Being able to afford the copays???

[Panz]

Things are now under control. I am now on Imbruvica. It was prescribed on December 18 and got my first prescription and was very lucky to have gotten a grant to cover the very large copay. So I once again have both oars in the water. I have had CLL for 30 years and have been very fortunate. I do live in the USA and I really appreciate this community! I am in a good place!

[Cllcanada Top Poster CURE Hero]

That's great news... keep well hydrated... you beat me by 10 years...! 😀👍🏼

~chris 🇨🇦

[Panz]

Thanks for all that you do...I love this site

[Panz]

I have a question...the hydration...is that to protect the kidneys or to flush the toxins out?

[RJR1 in reply to Panz]

Probably both... but both of my oncologists have said it flushes the toxins.

[Big_Dee in reply to Panz]

It is both, my uric acid level was within high range, but expected to go higher with chemo treatment. High amounts of uric acid can cause kidney damage. I stayed well hydrated as Chris said. I drink 10-12 of 8 fl oz glasses of water a day.

[Panz in reply to Big_Dee]

I am drinking 10+ a day....we may just meet in a restroom some day!!! 🙂

[Big_Dee in reply to Panz]

This is very true. I calculate that I drink about one 8 fl oz glass in half hour, so spend 6 hours a day drinking water. The rest of the time I am in the restroom

[Ngtinfu]

How did you receive the grant? Was it difficult? Glad you're doing well!

[lankisterguy Volunteer in reply to Ngtinfu]

In the USA your doctor or their hospital choose one of the 4 specialty pharmacies (Avella, Biolgics Diplomat or Onco 360) and prescribe to them. The pharmacy will contact your insurance to get approved to ship the drugs to you. Then the specialty pharmacy may contact you to set up a copay grant.

If they don't, contact the lls.org for help with copays.

Here's a link to the many of the programs that offer grants for Medicare patients:. rxassist.org/patients/res-c...

Len

[Hidden in reply to lankisterguy]

I was just approved again for co pay funding from PAN. My grant was running out 1/17 and PAN sent me a letter to reapply. I called them and did everything over the phone except for sending a letter with proof of income. My new funding should start on 1/18. First time I did this direct. Every other year the Dr.'s office and Diplomat took care of it.

[Panz in reply to Hidden]

Way to go...so happy you age good to go for another year! We are dealing with enough and really don’t need the stress of wondering how it will be paid for. 🙂

[Hidden in reply to Panz]

I hope it's taken care of!!! Will know for sure next week. Thanks!

[Panz in reply to lankisterguy]

Thank you ever so much for this info. God Bless you!

[thompsonellen in reply to lankisterguy]

Actually, I just had a change in insurance and I can't use Diplomat anymore thanks to vertical integration. I'm actually slightly panicking about getting my meds by Wed and I started 7 days in advance.

[Panz in reply to thompsonellen]

I fully under stand your panic. What are you on! Work with your speciality pharmacy...they were a huge help for me! 🙂

[thompsonellen in reply to Panz]

Ibrutinib. Diplomat has been great, and they are doing the handoff, but I don't even know the new pharmacy. I emailed my doc's office to see what is going on.

[Panz in reply to thompsonellen]

All the uncertainty is very stressful and that is the last thing you need...hope you are able to get onto of this soon and very soon!!! 🙂

[Upthenorth]

I had the same experience; the specialty pharmacy secured the grant to cover my co-pay, so although my other, less-expensive drugs cost me $5-15 per visit, my $11,000+/month drug costs me nothing. I can only believe the makers of Imbruvica created this funding to make the drug available to non-billionaires. Gotta love pharmaceuticals, huh?

[Hidden in reply to Upthenorth]

Ha! Yah. I always think, with all the money we're spending every month to pay for our medical insurance, RX plan, etc. I still have to beg for money from a foundation to cover an Rx drug. I really don't like doing that at all.

[virdieblue]

In NYS there is also the EPIC program, it does have eligibility requirements. I don't know if other states have this. My specialty pharmacy introduced me to this.

Virginia

[Panz in reply to virdieblue]

Yes my speciality pharmacist found me the grant and I am humbled to have it. 🙂

[Panz]

The above people have said it all far better then I would be able to....my speciality pharmacy that is part of the cancer center. I checked other places and my Publix pharmacist said go and find the lowest copay and because the cancer center does all the work I settled for goingmthru them.

[showdog]

How long have you been treated for cll? 30 years or less?

[Panz]

I have had CLL for 30+ years and treated with Leukeran 10 times over a 27 year period and now as of January 5th I am on Imbruvica 420mgs...

Everything is going very well....I got an Ig infusion today...I get Gammagard, however, it is rather scarce right now so I was very lucky to get it. I get Ig infusions every 4 weeks and that keeps me in a very good place.

[BamaLady]

I have been on w&w since 2017 now my wbc is very fragile and I frankly haven't done anything due to cost as my Dr wanted me to start immediately on Ibrunitib since I first saw him. I have been thinking about

doing small doses of reg chemo for 4-6 months which is covered by my

insurance. But my dr seems to think the pill is the way to go and has discouraged me has anybody else had this. What do you all recommend I am tired a lot but other than that and night sweats I feel I could wait a little longer. Because the cost of Ibrunitib is outrageous for my co-pay.

[Panz in reply to BamaLady]

Good morning, BamaLady. It is indeed a difficult choice or decision to make. I like you had my insurance cover my old treatment of Leukeran 2mgs and I truly had no idea what the cost of any of the newer treatments would be but was totally blown out of the water by the possible copay. I shopped around and my copay was going to be between $1,100-$3,230 and there was just no way I was going to put my family in debt. The best place for me to get the Imbruvica was thru my cancer centers pharmacy....I told them we were on a fixed income and simply couldn’t handle that huge copay....they quickly told me go give them time and the would see what they could work out for me as there were some options....that was on December 18, 2018. They worked with my insurances and fount me a grant that is good for a year and so on January 5 of this year I began Imbruvica 420 and I am doing great. A few minor side effects that have all disappeared. We shall see what happens at the end of the year. But my doctor tells me there are very few if anyone is able to meet the copay.

If my copay ever is more then $100.00 per month I will justhave to tell them to do the best they can to prescribe something my copay will keep me under that amount and I will simplylive with that. I just turned 77 and have had a very good life. I do get IVIG infusions every 4 weeks and that keeps me in a very safe place. Somthat is where I stand. I would be willing to go into a trial if there was one out there but at my age I question that I would be accepted. So it is what it is and I remain in God’s hands and right now He isn’t ready for me!!!

Anything else you want to know just ask. I am a Michigan snowbird living in Florida. I wish you only the very best, my friend, youare not alone and please stay in touch. 🙏☘️😍💕

[BamaLady in reply to Panz]

Thank you so much for the input. I have been researching till my eyes are bugged out. So much info out there. I am just ready to do the iv chemo retuxan and other to start and see what happens from there. I