Changing to Second Gen TKI's

Hi Jonty,

If you are a year in on treatment and down to 1%, that itself is a strong reason for switching. Ideally you’d be down to 0.1% by now. If you were a little bit more than that your doctor would probably persevere with imatinib, but 1% is a bit too high to ignore so a switch is the right idea.

Out of the 2nd-line, 2nd generation drugs bosutinib is generally considered the most ‘gentle’ and with lowest grade side effects. Dasatinib can he hard on lungs, nilotinib can be tough on your heart.

Don’t worry too much about the long list of documented side effects, the way these are put together is anything that was reported by patients during clinical trials has to be put down as a potential side effect. This is why you’ll see things like weight gain, and weight loss as side effects!

Bosutinib does have one very common side effect, which is quite strong diarrhoea. However this generally lasts a couple of weeks so don’t worry too much about it. It will pass (pardon the pun!).

David.

Hi Jonty, I’m in a very similar boat as you.
I was diagnosed in the UAE in August ‘23 after a routine work medical flagged a high WBC. I returned to the UK and couldn’t start treatment until I went through the NHS diagnosis process, this reconfirmed CML towards the end of September. Commenced Imatinib 400 mg and hit the 3 month target with 6.5%. Like you I suffered little side-effects and had no reason to think Imatinib wouldn’t do its job. My consultant scheduled a PCR @ 8 months ( her error )with the results returning a 3.6% level, the 9 month test returned an increased result of 5.2 % and the decision was made to move me to Dasatinib 100mg / day with a check for any mutations. Like you I was concerned about the side-effects, reading the patient info got me anxious, especially the risk of pleural effusion. I started just over 2 weeks ago and so far have only suffered horrendous headaches for around a week, hopefully they won’t return. I realise some side-effects can take time to materialise and pretty much take each day as it comes trying not to focus on what might happen. I’ve found that mindfulness has helped my mental health alot, reducing the anxiety CML creates and focusing on the here and now. I can recommend the ‘Balance ‘ phone app which has a no strings 1 year free subscription, it guides you through the different levels of meditation right from absolute beginner to advanced.

Jonty,

Be careful with herbal things - they can cause more harm than good, and can sometimes counteract the TKI you are taking.

It’s really tempting to think that if you eat lots of spinach, and take some herbs then you are improving your cancer situation. The stark reality is that doesn’t really help at all. Obviously eating well and exercising is good for your overall health, but the number one thing you can do for your CML is to make sure you take your medication every single day and do not miss doses. It’s the single most important thing you can do.

David.

Definitely, it seems everyone navigates CML a little differently. This is the first thread I’ve responded to, but since my diagnosis I’ve found the forum a great source of information and support, knowing you’re not alone helps a great deal.

I’d second David’s advice on herbal supplements, I was warned by the hospital pharmacist to avoid these completely, I do take Vit D3, B12, K2 and magnesium complex daily, there’s many posts mentioning these supplements and the benefits, searching keyword ‘Supplements, vitamins ’ should list them.

Fingers crossed for you and hope the Bosutinib works well. Will definitely keep in touch.

Best wishes
Andrew

It seems Dasatinib is far more potent. My consultant did say they wanted a faster and deeper response and your reaction to Sprycel demonstrates this, hopefully it will work better for me too. Next PCR will tell.

My latest PCR results came back @2.67% after 17 days of new the TKI, that’s a 3.5% drop from 6.17% 3 days prior to starting Dasatinib.

Seems it’s doing a better job than the Imatinib, nothing back on mutations yet, assuming there’s none or they aren’t resistant to the Dasatinib. Next PCR in 8 weeks, hope the downward trend continues.

Definitely taking these results as a positive. Side effects have been minimal, still the odd day when I feel tired, no GI issues, and nothing worse than Imatinib.

Fingers crossed 🤞 your PCR is good, let us know.

Best regards

Andrew

Hi James,

thanks for sharing your experiences. It sounds like you have made great progress and it also shows the importance of taking responsibility for your own health and having a view on what to monitor and what's right for you. i will bear this in mind. It is very helpful to share experiences as sometimes it feels very lonely to scour the internet and read about the disease and the only interactions are with medical staff every few weeks, who are making life-changing decisions for us. Thanks for your time and consideration.

Best wishes and keep in touch.

Jonty

Positive news Jonty, good to know your heart and liver are fine with no major side effects, fingers crossed your next test results continue the downward trend. My next results are due soon hoping for the same.

All the best

Andrew

Hi all, I've had a further update on this which isn't great news. My BCR ABL is still 0.5 from my recent test in September. That means it hasn't changed since my previous test in June, having started Bosutinib on 22nd May. I had previously decreased from 1 to 0.5 between April and June 24 having been on Imatinib from July/August 23. Side-effects have been fine although the occasional Tinnitus is annoying and have tests planned for this.

I have had a further molecular blood test in early September and consultant is re-checking the KD mutation. Should know answers by mid-October.

So, overall I'm concerned that I may have been moved onto Bosutinib unnecessarily, although it sounds like the particular mutation also plays a significant part in decisions and outcomes.

I don't know if this resonates with anyone and as previous comments, this is a very long game to hopefully recover. I'm sure there are many ups and downs to come. However, decisions on specific TKIs and changes seem to be very important and I don't know if anyone has any experiences or advice. In an ideal world I may be able to move back to Imatinib (depending on KD analysis) but I understand this isn't generally allowed by NHS England.

Best wishes to all.

Jonty

Hi Jonty,

That sounds frustrating.

The flowchart doesn't really allow for going back to a previously tried TKI, but that is in very large part down to how drugs are funded on the NHS. Many"high cost" drugs including some for CML (https://www.england.nhs.uk/publication/nhs-england-drugs-list/) have to go through a different tech system for approvals when being prescribed to ensure that the patient meets the criteria to be prescribed them. So logically if you stop taking one of these drugs, and have intolerance or resistance to it you're not going to meet the criteria to go back on it because you have already 'failed' it, so you move to the next bit of the flowchart.

But imatinib is no longer on that list, so just my opinion that I don't believe there would be any procedural issue with going back on imatinib ... just a clinical judgment needed to support it.

David.