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Hello my name is J, I am 22 years old, I am from Spain (sorry for my English) and I was diagnosed with the disease 2 months ago, I have had a quite difficult life due to many personal circumstances and now I have to deal with something like that, which it makes my depression, my fear and my anxiety even greater than they already were.

I have been taking 400mg of Imatinib for a month and a half, in terms of side effects, bone and muscle pain, some dizziness, sometimes rapid heartbeat, swollen eyelids ... But the side effects are what I care the least compared to what It supposes the illness and the psychological instability that it causes me.

I have abandoned my last year of university (I was doing law) and I have left the student apartment where I lived, currently I have returned to my city and my home with my mother to be able to take proper care of my health, I try to take small steps every day  but I notice that everything costs me too much, I do not want to extend myself, so I will comment on some matter, I do not know if to vent or with the hope of receiving some advice.

First of all, it gives me fear, anxiety and uncertainty about the way my disease can evolve, how can I have a normal quality of life? How can I have a normal life expectancy? (taking into account that there is no cure, that the pills can generate resistance, that my life would have to be extended by about 60 years to live as a normal person considering that I am 20 etc ..., in general a set of complicated things that They scare me a lot for a future project and a normal life ..

Second, although less important, the issue of alcohol, I have had problems with drinking in the past, and although now I had it more controlled sometimes I drank a lot, now, due to the disease, the doctor has told me that I can not drink nothing or almost no alcohol, as it would reduce the effect of the medication, however both in this forum and on other websites I have not found anywhere that medication interacts with alcohol (yes I have seen that it must be controlled more because of the liver issue but that you can drink from time to time) so I don't know what to think about that issue or what is the truth about it, since my active social life has always revolved around alcohol (bars , discos, parties, friends, university life ..) therefore the idea of ​​not being able to drink alcohol again makes it very difficult for me, I would like to know what information you have about it.

Thirdly, when it comes to sharing the subject of the disease with my relatives, I don't know how to manage it, only my mother and a couple of other relatives know the complicated details of the matter, as for my friends, they know that I am going through a disease and a complicated moment, but they do not know what it is exactly, on the one hand I feel that I should tell it, naming the disease and sharing it honestly, since it may also help me to take a load off my shoulders and feel more released, but on the other hand, perhaps it is not a good idea to give details about the disease since it can turn against me (other people's opinions, the way in which those who know it treat me, etc.) I know that each person is different at the time to manage this matter, but I would like to know some opinion to clarify a little.

That's all for now, thanks to anyone who has spent a little time reading me, a hug.

Hello J,

Welcome!  I'm sorry to hear that you're having a rough time.  I've always had faith that the treatment will work and it has. I was a little more than twice your age when diagnosed.  I hope that by the time you're that old that you'll be fully cured of CML.  The researchers are continuing to look for better treatments. That gives me hope.

Some of us share our diagnosis freely and others keep it private.  It's really up to you how you want to handle that.  It sounds like you've considered both options, so I'd recommend doing what you think is best for you.  I'm a fairly private person, but I have shared my diagnosis with my relatives and friends and they have been supportive.

Felix Navidad,

Kirk

Hi, I am really sorry you are having such a tough time. There is a lot to take in after diagnosis, and I am sure that your young age makes that more difficult. I hope this will help a bit, but coming to terms with all this does not happen quickly. It is a journey which begins with a few single steps.

CML is condition which can be controlled, and nowadays for the vast majority of patients does not have a significant impact on life expectancy. There is not a lot of data for people who have started taking TKI medication like imatinib as young as you are, but I am unaware of any studies which indicated diagnosis at a young age changes that. Your side effects are probably as bad now as they will get and will reduce over the next few months.

Alcohol is a case of control. You will have a regular liver function test to make sure there is no change in your liver, which is where the imatinib is metabolised. I was on 400mg imatinib for 10 years (diagnosed aged 50) , then reduced to 200mg for a year, and then tried to see if I could stop and remain in remission. That worked for 17 months and the count started going back up so I went back onto 400mg and have regained full remission. Throughout most of this time I have enjoyed a glass or two of wine most weekends, and a glass of beer after exercise with no adverse impacts. There has been the odd blowout at events where I drank a lot more and felt the effects the next day, but I don't think the imatinib made that worse. It affects everyone differently, and over time you will work out what is right for you.

When I was diagnosed my parents in their 80's were in declining health, and I did not tell them. After my father died a friend told me my father, a retired doctor, knew there was something wrong with me. I regret not telling him now. While there is no rush to be open with friends and family, the longer you you live with it and the more you come to terms with it, the easier it will be to become more open about it. Also as you tell people you will play an important part in helping people realise that this is not a death sentence; that you have a condition which you need to manage but it will not define who you are and what you do with your life.

And your English is great.

Best wishes

Alastair

Hi J, I'm from Spain too and was diagnosed with CML when I was 16.

I started with Imatinib and it has always worked good for me. The first year I was more pessimistic, like you, and had to repeat a year in school (Bachillerato) because I didnt bother trying because I thought I would die. The year after I met new people and was a full mental reset, it worked for me. I went to university and finished it, then work like a normal person.
I am 32 now so I spent half my life with CML. My doctor always said that if Imatinib doesnt work there are many more things to try, and not to worry. 50 years ago CML was deadly but now its not!

You will need to assume that you may need to be more careful sometimes (not drinking alcohol at the same time as meds) and be aware that this kind of medication affects you physically and mentally.

I recently switched to Nilotinib to try to reach a better MMR (major molecular response) because I've been on 4.0 forever. My goal is to achieve 4.5-5.0 and keep there for 2-3years and be eligible to stop the treatment.

Hello, thanks for your answer, it is very kind, my best wishes and Merry Christmas !!

Hello, thank you for your time to answer me so completely and for trying to encourage me, you are a good man, my best wishes, Merry Christmas!

Hello, I am glad that you are well at the moment and I appreciate your answer, if it is not annoying, since you are also Spanish and you were diagnosed young like me, perhaps I would like to ask you a question that could clarify me;
How did you handle it on a mental level? a lot of fear and anxiety?
In what way have you been able to lead a normal life? (sports, social life, studies and work life, family project, future etc),
Regarding side effects? (type of side effects, pain, frequency ..),
Have you been able to drink alcohol and party from time to time? (I'm not talking about 15 drinks 3 days a week, or just one or 2 beers or glasses of wine from time to time) but once a week 5 or 6 glasses (gin, vodka ..) It would be wrong at levels of interaction with imatinib or at the liver level? Or would it be something viable if it is not taken at the same time as the pill?
I will certainly listen to my doctor but it is always good to hear advice, opinions and testimonies from people who have gone through the same thing, thank you for your time and sorry for so many questions, greetings!

Hi J

I’ve been meaning to reply to your message for a few days.

When I was diagnosed at 37 I thought god I am too young for this having been told it was an “old” persons disease with a median of about 60yrs. I have a small family and so many responsibilities how am I going to get through this.

I thought to myself what the bloody hell went wrong. What did I do, how did I get this thing. I thought I am so young what if treatment doesn’t work how can I possibly keep this at bay for another 40years by taking a small pill for something that would kill me 100% in 5 years without it.

I was so scared and so angry and so upset in the very early days it didn’t allow for clear thinking. I like many was confused with fear and hijacked by my weary and tired mind.

I am sorry that you are so young to have to deal with this. You’re going to feel many emotions being extra young and the most important thing for you right now is to be kind to yourself and let yourself process everything that you’re going through. That’s the most loving thing you can do for you right now.

Everyone is different and I wear my heart on my sleeve and it was impossible for me to keep any of my diagnosis hidden from anyone. I found it easier to be open and a way to not let it consume my head. What I will say is people don’t know how to behave when you tell them you have cancer, some people are compassionate and understanding and others excuse my french are assholes. Because our cancer treatment is unconventional and because it is so effective you will look normal to people and so well they won’t be able compute you have a deadly cancer but be “normal”. I’ve had all sorts of stupid comments but the one that grates on me the most is “you’re all better now and it’s over for you”. Sometimes you will believe you’re a fraud too but you’re not your treatment is magnificent for the most part. With our current treatment options we can’t quite say it’s “over”. It’s over when cancer is gone and you don’t need treatment. And some 50% of us one day will be able to stop medication. You won’t believe CML is over for you because you’re so early in treatment and that by proxy it is over for you all the time you take your pills. Once you start responding and (you will) you’ll begin to realise that accepting that you have CML is only part of our acceptance but you’ll also begin to accept that a little pill so magnificent is going to allow you to live a full and pretty much normal life if you let it.

I am not saying the road is easy because it isn’t it’s a bumpy ride at times but the plane always lands. I liken CML treatment to being on a flight, sometimes the flight is smooth and sometimes it’s bumpy but we nearly almost certainly always land.

The positives for you are that you are young. We have 5-6 CML treatments should any of those fail over the course of our years: new treatments are always in production and I do believe in the next 10 years CML might be the 1st cancer to be really beaten. If this is how good it is now imagine in 10 years.

The reality is treatment will work, it may work on its own timeline but it will work. For me the hardest part is the mental aspect and keeping my mind in check as much as possible if you let it this thing will consume you.

Now for the things you can and can’t do. There is nothing you can’t do except you must take your pills every single day and avoid interactions namely grapefruit. Their is no evidence that TKI is inhibited by alcohol whatsoever. The only thing to be careful of is your liver as the TKI is metabolised there so just be mindful of that.

I’ll give you a funny story. About 18 months into treatment I said to myself I am going to get myself super healthy. Over the course of 6 months I returned to the gym for hard workout sessions 3-4 times a week I put on loads of muscle again got my cardio up and was eating so healthy. All fruit and veg, no red meat only fish and chicken breast and no alcohol. I felt fantastic and I thought to myself I am in control and my CML is going to fall. Come my 24 month PCR my results actually went up!!! Not by a lot but enough to scare me. This was a bump in my flight and I stopped caring, over the next 6 months I consumed anything and everything not caring what so ever, takeouts, lots of alcohol and lots of processed foods and guess what by my 30 month PCR I had a pretty big drop that got me finally over the MMR line. I am glad I had my blip because it taught me we are not in control. The only control we have is taking our pill out of its box, putting in our hand and swallowing it. And that’s a scary thought and I’ll repeat we have no control over this.

The reason for telling you this is that the treatment works one in its own time and two you have no control over your response. I know many say take this and that and your PCR will drop, I personally don’t believe we can influence it at all other than taking our pill. As humans we all like to feel we have some control over our outcomes when in reality we have very little control over anything in life. So the best thing you can do is carry on being you and your age and just take your pill and that’s it. Alcohol and living a normal life isn’t going to effect your CML or your outcome. Living a balanced life and taking your meds is the way forward. Of course I am certainly not advocating going crazy just be a balanced person. Our bodies tell us when it’s had enough of something so just listen to that.

With all that said you’re going to be fine but you won’t believe it yet. You won’t believe that a tiny little pill that we are so dependent on is going to allow you to live. The reality is it will and that is the part of this journey that’s the hardest for me to accept.

CML is a chronic condition not a death sentence when controlled well with TKI which it is for 95% of people: now we do have to mindful that like all things no one has a guarantee of anything and some poor people don’t have an easy ride with CML and treatment doesn’t work for them. It is very rare 5% but we just have to mindful of that especially on this forum. When I began treatment I didn’t think it was going to work I was very cynical and I played out all kinds of scary scenarios in my head. None of that came true and it’s minds way of controlling the future, the mind needs a way to see an outcome and it’s not always a positive one. I had to learn over the years to not listen to that annoying negative and scary mindset. Most of these things we make up in our own minds very rarely if at all come true.

My advice to you being so young is to start to focus on the things you love because this can strip you bare if you let it. Be with people you love and do the things that make you happy. By doing this day by day the passion for life will return and this journey will get much easier and CML for the most part is just a little ways in the back of your mind. At first you’ll be weak and fragile and over time you’ll become stronger mentally and maybe even one day you might be able to say that getting CML in a strange way was the best thing to happen because now it let’s you live a life more fully, living in the moment and really being present and never taking anything for granted.

You’ve be diagnosed at an awful time with the Covid pandemic you not only have fears literally internally but also externally so I suspect this will also exacerbate your early experience of your diagnosis so be mindful of that too.

I believe in time you’ll overcome a lot of your worries and fears. Once you start to respond this thing goes from a scary tiger to a little kitten that needs caring for. Give yourself time all is going to work out just fine. This magnificent forum and it’s members is what makes my journey so much easier and I am sure over the coming decades it’ll be the same for you. Apologies for the biblical reply I don’t like to leave a stone unturned.

 

Keep your chin up mate!

Alex
 

 

Hello Alex, thank you very much for your long and complete answer, I have read it several times to clarify as much as possible about the experiences and opinions of other people like you who are also going through and have gone through the same thing, without a doubt being able to control the Mind is the fundamental aspect in all this, since it is the most powerful human tool that we have, but also the most dangerous if we do not know how to control it and we let it dominate us, although now it is very difficult for me, I hope that one day I will be able to control my mind and try to make it stronger and more serene, for now I try to meditate every day, as well as do some physical exercise, eat healthy and rest the right hours, I hope that discipline, mental control and the passage of time will help me to turn this terrifying tiger into a little kitten (continuing with your metaphor) and even if this overwhelms me, I will try to continue advancing little by little and try why not, one day have a normal life ..  Thanks again for your encouraging words and Merry Christmas!

Sorry for the late response Jmbnccyn :)

In the beginning it was hard to handle it because I wasn't aware how effective this type of medication is so I was kind of pessimistic. In the beginning I had a lot of thoughts about what people would react if they were noticed if I was in AML (next stage of cancer > leucemia mieloide aguda, which is very bad) or if I died and that made me cry, mostly at night while going to sleep. Through the years this mentality disappeared but once in a while I have a "bad night" when I feel depress for any reason, which may or may not be related to CML. As I said, getting distracted with other stuff like playing games or going with friends helped a lot. I kind of left everything I went through the 1st year as "in the past" so any music that was popular in those days I don't like it now because it gives me bad memories.

I've never been a sports guy and played a lot of videogames so I spent most of my free time like that, playing with reallife friends or people I met online. Studies and work has been always good for me. You can have a kid if you want, CML is not an issue. I'm married now and we will look for a child soon :)

My scoliosis actually affected my social life more, because I was always very tired on my back so I couldn't stay late at night for party etc.. I was also taking my pills before going to sleep because they gave me nauseas, which didn't happen if I was asleep. Because I had very bad experiences with vomiting/nauseas I avoided drinking alcohol, so can't say much about that... I just drink cocacola or any non-alcohol cocktail :P . Just make sure you dont mix alcohol with your medication. You should ask your doctor about how much time to spend between drinking and taking the pills, but most probably he will say that you shouldn't drink too much because of the liver.

Cheers!