Hello, would you mind sharing with me what mutation your son had? My son who is two next month has ALL with a MYC gene rearrangement , and just wondered if it was the same as there is not much information on it. So glad to hear your son is doing well! It gives me hope for my baby!!
Hi, it doesn’t have a name it was a long number and letters. They had very little info on it, none at all for adults, so it’s now being written about in some medical papers. All I know is it was extremely rare, and they believed it responded in the same way the Philadelphia chromosome does even though he was Philadelphia negative. When he failed induction( very dramatically) they put him on a drug called Imatinib which helped him get to remission so he could have a stem cell transplant, as they expected this would be his best chance to stop it coming back. I’m not going to lie, a transplant was tough. But he’s doing great now. How’s your child doing? You get children tend to do better long term I heard. Lots of love to you, I know how you must be feeling. Message me if you ever want to chat x
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Hi,
Thank you so much for getting back to me! Its so so scary when its a rare form! Our little boy Fraser was diagnosed with standard ALL, then after the induction we got a call to say he had an extremely rare genetic mutation which needed a separate course of treatment! The MYC is from the Burkett non Hodgkin family and he is now undergroing high intensity chemo (peds non Hodgkins protocol). Considering his age, he is doing an amazing job! He has unfortunately under-come all of the horrible side effects as it is so intense, but this week we should hopefully be hearing that he is in remission! With his cancer, they had to consult with oncologists all over the country as they hadn’t really come against this before! Its been hard being the only parents on the ward going through this! Its gruelling, but we get through it! Thank you x
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Hope you get the best news this week, what’s the plan for him then? It must be so hard watching your baby going through it, it was hard enough watching my ‘baby’ and he was 17!
The same thing happened with him, they were consulting with doctors from all over the country as they had to make the decision what to do next with him after they got him to remission. The rare mutation used to scare me a lot, I decided, in my own head, that this must be a worse case. Then a nurse explained, it’s just different! Lots of love to you x
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Hi,
Once he gets the remission (im thinking positively) then he only has three rounds of chemo left and his hickman line can be removed! Its a lot shorter but very intense plan (only 6 months from start to finish)! Its just so scary and the unknown when its a rare one! Our hospital has never treated this before!
Your son sounds like an incredible guy- well done to him for going into his studies- amazing!! One of the toughest challenges we have had is as Fraser was 18 months when diagnosed- we have had no speech! So we cant ask him if he is in pain or feeling unwell! Its been a massive struggle!
Thank you so much for sharing this with me! Its been a nice feeling to off load!!
Ali 
️ x
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It’s good to think positively, please let me know how he gets on. Jamie was treated on a Teen and young adults ward, so the families we met all had children between 16 and 25 and some haematology adult patients too. We spent 15 weeks in total in The Christie in Manchester, one of his doctors is on bbc tomorrow morning I believe, discussing blood cancer. Ironically we will miss it as we have to set off early to go to the Christie for Jamies bone marrow taken. Jamie goes off to uni, a year later than planned, on Friday. He’s really excited but I’m nervous as he will be three hours away!
Your poor little man, it must be so hard when they can’t communicate to you. Jamie went through all kinds of emotions, which is understandable, it was hard to watch at times. Living with uncertainty keeps me awake at night, but Jamie is such a happy positive person, that it keeps me grounded.
Do you have any other children? I have three others, Jamie is my eldest. Harry, the second eldest was his donor for transplant. Is your little boy having treatment as an inpatient or outpatient? Sorry all these questions, I’m interested how different hospitals do it.
After consolidation treatment I expect he will then go onto maintenance? We have a friend that had this treatment. It’s how Jamies was planned to be, but was changed to transplant.
I hope you get great news this week, will be thinking about you. Take care,
Helen x
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