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Just diagnosed today...anxious, scared, but hopeful?

Hi all,

Just got my official diagnosis. No symptoms, just caught on routine blood tests which led to bone marrow biopsy.

Philadelphia +
Less than 1% blasts
WBC 18.6 k/uL
Platelets 1,075 k/uL
Basophils 9%
Metamyelocytes 3%

Everything else normal.
I will start 400mg Imatinib in the next day or so. I am quite nervous about the side effects.

This is just the strangest feeling. I have cancer. I say it out loud and it sounds surreal. I have cancer? And I will have it for the rest of my life? It's weird not to know how to feel about this diagnosis. Scared, anxious, sad, but also lucky that it isn't an acute leukemia? How long does it take to feel real, or to know what to feel really?

I'm a 51 year old woman who is otherwise healthy. Actually, that's not quite right. I have multiple sclerosis, but in 2014 I had a bone marrow transplant to put it in remission and so far, so good. How weird is it that I've already had a bone marrow transplant?? They say chemo doesn't cause CML, but I have to wonder if it didn't play a part in it? The fact that I ablated my immune system with heavy doses of chemo and used my hematopoietic stem cells to rebuild it. So strange.

But I got through that and I'll live through/with this.

I am also a terrible worrier, super anxious, and the past few years have been very stressful. Could that have brought it on?

Other than that, I have 2 kids ages 12 and 17 that I need to be healthy for, and a wonderful husband.

So hi. Just wanted to introduce myself, I guess.

Thank you for any advice/reassurance you can give.

Bless you Susan!

We can all completely relate I can assure you. To go from 0 to a 100. Like you many are diagnosed with a routine blood test. For me it was a hard abdomen on the left side which was a massive spleen harbouring approx 3 years of Leukaemia.

Like you I am a worrier by nature and for me this did a right number on me in the early days - and if you can believe it 5.5 years later bloods are all good and I hardly give it a thought.

It’s early days for you but this generally becomes nothing more than an inconvenience of taking a pill daily and regular 3 month monitoring. I have 6 monthly I would go mad every 3 months.

It sounds like you’ve caught it really early so my bet is you’ll go into remission super quickly and stay that way all the time you take TKI.

The reasons for CML are mostly unknown but I attribute mine to constant stress for many years, I obviously can’t prove it. Environmental factors also play a part. Like you in the early days you wonder how. But that doesn’t help you in any way I’ve been there and it brings you nothing.

You’ll soon learn like the vast majority of us that this becomes nothing more than a inconvenience and although it is cancer by definition you’re “lucky” it’s a type that’s hugely understood and bashed into oblivion with these wonderful meds that block the communication to proliferate.

Take sometime to digest it all it took me a while to accept it. And now I mostly just get on with things like I did post diagnosis.

You’re going to be just fine, you won’t believe it yet but you will in time.

Hang in there. Sending hugs.

Al

Thank you, Al, for your kind words.

I will take an inconvenience, an annoyance, a pill every day. I can handle that! I can handle more than that, of course, if I have to, but let's hope for inconvenience over chaos.

I'm taking my first Imatinib tonight. I think I will feel better once I see how I tolerate the meds.

Baby steps, I suppose. Baby steps into this marathon.

Thank you!
Susannah

Hi Susannah

You're pretty much the age I was when I was diagnosed 16 years ago. I think my CML was made more likely by radiotherapy I had 20 years before that when I was diagnosed with testicular cancer. I'm now fine, on 200mg of imatinib, rather than 400mg - that's a bit of a saga but you don't need to hear that now.

I'd encourage you when you feel ready to read the material under "About CML" above - it will help you understand what's happening.

Good luck with side effects - these vary hugely and there's not been anything in the last few years that someone on the forum has not seen from the 1st and second line TKIs. The first couple of months can be a bit trying, and a few folks get such adverse effects that they need to change meds. There are more alternatives available now than there were in 2007!

One thing I would definitely suggest is you get your doctor to order a Vitamin D test. Read the threads on here about vitamin D - assuming you are in UK like most of us should likely consider supplementing.

As Al says this will become an inconvenience, and it is widely agreed that for the large majority of patients CML is unlikely to have a serious impact on their life expectancy. As I said I'm at 16 years, and expect I'm not half way through my CML journey yet.

Hope that helps.

Alastair

That definitely helps, thank you, Alastair!

I'm not in the UK. I'm in the US, in northern California. I did just start taking 5,000iu of vitamin D3. I will ask my doctor to test me for vitamin deficiency, as well.

Many thanks for your reply. Cheers to Imatinib!

Susanna my advice is to adopt a healthy life style with fresh food, exercise, and a positive outlook.
It is what it is but there are worst things in life.
God helps those who help themselves.
I’m in over 12 years now.
The positive thing for me is that I have learned to appreciate things much more and take less for granted.

I’m sure you will be ok and you’re not alone.
Not sure all that helps or is what you want to hear, however, you can feel, think, reason, taste, see…etc. and that’s something to be thankful for.

Pojo

Good advice all around. Thank you, Pojo.

Hi!

You are exactly where I was 2-1/2 years ago. Healthy, happy and going in for a routine blood test as part of my physical. No symptoms, no signs. My son was just finishing 6th grade. Nothing you did caused this. And you are going to get better. I struggled at first to get used to the medications. The first six months were a combination of GI issues, skin issues and fatigue. Then things got better. Much better. I still take Sprycel every day, and because of a 3 way transmutation (e.g, a little bit rarer type of CML), I have no plans to try TFR. I make sure to eat a little healthier, drink a. little less booze, and sleep a little extra every night. I still work full time, attend every basketball game my son plays in, and spend way to much time helping him with his homework. I never even told him about my diagnosis - teenagers have enough on their plates nowadays. I am very glad you found this forum, there are some really smart and compassionate people sharing their wisdom and experiences here. It is an incredibly helpful resource.

Hi!

You are exactly where I was 2-1/2 years ago. Healthy, happy and going in for a routine blood test as part of my physical. No symptoms, no signs. My son was just finishing 6th grade. Nothing you did caused this. And you are going to get better. I struggled at first to get used to the medications. The first six months were a combination of GI issues, skin issues and fatigue. Then things got better. Much better. I still take Sprycel every day, and because of a 3 way transmutation (e.g, a little bit rarer type of CML), I have no plans to try TFR. I make sure to eat a little healthier, drink a. little less booze, and sleep a little extra every night. I still work full time, attend every basketball game my son plays in, and spend way to much time helping him with his homework. I never even told him about my diagnosis - teenagers have enough on their plates nowadays. I am very glad you found this forum, there are some really smart and compassionate people sharing their wisdom and experiences here. It is an incredibly helpful resource.

Hi Susannah,

I hope after the initial shock of diagnosis, you are now feeling a little reassured that all will be OK.

I was diagnosed 21 years ago at the age of 34 when I was pregnant with my 2nd son. It was anti-natal blood testing which picked it up. Those first couple of weeks were very worrying, but here we are over 21 years later and my son is in his final year at university and I’m still taking the Imatinib!

I was incredibly lucky to get CML when I did as TKIs, and specifically Imatinib, had not long been approved as a first line treatment. Since then life has carried on as normal and CML has just been a part of my life that has murmured on in the background. Long may it continue that way and I hope it will be the same for you.

Sending you best wishes for the coming months and beyond!

Daniella