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News from Basil in South Africa

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Hi all.

It's been a while since posting to this Group, so I thought I would give an update on my CML status.

At the beginning of May I celebrated my 11th year in Treatment Free Remission. (TFR)

As a recap I was diagnosed in 2003 and for the first few months I treated myself to Interferon A injections every few days. The side effects were horrible although my WBC was dropping. In December 2003 I was then started on Gleevec, 400mg per day. 

I am not sure when I reached PCRU as the test was not available in South Africa until 2005. My first RT-QPCR test came back BCR/ABL undetectable in March 2005 and that has been the case thereafter, with a couple of very low positives at the start of my TFR. I changed labs at that time so I am inclined to think that the results were suspect.

I had a number of side effects while on Gleevec, which disappeared within a few weeks of stopping my medication. Fortunately I had no withdrawl symptoms as little was known about post TFR back in 2009. 

I have RT-QPCR tests done 6 monthly, although I have extended that to 12 months on a couple of occasions, but feel more comfortable doing the tests twice a year.

In 2018 I was diagnosed with Colorectal Cancer and underwent a successful operation to remove it. Fortunately the cancer was in stage 2 so a short course of Chemo and Radiation followed. Three monthly tests thereafter all proved negative and my tests have now moved out to 6 months.

I am now 75 years old and was playing Golf twice a week till Covid-19 lockdown put a stop to that in March. We have recently been allowed a 3 hour exercise window daily, so at the moment I do a brisk 3 km walk each morning followed by some physical exercises during the day. Unfortunately my wife has stage 3 Parkerson's Disease which limits her manoeuvrability, so all the daily chores in our home have become my responsibility as well as maintaining our lawns and garden. (Professional Garden Services have been suspended under our lockdown laws)

I am very grateful for the blessings from above and my main complaints at this point in my life is that time is passing too rapidly and that we won't be able to join our children and grandchildren who emigrated to Australia, due to our recent health issues.

Stay well and keep safe during this terrible World Pandemic.

Kind regards

 

 

 

Your story gives us hope.  Thanks for sharing.

 

Steff

Wow you’ve come a very long way and an inspirational one to know you’re TFR for so many years. Is it compulsory to have tests seeing as you’ve been clear for so long? I realise TFR isn’t a realistic therapy goal but a nice one to have if you respond well. So seeing as you’ve been in TFR for many years the CML journey doesn’t really end then because for me TFR means no CML and no testing.

You’ve really been through the mill and sorry to hear about your wife. Life is cruel and beautiful all at the same time. You deserve nothing but health and happiness and get to see your loved ones soon. Stay safe and happy.

Alex

Hi Alex,

Thank you for your good wishes. 

My post is to encourage CML patients and to serve as an example that long term TFR is possible, but unfortunately not for everyone at this point in time. As the research for a cure continues, TFR is a viable alternative for about 40+% of candidates who meet the requirements to stop and successfully do.

Should I wish I can take my tests out to 12 months and I have done it in the past, but I choose to do them every 6 months.

Although I remain in deep remission at Log 5 the translocation of the Chromosomes (9 and 22), which caused the CML initially remains, and therefor TRF is not a cure but a great place to be for a CML patient. Fortunately I had no withdrawal symptoms after stopping my daily dose of Gleevec. I consider myself very blessed and fortunate as about 30% of the CML pattens who stop their TKI's suffer from withdrawal symptoms such as bone pains, etc., although most report that these nasty side effects disappear within a year into TFR.

So I can say that TFR is a realistic goal for most CML patients who are patient and meet the qualifications to stop TKI's, and at that stage if they don't try TFR they will never know if their goal was achievable. My life is completely normal and I feel great for a 75 year old.

Good luck to you Alex on your journey with CML.

 

Of course that's fantastic for you. Ahh yes I forget that the translocation remains and why this is a functional cure. Maybe one day a real cure lets hope. We have the next best thing with our meds. And may they continue to improve.

All the best and thank you.

Alex

Hello alex,
Did you get your pcr results which you said you would get it on 21st may.

Hello alex,
Did you get your pcr results which you said you would get it on 21st may.