Targeted therapy drugs

[Tupelomojo]

I am interested in people who have taken Zanubrutinib. Did you half to go through a lot of hassle getting the drug?

How many preliminary’s are involved before they say OK?

I am interested in the stories of individuals that have taken the drug.

[AussieNeil Partner Administrator]

Tupelomojo, you haven't shared where you live and that dramatically affects access to the newer therapies. For those that live in the USA, the NCCN (National Comprehensive Cancer Network) Guidelines have recommend zanubrutinib for the treatment of CLL for over a year, so theoretically, there should be no difficulty gaining access to it.

Follow the Full Text link from this link pubmed.ncbi.nlm.nih.gov/357... for the June 2022 Version 3.2022 NCCN Guidelines update.

Neil

[Dawn-Marie]

My doctor prescribe it and it was approved. No copay at this time due to my deductible is met. I start next Thursday. I live in the USA and have united health care insurance.

[motorcycle1]

I am in the USA. Started Zanubrutinib yesterday. It was approved by both the VA and my Medicare supplement without issue.

[Dawn-Marie in reply to motorcycle1]

Which Medicare supplement do you have? So when my time comes for Medicare I will get the correct one. Please and Thank you

[motorcycle1 in reply to Dawn-Marie]

I have Part D WellCare . Although it was approved by them I do not know what if any copay is needed. I am getting the medication through the VA. I am a disabled veteran. When you are ready to sign up for Medicare Part D there is a government website you can go to where you put in the medications you take and it will compare the total cost including the premiums and any copays. I will see if I can get the website address and get back to you.

[Dawn-Marie in reply to motorcycle1]

Thank you

[motorcycle1 in reply to Dawn-Marie]

The website is Medicare.gov. Then you can search for part d and then you should be able to find out the cost by putting in the medication.

[Dawn-Marie in reply to motorcycle1]

I tried to look but just so confusing. I will have someone help me. I am 63 now so I have sometime.

[turbomotive60]

Im in the UK and been put on a Trial with Zanubrutinib ,been on it 12 months and alls going well atm.

[scryer99]

I've been on zanubrutinib for 6 months, in combination with a BCL2 inhibitor for the last three. I started in advance of the formal approval in the US through a clinical trial. It's an expensive drug, but the trial is picking up the costs.

I've had a fairly good experience with the drug. It had a positive, although not quick, effect on my ALC and swollen spleen and lymph nodes. It did not get those back to normal, however (the BCL2 inhibitor has been more effective at that). The drug is easy to administer.

Side effects have been manageable. Some mild petechiae (though I had fairly low platelets at start and they still are low, which may be a contributor). Some GI issues, that comes and goes.

Most significant has been joint and muscle pain, which has been ongoing, though a little better since the BCL2 was added. Most noticeable in fingers.

Exercise helps, but not enough to get rid of it. I'm at maybe 30% of my exercise capacity pre-cancer and it seems like I've topped out at that point. Fatigue remains an issue but that was true before I started on the drugs so probably not due to the zanubrutinib.

As a management regime, zanubrutinib has been effective for me. Just don't expect it to get you to remission.

[Scooby852]

My doctor had to appeal several times. I called the pharmaceutical company to get financial support to cover my very large deductible.

I didn’t qualify for financial assistance. So I told them if they couldn’t help me out I would go with Acalabrutinib, who was willing to absorb all costs. They quickly came around. It is a business after all.

[Samm22]

I have been taking Zanubrutinib for over 4 months. Very little side effects. I am not on Medicare yet but have private insurance and my doctors office got it approved pretty quickly. Just recently my doctors wanted to add Venetoclax and it was denied by insurance company. Have tried appeals and they were also denied.

[CoachVera55]

Zanubrutinib is an amazing drug. After 1 week full dose I noticed all my Neck Lymph Nodes just disappear. I however pushed my body too much & it affected my Lungs. I switched to Acalabrutinib 1/2 dose & it was good too but not like Zanu. I also felt palpatations so I switched back. I am only on 1 - 80mg per day until this untreated pneumonia clears up. My Oncology or Pulmonary Team from SIUH Northwell would never order the antibiotics so I got it from a friend & I feel so much better. My goal is to go to 80mg Twice per day. Its too strong for me but I love the dosage flexibility.