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Hi there my fellow CML community!

I am 21 and have been diagnosed two months ago, now taking Sprycel for a month. I have been experiencing major fatigues and unable to even leave my place. Just graduated without any job, I am very worried about my future career life... I had a research assistant job offer but everything was ruined.

Would I feel any better? Could I still carry on to work in a laboratory? There are plenty of carcinogens for sure haha! Any research related members around?  

Anyways it is my pleasure to join this community :D

Welcome to the club that no one wants to join.  It is not unusual to experience fatigue on TKI's especially at higher doses (I assume you were started on 100 MG).  There is evidence building that the correct starting dose for Sprycel should be 50 mg and even some evidence that even lower doses provide the same or even greater response.

Over time, your body should adjust/adapt to the TKI and side effects will likely get better.  As impossible as it sounds, I suggest that you start a regular cardiovascular and weight training program.  I never stopped mine in the early days after diagnosis even though it was incredibly hard because of the fatigue and other side effects I was dealing with.  Also, if you don't already eat a healthy diet, consider switching to a "whole foods" diet. I think that my diet and workout routines have helped to strengthen me and in turn helped with TKI side effects (I am on 150 mg Tasigna, but started on 600 MG 21 months ago)), particularly fatigue. 

There is a wealth of knowledge and caring on this site - stay with us and you won't feel so alone. 

Thank you Jax for the awesome advice. I am starting with 100mg but I guess there is no reason to reduce the dosage on my own, probably will take this concern and discuss with the healthcare professionals. 

The side effects are really depressing, but exercising is definitely a great way to lighten things up, I think I should be heading to gym soon. 

It is always awesome to have you guys around! :)

Sorry to hear you got diagnosed with CML so young. I think you have a bright future ahead of you. You just need to get through the first few months on Sprycel which can be very fatiguing as the body is getting rid of the mutant clones and rebuilding your blood system. 

I work in research although not in a laboratory.

Maybe you will end up in a research lab investigating a cure for CML? :)

Hang in there!

Hi there, 

I'm on Sprycel / dasatinib as well. I definitely feel more tired than I used to, but dropping my dose (to 50mg) has definitely helped a bit at least. I work a 4-day week to help compensate.

For me the most tiring piece was the first few months. Lots of that is caused by the mind-bomb of it all so it's not unusual to feel mentally and physically exhausted at the moment so in many ways the only way is up!

David.

Hi J. 

Hang on in there . The first couple of months are def tough ( where you are right now ) but my husband felt much better when his red blood counts started to return to normal range a couple of months in and he had got over the immediate shock of the diagnosis. And I hope it will be for you as well.  Try to keep yourself hydrated, eat healthily  and exercise when you feel able. And go to bed when you are tired and don’t try to fight it. Just take it a day at a time right now and try not to worry about the future .

My husband leads a pretty normal life now and while he isn’t in research he does spend a lot of his time working on pretty complex algorithms so needs a sharp brain. He reduced his dose to 50 mg a few months ago and that has helped with the fatigue and other side effects. He feels much better now than pre diagnosis. 

i hope that you have friends and family to support you.  this is a very supportive community as well and it has been such a help to my family. 

Take care of yourself , Louise 

 

Hello,
and welcome again. 

As other have suggested, hang in there. The first few months are the hardest, both in terms of side effects and emotional turmoil.

I started out with Sprycel 140mg; even at that dose, after 3 months I was able to take a 4 days business trip abroad. In a matter of months I resumed my usual working routine. Now I take things in a slightly more relaxed way, but that is a choice, not something that I have to do because of TKI.

Later on, as many others here, I was able to gradually my dosage (80mg now) and things improved even more. I agree with you, just follow what your doctor tells you, and get to MMR. In due time you will start thinking about reduction, and if you're lucky even treatment free remission.

I wish you all the best for your recovery.

Cheers,
Davide

 

 

Thank you all for the replies, it was a bliss to read through encouraging words from the community.

I have started some slight jogging since then, while I cannot feel any improvements yet, the endorphins secreted during aerobics are definitely something I enjoy. 

However, my sleep cycles are now quite disrupted, I now sleep at 6 in the morning (sometimes even 8) and wake up at 6 pm. It was very frustrating yet I could not really cope on this, have anyone experienced similar problems? Also I get quite some headache right after I get up, it often last for 15 minutes only though.

I will be updating my hematologic response soon! Thank you for all the advice -- I will be keeping an eye on the side effects!