Hi everyone my name is Dawn and I am a new member. I have joined this group for some advice because my 15 year old daughter has been diagnosed with CML last week. We are still in shock and she is being very brave. I have been told that it is best to go for a bone marrow transplant within the next 6 months. I think she is on Glivec and a chemotherapy drug plus one to get her white blood cells down to a normal level. I was told that a person without CML will have a level of around 11 and when admitted she had a level of 370. I have also been told that it is rare for a 15 year old to have this. Any one who has been in my position I would be grateful for any information, or any information in general would be very much appreciated. Thanks in advance, Dawn xx
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Daughter diagnosed with CML
Hi Dawn.
Welcome to the club that nobody wants to belong to.
The first thing is that you are not alone and we are pleased that you have found us so soon. Please ask any question you want, and someone will answer.
I am sure that you have been told that there are several options open to you one of which is a bone marrow transplant (related or unrelated). Is there a sibling and if so has he/she been tested for a match.
Where is your daughter being treated as you want to have her treated as a specialist center. It is true that CML tends to be diagnosed in older people but if you read the posts here you will find quite a few younger people around.
Please so to the home page and scroll down and read Max's and Aaron's diary.
I am sure that Max's mother will answer you but if you prefer you can contact me directly and I will pass your info on.
You can contact me at steve.carol@ntlworld.com
Best of luck
Steven Davies
Hi Steven, thank you for your welcolme, I have read Max and Aarons diaries and have found that Aaron was treated by the same consultant that Rebecca is under at the Birmingham Childrens Hospital, Sarah Lawson! My other two children are to be tested within the next few weeks to see if they are a match and we will take things from there. She is feeling a bit better now and seems to be her old self again even though she is still in hospital. She will be hopeful when she knows that a lad younger than her has had this and is now okay. Thanks again for your info Steven. Dawn xx
Hi Dawn,
Glad you read my post quickly & that you have found that Aaron is under the same consultant as Rebecca. Jayne, Aaron's mum often posts on this site & hopefully she will get in touch with you as does Max mum. Both boys are wonderful examples of young people who have had CML They are both doing very well. Aaron's mum had a baby about 8 months ago so she may take a little time to read the site but if you want to email us we can get in touch with her & ask her to post or email you privately if you give us your email address I gave you our wrong email address as my wife Carol pointed out it is: steven.carol@ntlworld.com do email us if you would like. When I was first diagnosed in August 2004 it was such a shock for both Carol & I. I can imagine how you must feel especially with some as young as Rebecca but as you can see from Max & Aaron there is life beyond CML the first few months are a roller coaster. If it was not for this site & the help & support together with the friendship we made I don't know how we would have got through those first few months.There is a wealth of knowledge on this site there is always someone to answer or help you with your question or query. Think of us as you extended family.Give Rebecca our love & let us know how she is getting on we can also ask Max's mum Parmjit to get in touch with you if she does not read your post.
Take care we are always here for you
Love
Steven & Carol
Dear Dawn
Glad you posted on CML Support. The american lists tend to deal with their form of healthcare etc. and if you are in the UK it is best to speak to others in the UK. I do hope that both Jayne and Parmjit get in touch as they would be of great support to you.
Good luck with the sibling matches. Keep us posted.
Elizabeth
Thank you Elizabeth and Steven, We are off to the Childrens hospital tomorrow for Rebecca to go on a machine that filters white cells off the blood ready for her transplant should she need them. We will be told when her brother and sister must come in for a blood test. I will let you know how she gets on tomorrow. Thanks to everyone for your support, its really made a difference to talk to someone who has gone through all this. Speak to you tomorrow. Dawn xx
Hi Dawn,
Make sure that Rebecca take some music to listen to as it can get quite boring.
I had a stem cell harvest in between Xmas and New Year 2006.
All the best for tomorrow.
Please keep in touch.
Steven and carol
steven.carol@ntlworld.com
Dawn
Just caught up with the recent posts. I was sorry to learn of your daughter's diagnosis but relieved that you have found this site. I note that you have already come across Max's diaries so will be familiar with his journey.
There is much to consider at this time and I hope that Rebecca's appointment was o.k today. I would be happy for you to contact me should you wish to do, but equally understand if you need time and space to take in the mountain of information that will come your way. (simon.horwood@ntlworld.com)
With very best wishes
Parmjit
Hi Parmjit, yes the appointment went fine, she went on the machine and was okay. I gave my blood to try and get a match. Her sister and brother are going on Monday to give theirs. She has to go back tomorrow to get some bone marrow out and a piece of bone. Yes I am overwhelmed with all the infomation that is hitting me and Rebecca and taking it all in is quite difficult. All I know is that I want more that anything for her to be okay again and will do anything for her to make her happy as she has been through such a lot the last couple of days. I will keep everyone posted with her progress. Speak to you soon. Dawn xx
Hi Dawn
Just wanted to send my thought and good wishes to you and your daughter and family.
I hope that the biopsy goes ok for her today. It is not the most pleasant of experiences however it is very necessary.
Life is so difficult and as everyone says better me than my children. However, you don't have the choice, so look after her and yourself.
Never hesitate to ask any question, no matter how trivial or stupid they may seem. There is so much information to take in at this stage and my only advice would be to take it slowly. Don't try to understand it all at once.
with best wishes to you all
Susan
Susan
Hi Susan, Thank you for your good wishes, everyone has been a fantastic support to me over the last few days!! The biopsy went fine she was only in theatre for about 15 minutes and when she woke up she was not in any pain at all. That is the thing I am most frightened of that she will be in pain when she comes back around. She may be allowed out tomorrow and then I think she will feel better because she is bored to death!! I will keep everyone posted about future events. Thanks again everyone. Love Dawn xx
Hi Dawn,
Ive only just read your post regarding your Daughter Rebecca.
Im really sorry to hear of Rebecca's diagnosis, its a real shock isnt it. Aaron was also 15 when he was diagnosed.
If its any consolation Sarah Lawson is amazing! as soon as Aaron was transferred there from our local hospital we felt in good hands.
As you have probably read from Aaron's diary, Aaron was very poorly indeed and had a white count of over 600 at one point, this was when he was admitted to intensive care for a few days.
I am very happy to say that these black memories are very much a part of our past now. Aaron is doing amazingly well after receiving a full MUD (matched unrelated donor) transplant in August 2003.
We still see Sarah every 12 or so weeks but I dont think she really gets too concerned about him these days, its just precaution as he was so poorly in the beginning.
I found this CML site to be my saviour with regards to information on CML as in the early days I think Aaron was one of the first children that B'ham Childrens Hospital had seen with CML so the Dr's didnt really know too much about the disease. Sarah spoke to Charlie Craddock at the Q.E. who is a CML expert and he, along with Prof Goldman (another CML expert who has sadly now retired), advised her on best treatment.
He was initially prescribed Glivec but unfortunately due to chromosome abnormalities didnt respond to it and progressed into Blast Crisis. Glivec, as Im sure Sarah has explained to you really is a fantastic drug and she has probably started Rebecca on this already.
I wont go on too much about this, as you have already read Aaron's diary, but please do get in touch with me jaynelister@googlemail.com and I will be only too happy to speak with you.
Stay strong you and Rebecca really are in excellent hands.
Jayne
Thanks Jayne for this message, I know you are really busy with you little girl! Yes Sarah Lawson is really good and Rebecca likes her a lot. The only thing I am dreading is the transplant itself. I have read some diaries about the side effects that go with it and I am really scared that Rebecca will be so very ill. I do not think I will be able to cope with it all. I know that I have to stay positive to her and I do ALWAYS!! But inside I am so scared for her. I bet you have been in this position yourself and know exactly how I feel. I suppose its just fear of the unknown, at least I know that there is a light at the end of the tunnel for her!! Thanks Jayne. Dawn xxx
Hi Dawn, I know EXACTLY how you are feeling. Its amazing really but you really do find the strength from somewhere deep inside you. Its like you go on auto pilot.
If you let me have your e mail address I will e mail you my diary (its quite long) which I kept from Aaron's transplant. You may have read it already, cant remember if I included it in his website, i dont think I did. I re-read it back a couple of months ago and amazed myself at what we all went through and came through. You will too.
I wont lie to you, the transplant is a process which will take your whole family on a real rollercoaster ride. For me, there was such a big build up to the transplant that it was a bit of an anti climax when it finally happened. You are also in great hands of the BMT team at Birmingham, they again are excellent. There was one lady in particular called Gayle who works in the HDU dept where Rebecca will go when she has her transplant, she is extra special and lovely.
Please do get in touch with me and we can have a chat.
Jayne x
Hi Dawn,
I have only just read your posting about your daughter Rebecca and my heart goes out to you. I am a foster carer for a 13 year old lad with CML who was diagnosed last August 2006. He has lived with us for several years and we have been through some hard times together. The CML was the most unbelievable shock to us all.
To begin with his Consultant spoke very positively about doing a bone marrow transplant, but after testing his 4 siblings, none were a match. Initially this seemed like devastating news, but he has been taking Glivec since last September and quickly began to return to his 'old self'. He had been so weak and tired for a while, but to look at him now, you would have no idea that he has CML at all. He plays football, tears about on his bike and leads the very full and active life that a young person of his age wants to lead!!!
We dont know what the future will hold - there will be decisions ahead about whether to stay on drug therapy or whether to do a transplant using a 90% match identified on the international bone marrow register.But we do know that Glivec has given him his life back at the moment. You will find it hard to believe, but we dont think about CML every waking second any more!!! We have a foreign holiday planned for the Summer. We even get cross with him for not doing his homework! (When he was diagnosed I couldnt imagine ever being even slightly irritated with him ever again....)In other words, life can go back to being almost normal.
This website has been a lifeline especially for me. Reading Aaron and Max's diaries gave me such hope! Reading about other people using Glivec for years and being well, made me realise that BMT was not the only course of action. But it does feel lonely at times knowing that this disease is so rare in children.
If you would like to be in touch with us, my email is kestrel17@btinternet.com - I have to use a pseudonym to preserve confidentiality as I am a foster carer.
We will be thinking of you and hoping that Rebeccca is soon back to her old self - having been diagnosed (with very high counts like Rebecca's)at the beginning of August, our lad was back at school full time at the end of September, having built it up slowly doing half days at first.
Very very best wishes to all your family,
kestrel
Thanks Kestrel, Rebecca is back in hospital because she has picked up an infection. She may be allowed out tomorrow all being well. Its good to know that if she does not get a match there is Glivic to fall back on just until one comes along. I`m glad your son is better and hope soon the Becky can get back to school to do her coursework for her exams next year. There are a few kids with CML and all are brave too. Thank you for your kind thoughts. Love Dawn xx
Silly me got my own email address wrong - it's kestrel.17@btinternet.com if at any stage you did want to contact me.
Its great for you and Rebecca that there are other children with CML who are being treated at your Hospital and sounds as though you have been able to meet some of them. Other people's strength and positivity can really buoy you up! Thats where this website's support bcame so important to us, as we havent met any other children with CML at the children's hosp where our lad is treated.
After a few months, he became curious about this website as he knew that I was using it and sometimes I would tell him about things Id read about other people's experiences. He decided to try using it himself and made a few postings. It was a very positive experience for him as he immediately had replies from folk who shared his CML (which is something his friends and I cant do from the 'inside'). For example, he read about someone with occasional pain on the soles of their feet and he realised from their description that he experienced the same pain, but had thought that it was some kind of weird cramp, not anything to do with CML. He was so relieved to have an explanation. He found that he was part of a group that he didnt know existed. Up until then I think he felt as though he was the only person in the world with CML!
Hope you're back home again soon,
Love Kestrel xx
Hi everyone, just updating about Rebecca. Her brother and sister were not matches unfortunately. She is going on Glivec and the consultant will be looking for a suitable donor off the register as a back up. Just hope she responds well to Glivec now. Love Dawn xx
hi dawn,i was diagnosed 4yr ago when i was 26,ihave 2 brothers and 1 sis and they didnt match me,iknow how disappointing it is,they found me a donor in america,im on glivec and doing well,give my love to rebecca,love kathy
Hi Kathy thank you, I know that there is a good chance that she will be okay on Glivec. I just hope that she will have enough time to do her exams next year as she will be in year 11 then. Yes we were upset that her brother and sister were not matches but that is just the way things are at the end of the day and we have to get on with life as it is now. Best Wishes Kathy. Love Dawn xx
Hi Dawn,
Sorry to hear your news about Rebecca's brother and sister not being matches, but Glivec is a great drug with fantastic results. It might seem almost impossible to believe right now, but you really can 'get on with life as it is now' like you said above. How are Rebecca's blood counts looking and is she feeling better? I do hope so.
Love from kestrel xx
Hi Kestrel, Rebecca`s wbc are now 12! What a difference from a month ago, been to fetch the Glivec from the Birmingham Childrens hospital today and she is starting it tomorrow. Fingers crossed that she will be okay on it. She feels okay but gets tired really easily. She went to school for half a day yesterday and fell asleep during maths! She also gets breathless if she walks a distance, she was so fit before all this and she is finding it hard to slow down. How is your son now? Love Dawn xx
Hi Dawn,
So glad Rebecca is starting to feel better. My son was quite frustrated by how tired he felt at the same stage as Rebecca is now. He desperately wanted to be out and about with his friends, but didnt have the energy to cope. He did half days at school for a while, slept or sprawled in front of the TV during the afternoon and then saw his friends for a while after school. They were very kind tho - they spent time indoors with him on the play station or playing cards etc. Its amazing how sensitive 13 year olds can be! He's great now though. He had lost so much weight when he was first diagnosed, but now he is glowing with health. His hair had become thin and very soft, but its back to being a glossy mass of curls again and no-one would ever imagine what is going on inside him. I'm sure you will find Rebecca goes from strength to strength now she's got her Glivec! My son has only had a few side effects - achy joints at the beginning and occasional stomach cramps now, plus very occasionally a weird sensation on the soles of his feet. We are careful he doesn't overdo it and that he gets enough sleep, tho he has managed several VERY late sleepovers with friends - makes up for it the next day by falling asleep on the sofa! CML was a good way of avoiding unpleasant homework, but one way or another, he ended up doing most of it in the end, much to his disgust....
Do keep in touch,
Love kestrel xx
Hi Kestrel, I am so glad your son is feeling better. Rebecca took her Glivec for the first time this morning and 20 minutes later she was sick. I am thinking it was because she took them after having cereal with milk. I am going to try and get her to take them with toast tomorrow morning. She has to take 500mg all in 100mg quantities which is five in a morning. If this does not work I am going to split the dosage up to see if that works. Was your son sick after taking them for the first time? Love Dawn xx
hi dawn,i used to take mine with breakfast but was always sick,tell rebecca to take them with her largest meal,and stay away from spicy food,if you or rebecca ever want a chat email me on kathy.prudence@homecall.co.uk love to u all,kathy
Hi Dawn,
Yes, he was sick the very first time he took it! After that he just felt nauseous and the hosp prescribed an anti-sickness drug called Ondansetron, which he took for a few weeks. He then decided to see if he could do without it and he was fine. Now he takes his imatinib (his dosage is 200 mg now, but it was higher to start with) when he has his evening meal and drinks a glass of water with it. Do mention the sickness to the Hospital -they will hopefully be able to help.
All the best
Love, kestrelxx