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Bcr/ABL Still undetectable

Dear All,

I had my 6 monthly consultation at HH yesterday and thought I would update you. 7 years on from my sct, my pcr shows that bcr/abl remains undetectable and all blood counts are within normal range. I must say that I was unusually nervous while having my blood taken- which is a surprise given that I have been doing this since 1998 and thought I was used to it!The fact that I now only go to clinic twice a year makes it a less familiar experience. I suppose that sort of anxiety never leaves and is always there in the sub-concious. 

However, I am not complaining! 

Best wishes,

Sandy

Hi Sandy, that is fantastic news and gives us all additional hope. Treatment has progressed so well over the years & you continue to give us all inspiration. Thank you so much for your dedication to this site & the hope you give to others, you should be well pleased with yourself! I think I would be terrified to wait 6 moths, so no wonder you felt some trepidation! Even thou you've had a sct the anxiousness never goes.

I am off to my first visit to HH next week under Prof Apperly, so I too am feeling quite anxious as I have reacted so badly to all 3 TKI's. I am not sure what to expect.

Have a great weekend!

Ali

Sandy that is excellent news it gives me hope that I will one day get there. I am 14 months post sct with a bcr/abl of .02 and have taken great comfort from your diary, postings and support. Thank you.

Thank you for sharing that wonderful news!
May it go on.... and on... and on... and I echo Ali's words.

All the best

Beth

Hi Sandy

That is great news, you must be really pleased. Do they ever stop monitoring you or will you continue to go twice a year?

K

Congratulations on remaining PCRU Sandy, it must be a wonderful feeling -  something we are all hoping to achieve one day!! :-)

Ali - good luck with your consultation with Prof Apperley next week. I have been to see her as well, she is a lovely lady, very patient-orientated and so, so knowledgeable. Seeing her makes me feel SO much safer!

One little thing though - you are coming from a distance to see her, Bristol from memory? I also travel 150 miles or so to see her, and have got into the habit of ringing the clinic about 2 days in advance just to check she will be there. It is a long way to go when you really just want to see her and not anyone else.....if you ring the clinic reception desk at the Catherine Lewis Centre on 020-8383-3297, they will know, she is very efficient and always signs out of clinic when she is not going to be there.

Once again, the best of luck and let us know what she says.

Regards, Janet

Hi Sandy,

Great results. I hope you stay undetectable 100 more years...


Don

You must feel on top of the world Sandy.  It must be such a relief to get another all clear.

ATB

Pennie 

Ha Ha.... thanks Don - I would settle for another 25- or maybe 30... well 40 ;o)

Hope you too are doing well- as a fellow 'transplanteer' so to speak.

Sandy

Hi Karena,

I think the plan is you see them for life..... just the intervals get longer. I think every 6 months will be the timeline for me for a couple of years... then every 12 months if I maintain pcrU.

My consultations now last around 5 minutes and are with the registrars rather than the consultants like Dr. Marin and/or Prof.Apperley, which is a sign that they are not at all concerned about my case! ....and I am grateful for that-

although I used to be a little upset after being someone who generated a lot of interest (diagnosed in AP-first to take imatinib - patient number 13 on the mini-allo + imatinib study etc) and at first it was worrying that I was not getting the attention I had become accustomed to- but I got over that feeling very quickly and I am now happy with my lower profile and grateful that I just get a lot of smiles from the newer doctors when they read my file and see my blood results. 

Sandy

Dear Ali, How are you doing? have you stopped taking nilotinib or are you on a reduced dose?  I am glad you are going to see Prof.Apperley - she is one of the leading experts in CML and fights for patients to have access to the best available therapy- and HH is at the cutting edge of research/clinical trials/ lab monitoring etc. I am sure she will advise you well. Good luck and please update us after your consultation. 

Janet has given you some really good advice- ring the clinic to make sure Prof.Apperley will be there. 

Best...

Sandy

Sandy, Many  many congratulations on the latest result!!

I am not suprised that nerves are still present when waiting for result. Although after a while if readings are going well in terms of downwards direction, I know I still get apprehensive waiting for next PCR result.

My own readings have been gomig well, apart from the odd blip upwards from time to time. I reached PCRU in January but next reading in april was up again to 0.009, but fortunately repeat reading came in at PCRU again. Now waiting next result from 10 days ago- fingers crossed for PCRU again.

Thanks again for all your input into this site  - its been a fantastic support and encouragemnt over the past 3 years !!

Regards

 

Andy

Congratulations, Sandy. it must be a wonderful feeling to be PCRU for so long.  May I repeat what others have said and say a big thank you for this site and all the support and information on it. It has made so much difference over the past 9 months to know others are out there with similar concerns.

 

best wishes to one and all

Chrissie

Great news Sandy. Ongoing thanks for your committment to this site as well.

Excellent news Sandy, well done and I think for many, it will mean a lot that you say it's still nerve-wracking awaiting results!

 

ATB

fantastic Sandy. I know I would very much prefer not to go through a transplant as you did but I always like to hear stories from those who have and have done so well.  Definitely boosts confidence all round.

Thanks also for all your work on behalf of CMLers - much appreciated.

Richard