Mother of ALL

Leukaemia

A group for anyone affected by any type of leukaemia to get together, ask questions, share experiences and support each other.

Mother of ALL

No. of entries: 15 | Posted on 07 Mar 2012 12:29

Mother of ALL

  • I'm a mother of ALL, My son just turned 18 eight weeks ago, three weeks ago he was diagnosised with ALL.  He is Two weeks into his treatment and so far has responded well.  He had a bone marrow biopsy four days after his first chemo treatment and that came back with no cancer cells, good news so far.

    My son has had no side effects from his treatsments yet so far all in all he has had five, but we have been told it could take a couple of weeks for any side effects to show up.  I have been doing a lot of reading and searching on the web about ALL but I feel I need to hear from other people who have or are currently dealing with ALL now.  It helps to hear from people who understand what we are going through.

    Some days I feel as if I can't breath and we still have at least 2 years 11 months to go.

    I would love any feed back, 

    Thanks,

    Mary

  • Hi Mary

    so sorry you're having to deal with this - if it was my 8year old son with ALL rather than me I have no idea how I would be coping.

    I'm 48, and have ALL and am positive for the Philadelphia Chromosome, so am probably not the same diagnosis as your son, and may not have had the same treatment. But if it helps, I didn't really suffer any side effects for the R-chop regime last year except hair loss, which probably took 3- 4 weeks (I'm now bald for the 3rd time, so getting used to it!). At one stage I developed a bad infection which laid me low for about 10 days, but otherwise I was reasonably well through to my Stem cell transplant in July. There were a few spells of nausea and sickness as the month's progressed, which I think were  the cumulative effect of chemo - I'd recomend taking the anti-emetics even if he doesn't feel he needs them, because its often easier to not start being sick, than to stop it once its started! General fatigue can creep up too, but at 18 maybe your young man will sail through!

    Young people have really good results so stay strong. If you have anything specific you want to ask - feel free. I probably won't know the answer, but I'll try|!

    E

    x

  • Sorry you and your son have wound up having to deal with this.  I'm just in the process of heading back to work after finishing the more intensive phases of chemo for ALL (though as I'm older than your son I've also likely had different treatment).  Three years seems a long time, but at least in my case two years of the treatment is maintenance chemo - during which I'm certainly hoping to have a more normal lifestyle!

  • Hi Eithne,

    Thank you for responding to my post, I'm sorry you are having to deal with ALL.  It was a complete shock for us three weeks ago when we were told.  My son was perfectly healthy just went in for the flu and well that was it.  It was hard the first week on my son, husband and two older children and myself.  Some how we are figuring out how to deal with it.  Anthony, that's my son with ALL seems to being dealing with it well.

    He has not had any problems with his chemo treatments yet, he started to loose some hair a week ago but since he cut his hair really short to prepare for it you can't really tell.  So far we found one bruise on his arm.  The steriods raised his glucose levels so now he is on insulin everyday.  He glucose levels are a bit closer to normal now and his insulin dosage have been lowered.  Anthony goes off the steriods on Monday so his glucose levels should return to normal.

    He has a bone marrow biopsy and spinal tap next week to check his progress, then onto to the next faze of treatment.  I think the treatment for Anthony is differnt than the treatment you are receiving, one he is still a child so his protocal is different and we are in the USA.

    I pray everyday that his side effects are minimal at best.  I don't think I could handle watching him suffer.  My son't attitute is great right now.  He tells everyone don't worry it's three years of this and then I'm done. 

    He's really strong, kids can suprise us.

    I would like to keep in touch with you if that's ok and see how your doing, I will pray for you everynight and your family.

    Mary 

  • I'm sorry you are having to deal with this.  This is all new to us and we are just taking everything one day at a time.  We have family and friends to talk to but unless you are going through it you really can't understand. It really helps to connect with people who know what we are feeling and dealing with.

    I hope you continue to get better and soon have the normal lifewstyle we all seem to take for granted.

  • Hi Mary

    I'd love to keep in touch - I've sent you a friends request so you can private message me if you want. Thank you for your prayers and loving thoughts - I will be thinking of you and your family too. I do hope that you find as we have that the kindness of strangers is an amazing gift.

    Positive thoughts & big hugs to you and your family

    love Eithne

  • Hi Eithne, I just read your bio; I'm sorry your ALL came back. I will keep you in my prayers. We found out my son had ALL on February 14th. It's been three weeks now since his first treatment and so far Anthony is doing well. His first bone marrow biopsy four days after his first treatment showed no cancer cells. Next Tuesday he gets another one to check how's he doing. I'm praying they will still show no cancer cells. His Doctor is very happy at how well he is doing so far. he hasn't been sick from his treatments at all yet. He goes off the prednisone on Monday, then his blood will be checked then the next stage of treatment begins. I think our treatment here in the US is different than yours, or at least the terms used are different. That's it for now. I will give you an update next week after his bone marrow biopsy. I don't know to send private messages on her yet but I'll figure it out. If you don't mind me asking what do your treatments consist of? The plan here in the US is one month of induction Treatment then consolidation treatments for six months then once in remission maintenance treatment for aboutn18 months then if still in remission no more treatments just check ups as long as it doesn't come back. ALL is one of the cancers that is treatable so that's what keeps me going. Mary
  • Eithne - likewise, very sorry that your ALL came back.  Hope things go as well as they can.

    Mary - my treatment has been induction, intensification and consolidation chemo (took just under 10 months) and then if all goes well there will be two years of maintenance chemo.  The time taken for the first phases of chemo vary depending on the patient, though (how quickly you recover from each cycle, etc.) and I think that younger adults in the UK often get different treatment to what I've had.  People in the UK may get different treatment to me if - for example - they have a different risk of relapse.

    Glad to hear that your son is progressing well at the moment - I hope that this continues.

  • Update My son's bone marrow and spinal tap have both come back negative again no cancer. Next week he starts his next round of chemo. .
  • That's good news - I hope things continue to go well.

  • Brilliant news - you're all still in in my prayers

    Eithne

  • Thank you Eithne,

    You are in my prayors everynight as well.  How are you doing? I have been thinking about you.  I'm still not sure how to send private messages on here yet, but you can send me one. 

    Hope to hear from you soon,

     

    Mary

  • Thanks ground,

    I will take any good news they will give me, after the month we have had.  We still have a long way to go but the good news and the goods days is what keeps me going.

    Hope all is well with you,

    Mary

  • Hi Mary My 19 yr old daughter was diagnosed with both aml and all in July last year. Her type of leukaemia is rare and a stem cell transplant was on the cards from day one. Luckily her 18 yr old brother was a perfect match. She had 3 rounds of chemo followed by a transplant in November and I spent every day of the 5 months in hospital with her. We had bad days but took one day at a time and to look at her now u would never believe what she has endured in the last 8/9 months. Be positive and stay strong as young people have a remarkable determination to get well and live the life they should be living as young adults x
  • Hi Nikki44beccy, Thanks for telling me about your daughter. It helps to hear from other parents Going through this. It's been six weeks and six weeks of chemo and my son is Doing well. He had zero cancer cells after his first dose of chemo. He is now in Remission and two weeks into consolidation. His doctor says he is doing fantastic. I'm looking forward to maintenance so he can go back to a more normal life, back to School and time with his friends.