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New member of the club nobody wants to join!

Hi everyone

I am a 37-year old man living in Johannesburg, South Africa, diagnosed with CML on 17 November 2015.  Prior to diagnosis I was healthy, but going through a very difficult time emotionally as I had just lost my father due to lymphoma a year previously and I was extremely busy with his estate and with my job as a high school teacher.  That meant that I put my aches and pains down to stress and nothing more.

My huge love in life is travelling, and I spend the school holidays visiting as much of the world as I possibly can.  In August 2015 I travelled to Madagascar and noticed that, while on the trip, I was having this unusual pain in my side and losing my appetite.  When I came home I saw a locum doctor standing in for my GP and, despite feeling my spleen, he said that I had picked up a viral infection somewhere from my travels and prescribed a short course of general antibiotics, which seemed to help.  In October I noticed a large bruise all the way down my right arm after getting a knock in a beer garden while watching the Springbok rugby team beat Wales in the World Cup, and a colleague suggested that I should check it out as it could be a symptom of a blood disorder... this was followed by severe bruising from playing with my two Boston Terriers, and the bruises were inconsistent with the size and impact of the injury.  Little did I know that this was the first sign of a life-changing event.  I spent a weekend diagnosing myself on the internet, and all the signs pointed to leukemia (night sweats at a time when there was a heatwave in Johannesburg, a persistent dry cough and of course this massively enlarged spleen).  By the time I saw my GP on Monday, 16 November, I knew that it was leukemia.  The diagnosis was confirmed the following day and I was admitted to hospital immediately, where the BMB was done and I was started on hydroxyurea.  The worst part for me was that I was admitted to the same ward where I saw my father die, and I am being treated by the same doctor who managed his treatment - quite an emotional journey.

Fortunately, my medical aid is excellent and I was able to start with dasatinib on 4 December - this was the most difficult moment of the whole experience so far, that first pill.  I'm sure that others remember how they felt when taking the TKI for the first time - the uncertainty of what the side effects would be like, the fear that it would not work as it is supposed to - and I am still experiencing this on a daily basis.  I had my first follow-up two weeks after starting and was pleased to hear that my WBC had come down from 204 to 22, and that my spleen was just about the normal size after being enlarged 22cm below the intercostal margin - this is a symptom that is freaking me out when I read about Sokal scores, Hasford scores and suboptimal responses to treatment by high risk patients - but I have my second follow-up appointment tomorrow and I'm hopeful that I will receive some good news.  

I would just like to thank everyone here for their compassion, understanding and kindness in starting this site - I have read so many of your stories during these first two terrible months and you have given me so many answers, so much hope and so much comfort in knowing that there are so many of you out there who are leading normal or near-normal lives following this devastating news.

Best wishes to everyone and all the best with your treatment

Martin

 

Hi Martin, welcome to the group and to an excellent support network and source of information. Its a very scary time when first diagnosed, be a little careful not to over read, Dr Google is not always the best move there is much outdated info. Take time to adjust, easier said than done, we all want to live and do worry so much. Your diagnosis coupled with the loss of your father in the same ward so recently, terrifying, feel for you.

The good news is CML is generally very treatable, your bloods have responded very well which is a good sign, as has the reduction in your spleen. Dastinib is an excellent second generation TKI that has great results. I was diagnoses 4 years ago, large spleen, 150 white count, night sweats etc. Today, and very quickly after dx life was good, for many it is, life will return to normal, or a new type of normal depending on your side effects and own metal state - this part can take a while.

Scoring on these systems you mention, eg scokal are not the pointer they were when transplants were the norm, TKI's have moved us and treatment along so so much. Good luck for tomorrow and for the results of your first PCR.

I am sure you will be on your travels again soon. Good luck with your journey.

Martin, what a bummer!   The Springboks beat Wales ;)

Hello Martin. I live in Howick KZN. I have been living with CML for 6 years. I know how scary it is in the beginning. I know what it's like to wake in the night with awful thoughts. Please know there is light at the end of the tunnel. There might not be a cure but there is still quality of life. Be strong and know there is a support system out there. Heather

Hi Nigel, darley and Heather

Thank you so much for responding for me and for all the encouraging messages - I really appreciate them.  I received good news from my first appointment, i.e. that my BCL-ABL level has dropped from 72% at diagnosis to 36% after 6 weeks of treatment, and the doctor confirmed that I have reached complete haematologic response as my white blood cell count is now 5.5.  I know that there is a long way to go, but at least things are moving in the right direction - when I read your stories, they fill me with admiration.  

And Nigel, you were right - the doctor has cleared me to travel to Central America in April, where I will visit the Panama Canal.

Thank you again.

Kind regards

Martin

Hey, martin, try not to worry much about the sokal thing. i too had a high sokal (my spleen was all the way under my belly button), i was skinny, etc. etc. and i'm still here after more than 2 years and doing good on tasigna. good luck!

Hi  Lucas

Thank you so much for the words of encouragement - indeed, your story has inspired me because I hope that I can also do as well as you.  I had read your posts about your enlarged spleen beforehand and it gave me a great deal of hope and comfort to hear that you are doing so well two years down the line.  It's strange that your friend also has CML - I did an exchange overseas to Belgium when I was at school, and the odd thing is that my host brother from the exchange was also diagnosed with CML!  Life is often very strange.  

Muito obrigado!

Best wishes

Martin

oh, man, i did the same as you: read all the stories here. There's much inspiration and hope here. my spleen was very enlarged and it was scary. i know many people with high sokal who responded very well to imatinib, and, if it fail, we have options. i had options and i'm doing well - waiting for my new pcr now. fingers crossed. 

Yes, it's very strange to have a friend with cml before diagnosis, but it helped me. he's not envolved with cml forums, etc (actually, i had to explain to him what a pcr is :) ), but he's doing great.

Hope you do great on imatinib, much better than i did, and life a long a nice life. Good luck!!

Good news with your results after such a short time. Let's hope they continue to go the right way.    Enjoy Panama.   I'll soon be at 6 Nations Rugby watching England play Scotland at Murrayfield :)

I was also a member of the "enormous spleen club" when I was first diagnosed.   Indeed it was first thought I had Malaria!   My speen was so big that basically I couldn't eat because I felt full all the time.  They considered removing it but then when it was known I actually had CML in blast phase and was so critically ill it was decided that a splenectomy was a step too far.   Ultimately though my spleen recovered over time and all by itself.

Thank you so much, darley - I have read so many of your posts and I find your recovery and positive attitude inspirational.  To come back from blast crisis - WOW.  Watching rugby at Murrayfield has long been a dream of mine, and maybe one day I will get back to the UK, hopefully making great progress on the drugs.  

Thank you to you too, Lucas - I'm thrilled that you are doing so well and I greatly appreciate your taking the time to comment and to give me hope.  

In all honesty, I feel quite lucky that so far I haven't had many bad side effects on dasatinib.  The only thing that happened was that I had a retinal bleed (not the normal ones in the white of the eye that seem to be causing some people difficulties on Glivec) and the ophthalmologist discovered three more.  He seemed to think that they came from the CML and not from the medication, but said that my experience was quite rare.  The doctor also seems to think that I won't develop side effects so, apart from the emotional impact, I can say that this hasn't impacted too severely on how I feel physically and I am still able to work my normal hours (touch wood), even giving my Saturday school.  I hope that this lasts!

Thank you again, everyone - this forum has made such a difference to my life.