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New CML'er

Hi everyone,

I thought I would introduce myself. My name is Alex and I am 38 years old from the UK (South East). I was recently diagnosed with CML on the 16th of March 2018. I am fit healthy 38 year old who noticed his tummy was hard to touch on the left side about 6 months ago. (Almost like a tensed abdominal muscle that I ignored for some time). Some intution told me to finally get it checked out and to my shock my doctor felt my tummy and said my Spleen was swollen (I didn't even know what one was or what it even did. How ignorant of me.) and I'd need a Blood Test and a scan.

My GP had tried to call me but they had my wrong telephone number on their system. Anyways about 3 days later I received a 1st class letter, with the title "We are happy to confirm your Haematology appointment" Haematology I thought what's that and "Happy?". I googled Haematology and swollen Spleen and I knew then something was wrong. I broke down in tears as did my wife.

Anyway a long story short I met the consultant a few days after who gave me my diagnosis of CML and that I would need a bone marrow sample and bloods taken every couple of days, and I was prescribed Hydroxybicarbomide. My white cell count was around 300 and my platelets where around 700. Luckily with the results of my marrow aspirate confirming I was in Chronic Phase with 5% blasts.

The Hydroxy got my white cell count down to 14 and my platelets although stubborn began to fall also.

I am now prescribed Nilotinib and about 50 days in. Last Friday I had my day 45 appointment with my consultant and I had reached CHR somewhere between 15 and 30 days which I was really delighted about (It's the first step I know). My Spleen also returned to its normal place after being diagnosed with an "Enormous Spleen" 20cm I was told. I kept feeling my spleen as a marker of my progress on the tabs and I was indeed right that it had gone down. It had become my ritual and my only guide to how I was doing as I was too scared to ask what my blood counts where until my day 45 appt to get it all out the way in one hit.

My journey has only just began but I am hoping and praying that all will be ok. I have a young family with my wife 2 girls 8 and 4 they're my world and I would hate to think I wouldn't be around to share life with them and my immediate family who I love dearly.

Its been a rollercoaster of a journey so far with emotions up and down, more so in the earlier days but CML never really leaves my mind as yet as I am so early into my journey with it. I feel so grateful that the potential of the TKI's is a full and relatively normal life providing they do the job going forward for 90% of patients. I have had symptoms with the tabs but they're negligible so far, I realise this can change. What price do you put on life. Hopefully they'll continue to be mild.

Anyway I just wanted to say hello and share my experience so far. And it feels good to share my story with fellow CML'ers (Not sure of a more appropriate title haha).

Many thanks

Alex

 

Hi Alex, I was diagnosed in 2003 and 15 years on glivec and I’m doing great, I was 26 with a young child and I can fully understand  how your feeling at the moment , it’s all very frightening but with these wonderful medications your fears will begin to ease x

Hi Alex 

Welcome ! My husband was diagnosed last Sept. When I compare him now to how he looked at diagnosis I am shocked by how we missed how ill he was ( so pale, so tired , lots of aches including  huge spleen and WBC over 200k ) and and how healthy he looks now 8 months on. Still occasional fatigue and slightly swollen eyes sometimes but I think all the water he drinks, the reduction in alcohol and the addition of Curcumin ( great for skin and heart) mean overall he is probably healthier than before.  And I think we both appreciate life more for sure. Our kids are 14 and 15 and Paul has the energy to go out mountain biking with our son and be a math tutor for our daughter.

I know it’s not the same for all , but when he was diagnosed I wanted to hear that there are CML patients out there leading almost normal lives ( apart from the pill every eve) .

This is a great place for info and support and I wish you a good journey with your CML and lots of happy times to come with your family. 

Best wishes Louise 

 

 

 

Sorry to hear of your CML diagnosis. I’m thankful we have the TKIs that, for most patients, keep the CML under control. I was diagnosed in Nov., 2013, right before my 50th birthday. I wish you well with your treatment.

Hello Alex.

I was pretty much in your situation 2 years ago. 38, newly diagnosed, enormous spleen, blasts at 5%.
My WBC was high but much lower than yours around 50; but as a bonus I had myelofibrosis. I had lost a lot of weight, I'd say 10kg at least, and was very anemic, hemoglobin below 7... I was in chronic stage, but with a few problematic markers.
I had a 15 months old son and I was afraid I would not see him grow.

Fast forward two years.
My blood counts are in the normalish range, my spleen is perfect.
I have recovered my weight; except for the extra weight, that seems to be gone, good riddance! I feel great and quite fit
My son is 3 years old and is doing great.
What is more, a little sister arrived and she's 6 months old.
Quite a change I would say :)

Of course it hasn't been easy, I had my deal of troubles with pleural effusion and dosage adjustment, which is still ongoing (PCR is excellent, good MMR, but had a blip since dose reduction). And CML is a companion that stays by your side, and reminds you it's there almost everyday; at least once, when you swallow your pill.

Yet overall it's been a great two years.
I just wanted to share to let you know that TKIs are great and, despite their side effects, allow you to live a full life.

I wish you the best luck for your recovery!

Davide 

Hi Kathy,

Thanks for your message. Blimey 26 is so young. I thought I was too young! Thank you for your kind words and reassurance.

xx

Hi Louise,

 

Thanks for your response. Its amazing how quickly things can turn around isn't it. I went from the shock of it not feeling and not looking too great to almost being my normal self in just a couple of months of being on tabs. Thank goodness for this amazing medicine. Lets hope my treatment continues well for me and others that are newly diagnosed.

Defo a very scary thing but it eases being able to talk to fellow people like yourself that can relate.

Glad your husband is doing well and may it continue.

Alex

 

Thank you! Blimey not such a good birthday gift hey. At least you've responded well so far!

Hi Davide,

Glad I am not alone! Yes I thought 38 was young. Age aside though no-one should have to go through something like this. We are lucky that we have such good treatment options. Sometimes I feel like the luckiest not the unluckiest guy (Providing tablets work).

To say I was overwhelmed and scared was an understatement. Its such a shock isn't it to be told such life changing news. I barely visit the doctors and would have considered myself fit and healthy up until late!

I really happy for you that you have good PCR and MMR and you are able to be there for your son and newborn (Congrats!) I hope I will be lucky enough also to get to those stages. I reached CHR pretty easily so may it continue in the right direction.

Thanks a lot for your encouragement and kind words, it does make a difference for sure to share with those going/gone through the same ordeal!

Alex

Hi Alex, and welcome to our little (unwanted) club. 

I’m pretty much the same age as you, and also South East UK (London). I was diagnosed about 5 years ago, in really similar situation to you, big spleen, hydroxycarbamide at the start etc. 5 years later I am doing very well, and I am sure you will too but there of course have been some bumps along the way.

David.

Hi, if you  or your wife need to chat your more than welcome to email me, kathy.prudence77@gmail.com . I don’t know much about results extra but I’m 15 years in and doing great On glivec ☺️ 

Hi Alex and welcome.  On my first post, I was told it was a great place to meet other CML people 'in the wild.'   :-)  Our story is nearly a ditto of your own.  My husband was diagnosed 8 months ago and it has been a roller coaster ride of emotions, tears and the ups too with test results.  We have two children as well who were 10 and 11 at diagnosis, my husband was 46.  The stress has been incredible but we are learning to find our new normal and all that entails.  There will always be the questions in the back of your mind.....what if......  We are facing it totally positively.  This will work, it works for almost all, we have the percentages on our side.  That doesn't mean we are ignorant of what could happen, we just figured if it ever went that way, we would deal with it then and not the 'what ifs' now.  We learned to slow down, spend more time as a family, the board and card games and puzzles came back out and we are learning to chill.  We have been married for 15 years now and we may have another 50 but one thing we know, we have today and we make the most of it.  I really feel for you, we have been through it. 

Take care, keep in touch and you will get through the other side of this.  Many on this forum have been many years in this and that has been a tremendous strength and encouragement. 

Hi David,

Haha yes slightly unwanted i'd say :-)

That is a very similar story isn't it. Wow that's great I am glad you are doing well. I hope I do as well, its certainly a rollercoaster of up and down emotions isn't it. When I got my CHR result I was on a high for sure but then a few days later you realise you have a way to go yet. At least I am heading in the right direction with my Day 100 PCR at the end of August. And I am hoping and praying this will also be ok too.

I had seen several of your helpful posts to other users on here when I first started reading up on CML. It's a great support group for sure. Did you get any kind of counselling? I am only a couple of months in and sometimes you feel helpless don't you (prob more so in the earlier days i'd imagine), it's certainly a worrying time for myself, my wife and immediate family. Most of the time I manage pretty well but I still get the odd day or moment of feeling like crap.

Thanks for replying it's appreciated.

Alex

Hi Kathy,

Thats extremely kind thank you. I have asked about some initial counselling. I thought it would be a good idea to start now than wait until it builds up and I explode lol.

So glad you've been doing so well! Incredible in fact.

Regards

Alex

Hi there!

It certainly is a good place and resource for sure. You don't realise how valuable these groups are until you are in a similar situation isn't it.

Rollercoaster is the word I would use for sure. It really is an up and down journey and one can come as quickly as the other.

I am glad you are taking it head first positively, I do my best to stay in this state but impossible to always be 100% positive isn't it. But I defo agree live now and worry if you need to worry.

Defo been spending more quality time with the family and friends. When I first diagnosed I couldn't face seeing my babies, it broke my heart, but as I learned that for most its a manageable condition the fear does subside a little. Just hoping I am also one of those people.

You too stay in touch :-) wish you and your family all the best!

Alex