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Floridamom….I cannot top anything already posted by the fantastic members on this site. But, I also would like to send a warm welcome your way. Sirsphere has proven to be successful in many cases and there is no reason to believe it not working for you. This cancer can be held at bay something, we have also seen on this board and we continue to witness here especially, in the early stages of recurrence. So there, cancer…take that.
All my best wishes coming your way,
MarionHi Florida Mum,
Welcome to the board and all the loving, knowledgeable and supportive people who post on here.
I absolutely agree that there is only one person who knows our fate…
This disease has a mind of its own, but you can fight it!!
Wishing you strength and courage in your fight,
Katie
Floridamom,
So very sorry you are going through this. I am also surprised at JAX Mayo as I was led to believe they see many cases of CC ( similar to the Mayo – Minn.) However, outside their transplant protocol for CC they may not have the latest and greatest on trials and other various newer treatments?? I’m sorry your doc was so negative.On a side note, I was very impressed with Dr. Schwartz from Mt. Sinai and his compassion and willingness to help. Prior to the mayo-minn taking my mom into their program, I had sent her scans around to several doctors. Dr. Schwartz (never meeting me or my mom) emailed me dozens of times discussing the pros and cons of resection vs. transplant ( my mom has PSC so if resection can be done it is sometimes frowned upon because of the PSC). Had we not continued with Mayo, Dr. Schwartz is where she would be so please value your second opinion!!!
Please keep us posted on your treatment. We all wish you the best.
Ashley
Niantic, CTYou are not just a Florida mom, you are a Miracle mom and do not ever forget it. You are doing all the right things, like getting another opinion quickly. This monster does not care how old you are, and the only thing we know for sure is it has a mind of its own. We never rely on statistics as they just don’t hold true for us. If you now have faith with your new doctor just go with it. Your family is really not wrecked and you are still the glue, the tube has not dried out yet. Attitude and hope are as important as the medical parts. My husband at 77 is a 4 year survivor! Our mentor on this Board was Jeff and he lived with it for 10 years! There is no time frame. You surely do come from a line of survivors, I know that is a heartache. My brother-in-law lost 2 brothers in one of the Polish Camps and they were 12 years old twins. Onward and upward and keep up the good work as you are already a survivor!
I’m with you there, Floridamom. I’m cheering for you to prove everyone wrong who wants to stamp a “best-before” date on you.
You sound strong & determined & I send all good wishes winging their way to you.
Julia xx
Thanks Pam! My greatest wish is that I live to see my children’s children and dance at their weddings! My grandparents were Holocaust survivors so I tell my boys that we come from survivors and a long tradition of of overcoming the odds against us. I am my father’s only child (I have a half sister) and my family is wrecked since I was always the glue at the center of it all. I have two uncle that will consent to live donation and like Kris I want to live long enough for them to discover the cure that will see me into my 80’s and beyond. I am surprised that the Mayo Jax docs were so negative but they dont see many cases of CC. Dr Schwartz from Mt Sinai saw twice as many this year so I will definitely hold onto the hope (my middle name) I was given. I am very strong willed but there is no “path” or prescription to follow for this disease. I have two friends battling breast cancer and consider them lucky that the medical community has answers for them (how twisted is that?). I aim to have a childlike faith-naive perhaps in G-d and I trust my angels (many ppl I have buried over the years) to help focus prayer and healing upon me. I want so badly to prove the docs wrong!
Dear Floridamom,
GO WITH THE SECOND OPINION!!!! None of us comes with an expiration date on the bottom of our foot!
Every patient is an individual and should be seen and treated that way by the medical community! (of which I am a member!)
I lost my Mom to this monster of a disease in April of this year. When diagnosed she had Stage IV disease with mets to the lungs. The first doctor gave her a prognosis of about 1 to 2 months. That was not acceptable to her and we got a second opinion from Duke and she went with chemo there. They agreed with her decision to fight this disease on every front possible.
She lived to see the birth of her second great grandchild and danced in December at the wedding of her youngest of her four grandchildren (and the only) granddaughter’s wedding in December. She outlived her “prognosis” by another 10 months and was active up to the end.
She was an amazing woman and from reading your post, I can only assume the two of you share a deep faith and fortitude that will give you an amazing strength and sense of purpose.
I’m sorry you had to find this site and us but I can assure you we will all be here for you and your family. You will find some of the most caring and compassionate people on the planet here.
Use the search function at the top of the page for questions…just enter a key word.
Ask lots of questions and take someone with you to each appointment that can write down answers to your questions. You are about to enter a war and you will need to be prepared. We are all warriors here and promise to stand with you!
Let us know how we can help!
Hugs to you and your family! You are not alone!
Pam
This was not supposed to happen to me…I am a divorced 43 yo mom of two beautiful boys (15, 12) and last year right before their bdays I was diagnosed with intrahepatic CC. I thought I was blessed when they were able to resection the left lobe and remove that monstrous 6.8cm tumor with and inch margin to spare. Since then, almost exactly a year later at least 4 new tumors were spotted on my PET scan and the Mayo docs are calling it metastatic and tell me surgery is no longer and option. I just finished a round of Sirsphere radiation last week as a means of hopefully shrinking the new tumors. I am terrified because I thought I had beat the odds and now here we go again. The docs here were telling me 6-12 mos mortality even though I have no symptoms and my ca19-9 is not terribly elevated. I went for a second opin @Mt Sinai in NYC and was told not to listen to them that each individual progresses differently and with this radiation and possibly a chemo trial (oxiplatin/gembitimine)(sp?) I could make 5 years so not to be swayed. Its hard when every minute of everyday I cant think of anything except not being there for my boys because we are very close. I rely heavily on my faith and belief in prayer and positive thoughts of others but many days I fall short of the mark. I dont have any idea why this hit me so young and I am definitely not the typical patient but I need to reach out somewhere.
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