My Wonderful Life

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
in Ovarian Cancer #1
This is a website where you can (for free) make your wishes known for your own funeral.
(www.mywonderfullife.com)


Site Features
•Make funeral plans
•Write your obituary
•Design your own headstone
•Write letters to loved ones
•List where your stuff is
•List your favorite music, memories, values, photos, and writings
•Take care of your pets

Comments

  • kikz
    kikz Member Posts: 1,345 Member
    #2
    Thank you, Carlene
    That is a great site to know about. I think of doing all those things but can't really bring myself to yet. I want to make sure I don't put the burden on my son to plan my funeral. I also want to have something written by me to be read at that time. It is hard to even say at my service. When I was first diagnosed I hired a friend to get all my affairs in order. I had procrastinated doing certain things for years. I think there are still a few things I need to take care of.

    Karen
  • BrittanyC
    BrittanyC Member Posts: 100
    #3
    Wow.. this is a great
    Wow.. this is a great site.

    I plan to write my own will in a few years. Just never know nowdays.

    I'm glad my dad told me his last wishes (he is healthy) and has life insurance. Phew.
  • Christine B.
    Christine B. Member Posts: 137
    #4
    This is good to know, Carlene
    Thank you, for sharing something that's difficult to think about but does run through one's mind.
    Chris

    PS Congratulations on your very, very, good news!
  • kayandok
    kayandok Member Posts: 1,202 Member
    #5
    Awesome
    website! THis is exactly what I need.
    Thanks for posting,
    kathleen
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #6
    Oh Carlene what a wonderful
    Oh Carlene what a wonderful idea I will visit the web site now. Thanks you Tina
  • Mwee
    Mwee Member Posts: 1,338
    #7
    thank you!
    I have this "to do" list that has been running through my brain and now I have a place to get started.
    (((HUGS))) Maria
  • lulu1010
    lulu1010 Member Posts: 367
    #8
    clinical trials
    Thank you Carlene for the website. I really need to work on those things but find it so hard.
    I wanted to ask you where you were in your clinical trial...just started or have you been in for a while? I have been offered a clinical trial for a vaccine at Cleveland Clinic and I have till the end of May to decide. As you know, there is a lot of time, testing etc involved and I am not sure I am up for it but then again it may be my best chance. I am not happy about the extra CT scans but I know they say the exposure is minimal.
    Just wondered how you felt about the trials and your experience with it.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #9
    lulu1010 said:

    clinical trials
    Thank you Carlene for the website. I really need to work on those things but find it so hard.
    I wanted to ask you where you were in your clinical trial...just started or have you been in for a while? I have been offered a clinical trial for a vaccine at Cleveland Clinic and I have till the end of May to decide. As you know, there is a lot of time, testing etc involved and I am not sure I am up for it but then again it may be my best chance. I am not happy about the extra CT scans but I know they say the exposure is minimal.
    Just wondered how you felt about the trials and your experience with it.

    I have one more vaccine
    I have one more vaccine injection to go (in June), although I have appointments in May and July for labs, etc. After that, it's every 3 months for 2 years, or 100,000 miles, whichever comes first. (Or until I recur.)

    I have had minimal side effects - nothing more than a bit of localized swelling and redness for a day or two.

    It is time consuming and I travel so far (Dallas to NYC) that it is also expensive (hotel rates in Manhattan are CRAZY).

    I don't know that I would sign on in hopes of being "cured." Most clinical trials don't go anywhere, and mine is Phase I, so chances are, it's not going to save my life. Nevertheless, every single drug and treatment available started out as a Phase I clinical trial, and if no one volunteered for these things, a lot of us wouldn't make it more than a couple of years.

    To me, it was better than just waiting for the other shoe to drop, and I would love to be part of a true breakthrough in ovarian cancer research. It would make all that I've been through so worth it.

    Carlene
  • azgrandma
    azgrandma Member Posts: 609 Member
    #10
    Hissy_Fitz said:

    I have one more vaccine
    I have one more vaccine injection to go (in June), although I have appointments in May and July for labs, etc. After that, it's every 3 months for 2 years, or 100,000 miles, whichever comes first. (Or until I recur.)

    I have had minimal side effects - nothing more than a bit of localized swelling and redness for a day or two.

    It is time consuming and I travel so far (Dallas to NYC) that it is also expensive (hotel rates in Manhattan are CRAZY).

    I don't know that I would sign on in hopes of being "cured." Most clinical trials don't go anywhere, and mine is Phase I, so chances are, it's not going to save my life. Nevertheless, every single drug and treatment available started out as a Phase I clinical trial, and if no one volunteered for these things, a lot of us wouldn't make it more than a couple of years.

    To me, it was better than just waiting for the other shoe to drop, and I would love to be part of a true breakthrough in ovarian cancer research. It would make all that I've been through so worth it.

    Carlene

    Thanks Carlene
    Hi Carlene i will check out this site.
    I hope that your life will be extended for many many years.
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #11
    azgrandma said:

    Thanks Carlene
    Hi Carlene i will check out this site.
    I hope that your life will be extended for many many years.

    @carlene
    You are an inspiration to us all. You are so pro active in trying to beat this beast, I truly believe, you will beat this beast , I don't know why ,I just have feeling you will be a winner, I sincerely hope I am right. People say go with your gut feelings, well that is my gut feeling.
    I love your 100,000 mile comment, god I would travel to the far corners of the earth for a cure!!!
  • lulu1010
    lulu1010 Member Posts: 367
    #12
    Hissy_Fitz said:

    I have one more vaccine
    I have one more vaccine injection to go (in June), although I have appointments in May and July for labs, etc. After that, it's every 3 months for 2 years, or 100,000 miles, whichever comes first. (Or until I recur.)

    I have had minimal side effects - nothing more than a bit of localized swelling and redness for a day or two.

    It is time consuming and I travel so far (Dallas to NYC) that it is also expensive (hotel rates in Manhattan are CRAZY).

    I don't know that I would sign on in hopes of being "cured." Most clinical trials don't go anywhere, and mine is Phase I, so chances are, it's not going to save my life. Nevertheless, every single drug and treatment available started out as a Phase I clinical trial, and if no one volunteered for these things, a lot of us wouldn't make it more than a couple of years.

    To me, it was better than just waiting for the other shoe to drop, and I would love to be part of a true breakthrough in ovarian cancer research. It would make all that I've been through so worth it.

    Carlene

    Thanks for the info Carlene
    Thanks for sharing your info with me. I am a PPC patient but the trial I am considering is for ovarian cancer. It is a Phase IIb trial...not sure what that means. I spoke to my family doctor about it today and I am leaning towards doing it. I hate CT scans ...I hate drinking the stuff and I hate the exposure to radiation but it is good to know they are monitoring closely. I am grateful for your info since you have been involved in a trial. Here's hoping we help find a way to eliminate the beast forever!
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #13
    lulu1010 said:

    Thanks for the info Carlene
    Thanks for sharing your info with me. I am a PPC patient but the trial I am considering is for ovarian cancer. It is a Phase IIb trial...not sure what that means. I spoke to my family doctor about it today and I am leaning towards doing it. I hate CT scans ...I hate drinking the stuff and I hate the exposure to radiation but it is good to know they are monitoring closely. I am grateful for your info since you have been involved in a trial. Here's hoping we help find a way to eliminate the beast forever!

    Lulu....what's the name of
    Lulu....what's the name of your trial?

    Carlene
  • lulu1010
    lulu1010 Member Posts: 367
    #14
    Hissy_Fitz said:

    Lulu....what's the name of
    Lulu....what's the name of your trial?

    Carlene

    Here it is Carlene
    A randomized, Open-Label Phase IIb Trial of Maintenance Therapy with a MUC1 Dendritic Cell Vaccine (CVac)for Epithelial Ovarian Cancer Patients in First or Second Remission
  • lulu1010
    lulu1010 Member Posts: 367
    #15
    Hissy_Fitz said:

    Lulu....what's the name of
    Lulu....what's the name of your trial?

    Carlene

    Here it is Carlene
    A randomized, Open-Label Phase IIb Trial of Maintenance Therapy with a MUC1 Dendritic Cell Vaccine (CVac)for Epithelial Ovarian Cancer Patients in First or Second Remission

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