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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by acute lymphoblastic leukaemia (ALL) to come...
A place for people affected by acute myeloid leukaemia (AML) to support one another...
Affected by chronic myeloid leukaemia (CML)? Join this group to share experiences...
A support group for anyone affected by CLL (chronic lymphocytic leukaemia), SLL ...
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,
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|!
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!
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.
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.
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
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.
That's good news - I hope things continue to go well.
Brilliant news - you're all still in in my prayers
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,
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,
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