37 y/o with ALL

mjolly
mjolly Member Posts: 5
edited March 2014 in Leukemia #1
Hi...I've just been diagnosed with ALL. I am looking for information on resources, Dr.s, treamtent centers, etc. Anyone who has gone through this. Please help.

Comments

  • jjla3
    jjla3 Member Posts: 2
    #2
    Hi,
    I was diagnosed with ALL in June 2001 and have been in remission for 20 months. I was treated at MD Anderson with their Hyper-CVAD regimen. MD Anderson is a great facility and I highly recommend it if you can get there. It really helps to be at a major center. There is a lot of information on the internet, but one of the best articles is at www.emedicine.com/med/topic3146.htm

    It is a long road, but ALL is very treatable and can be beaten. If you have more specific questions/concerns, I will try to answer them. Best of luck.
  • pb99
    pb99 Member Posts: 2
    #3
    jjla3 said:

    Hi,
    I was diagnosed with ALL in June 2001 and have been in remission for 20 months. I was treated at MD Anderson with their Hyper-CVAD regimen. MD Anderson is a great facility and I highly recommend it if you can get there. It really helps to be at a major center. There is a lot of information on the internet, but one of the best articles is at www.emedicine.com/med/topic3146.htm

    It is a long road, but ALL is very treatable and can be beaten. If you have more specific questions/concerns, I will try to answer them. Best of luck.

    I'm also a 37 y/o male. I was diagnosed on Feb 21, 2003 with Adult ALL. I'm in induction therapy currently. After 14 days into chemo I had another bone marrow test which showed 20% blasts in marrow. Original diagnosis showed over 80%, probably close to 100% according to the doctor. I'm on the regular chemo regimen, not Hyper-CVAD. I'm at Health Central in West Orlando, Fl(Ocoee actually). I'm hoping I didn't make a mistake by not going to MD Anderson in Orlando but my doctor said I would get the same treatment here. I'm concerned that my blasts were not below 5% after 14 days of induction chemo. I've read that going under 5% after 14 days improves the chances of cure. The Hyper-CVAD regimen has never been brought up by the doctor. I have another bone marrow test in about a week. The doctor says the leukemia is not in my blood, only in the marrow. It's also not in the CNS. One question I'll have for her tomorrow is how it's determined whether the blasts are in the blood. The webpage link you gave was very informative. Thanks for that. I hope you continue successfully on your road recovery. Phil
  • GingerW
    GingerW Member Posts: 4
    #4
    A great book for people with any type of leukemia is Adult Leukemia by Barbara Lackritz. I have AML and am awaiting a transplant at the University of Md. which is a great center. I was in Walter Reed, a great place if your military, and had this book. After showing it to the doctors there they recommend it for reading by other patients and are keeping a copy in the library. You'll learn just about everything there is to learn and understand what your doctors are talking about better. You'll also be able to ask questions which you never would have thought of before. You can choose to read just about ALL so don't let the size of the book scare you off. You should also contact the Leukemia and Lymphoma Society at 800-955-4lsa or go to their web site at www.leukemia-lymphoma.org and they will send you all kinds of information. They also reimburse up to $500 per year for travel and drug expenses. Keep a positive attitude, it works wonders.
  • tiggertoo
    tiggertoo Member Posts: 25
    #5
    Hi! I was diagnosed with ALL 3/1/02 at 33 years old. The first thing I did was call American Cancer society and they sent me a comprhensive overview about ALL, the recommended treatment plans, etc. They give a free wig to cancer patients and have a variety of services to help. There is also the Leukemia & Lymphoma society. They generally have a chapter in larger cities. They give $500 in financial aid to patients. they have easy to read and understand literature on everything from transfusions to the types of cancer. ALL is very treatable. It's not a lot of fun...but we still have a lot of living to do. I had a tumor around my heart, so I had 22 days of radiation after 8 rounds of chemo. I spent 17 weeks in the hospital during a 7 month period, getting chemo, transfusions, dealing with low counts, swollen ankles, staph infections, etc. But I am alive to tell about it. I was not able to tolerate the maintenance chemo, so since my sister is a "perfect match", we are going to go ahead and do a bone marrow transplant. I'm ready to do it and get all this over...If you want to chat, email me back! :)
  • jjla3
    jjla3 Member Posts: 2
    #6
    tiggertoo said:

    Hi! I was diagnosed with ALL 3/1/02 at 33 years old. The first thing I did was call American Cancer society and they sent me a comprhensive overview about ALL, the recommended treatment plans, etc. They give a free wig to cancer patients and have a variety of services to help. There is also the Leukemia & Lymphoma society. They generally have a chapter in larger cities. They give $500 in financial aid to patients. they have easy to read and understand literature on everything from transfusions to the types of cancer. ALL is very treatable. It's not a lot of fun...but we still have a lot of living to do. I had a tumor around my heart, so I had 22 days of radiation after 8 rounds of chemo. I spent 17 weeks in the hospital during a 7 month period, getting chemo, transfusions, dealing with low counts, swollen ankles, staph infections, etc. But I am alive to tell about it. I was not able to tolerate the maintenance chemo, so since my sister is a "perfect match", we are going to go ahead and do a bone marrow transplant. I'm ready to do it and get all this over...If you want to chat, email me back! :)

    Tigertoo: I also had a mass in my chest. I have T-cell ALL. I had nine rounds total chemotherapy and have been on maintenance for a year. I am surprised that you could tolerate the consolidation chemo, but not the maintenance. Best of luck with your transplant. Are you still in remission? Where are you planning to have the transplant?
  • mjolly
    mjolly Member Posts: 5
    #7
    jjla3 said:

    Tigertoo: I also had a mass in my chest. I have T-cell ALL. I had nine rounds total chemotherapy and have been on maintenance for a year. I am surprised that you could tolerate the consolidation chemo, but not the maintenance. Best of luck with your transplant. Are you still in remission? Where are you planning to have the transplant?

    jjla3,
    I have decided to go to MD Anderson for my treatments. I live in Tulsa, so I will have to stay at the Rotary house during my first induction chemo. Do you live in Houston? or did you just go there for treatment? Do you have any suggestions for me? You can email me directly at mnmjolly@aol.com. I'd like to know how you felt during your first induction treatment? Were you able to take care of yourself? or did you need help? Look forward to chatting with you. Melissa
  • pfeiffermikah
    pfeiffermikah Member Posts: 1
    #8
    Hi, I'm Michaela. I'm 19 y/o and have had ALL for a really, really long time. Let me know how I can help you...
  • mjolly
    mjolly Member Posts: 5
    #9
    pfeiffermikah said:

    Hi, I'm Michaela. I'm 19 y/o and have had ALL for a really, really long time. Let me know how I can help you...

    Hi Michaela,
    I think it would be nice to talk with you. Now that I am at MD Anderson, I find it very comforting to speak with others who are going through the same things. You can email me directlyl at mnmjolly@aol.com and let me know what types of things you've gone through, what types of things I can expect. I will be starting chemo either tomorrow or Monday. I know it's going to be a long haul, but I'm ready for the fight. Thanks for writing back. Melissa
  • capekate
    capekate Member Posts: 3
    #10
    Hi to All!

    I was diagnosed with ALL on 12-26-01 at the age of 43 and have since undergone 3 hospitalizations (induction chemo, cellulitis, spinal meningitis); 12 brain radiation treatments; 3 bone marrow biopsies;6 lumbar punctures; 8 blood transfusions; 2 blood patches; etc., etc. Have been in remission since 1/22/02 but am still on maintenance chemotherapy for another 9 months. Would LOVE to chat with anyone about our mutual experiences or provide advice and support to anyone who is newly diagnosed. Although it is a LONG road, you'll find there are MANY blessings along the way -- and I have hair again!! Please write to me at kdooley@tacworldwide.com

    Katie
  • TZ1
    TZ1 Member Posts: 1
    #11
    Hello there!
    I am a 30 year old female that was diagnosed with ALL Jan.25th, 2002. I was hospitalized for 19 days during induction and went into remission. Right now I am in my final round of treatment and then I go into maintenance in two weeks, I can't wait!!! I find it extremely beneficial and soothing to talk to others who are going/have been through this difficult journey and would love to chat/correspond with anyone who is interested. My e-mail is totallytz@aol.com. I hope to hear from you.
    Tali

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