effects of discontinguing taking calquence

[marvindrossman]

effects of discontinguing taking Calquence after 1 year? expensive to say the least! as you know

[AussieNeil Administrator]

Hi Marvin and welcome to our community. If you've used your real name, HealthUnlocked recommend changing it to something unrecognisable to maintain your anonymity, which I've covered in the first item of this post which contains other important security tips: healthunlocked.com/cllsuppo...

You might also prefer to lock your post as described in the following link, so that your CLL related discussion remains private to this community:

healthunlocked.com/cllsuppo...

With respect to your question, BTKi drugs such as Calquence work fairly slowly. Only about 10% get to eliminate all sign of their CLL after 4 years (that is attaining uMRD or undetectable Measurable Residual Disease). We have some members on ibrutinib achieving the 10 year mark and I think some on Calquence approaching 6 years.

There are a number of means of reducing the drug cost, such as changing your health insurance, meeting the requirements for payment assistance from charities, or compassionate access from the manufacturer. Others in the USA can better advise you about them.

After only a year on Calquence, you are very unlikely to be able to stop taking it without your CLL coming back fairly quickly. In some cases it's possible to have tumour flare, which can be a scary experience, but resuming Calquence shrinks the rapidly growing nodes. It's also possible to add venetoclax to hopefully get to uMRD quickly, so that you can have a drug holiday. We don't have enough experience yet to know for whom this approach is worthwhile.

Neil

[lankisterguy Volunteer]

Hi marvindrossman,

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At 78 in the USA, you are very likely on Medicare, and I hope you chose Medicare Parts A&B, instead of a Medicare Advantage Plan (Part C). Either way you likely have prescription drug insurance coverage.

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Regardless, the LLS.org has counselors that can guide you to to copay assistance programs that will reduce or eliminate the costs that your primary drug insurance does not cover.

See lls.org/support-resources/f...

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Len

LLS.org Copay Assistance

[Luv2Craft]

Hi Marvin,

I'm sorry to hear you are having to pay for Calquence. It's expensive. I started Calquence four weeks ago and have not had to pay for it. There are two assistance programs offered by AstraZeneca for it, one for people who have health insurance like me. The program is called Access 360. My health insurance pays for Calquence, minus my co-pay of $250, which is paid for by the Access 360 program.

The other program called AZ&ME is for people on Medicare and the uninsured. After I turn 65 years old, I will qualify for Medicare, and stop paying for health insurance, which then, the Access 360 program will end for me. I was informed that when that happens, I should apply for the AZ&ME program and Calquence will be at no cost to me. I don't know if there is an income limit. On AstraZeneca's assistance website it only states that your income must qualify, but does not show how much. I hope you can qualify for one of these programs.

Here are the links:

AZ&ME - azandmeapp.com/home.html

Access 360 - myaccess360.com/patient/cal...

Vicki 😊

[Phil4-13 in reply to Luv2Craft]

Luv2Craft, Medicare does deduct a monthly premium from the monthly social security check, about $150.00. 🙂 Sandra

[Luv2Craft in reply to Phil4-13]

Sandra,

Thanks for the information on the cost of Medicare. I knew there was a monthly charge for it, but I didn't know how much. My husband and I are currently paying $600 (for both of us) for our health insurance, so it looks like Medicare will cut our cost in half. This is great news and definitely something to look forward to.

Vicki 😊