APL

base61ball
base61ball Member Posts: 125
in Leukemia #1
My daughter, 41, was diagnosed yesterday with APL leukemia. They are starting chemo today because it is so aggressive.

Anyone out there know about this? What to expect with the treatment?

I want to go to Orlando to be with her, but I still have five weeks of breast cancer chemotherapy to finish before I can go.

Any help would be appreciated.

Comments

  • nempark
    nempark Member Posts: 681
    #2
    HI :
    OH My Good Lord, do you also have cancer? This is double whammy for you girls. Well my 44 year old daughter was dx in Nov of 2011 with All Acute Llmphoblastic Leukemia. Off course as a mother you can understand how devastating this is I have cried an ocean of tears. I know the disease your daughter has is not the same but it is quite similar. How strange it is that 2 1/2 years I had endometrial cancer and is now a survivor. I did not have any problems with Chemo. I did six months and that was it, but now two years later I am having a lot of pains in my abdomen and back. I recently had a scan and my onc said that it was clear. But now that my daughter is sick I think it is a lot of stress. I am so sorry that you have to go through this when you are not even finished with your treatment. I am 62 years old and our lives have made a drastic change. My daughter is on a serious chemo regime and is completely out of commission, she lays in bed all day and does not have the strength to do anything. We go to the hospital every day for shots. Bear in mind every individual is different and your daughter may not have the same side effects and the same protocol. To be fair and honest these are aggressive cancers and the treatment will be agressive, but it is all doable and the survival rate is good. May our Great God give you the strength and health to be able to be by your daughter's side and may she have strong faith and pray for the peace and endureance during this very difficult time. It is amazing before my daughter got sick I always wondered how a mother feels when her child is sick, well no more, my heart hurts and I physically feel pain, a friend asked me if I didn't know that a broken heart feels pain. I do hope you are not stressing too much and is able to think positively in this crazy situation. I wish all the best for you and your daughter, with today's treatments I pray that she beats this monster. Be well, June
  • base61ball
    base61ball Member Posts: 125
    #3
    nempark said:

    HI :
    OH My Good Lord, do you also have cancer? This is double whammy for you girls. Well my 44 year old daughter was dx in Nov of 2011 with All Acute Llmphoblastic Leukemia. Off course as a mother you can understand how devastating this is I have cried an ocean of tears. I know the disease your daughter has is not the same but it is quite similar. How strange it is that 2 1/2 years I had endometrial cancer and is now a survivor. I did not have any problems with Chemo. I did six months and that was it, but now two years later I am having a lot of pains in my abdomen and back. I recently had a scan and my onc said that it was clear. But now that my daughter is sick I think it is a lot of stress. I am so sorry that you have to go through this when you are not even finished with your treatment. I am 62 years old and our lives have made a drastic change. My daughter is on a serious chemo regime and is completely out of commission, she lays in bed all day and does not have the strength to do anything. We go to the hospital every day for shots. Bear in mind every individual is different and your daughter may not have the same side effects and the same protocol. To be fair and honest these are aggressive cancers and the treatment will be agressive, but it is all doable and the survival rate is good. May our Great God give you the strength and health to be able to be by your daughter's side and may she have strong faith and pray for the peace and endureance during this very difficult time. It is amazing before my daughter got sick I always wondered how a mother feels when her child is sick, well no more, my heart hurts and I physically feel pain, a friend asked me if I didn't know that a broken heart feels pain. I do hope you are not stressing too much and is able to think positively in this crazy situation. I wish all the best for you and your daughter, with today's treatments I pray that she beats this monster. Be well, June

    Thank you
    Yes, I have been in treatment since July 2010 - finally was told I'm in remission in March, but had 3 cycles left. Doctor said I could do more harm than good going now because MY immune system is compromised and I could pick up germs in the hospital and carry them to her. Last thing I want to do.

    I would rather it was me instead of my daughter - I'm used to all the junk that goes with chemo. She is strong and I know the good Lord will pull her through this - its just kind of overwhelming right now.

    The statistics are good 95% cure rate so we are optimistic and believing in a good outcome.

    Thank you for the words of encouragement. I have given her the info to contact this site so hopefully she will do so. I know for me with the breast cancer that it was a good place to vent and get answers from people who actually are going through it or are on the other side.
  • majito
    majito Member Posts: 18
    #4
    Im sorry
    1st let me tell I'm sorry to hear about your daughter being diagnoses with APL in top of you being diagnosed, Im a apl survivor It will be 3 years that I got diagnosed, I had 3 months inpt chemo, plus 10 weeks of outpt arsenic follow by 2 yrs of maintanance chemo pills is definitely not an easy road but having a positive attitude will help, I was diagnosed at 29, is definitely one of the most curable leukemias, if there is anything i can help u an answered to you please do not hesitate to
    Ask, I will be more then happy to give any help!!! Best of luck to you amd ypur daughter!!! May god be with you guys!
  • miss_mj
    miss_mj Member Posts: 2
    #5
    majito said:

    Im sorry
    1st let me tell I'm sorry to hear about your daughter being diagnoses with APL in top of you being diagnosed, Im a apl survivor It will be 3 years that I got diagnosed, I had 3 months inpt chemo, plus 10 weeks of outpt arsenic follow by 2 yrs of maintanance chemo pills is definitely not an easy road but having a positive attitude will help, I was diagnosed at 29, is definitely one of the most curable leukemias, if there is anything i can help u an answered to you please do not hesitate to
    Ask, I will be more then happy to give any help!!! Best of luck to you amd ypur daughter!!! May god be with you guys!

    Best wishes for all of you!
    Best wishes for all of you! I am 29 years old and was diagnosed with APL on April 17th 2012. I had induction at the hospital which included idarubicin and ATRA. For consolidation, my onc is putting me on 10 weeks of arsenic which will be followed by two more cycles of idarubicin. I started arsenic last week and the nurses are having a hard time finding a line since I have small veins. So, when they do find a line, after poking around for a bit, we try to keep it for a few days. Majito, did you take arsenic through just an IV on your arm/hand or did you have a PICC line or a port?
  • majito
    majito Member Posts: 18
    #6
    miss_mj said:

    Best wishes for all of you!
    Best wishes for all of you! I am 29 years old and was diagnosed with APL on April 17th 2012. I had induction at the hospital which included idarubicin and ATRA. For consolidation, my onc is putting me on 10 weeks of arsenic which will be followed by two more cycles of idarubicin. I started arsenic last week and the nurses are having a hard time finding a line since I have small veins. So, when they do find a line, after poking around for a bit, we try to keep it for a few days. Majito, did you take arsenic through just an IV on your arm/hand or did you have a PICC line or a port?

    Hello Ms_mj
    1st sorry to hear about your diagnosis, I was the same age at my diagnosis almost 3 yrs ago! I had 3 inpt treatments 1st 2 with indarubicin and Atra the last one was what they call blue treatment, then I had the 10 weeks of arsenic
    As out pt, n yes I had a picc line, its much easier especially that arsenic
    Is a daily inffusion. Wishing u the best on this though road! If there is anything else I can help
    You pls feel free 2 ask me! God bless
  • ctsimpson
    ctsimpson Member Posts: 1
    #7
    My moms experience
    My mom was diagnosed on March 1, 2012. With the exception of her first month that she spent in the hospital... I've been tracking her experience online. Feel free to ask me any questions, as I've been very involved in my moms recovery and I know how important it can be to be in the know during recovery. She starts her 3rd round of chemo this coming Monday. First month was rough....

    http://akiko.angel-network.org/

    Chris
  • frostymom
    frostymom Member Posts: 2
    #8
    ctsimpson said:

    My moms experience
    My mom was diagnosed on March 1, 2012. With the exception of her first month that she spent in the hospital... I've been tracking her experience online. Feel free to ask me any questions, as I've been very involved in my moms recovery and I know how important it can be to be in the know during recovery. She starts her 3rd round of chemo this coming Monday. First month was rough....

    http://akiko.angel-network.org/

    Chris

    My experience
    I am a 13 year surviver of APL diagnosed at 24, I too was happy with the odds then it was an 80% chance of going into remission so the odds where still in my favor. I was 7 months pregnant when the doctors fogured out something was really wrong with me I had bruises everywhere and a lot of stomach pain. I was able to stay pregnant till I was almost 35 weeks along both April and I where touch in go for awhile but we both made it. I was diagnosed 2 weeks later and with all the different cancers in my family was actually relived that I had a good shot at seeing my children grow up. At the time they where 5 and a half 3 and new born. I went through 3 rounds of chemo and took vasanoid an experimental cancer drug at the time for almost 2 years which caused extreme headaches. The first and last rounds of chemo where the worst during my last round I had an extremely high fever because of the chemo and all the doctors could do was make me comfortable and wait it out. I have some kidney disease, and my heart was stressed due to the amount of fluids I was recieving via I.v.'s they treated that with durietics. I have also had to have my gallbladder removed due to stones I was young to develope gallstones and am told it may also be because of my chemo. I am otherwise healthy and work 7 hours a day as a cook and go for 5 mile hikes with my kids 2 to 3 times a week. I am a little slower, have some memmory issues, and have arthritis in the hip I had all my bone marrow test done but am happy to be alive and deal with the side effects of my treatment. My friends have even gotten used to the fact that everymile stone my kids reach I cry like a baby and thank God that I get to see them. The most important thing you can do is be supportive for them. I remember my brother comming to see me during my first round and I still had my hair he held my hand while they where injecting my chemo and with in minutes he was holding a basin in front of me with one hand and holding my hair back with another, you can guess why. Even if you can not be there let them know how strong they are and how much you love them and support them. Most important they are still beautiful no matter how bad we look our beauty is on the inside and our disease can not take that away.
  • rspolarich
    rspolarich Member Posts: 1
    #9
    frostymom said:

    My experience
    I am a 13 year surviver of APL diagnosed at 24, I too was happy with the odds then it was an 80% chance of going into remission so the odds where still in my favor. I was 7 months pregnant when the doctors fogured out something was really wrong with me I had bruises everywhere and a lot of stomach pain. I was able to stay pregnant till I was almost 35 weeks along both April and I where touch in go for awhile but we both made it. I was diagnosed 2 weeks later and with all the different cancers in my family was actually relived that I had a good shot at seeing my children grow up. At the time they where 5 and a half 3 and new born. I went through 3 rounds of chemo and took vasanoid an experimental cancer drug at the time for almost 2 years which caused extreme headaches. The first and last rounds of chemo where the worst during my last round I had an extremely high fever because of the chemo and all the doctors could do was make me comfortable and wait it out. I have some kidney disease, and my heart was stressed due to the amount of fluids I was recieving via I.v.'s they treated that with durietics. I have also had to have my gallbladder removed due to stones I was young to develope gallstones and am told it may also be because of my chemo. I am otherwise healthy and work 7 hours a day as a cook and go for 5 mile hikes with my kids 2 to 3 times a week. I am a little slower, have some memmory issues, and have arthritis in the hip I had all my bone marrow test done but am happy to be alive and deal with the side effects of my treatment. My friends have even gotten used to the fact that everymile stone my kids reach I cry like a baby and thank God that I get to see them. The most important thing you can do is be supportive for them. I remember my brother comming to see me during my first round and I still had my hair he held my hand while they where injecting my chemo and with in minutes he was holding a basin in front of me with one hand and holding my hair back with another, you can guess why. Even if you can not be there let them know how strong they are and how much you love them and support them. Most important they are still beautiful no matter how bad we look our beauty is on the inside and our disease can not take that away.

    I am a APL survivor.
    I am a APL survivor. I was diagnosed in November of 2004 at the age of 30. I have been in remission since June of 2005. I too had Atra maintenance for 2 yeears after treatment. I have had a bad Mammogram and have to go for further testing and I am scared to death! Has anyone heard of Breast cancer being a secondary cancer of our treatment. I am 37 and decided to start having Mammograms early because of having APL and I wanted to keep everything in check, that goes on with my body. It is not having breast cancer that scares me, it is all the testing that comes with it. I have beat Leukemia, I know for sure that I can beat breast cancer.
  • tinnieval@hotmail.com
    tinnieval@hotmail.com Member Posts: 7
    #10
    ctsimpson said:

    My moms experience
    My mom was diagnosed on March 1, 2012. With the exception of her first month that she spent in the hospital... I've been tracking her experience online. Feel free to ask me any questions, as I've been very involved in my moms recovery and I know how important it can be to be in the know during recovery. She starts her 3rd round of chemo this coming Monday. First month was rough....

    http://akiko.angel-network.org/

    Chris

    Ctsimpson I also found out I
    Ctsimpson I also found out I have apl march 2 2012 I was 38

Discussion Boards