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Working whilst on sprycel

Hey there

I’m Nancy, I was diagnosed with a CML on 03/17, and have been on TKI since, gleevec didn’t work for me (uncontrollable side effects) and sprycel has been working for my bloods & I like a charm.

I took a year to adapt recently started applying to uni and look for work. I found an agency that offers different types of jobs and was offered two shifts over the week-end that I accepted.


Whilst the shift was happening, I told myself it was not bad at all, that i could actually do it, even if it were just four hours standing,  still a good start for me!


Later in the day I started getting cramps all around my body which I should have expected, but now I feel sick, I have this shooting and stabbing back & abdominal pain, I feel like I’m on gleevec all over again. I have another shift tomorrow and I don’t know if I’m up for it. I should also say I have been diagnosed with anxiety and depression, I have unrelated health issues, I was told it came from the bowels, my GP couldn’t tell me more and I’m waiting for the specialist (gastroenterologist) to call me!


I feel a bit hypochondriac I immediately tend to go to extremes since the first time I went extreme it was spot on, I was diagnosed with a Leukaemia...  I’m wondering if it really is straining my body or if I’m self sabotaging


Please enlighten me
Kind regards

I went through a very dark time soon after my diagnoses.
Even though the Sprycel was working great.
The drug did cause side effects but my
depression exaggerated this. I went dark.

I felt like I had failed all the people that count on me.
I was a ghost.
I call it the ‘Other side of CML.

Two years on I can say it’s much better.
First you heal your body, then you heal your mind.
Many people live with CML and function fine.
And recapture their previous lives.
Find your stride, it’s worth it too live and have fun.

Romo

Hi Nancy, - Like Romo, I have struggled quite a bit too. It is nice to know that our disease is very treatable and that almost everyone lives a very long time, just fine, after diagnosis, with TKI. Still, there are so many ups and downs. I was diagnosed a month after you, and I think I understand very well how you are feeling. Sometimes there is still pain, discomfort, anxiety, and even depression. Let us say we are going through a rough patch for a while and that we will feel better with time after we have been able to adjust to this new reality.

I quit my job a few months ago because I couldn't manage it all. Maybe I'll work again after a while, who knows? We do what we can. It is OK.

If we look at it as glass half full, we have a disease that was fatal not very long ago, and now it's not. This site has been a great help to me and many others. I hope you will find support here. There are so many lovely, helpful, smart souls here. We are all here with you. Share your concerns, ask your questions, whine and complain and cry, and someone here will have a good answer, will have had your same thoughts and experiences, and we will virtually hold your hand. We will get through this. Very best wishes to you and to all of us.

I understand, I have been seeing a psychologist and you are probably right that the depression and anxiety play a big role.. thank you for your insight :) I hope I will adjust to this treatment and that I’ll be able to live a “normal” life

You’re making the dead weight I’m carrying a bit lighter, my relatives and friends make me feel like I’m exaggerating, that I should be doing more because I physically look fine. I just don’t have the energy too, my body doesn’t respond well to my negative mental states, it’s a vicious cycle. I have been struggling these past few month and sometimes I don’t even recognise myself.

I have been feeling guilty of not doing more, enough, I am so tired. It feels good to be a little bit more understood. I don’t feel I will be able to manage Uni x Work in London, therefore I decided to focus on my studies as a priority.

I have been hoovering this site all year long but I’m glad I finally registered. 

Thank you both for your help & welcome 

Nancy xo

Welcome Nana,

I was just diagnosed recently and in my first week of sprycel 100mg.   My hardest time is night.   Since I am new to this I am not able to recommend much at this point.   Have you checked for an cml/cancer outreach in your area?   I did through the MD Anderson Center here in Houston.   I never would have thought before cml, the need for a support group but I want to talk and be with people that understand what is going on.   Some people think they can goad you into cheering up.   I truly feel bad that your friends and family make you feel that way.   This is a time you need positive people in your corner and you have definitely found it on this site.  

Stephanie

 

Hi Nancy 

I am glad you plucked up the courage to post. The first time is hard! 

My husband is the one with CML and he is coming up on a year of being diagnosed. I think your roller coaster of emotions are very common and totally understandable. Shock then relief it won’t kill you, worried about symptoms you have and those you read about, the fatigue. And then always waiting for test results.

what has helped us most is this forum , as you are right many people , even family and close friends, don’t always know what to say. My sister told me early on when Paul wasn’t drinking alcohol at all , that that her husband would feel weird about holidaying with us as Paul couldn’t really drink anymore !!! 

Other things that have helped too. One of our dogs in particular has been an amazing support for my husband. A therapy dog without the jacket :) Lots of early nights and sleep, watching diet and trying to treat himself to things he loves to do ( but just maybe on a smaller scale) for example camping, but for fewer nights , as he found he wasn’t getting enough sleep. 

Take care and keep posting ! 

Louise 

Nancy- welcome to this forum. You will find support and solace here.

On 22nd September (which this year coincides with World CML Day) there is a National UK CML patient meeting in Birmingham, UK. If you want to attend you will need to register and pay a small fee - see details of the agenda and how to register on our Homepage.

If you do not want/can't attend on that day then you can watch the days events via webcast. The link to this will be shared nearer the date.

Meanwhile, you might find that you need to accept that you cannot push yourself too hard too soon, especially just to maintain an appearance of normality for the sake of others, who may not be able to cope with your diagnosis. This is why this website and forum exists, to help and support each other. Have faith in your ability to get through this early period, things do get better.

Sandy

 

I truly hope your treatment becomes more tolerable, that is one of the hardest thing to put up with, all the bone & muscle pain, restless night... 

 

Thank you, I didnt realise the need for a support group and it is something that I should have tried a long time ago.

 

I feel so misunderstood and hopeless around me, from the moment my symptoms appeared, to my diagnose, to right now, I feel like I’m in a constant fight and I don’t know how to cope, I don’t know how to be helped

 

Thanks for the info, I will try to attend, 

You are right, I do tend to push my limits, especially around others... I don’t know what I’m trying to prove but it’s not doing any good. I find it hard to find any balance between my old life and my new one, I either don’t do enough or do too much.

 

I have never been one to show my weaknesses, pains and difficulties. Especially since I had to fight to make people take me seriously and get a diagnose, including family, friends and doctors.

I only trust myself, I don’t know how to rely on people especially when they don’t know how to be of support. I feel like a drama queen to the eyes of others when I mention anything

Anyway, THANK YOU ALL FOR YOUR KIND MESSAGES. Hopefully I will stick around...