Hi all,
I had the pleasure to attend this today. This being my first patient group and meeting fellow CML’ers in person. I thought it was fantastic, everyone was very warm and friendly, the information was very helpful but most of all it was great to feel a part of something and to be with those that just get it.
If anyone that attended wants to stay in touch you can contact me alexmcpherson1980@gmail.com.
Alex
Hi, Alex, I'm 57, diagnosed with CML six years ago, been on Tasigna ever since, today's bcr-abl reading 0.021 so going in right direction. No noticeable side effects other than light sensitivity (now take Vitamin A), no longer tan and have some vitiligo. But I'm alive :-)
I'm a big fan of complimentary medicine, especially kinesiology, and desperate to heal and get off Tasigna even though it's saved my life. I worry about long-term side effects. Haematologist told me that normal life expectancy might not be achieved as Tasigna can affect the heart and potentially one day cause a heart attack or a stroke. Cue massive anxiety attack which has driven me on here today (I've never really properly looked around here before because I've struggled to come to terms with this ever since 2013... an ostrich with its head in the sand!).
You seem to be very 'on it' in two forum threads I've browsed. I'm desperate to be put forward for trials. Do you know anything about how to be selected? I Sorry to appear a bit of a numpty. I selected Clinical Trials at the start and there didn't seem to be any. And yet, elsewhere on a thread, everyone is off drugs and being monitored. I want to join in!
So glad you are doing well. You seem very calm, which is fantastic. I seem to be getting more neurotic with every passing year!
Best wishes, Debbie
Hi Debbie,
There have been several trials about dose reduction and stopping treatment which have been completed. Prof Richard Clark talked about the Destiny Trial at the patient day last year - you can watch his presentation on this link. He is giving an update on this at the next patient day in Leeds on 21 September - see the pinned forum item above. (I am assuming that you are UK based?) There is likely to be a fair amount of discussion around dose reduction and Treatment Free Remission (TFR) at the Patient day if you can be there - unfortunately I can't make it this year.There is a paper on this link on the front page on the site. Key take home is that depending where you started betwen approx 50 and 70% of people in the trial were still in TFR 2 years after stoppng the drugs. Those that lost remission all regained it when they went back on the meds.
While most of the patients in Destiny were (like me) on imatinib, there were some nilotinib patients as well. If you have been at an MR4 level for several years it would be worth talking to your consultant about dose reduction, in the first instance, and then trying for TFR. For info I did a year at half dose (200mg) on imatinib, and stopped taking them in early October last year. My last PCR result was 0.019%; next test in 3 weeks.
It would be worth checking your vitamin D level - some of Scuba's posts explain why, and curcumin is used by many people as well.
What dose are you on?
Hope this is useful
Hi Debbie,
Wow you’re doing great I’d be so chuffed with those levels. I am not yet in MMR but close and hope to be so whenever that may be. I haven’t always been calm it’s been a rough time over the 15 months I was diagnosed but I think a big part of the battle is the acceptance that we have this thing and it ain’t going away anytime soon. What we resist persists as they say, and I live more in the moment these days many thanks to a lot of meditation practice which has helped me massively emotionally, physically and psychologically.
I am too on Nilotnib and so far it’s been doing the job unless I get told different at my next tests. All 3rd generation TKIs are stronger and do effect various parts of the body including the heart. I don’t think you have anything to worry about, let’s concentrate on what we do have and not what we don’t. (I think your doc shouldn’t have said that as it is very insensitive and not even a proven fact as well, as that med has not been around long). I know that’s not easy I’ve self diagnosed myself with every illness known to man since my diagnosis, that’s called anxiety and all we can do is be here for each other and offer perspective. I have even read in the Tasigna documentation that those taking can “expect a normal life span” they can’t write that if someday you’ll die because of the drug and a heart attack. I think your doctor is misinformed. If you’re concerned about it and your levels are stable you can have a reduction in dosage which will keep the CML at bay but also reduce the toxicity on your body. Sure it would be better to be off the drug but the CML is the worse of the 2 evils. When I first diagnosed and read all about the toxicity and symptoms I was more scared of the drug than the CML and now it’s more the other way around. You’ve been on the drug for a long time and I am sure body has accustomed to it by now. Sure things can change but again we must stick with what we know not what we don’t.
I cant offer any info on trials but at the talk I was at in Kings College there are a couple of trials but they couldn’t give too many details yet. I believe if you’ve had a deep sustained response you can stop meds but you’ll be monitored closely. In some ways I prefer to take the meds and be left alone but I guess it depends on the symptoms a person has and how desperate they are to stop. I for one would be more anxious stopping than continuing with what is working. If ain’t broke don’t fix it kind of thing.
I understand fully about burying your head in the sand but it only caused me more pain. I find talking and meeting people (my first time meeting other CML’ers) We all deal with this differently and that’s absolutely fine.
Take care and by all means stay in touch. A problem shared is a problem halved. My email is attached.
Alex
