was very interested in it. He says he doesn’t know of anyone in the USA that has done this. However Wake Forest university is testing something called a Hypac for advanced ovarian cancer and is showing success. I’m am going to back to Anderson Cancer Center in September and will be asking my doctor there about both of these treatments. I will volunteer to be the first CC patient to be tested.
Again thanks for the new information
SherriLainey,
I hope we can too. I know how much it meant to me when Matt met with me and helped me so much on what I needed to do. If we do meet I will be sorry Matt won’t be here to be apart of it and to share his knowledge but he is at Mayo beating this cancer and I’m praying he does.I’ll let you know if we get to. Thanks for all your encourageing posts that I read everyday. I don’t post a lot but I do read everyone’s post. This site is a wonderful place to increase your knowledge of cc and also to know you are not alone and that you can fight and people have been given more time and some have beat it.
Happy weekend to all,
SherriSusan,
I wanted to introduce myself to you because I live in Richmond also. I couldn’t believe when I saw you were from Richmond because now there are four of us. For a rare cancer to have four people in one area is crazy. The sad thing is that three of us travel out of state for treatment with Massey right here and no one there is even working to get clinical trials here.
Anyway, I am a 55 year old wife and “meme”. I have Extraheptic cc and did have surgery. I will list my Drs so you will know who I use. I was diagnosed in Jan. 2015. My surgery went great but when I started with my first oncologist things didn’t go so well and the emotional crazy roller coaster ride began. That is how I found this wonderful group of people on this board and with their encouragement and help I got it together and I’m fighting. You can learn a lot here and get all the support you need.
my surgeon was Dr. Ralph Layman (my hero)
Started with an onc at Va Cancer Institute (parted ways don’t have anything nice to say)
Dr. Ryan Raddin at St.francis Cancer (love him)
Dr. Sharoff at MD Anderson (Houston, Tx) (just started there in June and very impressed)
My email address is sball87@comcast.netWelcome to this site and many prayers on your treatment.
Sherri
