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Latest results - and some positivity for newly diagnosed.

Hi everyone,

It's been a little while now that I have posted or even visited the forum. I got my 4 year result and I am now 0.028% IS so the MMR4 line isn't too far away. So I am delighted with the progress and result and of course extremely grateful for our meds, doctors and the support of this amazing forum.

Like many I started my CML journey in complete an utter terror. 37 years old at the time WBC 330, Platelets 900 or so and bigger than a rugby ball sized spleen. 3 stone weight loss (that I never saw coming) nights sweats, and hard abdomen on the left side. (The main reason I went to the docs).

Started immediatly on Hydroxy for about 3-4 weeks, had a stubborn white count but eventually reduced to 14% before commencing Tasigna (Nilotinib).

Strangly had a low presenting PCR of only 13% (Not clinically significant I am told) and but still in late Chronic phase - consultant estimated I'd had CML for 3 years prior.

Anyway a long story short I and mostly everyone else can relate to the utter dread, fear and upset this disease creates especially in the early days. It's a journey that goes from 0 -150 miles an hour in an instant when you're given that horrible news. (I've never been i'll not had a problem as such, considered myself healthy - smoked a little in late teens and early 20s - normal I would say)

Your mind will play many negative games with you on this journey, ignore them, they aren't real and for the most part aren't reality at all. For the vast majority of people as high as 95% CML is just a managed disease and it is not a killer once you are stable and eventually reach the CCYR line and then MMR. It can take much longer than doctors would like, I did not reach MMR until 2.5 years in, and it was a cause for a lot of stress, anxiety and upset. Hang in there it will happen but not when you want it to. And when it does happen which it will you will put CML mostly behind you in the rear view mirror. I have had some blips on the way (and many can testify to the bouncing that happens with our numbers) it is a part of the journey so try not to freak out. I don't think our consultants care too much about decimal places but an overall trend and staying in or around MMR i.e 0.1 CCYR.

Anyway just thought I would say hi, give my latest result and hopefully encourage any new comers to this very scary tiger of a disease that's tamed into a little perring kitten with time for the vast majority. And I also understand you will ask yourself are you part of that "Vast majority". It's all very normal stuff.

Much love

Alex

 

Hi Alex really happy for you on your amazing results.
My name is Mina and I am fairly new to this forum. I was diagnosed in early October 2021 just before my 54th birthday. I am on 600mg Nilotinib, 300mg morning and evening. I have a lot of side effects, biggest issue with acid reflux to the point where it is affecting everything I do, eating, going to work, sleeping. I have spoken to my doctor and do take 30mg lansoprazole once a day in the morning, however it has not really worked, I am due to speak to my doctor again on Friday. I never had any problems with acid reflux prior to the medication. I have had a throat scan and a stomach scan and everything came back normal. 
I have had some real low days/moments, and only discovered this forum recently, it is amazing, it has helped me a lot, especially when you hear positive news!! 
Thank you. 
Mina 

 

 

Good to see that you continue the slow trend down.  As you know I have almost exact same situation (37 at diagnosis, 258 WBC, very large spleen).  I never did reach MMR on 100mg of Dasatinib but a switch to Nilotinib (600mg) did the trick (almost three years ago).  I continue a slow trend down.  I worry about the possible side effects of Nilotinib so as soon as I see double zeros (currently 0.017) I will try to reduce dose.  I am coming up on 5 years in August so that is exciting.  I think it is important for those newly diagnosed to understand the importance of reaching CCyR (under 1.0).  Getting there and sustaining that (at a minimum) means the TKI is working.  That is huge, and by everything I have read provides the same overall survival as MMR.  Onwards and downwards!

Hi Mina, trust me not long for you and it will be all positive also. I am sorry you’re having problems initially with Nilotinib. 90% of the symptoms I had from Tasigna 600mg have gone but occasionally rear their heads. I had terrible reflux before Tasigna because my spleen was huge and pushing on my gut. Was yours larger than normal? It all feels very normal now, possibly as normal as it’ll ever be. My advice is try to stick with it as long as you can especially if the meds are working their magic. I’d say the 1st 2.5 years I had a fair amount of symptoms that are common to Tasigna and some uncommon ones.

CML is a funny old disease. It’s funny because it’s mostly reduced to a routine of just taking your pills and a leisurely chat with your consultant very 3 or 6 months (6months for me). I take mine at 8am and 8pm that works for me. Maybe as suggestion try changing the time you take them for the reflux. Something as simple as that could help. I know certain teas can also help with reflux too.

Hang in there it’s all scary at first trust me that 100% changes with time and your decline of BCR-ABL.

Alex

Hey wassup mate,

Glad you’re trending down I know yourself, Ipmaki and I were the slow responders for our group haha. Glad to hear that you’ve trended down lovely on Tasigna. I used to worry about long term Nilotinib not anymore I’d rather that than short term CML lol. I am looking forward like you to reach another zero before trying a dose reduction. If I can get down to low as possible and maintain MMR3 then it’s job done. I am not obsessed with TFR. I think I’d worry more with nothing. Absolutely agree that CCYR is the goal anything else is just icing so that should provide some comfort for the newly diagnosed or slower trenders. It’s a marathon not a sprint as they say.

Stay in touch 

Al

Hi All,

Thought I'd say hi as well. It's great to hear from the younger(ish) slow responder group. I'm glad to hear everyone is progressing downwards! I've still been able to maintain MMR and bouncing around 0.05 to 0.06 presently with an odd undetectable showing up once. I'm starting to talk more seriously with my oncologist about lowering the dose from 100mg of Sprycel, but we are also waiting for maintained lower values. I completely agree, in hindsight, that all the worrying about hitting MMR while having reached CCYR was added unnecessary stress.  

In other news, we had another baby who is now 3 months old. Happy and healthy!

Ian

Hi Alex.  It’s great to hear from you again.  I’m very happy about your good news.   It’s been a struggle mentally and physically for me as well.   I know we all have to think positive.    I’m also a slow responder.  My last number was .06.  But before that I was .006.   Still taking 80mg of sprycel.   Next visit in August they will discuss if I’m resistant.  But I am optimistic.  Especially when I hear good news amongst my fellow cml friends.   Keep up the positivity and everyone else on this forum too. I will try my best to be positive too.

 

sherley

Hi Alex, thank you for your positive response.  I have spoken to my doctor today and my spleen is normal size, had a scan recently also he has changed my acid reflux medication today so hopefully things will improve. 
Thank you.
Mina

Congrats on you new addition!  Glad to hear you are also trending downwards.

I found this for you

Gastrointestinal Disorders:
Common: acute pancreatitis, abdominal discomfort, abdominal distension, dyspepsia, dysgeusia, flatulence.
Uncommon: gastrointestinal hemorrhage, melaena, mouth ulceration, gastroesophageal reflux, stomatitis, oesophageal pain, dry mouth, gastritis, sensitivity of teeth.
Unknown frequency: gastrointestinal ulcer perforation, retroperitoneal hemorrhage, hematemesis, gastric ulcer, esophagitis ulcerative, subileus, enterocolitis, hemorrhoids, hiatus hernia, rectal hemorrhage, gingivitis.
 

from here https://www.novartis.ca/sites/www.novartis.ca/files/tasigna_scrip_e.pdf

So reflux is the Tasigna. Less common but it’s there.

Good to here from you Ian! And big congrats on the birth of another baby! Amazing!

Glad you’ve maintained MMR also. It’s a ride for sure: glad that it’s mostly over for you now!

Alex

 

Thank you for the information.