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Question for everyone about TFR

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Hello to everyone. I am doing well 4.5 years after diagnosis (April 2017) but have never achieved undetectable status. As a result my doctor says I will probably never be eligible for TFR. This is disheartening, especially because I live in the US and imatinib mesylate is extremely expensive: my insurance pays $6800/month (400 mg daily ever since, generic, manufactured by TEVA or Dr. Reddy’s). If I am on this medication for the rest of my life (could be 20 or 30 more years!) I will be a very expensive patient over my CML lifetime.

Here is my question. For all of you in TFR or considering it (especially those living in the UK where your medical care is so good and inexpensive to you), what are your reasons for wanting TFR? Is it mainly to avoid side effects? Or is it to avoid the expenses? When in TFR is it like not having the disease at all (other than regular checkups with doctor)?

I am grateful every day to have a treatable disease. But still it makes sense to keep gathering data.

Thanks.

 

Hi, Justine ,you are not undetectable but what is your recent BCR ABL .You could try moving on to Dasatinib it might just do the trick and get you undetectable  .If you are low enough 20 mg Dasatinib might be cheaper than Imatinib .I would like to try TFR one day just because of long term effects .Denise.

My latest BCR ABL result says p210 value = Positive. IS <0.1

So it’s really good, but not undetectable.

My doctor thinks I should stay with imatinib because it’s least expensive and the side effects aren’t bad (not insignificant, but probably not as much as the others like hair loss, heart problems, lung problems, etc.). Maybe next time I will ask about a low dose of Dasatinib. Thanks Denise.

And yes, I would think many of us would want to go TFR if possible.

Hi, that's certainly low enough to go on to 20 mg ,I am on that and I feel much better than when I was on Imatinib.I was tired  all the time ,had the bad rash and hooded eyes ,all that went when I changed to Dasatinib .Is your Doc a CML specialist cos he doesn't sound like one .

Hi Justine,

In direct response to your question about why we as CML patients would want to go for TFR or even dose reduction then I would have two major reasons.The first is that even though tki therapy is of targeted molecular nature rather other forms of chemotherapy it is by some still classed as chemo.I would class it as moderately toxic whereas some chemos are very toxic but can be temporary and not needed lifelong. My consultant told me that AML for instance is still very difficult to treat and the chemo cycles extremely challenging but would only be administered for a period of time; but a cure is still questionable. Essentially for some is not difficult to take but  I would love not to have take something that in the long term has not been proven in terms of its possible effects.

The second issue is that all of us experience some type of side effects;it is the luck of the draw as to which ones we experience as our bodies are different.Hopefully TFR would lead to fewer side effects especially in the longer term-we are still trying to find out whether after 15 to 20 years of a tki  use we might suffer any irreversible side effect conditions.

In your case you have the financial issue to contend with which I gather for even those insured in USA still have to pay a co amount or a percentage of the drug price .So a while back I saw that in US branded Glivec had been priced by pharma at over $120,000 per annum for a 400 g daily dose whereas in UK when I last enquired at my pharmacy it came out as £24,000 per annum or $34,000;the National Health Service would do a deal with pharmas to gain a preferential price which would be confidential.Of course we have moved on and now most insurance companies in USA (and UK ) and the NHS in UK would only allow the prescription of generics of imatinib. However it would seem that some generics have still not come down in price as we originally thought might be the case.Dr Reddys at $70,000 pus per annum is still expensive especially if you have to co- pay a percentage.You seem to have a system of pharma raising its prices as much as the market will take and for insurers to respond by approving only what might be the cheapest that produces a reasonable output in terms of clinical care.Also then no doubt your premiums are elevated to cover this situation! When I enquired last with Boots one of our major pharmacies the private price for some of the imatinib generics was about £12,000 per annum or $16,500. NHS would of course have their confidential deals.

Perhaps it is not a good time to compare US and UK systems of health post Covid as there are challenges here.Most on Forum from the UK treated within the NHS having already been dx pre Covid with CML and who  are in the system for appointments might say it is OK; I still get my bloods and I still get my drugs .I dont really know how those with blood cancers and other cancers have fared during the Covid pandemic in terms of being diagnosed and treated in good time??

In the UK many NHS patients would not be aware of of drug prices and say yes its free;however there is always the risk of having to move from generic to generic or be placed on the apparently cheapest one like Accord that seems to have some poor records of side effects.It might depend on what the latest deals are between the NHS,hospital trusts and pharmas.

We should realise that us with CML may have a normal life expectancy but we are very very expensive for say the NHS and insurance companies.I did some calculations on how much I have cost the NHS and my private insurers (mix of both) and it is over 15 years frighteningly high.In USA it is also a financial burden for life.

In your case in order to minimise costs have you thought of trying 200 mg a day of imatinib as a dose reduction experiment or will your doctor not entertain it ? If you fail you would eventually get MMR back by going back on the orignal dose  but it might take some time.

If you were to go on to Dasatinib  at the lowest dose (no generics yet I believe) would that be cheaper for you? Branded Sprycel I presume would be as expensive as the branded Glivec or perhaps greater?

I wish you well

John

 

Thanks John for all that good information. I appreciate it and you!

You and Denise both suggested a lower dose. My doctor is in fact a CML specialist and I will talk with him about this at next checkup, again — this time with better questions and background than I had last time we discussed it.

Thanks so much!

Hi Justine ,I was diagnosed in November 2017 ,I am sure if you went on Dasatinib 20 mg you would get to be undetected , it works slightly differently than Imatinib it should mop up your residue so to speak.I can't believe a CML specialist would say you will never be a candidate for TFR ,don't believe him keep the faith and fight for it .Its your body ,docs don't always know best .Good Luck ,Denise.