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CML Journey: Week 4

Hope you guys don't mind me trying to put my thoughts into writing here?  I feel like I need to write to come to terms with what's happening for me, and don't feel like sharing these thoughts more widely with people who might not understand - I'd appreciate the thoughts and support of others who are going through this too, so I can 'compare notes' I guess...

It's now been four months since I first learned something was wrong.  Four weeks ago, my GP rang to tell me they were concerned about a high white blood cell count in a blood test I'd had because I was having night sweats and was concerned something was up.  The NHS really impressed as I had a visit with the haematologist within four days, and a definitive diagnosis of CML came through last week.  (It seems that you guys like knowing numbers, so I've found out my ELCTS was 2.1995 and so they thought I was on the high side of 'medium' risk, and so I need to go on a 2nd gen TKI). 

Last Thursday I told my employer, the team I supervise, and more importantly, my elderly parents who handled the news brilliantly, as I was armed with a lot of hopeful news about long-term prospects that I've gleaned from the internet, and from the helpful comments you guys have provided in some other threads.

On Monday, I had the "informed consent" meeting with one of the hospital consultants and we agreed I'd start on dasatinib/Sprycel once the hydroxycarbamide had stabilised my white blood cell count (It was floating in the 90s for a while).  Last night I was told that whilst it wasn't going down any more they were going to switch me over to dasatinib, and I'm now waiting to get the medication (they're sending it to me from the hospital via courier - I never knew they did that kind of thing.)

I'm a bit glum though because up until yesterday, the disease was mostly 'theoretical'.  Aside from the night sweats I hadn't felt very poorly.  Yes, my spleen was very swollen (and I actually spent one night as an inpatient as it was so painful I'd thought it'd ruptured), but aside from those things, it didn't feel particularly bad.  Yesterday though I started to feel 'different'.  I don't know if it's having been on the hydroxycarbamide now for two weeks and so the side effects are now coming on, or if it's just basic CML, but for the first day yesterday I started to feel actually "unwell".  Mouth ulcers are starting to pop up, I've got full-on proper diahrrhea (however you spell it) now, and I just feel like I want to stay in bed now. 

What's very odd now is that my skin feels different to me too.  If I touch my arm, it doesn't even feel like I'm touching my own body.  I feel like my body is a stranger to me now (and a stranger with malicious intent as well!)  I haven't even started the TKI which I understand might be even more of a challenge.  

I know I have to go down this road, but it's starting to sink in that there are going to be tough patches ahead, and I'm finding it pretty sad to think about.  I'm starting to worry now as well about how many 'bad days' I'm allowed to have before I start alienating friends or even family, who want me to be cheerful and positive, and I think I'll be disappointing them if I can't be...

 

Hi there,

Exactly like you I wanted to put down in words what I was going through and it is a good way to come to terms and offload a lot of fear and emotion. I 100% get where you are, I was in the same position as you. I started I the hydroxy to bring my white cell down from 330 to 14. Every panel was completely shot at diagnosis. Massive spleen and night sweets weight loss. Never felt unwell which is even more shocking. Anyways a long story short started on the hydroxy standard dose my white cell actually rose, which by my consultants own words caused him some sleepless nights. We increased the dosage and thankfully it began to fall pretty steadily over 4 weeks. Spleen magically returned to its normal size too.

Eventually started on Nilotinib after a small delay and no meds at all to my surprise wbc didn’t increase during that time. Proof it’s a slow disease.

Yes I felt rough and “different” on the meds. Some of that is physical and a lot is also psychological.

My only advice is to take your time with it all. Once you start TKI and panels return to normal you’ll get some relief. It all takes time and a lot of wait and see type of thing... that part does seem to get a bit easier. Ironically CML will prob cause you little concern going forward by symptoms of meds no doubt will have some impact. Having CML for me is a constant reminder, it’s the 1st thing I think about waking up and the last thing I think about before bed. With lots in the middle. If you’re not careful this thing can consume you as it has done with me at times. I’ve had lots of therapy and that helped wonderfully along with mindfulness and meditation has allowed me to keep things in check. You’ll find your coping mechanisms in time.

You’ll get used to a new you. There will most likely be things that change that you notice and depending on how self aware you are you’ll notice more than others.

I honestly believe if CML didn’t have the cancer or Leukaemia word attached to it then this would be a million times easier. I didn’t believe I’d last a year and still here at the moment 2.5 years in touch wood. Lots of wood.

This site and its members are a god send. I’d truly be lost without it.

All the best

Alex

Hey,

I have a similar timeline of diagnosis. Sorry that you had to go trough this. These are probably surreal times for you, It's like being hit by a truck. Hopefully you'll get out of thus stronger.

I was diagnosed end of march just as the pandemic was raging had covid. But since every hospital department was relegated to second plan, I literally couldn't see a doctor and spent weeks and weeks just knowing I had a form of cancer. Scary times, made me re-evaluate everything. Started treatment 7 weeks ago, had to discontinuedue to issues. But I'm right at the 4 weeks mark like you. No hydrox though I was lucky on that front.

But since I know more about the sickness, I've been doing better. I'm great at compartmentalizing and I just went on with my life. Didn't tell anyone friends or family, figured at this point this would be my best chance at having a normal life.

You should be taking care of yourself, what your family thinks of you should ve an aftertought it's your pain, no matter their support it's you at the end going through this.

Last week I found out a colleague of several years died last year of cancer at 33. I'm 34 now, so while my skin was so itchy because at that time it was one of the symptoms I didn't recognize, he was dying. I'm no better or deserving than him but I got to live longer. Seeing him, on that memorial picture was saddening. I was lucky to get the right cancer...

Don't let this be the disease that defines your life. Fight for normalcy and get to the point where you accept it or this . It'll happen at some point. I don't know your age but you probably got decades . Our goals should be to not waste them.

You may get some early-stage reactions to dasatinib which will not endure. Within a week of starting on dasatinib, I was very ill for several days with vomiting and vertigo. I telephoned my consultant who thought that it was gastroenteritis. Anyway, I got generally better but the vertigo/dizziness continued. I visited my general practitioner and explained that I felt as though I was perpetually intoxicated. It took about a month for this to resolve itself. In retrospect it was decided that the problems were caused by the dasatinib. 

More generally, dasatinib for me has resulted in no side-effects. Imatinib on the other hand gave me a whole range of problems. I do not feel tired but I do feel that I have lost about a quarter of my strength. I am 64 so there probably are some age effects here.