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20 years since diagnosis


I wanted to share with you all that I have just passed my 20 year anniversary of my diagnosis with CML - actually yesterday: 4th December 1998. I hope my experience will reassure some of our newer members who are struggling with a recent diagnosis and TKI treatment all the fear such a diagnosis causes.

My story is a little more complex that some as I was in late chronic/early accelerated phase before I got access to TKI therapy (clinical trial). We have come a long way and actually, I forgot the date and was reminded by David my partner. 

I hope this gives hope to some of you... with effective TKI treatment and monitoring, long-term remission is more than possible, it is highly likely.


Sandy - when I was diagnosed I was very depressed and then I found this website and read your story which gave me and my family a lot of hope. You are an inspiration for all of us. I want to also thank you from the my bottom of my heart for setting up this website

All the best 

Hey Sandy!!  WOW, I hadn't read your story.  Congrats to you.  Truly an inspiration to all of us.  I had no idea what a TKI was until this site.  Thank You.  A wonderful and blessed day to YOU and all the CML patients out there.  God bless you for your work here.  Again Thank you


Sandy, congrats to you and thank you so much for the post. You are an inspiration for us all😊

Wow!!! Congratulations to you Sandy!! I am a new member of the group and still dealing with the enormity of leukemia. Thank you so very much for your post and I wish you continued good health!!


Thank you Sandy for sharing. Your story gives hope. It is wonderful that you have done so well!

Hi Sandy,

I would like to say how useful this site is especially given that diagnosis can be such a life changing event especially if one is relatively young in years and has substantial family, career,financial and personal commitments;my previous haematologist agreed with me that on dx it is vital that one is able to find out about the disease and be able, alongside the medical professionals, manage the condition which fortunately due to the introduction of tkis is no longer a fatal illness.I was dx nearly 13 years ago but still find the site to be useful and informative and especially the annual patient seminars /conferences that you organise-I will attend the next one I hope!

In the book "Philadelphia Chromosome" by Jessica Wapner you were referred to as "Sandy from London" who took part in those amazing and ground breaking trials in the west coast of USA when it was realised that Glivec produced  by Novartis, but very much with the expert inputs from Brian Druker and others, was so effective in saving lives that it was subsequently described as the "Golden Drug" or as Time magazine referred to  it as the" magic bullet" for cancer treatment.I still find the book really good and rivetting reading because without the "Glivec story" we would not be here now.It is very good medical journalism.

Correct me if I am wrong, but I believe that prior to you joining the trials you were considering a transplant with all its attendant risks of failure and that it was John Goldmann (now no longer with us) of Imperial/Hammersmith who facilitated you being able to join the trials and to receive Glivec at a stage well before it was available in UK;was it introduced here in 2002?

No doubt there are a number of stories of those who contribute to this site of how they have been able to maintain a very good quality of life and also survival as a result of Glivec (imatinib) and other tkis but I guess in the UK you are the ultimate survivor or CML veteran!

So yours is a wonderful story and many thanks for your work for CML Support.





They don't come any better than you, my friend.  Your story is incredible, but it pales in significance to the countless hours you have given back to educate others and give them hope.  I know that I could never repay you for what you have done for me. Here's to 20 more!!!

Hi John,

I believe Sandy did have a SCT.  Here's a post from several years ago:


Thank you Sandy. You are an inspiration and a role model to all of us.

Congratulations Sandy, you should be very proud.

Sandy, many congratulations on reaching this milestone. Thanks too for your involvement in the creation and development of this site and community, without which many, many people would find their struggle with CML much more difficult. The fact that the top UK researchers support the patient conference says a lot about how well-regarded your creation is. The fact that the site is now used internationally also says you got a lot right. Those many of us who you have supported over the years are very grateful.

Congratulations Sandy, and thank you for being there for us :)

CONGRATULATION SANDY , I belive in morden medical science and GOD. I HOPE ....... CML CURE IN NEAR FUTURE ....

Great to hear and very inspiring to us all!

Thanks to all for the good wishes... and yes I am planning to stay around for at least another 20 years!  

John, yes you are right,  I did go on to have a transplant in October 2003.  After 2.5-3 years of responding well to imatinib (then called STI571) it became evident that I would not hold my remission for the longer term. I did have a molecular response.. something like 0.5% which was the lowest recorded PCR result I achieved, BUT my results started to bounce around at just under 1.% and a mutation test showed I had developed a P-loop mutation called Y253H known to be resistant to imatinib. A big disappointment to say the least.

However, thanks to Prof. John Goldman, Prof. Charles Craddock (now of Queen Elizabeths Birmingham) and Dr Eduardo Olaviarra, Hammersmith suggested I enrol in a trial, then experimental, of a Reduced Intensity SCT combined with 400mg imatinib for 1 year post-transplant followed by DLI.

I know this might seem counter-intuitive as the mutation I had was resistant to IM.  However, John Goldman thought that the cells with the mutation would be dealt with by the chemotherapy drugs used as conditioning. He was pretty confident it would work so I went ahead.  

I had to take imatinib for 11months post-transplant, then stop and watch and wait until BCR-ABL levels showed a rise. At the point where levels were above .5% by PCR so DLI was introduced (and this was the clever bit). I was given 4 separate infusions each with an increased dose of mature lymphocytes from my (sibling) donor. The lymphocytes had been separated off from the donor stem cells which I had received as the transplant, and kept in the 'fridge'. The theory was that over the 12 months post-transplant my body would accept the donor stem cells as my own and therefore when DLI delivered the mature donor lymphocytes, GVHD would not be a problem and would not kill me! 

Luckily for me, the theory was right and when I eventually stopped the 'holding' dose of imatinib at around 11 months after the SCT, we waited nervously until each donor lymph infusion was given..... each time waiting for 12 weeks before the next infusion, doubled up on the previous one. All in all it took quite a while.

In the end, I had 4 infusions with the last one at 55,000 per ml of donor lymphocytes, before we saw the response we were hoping for and my PCRs results confirmed that BCR-ABL had left the building!

The day I got these results will be one I will always remember - I was so happy I nearly hugged my doctor- but of course being English and a bit shy (yes really) I just shook his hand  ;o)))  I remain a big fan of all those haematologists - John Goldman, Charlie Craddock, Eduardo Olavarria and of course Brian Druker - all of them dedicated to finding a cure for CML and other leukaemias.

If I had been able to access dasatinib (or nilotinib) at the time of my molecular relapse (in 2003 both were still in early trials) I now know that neither TKI would have been effective in dealing with the particular mutation I had. The irony is that I would have responded to bosutinib but the availability of that TKI was way ahead in the future!

I remain very grateful to all those doctors and researchers whose work and dedication underpin the story of CML and TKI therapy.  Jessica Wapner really did a great job of telling that story.

Thanks to all of you this website and its forum continues to grow- reaching out to and helping all we can.



Pleased to hear you have got to the 20 year mark!!  Very reassuring to read.

Congratulations Sally.
Thank you for your story, it has given me and my family hope.
I have recently been diagnosed with CML.

Many congratulations, Sandy, and heartfelt thanks to you for setting up this site. There is so much good information on here and several very well informed patients on the forum - it kept me sane in the early days of my diagnosis in Sept 2009.


Very best wishes for Christmas and the New Year,



Thank you for sharing and congrats!  Always great to read positive posts.




Hi Sandy first of all congratulations on reaching your 20 years anniversary, I've only just seen your post so apologies for the delay. Your journey was a long and hard particularly early on however you and many others very much were the trailblazers for the treatments we have now. Thank you for setting up CML support, and for all the efforts both you and David have put into accessing treatments for patients, support and guidance, and for the help you provided me and many others both early on and throughout our journeys. Here’s to the nest 20 years Nigel x


Sandy - how wonderful! 

When I contacted you 12 years ago, you pointed my wife towards the Hammersmith for CML treatment after her local hospital had given her a maximum survival of 3 years. We saw Professor Jane Apperley on the first appointment and she said "Three years! We can do better than that." Well, they did (and do) with the result that my dear wife is living a very full life 12 years later on imatinib with undetectable PCR results. She is now considering whether or not to stop Imatinib under the guidance and control of the Hammersmith. 

So it's not just congratulations to you, hugely important though that is, but also heartfelt thanks from my wife and I for your support and help to others over so many years. My wife often says that CML Support saved her life.

Thank you.

I have only just seen your post, Sandy, as I don't log on to this site so much any more.  After just over 9 years I seem to be stable - and without all the information and support from you over the years I surely would not be in such a good place.  Thank you for everything, and please keep up the excellent work you are doing on our behalf.


Dear Sandy

I can't believe your incredible story.  You are an inspiration to me and a constant reminder that it is possible to live a good and long life with this condition.  Thank you a thousand times for everything you have done and continue to do for CML patients worldwide.  

Best wishes


Hi Sandy ,congratulations on your 20 year anniversary you give us all hope.I just read you are from Liverpool I live just over the water on the Wirral.Do you attend RLUH if so are there a few different specialists there I am just being referred there as my numbers have just started to rise, I am just 1 year in .Where I Go now I am usually there at least 3 hours is the waiting time any shorter in Liverpool .I am hoping I am not becoming resistant to Imatinib as I feel fine on that and don't want to change ,but if I do what are my options is one better than the other in terms of side effects.I am a bit scared of going to a big hospital instead of my local one ,but hopefully they will get me sorted.All the best for a Happy and Healthy New Year ,Thank you for reading  ,Denise.

Hi Sandy,

Huge congratulations on this wonderful milestone!!! You were such an inspiration and a lifeline to me when I was first diagnosed. So much wonderful help in those awful first months. Many thanks and I wish you many more years of health and happiness.

I have just passed 17 years since diagnosis. Where does the time go?? Still in Germany under the wonderful Prof. Hochhaus. Still on 400 mg Glivec. Still not 0.00 PCR and probably never will be. But I have my miracle babies (10 and 12 now) and here. 

All the best for 2019!

Sharon Morris


Belated congratulations on this milestone - I've not been on the forum for some weeks so just seen this thread. 

Many thanks for your help and insight over the past nearly 10 years (it will be my 10 year anniversary in May by the way, which is incredible to contemplate).  I am a newbie by comparison therefore of course, and as you know well my story is much simpler than yours(!) but you were a great help in my early CML days when I had no idea how things would pan out.

In particular, the efforts you and Dave made (with others of course) in the battle against the powers that be to have so many TKIs become available on the NHS (when NICE originally kept saying "no" - that I do remember well) have made an enormous difference to patients' lives in the UK.  

All the best