Friend diagnosed with aggressive ALL starting chemo today

kacee999
kacee999 Member Posts: 110
in Leukemia #1
I am usually on the Breast Cancert thread, as I just completed 7 months of surgeries, chemo and rads for Stage 1 BC, so I've kindof been there and done that. One of the people who was most helpful to me through the process was the other admin here at work in my department. She constantly came to me and "marveled at my strength" and how I didn't let it "get" to me...she is one of the kindest people I have ever known. That being said, she began feeling "bad" last Tuesday or Wednesday. Thursday had to leave work. Thursday night in hospital with transfusion. It is now Tuesday and they diagnosed acute ALL. She is being transferred to MD Anderson today to begin chemo. My question is, I am fully aware of the side affects of MY kind of chemo, but unversed in leukemia treatments. Can someone tell me the following so I can be prepared to help, counsel, console, etc.

Will she lose her hair and if so how soon?
Does "your" chemo do the same as "my" chemo...incredible fatigue (you cannot function AT ALL), loss of taste, nightmares, bone and muscle/tendon pain, mouth sores...

Trying to find these out so when we talk I can have an idea of what she is to expect. She is NOT one to do any research. Thanks for any help!

Plus, she was also told that if she does not do any chemo she has 4 months. With chemo what is the general clinical prognosis? (Please don't give me the "everyone is different and many people beat the odds" speech.)

Comments

  • nempark
    nempark Member Posts: 681
    #2
    Hi
    As sad as your post is you made me laugh with your closing statement. Monday December 26, 2012 I lost my beautiful 44 year old daughter to Acute ALL. Diagnosed in November 2011. Kacee, Blood cancer is not like any other cancer. blood cancer is the entire body. My daughter had a rough journey. She lost her hair after the second chemo, and unfortunately after the third chemo she relapsed and had to start a new chemo all over again. This time she was given a new combo which consisted of eight sessions at the end of the seventh session she relapsed leukemia cells multiplied like crazy. prior to the last relapse, she suffered constant fevers and was hospitalized several times. This last time she was in hospital for 30 days and this is where she did not recover. She was in pain but the Doctors managed the pain and kept her comfortable. She passed quite peacefully in my arms. Kacee, help her as much as possible and love her as much as possible. This is a roller coaster journey out of this world.
    to be honest I don't think my daughter ever had a really good day in one year, however it could have been worst because she did not get the mouth sores badly and nausea, I think she threw up once and had a good appetite until the last two weeks. She lost weight and her skin was just hanging off. I really do not know how I will ever get over this and when I will stop crying. To tell you the truth, I think the medicine is too much. I wish you and your friend all the best and I hope you keep your health so you can encourage and give her the same hope and support she gave to you. Please let me know how she is doing. If she wants she can write to me in a private e-mail. Keep in touch and take care of yourself.
  • kacee999
    kacee999 Member Posts: 110
    #3
    nempark said:

    Hi
    As sad as your post is you made me laugh with your closing statement. Monday December 26, 2012 I lost my beautiful 44 year old daughter to Acute ALL. Diagnosed in November 2011. Kacee, Blood cancer is not like any other cancer. blood cancer is the entire body. My daughter had a rough journey. She lost her hair after the second chemo, and unfortunately after the third chemo she relapsed and had to start a new chemo all over again. This time she was given a new combo which consisted of eight sessions at the end of the seventh session she relapsed leukemia cells multiplied like crazy. prior to the last relapse, she suffered constant fevers and was hospitalized several times. This last time she was in hospital for 30 days and this is where she did not recover. She was in pain but the Doctors managed the pain and kept her comfortable. She passed quite peacefully in my arms. Kacee, help her as much as possible and love her as much as possible. This is a roller coaster journey out of this world.
    to be honest I don't think my daughter ever had a really good day in one year, however it could have been worst because she did not get the mouth sores badly and nausea, I think she threw up once and had a good appetite until the last two weeks. She lost weight and her skin was just hanging off. I really do not know how I will ever get over this and when I will stop crying. To tell you the truth, I think the medicine is too much. I wish you and your friend all the best and I hope you keep your health so you can encourage and give her the same hope and support she gave to you. Please let me know how she is doing. If she wants she can write to me in a private e-mail. Keep in touch and take care of yourself.

    My heart goes out to you...
    on the passing of your dear daughter. However, that being said, no one on earth can stand to watch a loved one suffer and she is looking down on you in peace now. Sounds like ALL is a real **** on adults. I am not sure what stage she is in, if it has gone blastic or is still accellerated. I just need to be aware of as much as I can so I can give her support as she goes through this. Thank you for your post!
  • SCanuk
    SCanuk Member Posts: 2
    #4
    kacee999 said:

    My heart goes out to you...
    on the passing of your dear daughter. However, that being said, no one on earth can stand to watch a loved one suffer and she is looking down on you in peace now. Sounds like ALL is a real **** on adults. I am not sure what stage she is in, if it has gone blastic or is still accellerated. I just need to be aware of as much as I can so I can give her support as she goes through this. Thank you for your post!

    ALL
    I am very sad to hear about your beloved friend's and my prayers go out to her and you. I am certainly not comparing a human to my beautiful furry (dog) member of my family (I have no children) and please do not get insulted. This first experience I had with dog cancer was ALL. It is rare in dogs so I did a lot of research on the internet for ALL. I could not find any success rate of ALL in dogs so I did not pursue the chemo route as I did not want her to go through the terrible treatments. She was given 5 to 7 days before I would have to put her to sleep. I did change her diet radically, which she was given no sugars (even carrots have sugar) and no wheat, distilled water, hemp oil, cottage cheese etc. She survived an additional 10 weeks in which she was very active and healthy until the day I had to put her to sleep. I believe the diet helped her survive longer and the vet was astounded that she did so well for that long.

    God bless you for being there for your friend on the uncontrollable roller coaster ride of emotions and pain. I am sorry that I could not add anything really helpful, but that was my experience.
  • kacee999
    kacee999 Member Posts: 110
    #5
    SCanuk said:

    ALL
    I am very sad to hear about your beloved friend's and my prayers go out to her and you. I am certainly not comparing a human to my beautiful furry (dog) member of my family (I have no children) and please do not get insulted. This first experience I had with dog cancer was ALL. It is rare in dogs so I did a lot of research on the internet for ALL. I could not find any success rate of ALL in dogs so I did not pursue the chemo route as I did not want her to go through the terrible treatments. She was given 5 to 7 days before I would have to put her to sleep. I did change her diet radically, which she was given no sugars (even carrots have sugar) and no wheat, distilled water, hemp oil, cottage cheese etc. She survived an additional 10 weeks in which she was very active and healthy until the day I had to put her to sleep. I believe the diet helped her survive longer and the vet was astounded that she did so well for that long.

    God bless you for being there for your friend on the uncontrollable roller coaster ride of emotions and pain. I am sorry that I could not add anything really helpful, but that was my experience.

    Thank you...
    so much for the post! I am an animal lover myself (no children too) (3 dogs, 3 cats, a parrot and 8 small birds<!!!!!>) and I can certainly empathize with what you went through. Good for you for doing your research and trying different things and it sounds like you greatly improved the quality of your little one's life in the end!
  • DevonLea
    DevonLea Member Posts: 22
    #6
    kacee999 said:

    Thank you...
    so much for the post! I am an animal lover myself (no children too) (3 dogs, 3 cats, a parrot and 8 small birds<!!!!!>) and I can certainly empathize with what you went through. Good for you for doing your research and trying different things and it sounds like you greatly improved the quality of your little one's life in the end!

    I Have ALL
    Kacee,
    Unfortunately the chemo we get for ALL is just as bad as your chemo. I have been in remission for a year now, but it has been a long road. I lost my hair, all of my strength, and was hospitalized several times for complications with chemo. Once from extreme joint pain, once from extreme mouth sores so bad I couldn't eat for a week, and the last time was for walking pneumonia. I lost all of my strength, so bad that I couldn't even walk up the stairs. After I got done with the harsh chemo--now I'm on maintenance which is just pills and lumbar punctures--everything got a lot better. My hair is coming back and my strength is returning. I didn't get sick that often, the only time I did was when I forgot to take my ativan before a treatment. It is a rough disease but if it is found early enough it is one of the most treatable of the Leukemia's. I think the worst thing about it is the bone marrow biopsies. Those suck. But I hope this helps you know what is to come. If you have any other questions, please feel free to ask. I wish you and your friend all the best.

    Devon
  • nempark
    nempark Member Posts: 681
    #7
    DevonLea said:

    I Have ALL
    Kacee,
    Unfortunately the chemo we get for ALL is just as bad as your chemo. I have been in remission for a year now, but it has been a long road. I lost my hair, all of my strength, and was hospitalized several times for complications with chemo. Once from extreme joint pain, once from extreme mouth sores so bad I couldn't eat for a week, and the last time was for walking pneumonia. I lost all of my strength, so bad that I couldn't even walk up the stairs. After I got done with the harsh chemo--now I'm on maintenance which is just pills and lumbar punctures--everything got a lot better. My hair is coming back and my strength is returning. I didn't get sick that often, the only time I did was when I forgot to take my ativan before a treatment. It is a rough disease but if it is found early enough it is one of the most treatable of the Leukemia's. I think the worst thing about it is the bone marrow biopsies. Those suck. But I hope this helps you know what is to come. If you have any other questions, please feel free to ask. I wish you and your friend all the best.

    Devon

    God Bless you my darling
    So glad you are regaining your strength. My daughter was not this fortunate. I am so happy for you and your post is exactly how she felt and how her treatment went. Please keep in touch and I hope and pray that you continue to gain your strength and stay for many years in remission and cured.
  • KConnell
    KConnell Member Posts: 2
    #8
    Hello,
     
    First, I am so sorry

    Hello,

     

    First, I am so sorry about your friend's diagnosis, and what a great friend you are to want to learn about all of this! I was diagnosed with ALL in December 2007. I can't exactly remember how soon my hair started falling out, but I did lose it all. I got very weak and tired, occasionally had mouth sores (they give you a mouth wash to help prevent it...important that she uses it) and really, the only time I had any bone pain was after a shot I would get to help boost the growth of my white blood cells. I was rarely nauseous from the chemo. It does definitely take a toll on your body (as you very well know, I'm sure). My doctor told me it was VERY important to stay hydrated, and I was very stubborn and didn't drink much water at first, and found myself dehydrated and needing fluids a lot. Once I decided to listen and started drinking tons of water, I felt much better. I definitely noticed a difference, so I would make sure your friend knows to stay hydrated! I also tried to take small walks when I could (around the house/hospital). Since you lose so much muscle mass, getting up for walks sometimes helps a bit. I hope she stays strong and positive. I will be praying for her, and you as well!  

     

    Thanks,

    Kymm

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