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New to the group / questions about relapse

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Hello!

 

I hope I'm not encroaching as I am not based in the UK, but I've found it quite difficult to find forums like this one for people to talk and ask questions about CML. If there are any suggestions about other resources I can look into I would very much appreciate it!

I am an expat living in China. My wife was diagnosed with CML last December. At the time she had lost a lot of weight, her spleen was very enlarged, and her WBC count was very high. Upon diagnosis she had an intermediate sokal risk score, and was started on tasigna (nilotinib) almost exactly a year ago today. Since then her treatment has gone extremely well. I'm not sure what her IS percentage was for the BCR-ABL test at diagnosis (forgive me if any of my terms are wrong, they are translated from Chinese), but in March (3 months after diagnosis) it was 1.3%, in June (6 months) it was 0.012%, and in September (9 months) it was 0%. She has also thankfully had almost no side effects, apart from some mild hair loss at the beginning. 

Last week she did a blood test for her 12 month checkup, and BCR-ABL was once again detectable at 0.0074% (IS). Even though this is a really small increase, my wife is obviously feeling disappointed that it has rebounded a bit. I was wondering if any of you could offer some insight about this, whether it's significant, and what impact it might have on her treatment in the future.  

For me this is a very strange thing to process. I am so grateful that my wife's treatment has gone so well, and when she got that 0% I was so happy I jumped straight out of my chair. However, since then I think both of us have found that we're actually feeling more anxious, like it's more stressful worrying about keeping something than getting it in the first place. I feel guilty saying that but that's the bizarre reality of the situation. This most recent result has added to that anxiety, and so far I have found it hard to find information about specific cases like this so I'm not really sure what to think. We are hoping to see the oncologist over the coming days, but since the doctor has so many patients to see it's usually impossible to get more than a few words out of her. If any of you could help us get a little bit of clarity or perspective I would really appreciate it. 

Just to finish off, I would also be grateful for suggestions on how to connect with people in the community. As a foreigner in China I frequently feel like a fish out of water, but this has launched me into a whole other universe. My parents were able to come and visit before the pandemic, but since then I've been cut off from my family. Thankfully, my wife's family has been extremely supportive, and she has networked with quite a large group of CML friends which has helped her a lot. So far I have been kind of keeping to myself, but I think it's time for me to reach out and connect with others about this. Thanks in advance for any pointers you may have!

 

Happy new year to you all,

 

Chris

 

Hi

Firstly there is no problem with your joining the group - we have regular contributors from USA, India and a wide range of other places.

Secondly the difference between a flat 0% and 0.0074% is not significant. The reading is an artefact of the test process and does not indicate any progression of the condition. In many ways it was easier when the instruments were less accurate and could not detect down to 4 decimal places. The reading is a reason to celebrate a continued good response, not a cause for concern.

Fundamentally your wife has responded well to the nilotinib and it is now very unlikely that CML will limit her life expectancy.

I hope this helps.

Best wishes for 2021.

Alastair

 

Your wife has nothing to worry about at all!!

This isn’t a relapse this is sensitivity of the test.

When numbers get super low as hers is you get a little bouncing from time to time. These are exactly the same result: many people panic when they have an increase in BCR. This isn’t an increase at all and even if she did loose undetected it’s of no cause for concern even if she rose to MR4 or even MR3 (although that would be considered an increase and would require an investigation). Anything under 1% is considered CML beaten so she’s way away from that.

Shes extremely lucky to have responded so well. Go and celebrate this result too I would be shouting from the roof tops. Honestly put CML past you. Remember TKI isn’t a cure perse but a functional cure if you managed to come off the drug and CML is a managed condition. (I like to think of managed like managing people sometimes they perform less well sometimes they perform very well). Sometimes a reading will be somewhere in between and sometimes either end of the spectrum.

Alex

cmhall - "bizarre reality" is a terrific way to describe the CML situation.  As the years roll by, you will marvel MORE, not less, at how strange it is to deal with about the only cancer I can think of you can have for a lifetime - a normal length lifetime, I might add.  You will get used to but never be free from the cyclical anxiety around blood draw time, no matter how many times you see those magical zeroes to the right of the decimal.  I ditto Alex and Alistair, and can add that Dr. Cortes, a noted CML expert in the US, has said that "anything </= 0.09% IS is outstanding and indistinguishable from PCRU."  Johns Hopkins, where I go, doesn't even report below 0.002.  I have been "stuck" at 0.005 or 6 for 4 years and have been at this bizarre reality business for 11.  I still worry each time I go for my PCR, so I understand.  We all do.  

Thank you Alastair, Alex, and Kat for your reassurance, I feel much more at ease. I think what Kat said about the anxiety being something that's always there is very important. We're only at the beginning of the journey so I think that we haven't totally learned how to manage it yet, but hopefully we'll get better at it over time. My wife is definitely a lot more brave than me, so that helps!

 

Chris

Hi Chris,

Others have rightly reassured you about the numbers -molecular numbers- of your wife's response to therapy, but I just wanted to add that you can reach out on this forum for support for yourself too. I know from my own situation that my partner and our daughter have both shouldered (suppressed?) their own fears and anxieties about my diagnosis for over 20 years now and there is little support out there for family members/loved ones. Of course, this is understandable but when I first had the idea to start this website and forum I was aware of the 'silent anxiety' of husbands, wives, children of CML patients and hoped that through this forum we could support everyone affected. I think for the most part we do do that, but please continue to reach out here- of course for your wife but also for yourself. 

Sandy

Sandy I can't thank you enough, this is truly a wonderful resource. I have already learned so much reading through past posts, and I hope that I will also be able to contribute in the future as I keep learning. 

 

Chris

Hey!!! Are you still having the TKI even though your readings are normal? 

Hey Sandy,

I have read your replies on a lot of threads and it makes me very optimistic. My brother got diagnosed with CML 3 months back and we are all quite taken aback. I have a few queries to ask you. 
I read that you have been dealing with this for over 20 years. Over these years, for any minor illnesses you had, were you given treatment in the same away as any other normal person? 
Is it possible for a CML patient to go off medication if they reach the desired BcR-abl levels? Any lifestyle changes one has to make? Have you been vaccinated? Can a CML patient have children without difficulty (ofcourse the doctor said that one has to be off the TKI for planning to start a family...still asking coz i am super anxious)? 

Hey Sandy,

I have read your replies on a lot of threads and it makes me very optimistic. My brother got diagnosed with CML 3 months back and we are all quite taken aback. I have a few queries to ask you. 
I read that you have been dealing with this for over 20 years. Over these years, for any minor illnesses you had, were you given treatment in the same away as any other normal person? 
Is it possible for a CML patient to go off medication if they reach the desired BcR-abl levels? Any lifestyle changes one has to make? Have you been vaccinated? Can a CML patient have children without difficulty (ofcourse the doctor said that one has to be off the TKI for planning to start a family...still asking coz i am super anxious)? 

Hey Sandy,

I have read your replies on a lot of threads and it makes me very optimistic. My brother got diagnosed with CML 3 months back and we are all quite taken aback. I have a few queries to ask you. 
I read that you have been dealing with this for over 20 years. Over these years, for any minor illnesses you had, were you given treatment in the same away as any other normal person? 
Is it possible for a CML patient to go off medication if they reach the desired BcR-abl levels? Any lifestyle changes one has to make? Have you been vaccinated? Can a CML patient have children without difficulty (ofcourse the doctor said that one has to be off the TKI for planning to start a family...still asking coz i am super anxious)? 

Susanne, I hope I can help with some of this - I'm 14 years in, and I'm an imatinib user.

Over these years, for any minor illnesses you had, were you given treatment in the same away as any other normal person? Yes; some extra checks about drug interactions, and I need to be a little careful with painkillers, as paracetamol loads the liver with work which is also metabolising the TKI, and ibuprofen/other non steroidals can cause stomach issues like some TKIs.

Is it possible for a CML patient to go off medication if they reach the desired BcR-abl levels? There is research into reducing TKI dose after BCR-ABL has been low for a number of years, and some people have achieved Treatment Free Remission (TFR) - i.e stopped taking the pills and kept the BCR ABL numbers low. I tried TFR but after 17 months my numbers started to rise and I went back on the meds and I am now back to zero BCRABL and talking to my consultant tomorrow about returning to half dose. There is information on this subject on this site, but it is too early to start thinking about this for your brother right now.

Any lifestyle changes one has to make? Not huge. I get fatigued sometimes but that could be age (I'm 64). I get cramp if I have exercised but use magnesium oil which helps control it. Be kind to your liver, but I can enjoy a couple of glasses of wine with a meal, or a glass of beer. It is worth your brother getting his vitamin D level checked and supplementing if it is low.

Have you been vaccinated? Yes most folks on here have been vaccinated.

Can a CML patient have children without difficulty. Pretty much yes for men - it has been shown that men can father children while on some TKIs - David Fitz did it and has posted about this. Ladies generally have to come off their TKI while trying to conceive - Prof Jane Apperley in London has published on this subject.

 

 

Susanne, folks on here will be able to help a little more if we could know which of the TKI drugs your brother is taking?