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The Diagnosis: Share Your Experience

  • By Anthony Carrone Keymaster

    Receiving the diagnosis of blood cancer can be one of the most difficult things one will face. Now that you or someone you care for has been diagnosed, what advice would you give to others who are going through this new experience?

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  • By Racheli Alkobey Moderator

    My advice would be to focus on what you can control and try not to stress about what you can’t! It’s also so important to take action and educate yourself on the next steps and to really be mindful and present during your treatment.

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  • By bmcneese

    When I was diagnosed with APL Leukemia I was more concerned with reassuring my family and friends that I was ok because I didn’t want them to worry. I guess that was the nurse in me coming out. I was used to being the person that took care of patients and their families and not the other way around. My advise is to concentrate on the things that you can control. I drew heavily on my faith and put all my trust in God. I also believe that a positive attitude was every bit as important as the chemotherapy I took. Your life will change, embrace it and make the best of it. Find and concentrate on the blessings no matter how small. You can find a blessing everyday. Some of my blessings was the fact that I meet some incredible caregivers and other patients. I had people that I had never met praying for me and sending me cards and my children stepped up and supported me and each other. I look back on my Journey and I can honestly say that I would not change it because I gained more than it took and I am able to understand, support and help others who are facing the same illness as I did. I pray for each of you and your families.

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  • By Cindy Chmielewski Moderator

    My advice to someone who is newly diagnosed with a blood cancer is to become your own best advocate and to put together a support network. To become your own best advocate you need to educate yourself so that you can engage in educated discussions with you health care team and make informed decisions about treatment options. Engaged, educated patients tend to have better outcomes for their given situation. Your support network should include your healthcare team, care partner, family, friends and others that have your same cancer. It’s important to have a physical, a psychological, as well as a social support network. Live in the moment. Set goals. Begin a gratitude journal. Accept help.

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  • By Ann Harper Moderator

    Finding out as much as you can about your disease is so important. You need to know everything you can so you can be your own best advocate. No one will care about you the way that you do. Good luck.

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  • By Amber Lynch Moderator

    My advice is when you are ready share your diagnosis. It is natural to want to keep it to yourself, but letting others in can be a tremendous source of strength. I held it in at first, but when I shared my diagnosis I was amazed at the comfort and support we received. It helped me, but more importantly it helped my family. They needed that sense of community. Sometimes we focus on ourselves and rightly so during the battle with cancer, but we can forget the family. They too are dealing with an overwhelming experience.

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  • By bluchs

    My Treatment after being , re diagnosed as terminal.
    I was first approached by Hospice, which usually means less than 6 months to live, and they will only take you on, if you agree No More treatment!
    I Turned Them Down, and I decided to fight on.
    I was diagnosed to take daily chemo Imbruvica 420mg per day.
    That was 19 months ago.
    Wednesday I got very sick, I figured my hemoglobin’s were low again, my legs did not work, I was out of breath.
    So I went to see My oncologist, and get a blood test Emergency Test.
    I was right, they were at 5, so I went to emergency.
    They had to do more blood testing, plus I can only get eradiated blood, I had several allergic reactions to blood in the beginning.
    I have actually had , now 43 blood transfusions.
    I also got an infusion of a steroid, plus got a prescription for 10 steroid pills per day.
    And I have to have more infusions, of some type? next week.
    I feel very sick, and I fear the end is now near.
    I should be pleased, I was given 6 months to live, 19 months ago??
    My Oncologist says, that the imbruvica, is still killing cancer cells, but now it is also killing all of my red blood cells.
    Which is why the steroids?
    So the miracle drug that is curing me, is now killing me.
    Dammed if I do , Dammed if I don’t.
    I guess, all I can do, is to continue to Pray and hope for the best??
    Do I still have the right to be scared, depressed and sad?
    I have had plenty of time to make my peace, and say all of my goodbyes, but it remains very hard.
    So I will still Pray, and I will still hope, and I will fight right up to the end.

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    • By YolandaBrunson-Sarrabo Moderator

      @bluchs – I’m very sad to hear of your latest developments. I pray it’s just a hiccup many have every now and then. I’m praying for you and please let us know about your developments. Keep up the fight!
      Best!

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