Hello! My name is Misbah and I am 28, I was diagnosed with CML in November 2021. Even though I have amazing support around me it has been a very hard and lonely battle as it feels like no one truly understands me and this big change in my life. I was ready to start a family with my husband and had so many plans which are on hold for I don’t know how long. I take dasatinib and started on a dose of 100mg which made me so ill it was scary, I have been up and down with my doses as my body is just not taking to it well. I have good and bad days but overall my mental health is just not good. I would really love to speak to and hear about others going through this journey and hopefully find some goodness through this horrible time. Thank you for taking the time to read this ❤️
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Need more support with my CML diagnosis
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Hi Misbah,
I remember like it was yesterday 12 years ago when I was diagnosed with CML. You will get through the tough part and come out on the other side stronger. You will be able to start a family too! What you need now is vigilance and to learn all you can.
You likely do not need to take full dose dasatinib (100 mg) - especially if you are having debilitating side effects. 50 mg is emerging as a new starting dose for patients. Consider discussing with your doctor about lowering dose and monitor response closely. You want to discover the lowest dose which works for you. The lower the better as long as you are responding to dasatinib.
What is your PCR level? Once you achieve a PCR < 0.1%, you can think about starting a family. I know several young woman with CML who started families and were able to keep their CML under control during their pregnancy. They did terrific! One had twins! - And both are now "undetected" for CML.
You will beat this and you will have the life you dreamed of having.
Hi Misbah, sorry to hear of your diagnosis and at such a young age. My name is Mina and I got diagnosed in October 2021 just before my 55th birthday, came as a real shock! My only symptom was weight loss and initially thought nothing of it, it was only when we got together with family in September, due to COVID hadn’t seen family members for nearly 12 months, who were alarmed at how much weight I had lost and persuaded me to go to the doctors. I went to the doctors last week of September, got sent for a blood test and got called to the hospital 1st week of October to be told I had CML. I am on 600mg Nilotinib, 300mg morning and evening. Mentally it will get you but like me if you have amazing support of family and friends you will get through, I shut everyone out initially and even got to the point where I didn’t want to speak to people and see anyone but then you realise these people are the ones who are going to get you through this! I am now back at work doing half the hours I used to, still get really tired and I have had so many side effects but I manage them, don’t get me wrong there are days when I think how am I going to get through today. This is our ‘new normal’ for now but it will get better. You are so young and you will get through this!!
Hi Misbah. You will find lots of support here but i would also recommend the forum on Blood Cancer Uk. That offer alot more support with regard to the mental aspect of going through diagnosis and treatment but it is a general Blood Cancer site and not specific to CML. You will find lots of people with similar feelings to yourself
x
Hi Misbah,
Gosh we can all relate to what you are feeling and going through. It is all a part of the process and it is completely normal to feel the way you do. I can assure you you're not alone although you feel like you are. I had a terrible time mentally dealing with my diagnosis and now 4 years in and nearlly MMR4 I honestly barely give the thing a thought (truly and honeslty). You won't believe it because you have not arrived at that destination yet. With this disease TIME is the biggest healer because through time your PCR numbers will get lower and when they do along with each decrease you will regain a part of your old self. That's truly how I feel. And in 4 years from now (or much sooner) you can pass this message onto the next person who is diagnosed and having a hard time coming to terms and dealing with this disease and diagnosis.
Take it all in your stride, I became very selfish in a sense I always take the time I need to deal with stuff, if you dont feel like doing anything don't do it, or you don't want to see people don't do it. Do the things you love and spend time with the people you love and you will see in TIME that life really does return to almost complelety normal - and in some ways i'd say honeslty my life has been better after diagnosis because it has forced me to take care firstly of my mental health and of course physical health, and to tackle a lot of supressed stuff.
Reach out to me anytime.
Take care
Alex
Hi Misbah, I think we are in a similar position. I'm 31 and I've only just been diagnosed a few months ago, but I've been feeling really lonely with it too. I have made some friends my age with other leukaemias, but they are both going through more intense chemo and I feel a bit pathetic complaining to them about my changes when they are both in hospital and I'm at home. But at the same time I don't have many people in my personal life I can offload too, or at least I can but I don't want to upset them with how bad I feel all the time! Or it's hard to talk about with them because they don't really understand. Anyway, if you want to chat about it, I'd be really up for that. :) I'm kesellanutella on socials or I can drop my email.
Thank you so much for replying. I can’t believe how long you’ve had this for but I hope you are doing well.
At the moment I’m on 70mg it’s not the worst some days are worse than others and I think my pcr level is about 0.4, they have said to me they are hoping by next year I can maybe think about kids so I am just trying to keep a positive and open mind but it’s not always easy.
Your words have really helped, thank you so much
Thank you so much for taking the time to reply to me. I am so happy to hear about how you’ve dealt with this and I can’t tell you how much strength your words have given me.
I tell myself everyday I’m going to have good and bad days and that it’s ok to break down sometimes but also remain hopeful and positive and remember all the great things in my life. It’s hard but we get through it.
Thank you so much again ❤️
Hi Misbah,
My partner was diagnosed on 12th of April, and we started treatment 2 weeks ago. We are both 22 years old.
She started on 100 mg dasatinib, but developed a skin rash alongside minor nose bleeds and we were told to stop taking dasatinib and will discuss things further tomorrow. We were hoping to start at a lower dose of 50mg as Scuba mentioned, but the consultant didn’t agree with this - M.D Anderson had done some interesting research on it. Its still a relatively new topic, to start of from a lower dose as a first line treatment. Our consultant suggested to start from 100mg, then decrease the dose when achieving BCR ABL <0.1 or when she develops major side effects. But now makes us wonder that the rash, stiff neck and the nose bleeds could be avoided by starting on the lower dose.
The treatment works well, we were able to reduce the wbc from 50,000 to 16,000 in just a week.
We split “roles” and we agreed that I do all the research, reading etc … and she just focuses on her self. She’s fortunate enough to be able to work from home, which keeps her head busy and allows her to do moderate exercises during the day which helps with the fatigue.
This forum is a great place to ask questions or even go through older posts to find useful information ; people on here are very knowledgeable and helpful. My partner and I are into nutrition and supplementation as we are firm believers that appropriate nutrition and supplementation can help ease side effects and help achieve better results. But consultants and nurses tend to have limited knowledge and sometimes the attitude is ‘just take the TKi and it’ll be fine’. But can’t complain, we are getting great care from the centre we are being treated in and are very grateful.
We are also planning to start a family, hopefully in the next 5-6 years with the ultimate aim to try TFR by then.
In regards to mental health, its definitely a roller coaster of emotions and as you mentioned some days are better than other.We like having targets or something planned that we look forward to, we have a Holiday booked in November to the Dominican Republic (it was booked before the diagnosis) and the ultimate goal is to be able to attempt TFR and start a family; these are the targets that motivates us and gets us through the days. We also try to not overthink things ( i know its hard) and Take each day by day. Also our perspective of life had changed, probably for the better. The problems we thought were problems before the diagnosis turned into nothing and we laugh them off, we had definitely slowed down and are enjoying life more, noticing the little things that bring joy :)
Sometimes it feels like she’s doing emotionally and mentally better than myself, but I am happy to take that trade.
It was also reassuring to be able to reach out to people in our age group and find out their experiences, this forum is a great place but also look for groups on facebook :) Feel free to contact us if you wish to discuss anything, either on here or on social media.
All the best ,
Kamil
Hi Misbah
So sorry to hear about your diagnosis.
Hang in there , things will get better.
CML has now become a treatable disease , the initial few months can be challenging as you adjust to the new medicine and this new diagnosis but trust me things will get better .
With the advances in medicine , this disease has become very much manageable.
There are a number of wonder drugs out there that will help you lead a normal life .
Do integrate meditation or incorporate any hobby that you love in your life to take your mind off this .
I promise things will get better as your body gets accustomed to the new drug
Good luck
IMHO I would not put anything on hold. My kids were 5, 8, and 12 when I was diagnosed. My oldest just started university this fall. Of course I have gone through ups and downs with worries about not being around for them. Over time I have learned to be there for them today. I pray that I will be around for a long time. That was my prayer early on and continues to be so. I am 6 years in and think about it less and less. I have leaned to look at it like the type of diabetes that you take pills for. Mutations and other such problems can arise, but so could so many other things that I do not give a second thought to. So, I put it in that category. Live. Hope you start feeling better soon.