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    Leukemia, how did you survive?

    Asked by WhatNextEmails on Monday, March 11, 2013

    Leukemia, how did you survive?

    We need your help. This month we are putting together a collection of articles for those newly diagnosed on what actions survivors took to beat their specific type of cancer. Please take a few minutes to share your experiences and advice for those newly diagnosed, and your posts might just get included in our articles. Feel free to share whatever comes to mind. Here are some more specific questions to help get the juices going: What kind of support did you have? Were there things you did that really made a difference? How do you go about finding your medical care team? Who made up your team? What resources did you find that were most helpful to you?

    5 Answers from the Community

    5 answers
    • still_fighting's Avatar

      I have CLL (Chronic Lymphocytic Leukemia) when I found out I had leukemia I was of course SHOCKED and broken hearted especially since there wasn't any known cure and it wasn't something that runs in my family, I also had Non-Hodgkins Lymphoma. It is a 'treat as you need it' type of leukemia and just because you have it doesn't necessarily mean you'll go into treatment right away. It was about 2 years later before I ever started treatment. When I was first diagnosed my surgeon recommended I see an oncologist right away and helped me find a good oncologist. I made an appointment and was seen within a week of diagnoses. My oncologist was great! She really fought for me to get in and get all the necessary tests done. She also arranged for me to go to MD Anderson in Houston for more detailed tests to confirm diagnoses. I went for blood tests every 3 months after all my tests and bone marrows came back. After the initial diagnoses I talked to my oncologist about telling my children who were 5 and 7 at the time about my cancer and she suggested that I tell them and gave me alot of information about my cancer, treatments for CLL, how to deal with it and tell your family. I also got in touch with The Leukemia & Lymphoma Society which was very helpful as well. The treatment team I was assigned was fantastic and I feel truely blessed to have such a hard working, patient, understanding team!. After a round of strep throat issues I went to my usual 3 mth blood draw and found that it was chemo time! I was very sick and didn't even know it. My oncologist was super helpful and kind during my first treatment. It was very hard on me because it wasn't working the way we (my team and me) felt it would. I had to have 3 blood transfusions and finally had my port put in which helped alot. My arms were shot from those needles. The chemo drug the doctor put me on wasn't working as well as we'd hoped so she changed it and it cured my Non-Hodgkins Lymphoma and put me in remission! I was in remission for almost 2 years before my next round. The leukemia wasn't as bad as before but I needed to start it up again and they had a new drug for CLL patients. I took 5 treatments before we decided it was enough because it really made me extremely sick but I still had 20 percent cancer cells. So my oncologist put me on Rituxin treatment rounds for 2 years. I take 1 month of treatment every 6 months for 2 years. I am almost finished with these rounds...YAY! and so far I'm doing okay. From family support and my oncologist teams support it all has been though an exhausting, very sick from the drugs, time in my life I am truely thankful to them all for all the help they have given me throughout this journey. From all of their strength it gives me the strength and the ability to keep fighting and winning this battle!

      almost 5 years ago
    • sweethart2912's Avatar

      I have CML and am a 13 year survivor. My family and church provided an excellent support system. I also started volunteering for the Luekemia & Lymphoma Society first as a walker( I could not complete the first walk, too tired) but went anyway and have formed some very good friends through the fundraisers. make sure you researh your diagnosis. Each luekemia and each person are different. then I ask my oncoligist about clinical trials and if there was one for me, I was lucky and got in on the study of Gleevec and could not believe the results. my Dr. was very encouraging. He said he did not give life expectency predictions because you might give up. My doctor, the study coordinater and my oncology nurses plus my doctor made up my heath care team. Luekemia & Lymphoma Society and the Childrens Luekemia Foundation(I was not a child) helped me with resources and the social worker for my oncoligist department were good sources for education and support. Never give up.

      almost 5 years ago
    • ter303's Avatar

      I kind of went into my treatment blinded. MDS turned Leukemia. I totally trusted my doctors. Followed all their orders to the tee. Took it one day at a time. That was the only way I could do it. It was so hard being away from my husband, kids and home. It was to hard on me to think about what next. No pun intended. So one day at a time. I had a wonderful support group. Family, friends. They helped more than they will ever know. I tried to appreciate every little thing. Always looked on the bright side. There was always something good about my treatment.

      almost 5 years ago
    • LisaLathrop's Avatar

      I am a 4+ year AML Survivor. Diagnosed in 2008, I was sent by my insurance company to the exemplary University of Nebraska Medical Center in Omaha, NE....a leukemia/lymphoma research facility. As I met my Team of oncologists (yes, more than 1), PAs, and extremely caring nurses and techs, I trusted them from the start. My treatment included a LOT of chemo therapy - of all colors, too. and especially a BMT from my sister who was a 100% match. I have always been a "glass half full" gal...and an elementary art teacher prior to diagnosis. Soon I was getting packages at least every other day of artwork, cards and letters from the students and teachers I had worked with. My walls were lined with EVERYTHING! My husband and primary caregiver began a CaringBridge website....so that we wouldn't get worn out by speaking to all our family and friends with all the latest news of my progress. Daily he posted for me...and daily he read messages from family, friends, and friends of friends we had never even met. The coverings on my walls and daily messages kept my spirits up! When he was relieved to go home and check on our children, my Aunt came to caregive in his place. Immediately she slapped a "Life is Good" magnet on my door. That little circle was a symbol to all that you were entering a room where a positive attitude was very present. Saying that, I of course had good days and bad...the bad days I was given some very good advice: "have your 10-15 min. or so pity party, then count your blessings and get back in the game." Other than that, I found a new faith in our Lord, and thank him every day for the blessings I DO have. Once I came through it all (infections, GVHD, total knee replacement as a result of the drugs, and other bumps in the road), I now consider myself a Thriver. I have a business that helps me offer help, guidance, links, etc. to cancer patients/caregivers and continue to create art that says "I am a Survivor". I also will Relay for Life until I can't walk any longer so that we can WIN THIS FIGHT!!!

      over 4 years ago
    • ter303's Avatar

      I started with MDS then it went into Acute leukemia. I wasn't sure what was going to happen. It happened so fast. I didn't research my options, I totally believed in my doctors and followed every instruction to the tee. I felt they new what they were doing because so many people have/had Leukemia. I wasn't paving a new path. It was already paved. I felt so fortunate that that was the case. I counted my blessings everyday. I knew there were people out there that had it worse. But still is was a horrible journey. I never got mad or felt sorry for my self. For every bad thing that happened, I thought of a positive thing. Another thing I did when I got diagnosed with cancer, everyday I would write everything that I had to be thankful for. That came in so handy because there were days I couldn't think of blessings so I would refer to that journal. I have a wonderful husband, kids, mom, siblings and friends that I made this horrible journey tolerable. Knowing my family was taken care of was very comforting, even though it was not done my way. I had no control of that or anything for a while. I thought of it that they were being loved. I was so loved.

      almost 4 years ago

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