Hi Caz, I was also diagnosed with CML aged 48 last November. I am on imatinib but in April I had to reduce to 300mg a day because my neutrophils kept dropping. Possibly as a result of that, I haven’t met my latest ABL/BCR target and now I have to switch to nilotinib. I had no side effects from imatinib (no weight gain) other than low neutrophils (and occasional diarrhoea). I’d be interested to know why you are switching drugs?
Did I say I’m also aged 48? I’m being switched for the same reason as you - low white bloods. How are you getting on with Nilotinib? I’m hoping I’ll be okay on it!
Good morning everyone, I am 54years old, I was diagnosed with CML in Nov 2016, I have been on Nilotinib Since the beginning with no problems. My bloods have been level and BCR/ABL is 0000.1 & been in molecular remission for 2years. I had my bloods done yesterday and the haematology nurse rang lastnight to say my liver function was low, now I’m all anxious and worried, has this happened to anyone else?
Hi @Chris4pace, a great big welcome, I cannot help you medically but isn’t it interesting how quickly those feelings of anxiety and worry came flooding back. We are here to support you as we understand those feelings and the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at firstname.lastname@example.org if you need to talk. Please let us know how you get on.
Good morning @Chris4pace, a warm welcome to the forum, we’re glad you found us.
I’m so sorry to hear that you’re feeling anxious about your recent conversation with your nurse. Though it’s totally understandable. Did your haematology nurse talk you through why this might be and talk you through any next steps that may need to be taken to explore this further? Chris if you want to chat this through with us please do feel free to give us a call on the support line, as @Erica mentioned above.
Hi thank you for getting back to me, the nurse said they will monitor it & see how it goes next month, I was having 6 monthly appointments but because of the covid I had one in June and all was clear then had another appointment yesterday which shown up about my liver, I’m hoping it is because I had an infection in my wisdom tooth and that’s why it’s happened… I’m going to make sure I eat more veg and fruit, I don’t drink alcohol but I drink fizzy drinks so will stop them from now on, I just wondered if it was normal… this forum has been so helpful reading everyone else’s experiences… I know how anxious everyone gets before any appointment, I suppose I just got used to good news every time I’ve been and got a shock when she rang last night
Apologies @Chris4pace, I did not say how anxious and worried I get before, during and after my medical appointments and I was diagnosed in 2003. I think it is always a shock to get a phone call from a doctor in the evening, I have also found that this might be the way of the future. I am now eating a slightly healthier diet with more fruit and veg but I also believe in having the odd treat. Please keep posting how you are.
Hi Erica, it was a shock for me too, I went to my gp because I was tired all the time I thought I needed iron tablets, had bloods done, I work at the hospital and one of my colleagues said we’ve just had your two week wait for haematology so I rang my gp and she said not to worry about it … I attended on my own thinking they would give me iron tablets and send me on my way…I’m always positive, sometimes I even forget I have CML… im trying not to worry but it’s just caught me off guard… can’t wait to get back to work next week though
Hi @Chris4pace, you say it caught you off guard, my diagnosis completely floored me !! Please let us know how you get on when you go back to work next week.
Hi @Chris4pace and welcome. I think we all get caught off guard sometimes don’t we and it’s hits us harder when we think we are doing so well. I really feel for you and can imagine how difficult it was at the appointment on your own. That’s why it’s so important that we have this space to share. How are you doing this week? Have you returned to work now?
Hi Nichola i haven’t returned to work this week due to the recent lockdown again, our Drs are due back this week to start to open the clinics again, the workplace still needs to be adapted for shielders who are returning… I have been up and down and I know I shouldn’t google and now diagnosed myself with alsorts I’m sure most people do… any ache or pain is like omg what’s this now, are the whites of my eyes looking a bit yellow? is that false tan or is my skin looking yellow? I literally am my own worst nightmare… I could write a book, honestly they are only thoughts I never tell anyone what goes on in this head sometimes, they will think I’m a right nutcase …hope you are well too x
Hi @Chris4pace, yes, I think we are all our own worst nightmares. How are you sleeping as you might be interested in the ‘How do you get a peaceful nights sleep, any tips’ thread.
I find my mind goes mad at night fears, thoughts, what if’s etc. but as you say any little aches and pains and I fear the worst, I think I have got worse during shielding as my emotions have been on high alert and, although I haven’t realised it, I have slowed down and got more time.
I ban myself from Google medical searches.
You are not a right nutcase and this forum is the only space I can honestly say what it is like to be me and feel really understood, perhaps as some of my family and friends cannot understand.
Please keep posting how you are.
Just read your posts @Erica and @Chris4pace. I agree with both of you. Sometimes we give ourselves such a hard time. What I get from this forum is that we all share the same anxieties. So, if you’re a nutcase then we all are! This is the only space I, and you can definitely share what really goes on in our heads because there will always be someone who understands! That a really comforting thought for me.
I’m glad your workplace are ensuring things are safe for shielders. Does this give you a bit more confidence about returning?
We should change our names to the nut cases… I’m confident about returning to work, I feel during lockdown I’ve had too much time on my hands to think and have little nana naps so the distraction will do me the world of good. I sleep ok some nights but then other nights the thoughts are a little upsetting, our daughter is due a baby in Nov after 3years on IVF we are over the moon, sounds daft and I don’t know about yous but the future terrifies me some days. I don’t like the term watch and wait either… I love holidays abroad but then panic if we book one and what if I end up poorly whilst I’m there, not that that’s ever happened… I love this forum Im kind of thinking that the not normal thoughts are quite normal… I’ve attended an 8 week mindfulness course and found that helped with sleep as I meditate… I’ve also got rid of my iwatch as I kept checking if my pulse was slow or racing, I mean what the heck’s that all about, obviously I’ve still got a pulse … I really am going to delete google off my phone and going to order that book about sleep… hope yous are all ok … thanks Chris
Hi @Chris4pace, I want to be one of the nutcases. Isn’t it interesting that we seem to be able to see what we are doing, feeling and thinking, but we still do it. Yes, I am work in progress. Please keep posting as I am learning so much from you.
@Chris4pace - the new name
sounds quite fitting I think we all do amazingly to get on each day and live our lives the best we can, but, oh my goodness, I definitely have days when the future brings scary and upsetting thoughts. It can be something silly that triggers it. Like you, a lot of it is around my children - ages 11 and 14. We were watching Cinderella the other day and the wedding set me off (how silly) thinking about how it’s possible I might not be there for theirs. I got in such a state! Is this where meditation and mindfulness helps you?
Does your daughter know what she is having. A very special baby by the sounds of it, who I’m sure will bring you so many happy memories and I’ll be sending you pictures in years to come of my daughters weddings!
Active monitoring, watch and wait, all have the same meaning don’t they. I’m with you, don’t like them!
I agree that google, iPhones and watches are not a good night time friend and banning them is a good move. I might join you on this.
Let us know how work goes once you return and if that book has you sleeping better please let me know. I’ll give anything a try!
I learn so much from all of you of the time @Erica! X
You certainly will be sending pictures of your children’s weddings, positive thinking is the best way forward but then sometimes I know it’s ok not to be ok… so many people are far more worse off than us and they just get on with it, yet so many go through the little trivial things and can’t cope and I think omg have a few days in my head and see what it’s like…some people can be a bit insensitive, eg A woman I work with was so worried about a breast lump she couldn’t sleep, she said to me how am I going to cope if it’s cancer (oh there’s that awful C word I hate saying or hearing) but then thank god & was so happy that she was ok but at the same time in my mind I’m thinking look at you jumping about and celebrating, I wanted to say have a little thought for others who do have it …
My daughters having a girl aww this is the first girl in our family since she was born 28 years ago, she’s going to be a spoilt little princess, my son has two boys 7 & 5 they keep me on my toes
Yes I will! It’s a personal journey and we get through it in our own way, but with support from places like this. I don’t think anyone really understands unless they are in it! Enjoy the grandchildren. Can’t wait to hear all about the spoilt princess!
Hope you’re doing well @CazE?