• Medical Miracle Maybe

    Asked by Jalemans on Wednesday, September 14, 2016

    Medical Miracle Maybe

    dx= high grade uterine leiomyosarcoma with extensive vascular invasion & rare OLGC variant. prognosis= "extremely poor". Had scan on Friday. 28 months & no new tumors! I've read the journals with this OLGC & most people don't even live this long - let alone disease free. Even my onc is cautiously optimistic. I think I may be the first to be disease free for this long (although one woman lived for many years with the disease, most died within 2 years). She is telling me probably no more scans until something comes up. Yippee!

    So, I am hoping now that I will make it for another 2 years so my husband will be retirement age & I don't have to worry about the Munchkin. I feel like I can plan ahead for things now like maybe a vacation next year.

    Just thought I'd share. Thank you all for your support on this journey we call life. Jules

    20 Answers from the Community

    20 answers
    • LiveWithCancer's Avatar

      Wow!!!!! That's FABULOUS news (and, if anyone is deserving of some good news, it is you!!!) I am so happy for you!!

      almost 5 years ago
    • barryboomer's Avatar

      Great News.....Keep a VERY Healthy Diet and whatever else you can find to keep you healthy....Don't let up on YOUR Job and that's to give your cells Amazing foods everyday...

      almost 5 years ago
    • Carool's Avatar

      Good to know!

      almost 5 years ago
    • Phoenix76's Avatar

      Wonderful news!! Keep up the good work! Blessings!

      almost 5 years ago
    • GregP_WN's Avatar

      Great to hear! We all need to hear more of these stories, it helps us all! Thanks for posting and we wish you at least 20 more years, instead of 2.

      almost 5 years ago
    • Uespatient's Avatar

      This is amazing news!! I'm so happy for you and your family!! Would you mind sharing with me privately what your treatment plan was? If so, I'd be happy to share my email with you. Thanks

      almost 5 years ago
    • bellsf's Avatar

      Congratulations! I also would love to know what your treatment plan is. I don't know how to contact you privately.

      almost 5 years ago
    • suzanne611's Avatar

      Congrats! I also have high grade LMS and was told prognosis 1 year in 2010!! I am not disease free but still very much alive. There are many new treatments that are still in research. Definately go on vacation and enjoy!!!

      almost 5 years ago
    • Vivbob's Avatar

      Congratulations, we survivors are always ready for good news. Enjoy each new day and do exactly what you want. Live each day and enjoy your life. Enjoy hearing the Good Stuff, your Iowa friend.

      almost 5 years ago
    • Ivy's Avatar

      So wonderful to hear great new for yourself and because it gives hope to others. May it continue for you!

      almost 5 years ago
    • BuckeyeShelby's Avatar

      Thank you so much for sharing your good news. I know you've been scared spitless waiting for those result. May you remain NED for the next 100 years or so! Woo hoo!!!

      almost 5 years ago
    • geekling's Avatar


      Your joy in being alive is utterly contageous.

      Thank you.

      almost 5 years ago
    • HOBO's Avatar

      Doing the happy dance!!

      almost 5 years ago
    • Lorla's Avatar

      Great news! Best wishes for a long and happy life. Hoping it will be a lot more than 2 yrs.

      almost 5 years ago
    • Jalemans' Avatar

      Don't know how to contact folks privately, but I don't mind sharing on this site. Initial surgery (I told my wonderful gyn surgeon that if anything looked bad "take everything out!" Which he did.) I then went on a chemo cycle = Gemzar, then Gemzar + Taxotere, then Gemzar, then a week off. Chemo didn't work out so well for me. After the first Taxotere, my white blood ct went to zero & I had to be hospitalized. Then they cut the Taxotere down & added neulasta. Round 2 went OK. Then after round 3 I became very ill & had to be hospitalized again for like 7 days. At that point my onc went on maternity leave so I stopped the treatments since they seemed to be more of a life risk than the actual cancer. Have had an exam every 3 months & scans every 6. There have been some bumps along the way, but no new tumors identified as LMS.

      almost 5 years ago
    • Janetspringer's Avatar

      Great news!

      almost 5 years ago
    • suzanne611's Avatar

      One piece of advice is to get a second opinion at a large center. I see Dr Hensley at Sloan Kettering in NYC. I see her about every 6 months to a year for treatment plan considerations .

      almost 5 years ago
    • Shoreline's Avatar

      Such spectacular news! Blessings!

      almost 5 years ago
    • DoreenLouise's Avatar

      Wonderful news

      almost 5 years ago
    • gonewest's Avatar


      almost 5 years ago

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