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New here, I am having a difficult time.

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Hi everybody, 

I found this site via google and I really just wanted to talk to someone that might know what I'm going through. 

I have been on Tasigna for the past 7 months and I was on Imatinib for 3 before that, after I was diagnosed. I am taking the bear minimum of medication and it keeps it down fine and all blood results are good.

I have had side effects throughout the whole time.. tiredness, its hard to fall asleep and hard to wake up, serious headaches and I am taking strong painkillers for that and I have been for a while now so my body is used to them as a result, so that is going to be another issue as well.

What I wanted to ask, is there someone here that has experienced this also? It is really beating me down and its hard.. My girlfriend is really supportive and with a 2 year old that takes a lot of my energy I don't know what I would do without them. I was in the gym every day before I was diagnosed, now I feel like I have been in the sauna after I vacuum, I get hot flashes and have sweat dripping down my face while laying on the couch. 

I sometimes think its getting better when it goes back to the same situation.

 

Just really want to know if this will pass? Has had a similar experience? Something.

 

Best wishes,

Gudmundur.

Hi,

What I wanted to ask, is there someone here that has experienced this also?

Yes!

I'm sorry I don't have a huge amount of time to reply right now, but everything you have mentioned are things that people here will be familiar with. Sometimes there are easy solutions, other times there are hard ones - but still solutions. Sometimes there isn't a solution, but a way of coping.

Lots of us here are having a difficult time, and whilst it's good to stay positive when possible we are all here for each other for when we are feeling good, bad or indifferent. 

I suffer from many of the same things as you. Sleep is hard, energy management is difficult but we find a way to adapt. You're not on your own.

On a practical level, people here will be able to give you some good advice. But sometimes it's just good to know you're not alone. 

David.

Hi

Sorry to hear about your position at present.

Just to back up what David has said, you are not alone with suffering from issues.

Can I ask why you switched from Imatinib after 3 month and where are you based?

I have now been in the unusual position of being on Imatinib, Nilotinib, Dasatinib and now Bosutinib. I was diagnosed nearly 3 year ago, and like you have a 2 year old son and a very supportive fantastic wife.

Over the last few years, I have suffered from moving pain in different joints and muscles that appeared around diagnosis and have never let up fully. Some people suffer from gastrointestinal issues, for others eyes, whilst some people may have nausea and headaches... Some (maybe more) have mild to no side effects it would seem.

The point being this, we are all different and I am glad you have found this support forum, as it may go a long way to help you feel that your not alone.

If this has come about following diagnosis and with the introduction of TKI's, do you believe it is side effects to your TKI? If so have you spoken to your team about this?

I am personally reading more stories of people having unwanted effects of treatment. We all know how important the treatment is, but you need to speak to your medical team and see if this is TKI/CML related in their opinion.

Wishing you all the best.

Kind regards,
John

Hi and thanks for kind words, I am also glad I found this forum.

I switched the meds because I think the side effects were even worse on Imatinib, and I was moving from Iceland to Denmark so my doctor just switched me before I left so it wouldn't be as much of a hassle when I got to Denmark.

I am going to see my doctor next week and I am going to talk to her seriously about if there is some other drugs I could try because it really affects my way of living. Till now she has always asked me to hang in there a little while longer and see what happens, I was talking 400mg twice a day but now i'm down to 150mg x 2. 

We will see what happens.

Best wishes.

Gudmundur

Thank you for the reassuring David, I am glad I am not the only one this is happening to.

It has been so hard, I am 28 and I can barely clean up around the house without being exhausted and dripping of sweat. I try to spend the energy I have with my daughter.

 

Best wishes.

Gudmundur

It may be worth asking where you are from a molecular perspective. If you have a very good response and therefore are sensitive to TKI's that may also be worth discussing a redution of Tasigna before a switch. At one point I was on 150mg x once per day and had a mild dose of pain relief and that was probably the best I was throughout my time so far. Again discuss this with your medical team.

I know how you feel regarding reserving energy to get by, for the last 3 year I have been slowing in work and life in general. I'm 36, and was super fit prior to diagnosis.

The good thing is you have options left, so try not to get too down. A year in, is still early in diagnosis so be kind to yourself.

John

Also, sex life is not very good at the moment because of all of this.. my energy is not good at all and I have used Cialis from the doctor and it helps with keeping it up but then also the energy plays a part because I cant really keep it going for long because i get exhausted, its like Ive been in a sauna after 10 minutes and I can barely breath.

Anyone familiar with this? I think I should definitely talk to my doctor about trying something new.

Best wishes.

Gudmundur