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Finding a healthy balance

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Hi all,

Instead of continuing my lonely worrying (CML sure can make you feel lonely!), I’m keen to learn more about other people’s thoughts & experiences on one of the major things I’ve struggled with since diagnosis...

Diagnosed June 2017 after random mention of night sweats to my GP. Blood results (high platelets especially) meant rush to hospital then diagnosis - BCR-ABL at 240%, falling to 87% at 3 months, 10% at 6 months but still up at 3% after 1 year - Imatinib deemed a failure & I’m on to Sprycel as of last Thursday.

Since diagnosis, & especially since the failure of Imatinib, I’ve been concerned that I’m not finding a healthy life-balance. I work full time in a demanding & sometimes stressful job, have 2 young children, try to exercise regularly etc - life is pretty busy.

Keeping life as ‘normal’ as possible is, for me, the easiest way to cope mentally & I’ve been lucky to avoid serious side-effects but I can’t escape the worry that keeping life so busy & often stressful could be part of the reason for the failure of Imatinib. Perhaps I need to slow down & give the drugs a better chance of working...but then I worry that I’ll sink into being ‘ill’ & struggle to get back on my feet again...

As you can guess, I’m confused & not sure what to do for the best - I’d love to hear how other people manage to find the right balance.

Thanks!

Victoria.

Hi Victoria - I remember diagnosis. The stress of 'not knowing' can be intense.

What dose of Sprycel are they prescribing to you? Ideally they would start you off at 50 mg to test how you respond. They can go up or down after that depending on your sensitivity. It is 'old information' to start patients at the clinical trial dose of 100 mg. Something to discuss with your doctor. You should have weekly blood tests to track how your blood counts respond.

 Imatinib also failed me. I never had your response and was switched over to Sprycel. I was started at 70 mg which lasted one week. After many on and off again dosing - I was able to settle at 20 mg Sprycel and the lower dose worked better and faster. I am PCRU today still taking 20 mg. I will be stopping soon to see if it can hold.

You are going to be fine. CML will not kill you. That's past. What you need to do is find the right drug at the right dose that will keep your CML trending down. It's a bit trial and error as we are all unique in how we respond to these drugs. Your doctor should work with you on this. One size (i.e. dose) is not for everybody. Over time you will discover what works.

Hi Victoria 

Wow I have never heard of anyone with a diagnosis of 240%. I hope it gives you heart and faith that there are many tortoises on this forum who didn’t reach the milestones as quickly as the guidelines say , but are still doing really well. I hope Sprycel will get you there :) 

My husband sounds quite like you. He only had a week at home after diagnosis and that was mainly due to the severe gout attack ( which led to the CML diagnosis ) than the CML. Right from the start he hasn’t wanted it to define him or to think about it or talk about it unless he has to. He has told almost no one as he doesn’t want it to define him. For him being happy is thinking as little about it as possible and leading as normal a life as he can.

So I think if it makes you happiest to live your busy stressful life with your kids and you are able to do so, you should do it. Just take breaks when you need to and be selfish about it. My husband def rests more and goes to bed earlier than before but really that has been the only change. 

I was the one who found his diagnosis lonely as I couldn’t talk to friends. I hope you will find this forum an escape from that loneliness.

 

best Louise 

 

321% at diagnosis for me. I wasn’t the fastest responder, and still at 1% after a year. But now a few years later I’m at MR4.5 and on 50mg of dasatinib. 

David. 

I havn’t changed much in my life.

I work full time and have three kids, the youngest 1.5 years. 

I think since CML maybe I listen a little bit more to my body. If I feel tired, I don’t push it like I used to, I allow my self to rest. And I try to live a bit more healthy. Other than that not much has changed, I work full time etc.

I also have not told people other than closest family about CML. I find no reason to. 

Hi David,

Any thought to lowering your sprycel dose down further - to 20 mg?

CML reminds us that are mortal.
Before, CML I never about it that much.
Our balance is.. 'Every day accomplish something'.
No matter how small or how big.
At night sleep in the comfort of that accomplishment.
Start all over the next day.

Romo

Good for you, less the youngsters, my life continues much like yours. Only my good friends know, at work no-one. I don’t mix my private life with work and don’t care to treated differently.

In time, 20mg is definitely on the radar. But probably not for a very least another 6 months or so ... I have babies coming any day now so have enough on my plate for the time being! 

David.

Hi Scuba,

‘thanks for getting back to me, I really appreciate it.

I’m on 100mg Sprycel. Based on your posts, I questioned this with my haematologist last week, telling her that Sprycel works differently to Imatinib & a higher dose isn’t always more effective. She said that she’s never known of any other dose than 100mg. To be fair I’m only her 3rd CML patient so she’s playing by the book. I’m hoping to find out more about this side of things at the patient conference in September as I know my haematologist often checks results & decisions with Dr. Copland, who is speaking at the conference. 

I’m back at hospital for blood tests next week, 2 weeks after starting Sprycel. My WBC has been low for a while, hovering below 1.5, & my haematologist wants to keep an eye on this plus check how everything else is looking.  What caused you to lower your dose just 1 week after starting Sprycel?  

Delighted to hear things are going so well for you now. Hoping to settle down at a ‘safe’ level myself soon.

Thanks again, stay healthy.

Victoria.

 

Hi Louise,

thanks for your message. I agree, this forum is a gift, I felt very lonely & scared after my diagnosis then even worse when it became clear that Imatinib wasn’t for me. It’s reassuring to hear that we all respond in different ways, really keeps those scary middle-of-the-night thoughts at bay.

I’m going to keep doing what I’m doing but listen to my body a bit more. I think we all benefit from being a bit kinder & less demanding of ourselves.  I agree completely with what you say about thinking about CML as little as possible, I keep thinking that once I hit remission it will fade into the background a bit - fingers crossed!

Thanks again for your kind help - all the very best to both you & your husband

Victoria.

Hi Victoria,

Show your doctor these references:

http://www.bloodjournal.org/content/118/21/4440?sso-checked=true

[http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.e18551

Conclusions: Dasatinib 50mg daily is active and well-tolerated in newly diagnosed CML-CP. It should be further explored as a new potential dose-schedule standard-of-care in CML.]

Dr. Cortes (second author) is one of the top four specialists in CML worldwide. He is also my doctor at M.D. Anderson. He put me on 20 mg Dasatinib in response to myelosuppression I was experiencing (similar to yours). He told me in patients with significant suppression, high dose Dasatinib is counter-recommended. He didn't even go to 50 mg, he went straight to 20 mg telling me "we want to get the dose right for you. Because you have no blasts, we can see how 20 mg works and increase dose as needed. Having no blasts gives us time to 'experiment' ". I remained on 20 mg ever since and once my dose was lowered, my response jumped markedly. I am PCRU today (on only 20 mg Dasatinib).

The theory is that full 100 mg Sprycel in the presence of myelosuppression weakens the immune system from attacking CML. A lower dose actually works better in myelosuppression cases (and Pleural Effusion). Not everyone reacts the same way and when myelosuppression occurs, the adjustment should be to lower dose and work up - not start high and work down. Starting high can actually produce a poorer CML response.

My first doctor (hematologist) who diagnosed me, I was only his third patient as well. It was clear to me he had little experience and only could go "by the book". I sought out Dr. Cortes. I am so glad I did.

You now know more than your doctor does. Think about that.

Brilliant Scuba, thanks.  I’m back to see the haematologist next Thursday, will let you know how I go.

Feeling less lonely & also reassured by all the responses - agree with others’ posts that this is a group no-one would choose to be part of but I’m so glad of the warmth & support of this forum.

Thanks again.

Victoria.