Never thought one day would join this club. My son got diagnosed with this disease in November after he had eye problem. He is just 19 yrs old. It was very shocking and devastating news for my family. He was always a healthy boy. To get diagnosed with such a young age is very rare and shocking. He is on 100 mg Dasatinib. His blood counts are better now. Does age matters in connection to the treatment or in better outcomes for TFR ? I'm
very worried about his future.
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Below is a reference to CML in children and young adults:
100 mg dasatinib is a high starting dose based on latest research. If your son is responding well to dasatinib, lowering his dose will lessen side effect risk and continue to be effective (in some cases more so).
Thank you for your response Scuba. Read the article. I know its a different issue with children as it affects their development but for young adults it says not a better prognosis than older people. I'm more worried now .
The doctor started with full 100mg but he had low blood counts in the starting so they stopped the treatment for a week and then restarted with same 100mg. His blood counts are better but still little low neutrophils and rbc They check once every week. I asked his doctor if lower dose is better but she denied.
Hello Myra, I hope you're encouraged by the fact that the prognosis for adults (and young adults) with CML is a normal lifespan.
The fact that his blood counts went down is a signal that the medication is well absorbed and getting where it needs to be. Did your son have an extremely high WBC when diagnosed? Some doctors start their patients on hydroxyurea which can adversely affect blood counts. So that's also a possibility as to why his counts went down at the beginning of treatment.
It's worth pursuing a lower dosage as that can reduce side effects over the long term. If you can locate Scuba's account of his early treatment, you'll find that he had an excellent response on a mere 20mg dose per day.
Sorry to hear of your sons diagnosis at such a young age.
We have had a couple of youngsters on this forum in the last month.
I dont want to over repeat myself but for the most part try to forget that this has the Cancer word attached to it. Yes it is a Cancer but it is a form that for the vast majority live a full and normal life albeit with a pop of a pill and regular testing to make sure things are in check.
Try to think of it as a more general blood condition. CML is a chronic condition because it is controlled well and very easily once he starts medication.
The why part of why he has CML is a tricky one. None of us know for sure why we get it. I belive mine was continued stress and a weaking of my immune system. The why doesnt help anyone and youll learn to get past that at some point and so will your son in time.
He is very young so he will no doubt at some point in his lifetime be free of it one day. Treatments are improving all the time (Theyre already excellent for the majority) - the question youll ask yourself over and over again is is my son one of the majority. I did over and over and because things can change for anyone once he reaches the required milestones of CCYR or MMR you can move past this physically and the mental does follow. I can't tell you how much of a different person I am now having reached all the required milestones. This puts a lot of mental and physical strain on your son and those that love him.
Please reach out to me anytime
Yes the fact that he can lead a normal life was a big relief after his unexpected diagnosis of this disease with a C attached to it. He had a very high wbc count in the starting 410 something. He was in hospital for 6 days but had a very good response from the start. His blood counts are stable after a month but still some are low. Hemoglobin is 11 and he goes for blood test every week.
It is very rare for a 19 year old to get this disease. I used to think a lot of what wrong we did in raising him as a child that he acquired this disease and why him but as you said no use of this approach. The only way to deal with it is to take positive approach as it is very treatable and he can lead a normal life. He is very young and studying in college. I hope for his bright future. As a mother, it is very difficult for me to see my son going through this. My son is strong and took his diagnosis with positive
approach. He misses going out with his friends.
Blood counts are almost in normal rage after 4 weeks. But still low neutrophils and Hg is 11.
He still needs to go every week for blood test. Doctor said once in complete hematologic response he will need blood test once a month.
Thank you so much Alex for your encouraging words and support.
Yes unfortunately it is rare but it is also rare for people like me in our 30s and 40s. I was told it’s an “old” person disease. Well they clearly got that wrong!
My mother often says to me what she could have done to prevent my illness and the reality is nothing. It’s not a hereditary disease but rather a fault in our own DNA so to speak. And the only known cause is Nuclear exposure such as Chernobyl like event.
Yes the why and the how is unimportant and moving forward really is the only way to get through this. I honestly believe if it didn’t have the “cancer” name attached to it we’d be so much calmer about the whole thing. The reality is that it’s only cancer by definition, luckily for the majority of us it is nothing more than a malfunction that’s corrected daily by meds. Try to view like that if you can. With all that said (and I have a habit of repeating myself) a very small percentage of us have a much harder journey and we shouldn’t discredit CML for what it is it’s just we are very very lucky to have amazing treatments.
Give things time - you’ve got amplification of what’s going on in the world to worry about too so just be mindful of that.
Reach out anytime
You are right that because of the Cancer word attached to it we are so scared and tensed. It becomes far more easy if we take it as a bone marrow malfunction or blood disorder without the word C . Its unfortunate to be in this condition but still lucky to have this type of Luekemia. The treatment looks promising with just popping a pill and regular blood test. I hope my son achieve Cytogenic response in time and continues his engineering as scheduled. He is in out of state and I was looking for his transfer in home state because of his health issues now. Let's hope for the best.
Thank you again Alex for your concern and advice. I really appreciate it.
My son was just diagnosed as well (this December 2020) and only 22. It has really been a roller coaster. It is hard with him being an adult and yet so young to handle all of this when only moments before was just worried about finals. With Covid, we have not been able to join him in the hospital or to meet with doctors. Hopefully in the not to distant future he will be in a routine with a good response, but right now it is a lot of ups and downs!
Hi, I can totally relate to you on this. My son was diagnosed in mid November 2020 and only 19years old. He just turned adult to handle all this and gave his finals in December. I was lucky that we could be with him in November as Covid situation was ok but started becoming worse. My best wishes are with you. He will be better and recover soon .
That is good he was able to take his finals. Hopefully he will be able to return to a normal routine and school 2nd semester. My son was able to postpone his exams but will hopefully be able to take them soon. He's been having complications so not anywhere close to a routine yet, but hopefully soon. Best wishes to you and your son as well!