Imbruvica : I have CLL since 2009, stage 4 when... - CLL Support

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Imbruvica

MartiP2009
MartiP2009
42 Replies

I have CLL since 2009, stage 4 when diagnosed. I have been on Imbruvica for almost 4 yrs, no side affects and I’ve been in remission for 2 yrs, I also get gamma globulin infusions every 4 weeks. yesterday I took the last dose because my grant is at zero, I’m on Medicare and the pharmaceuticals have no assistance for Medicare or Medicaid patients, unbelievable since CLL is most prominent for seniors. I’m trying for other grants but so far I’m finding that neither the specialty pharmacy nor the oncology office are being very proactive and no sense of urgency. I’m very concerned about possible withdrawals and what’s ahead for me if I can not continue on Imbruvica because the copay is unaffordable for me. Anyone else experiencing this?

42 Replies
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cllady01
cllady01Volunteer

MartiP, see the posting by CitySlickers "Imbruvica Cost". Possible connections for aid with the cost is given by two of our knowledgeable CLLers

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GeriGi

Hi! I've been and WW for 12 years and platelets now at 119. What initiated treatment for you? I'm hopeful for imbruvica and venatoclax. How much is the imbruvica costing you? Geri

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MartiP2009
MartiP2009
in reply to GeriGi

CLL, I started with IV chemo would go in and out of remission. Started imbruvica May 2014. The cost now is $2500 first month 2018 than roughly $550 per month after that. I had a grant up until this month. Had to switch special pharmacy my previous one did not sign contract with Humana, they were always on top of grants, the new one didn’t let me know until I called for a refill

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GeriGi
GeriGi
in reply to MartiP2009

I'm sorry I mean a go FUND me page. Also, maybe check with the consortium hospitals. They may have some answers

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joann504
joann504
in reply to MartiP2009

This is my fear. I just started ibrutinib, My insurance is covering it this year. Next year I go on Medicare and I am worried I will not be able to afford the drug. From what I have researched, I will not be able to afford it. I am not sure if the med will work or if I can take it as it is too soon to tell. If it works, I would like to be able to keep taking it. It is not bad enough that I have CLL, but I also have to stress on able to afford treatments. I know other people are in my situation and I pray we all can get some help with this very expensive drug.

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MartiP2009
MartiP2009
in reply to joann504

Talk to your speciality pharmacy they can apply for grants for you. Try not to take a Medicare advantage plan, research Medicare supplement plans or part F, also ask the pharmacy which prescription plan they recommend.

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GeriGi

Have you tried a go find me page? Who and where is your doctor located?

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AmericanRonin

So even being in remission for two years, is the doctor keeping you on the full dose of Imbruvica?

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MartiP2009

Yes

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Lola69

Did not think one can go into remission on imbruvica.

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farber

Hello, I'm on IB for 2 months, results slowly getting better, but constantly sick with cold .Is this result from medicine or CLL ?

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MartiP2009
MartiP2009
in reply to farber

I believe from CLL, I’m very prone to sinus infections, skin rash and uti’s just before I’m due for globulin infusions. Headaches I get too but those are from the Imbruvica

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Corkyrissa

Have you tried the Pan Association? Also, try the LLS society . The first has a $7,600.00 grant the second $5,000.00 grant I hope you have luck.

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MartiP2009

Today I was informed my Pan grant was renewed, I will have my meds tomorrow.

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kathymac52

The LLS society funding for CLL is closed now...:(

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richutchens

Contact Lymphoma/Leukemia Society

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Roydeane

I hope it works out for you. I have had so many side effects over 5 months of IB usage that i had to stop last week. Very sad about that... and i am getting enlarged lymph nodes that i never had before already... just sharing. Good luck.

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Spacee

I know it is a ways off for open enrollment for Medicare and the insurance companies that offer supplemental policies. But you need a type F policy. AARP United Healthcare is what my hubby has. Humana is known for not paying well. So sorry you are going through this.

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MartiP2009
MartiP2009
in reply to Spacee

I have a supplement F but that does not cover medications you take at home it does cover infusions. I have Humana for prescription meds and Imbruvica is a prescription oral chemo. Thank you for thinking of me.

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Spacee
Spacee
in reply to MartiP2009

Thank you for your corrections. Still learning about all this. Sigh!

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Corkyrissa

You should try to see if you can get help because you are on disability with health insurance. I'm on Medicare and have Blue Cross and Aetna part d Blue Cross is $216.00 a month and part d is $59.00 a month.

They say that imbruvica is not a chemo drug ??

Awful isn't it being being sick and having to worry about how to pay for your meds.

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doris33

Don't understand your question. I was diagnosed with CLL in2008. Have been on Imbruvica for over 2 years with some side effects. Nail damage, red spots on face and arms. I pay a 77$ copay each month for medication with medicare. No co pay for IVIG infusion, also every four weeks. Wish I could get off meds. Good luck.

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MartiP2009
MartiP2009
in reply to doris33

I too have fingernail issues as well as problem with hair quality, I stoped coloring hair and it’s much better. I have Medicare plus I pay for supplement insurance. For prescription meds I have Humana. Since I’m not 65 yet, the supplement insurances are very limited and expensive. I pay $475.00 a month for it. Humana prescription and Medicare is deducted from my disability check each month.

I’m in the process of applying for grant from LLS. I too wish I could get off meds.

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Corkyrissa

Someone told me my hair might become curly on med. but not so. Lol. I'm losing a lot of hair. Don't know if meds or stress is the cause. .

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doris33
doris33
in reply to Corkyrissa

How strange, mine has developed waves. I always had straight, limp hair. Now looks as if I have much more hair and it has waves. I thought change could be related to thyroid medication I began taking. Never heard of CLL meds affecting hair. Where did you hear this and what meds? Thanks for the information.

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Corkyrissa
Corkyrissa
in reply to doris33

I'm on imbruvica. I think I'm losing hair because I have been very stressed about my daughters health. Thanksgiving my hair was getting full then I learned about my daughters health in the beginning of January and since then hair has become very thin. A person who is a volunteer for the Pan Foundation told me some patients hair get curly. Using Barielle nail polish also. Ridge filler and a camouflage polish .

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doris33
doris33
in reply to Corkyrissa

Just use creme. Find polish of any kind dries out nails. Stress is harmful. Hope things improve. Have lots of stress also.

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doris33
doris33
in reply to MartiP2009

Wish I could get off meds also. Get hair color at a salon and use good quality shampoo and conditioner for dry hair. Use davines mono shampoo and conditioner, which has helped. Have oddly enough found product on Wal-Mart.com much cheaper than in salon. Have used barielle nail creme also.

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MartiP2009
MartiP2009
in reply to doris33

I gave up on coloring my hair a couple of years ago, I didn’t realize that others were having the same issues with pealing finger nails and cuts on the side of the fingers.

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tryandtry

Marti

As you've seen, Imbruvica is an expensive drug. But, its $100+k/yr cost is quickly reduced to about $10k by Medicare Part D. And, depending on your income, PAN, LLS, etc. may help with that. I also found out that J&J (the eventual parent of Imbruvica) will help - again, depending on income. Unlike PAN & LLS, however, they send you the actual pills, instead of a $ subsidy. You just agree not to file a Part D claim. I think it's called something like "J&J Patient Assistance" department.

Gary

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Corkyrissa

It's Johnson and Johnson. You have to pay 4 or 5 % of your yearly salary up front then they will pay for your imbruvica. But through them it's a different pharmacy than Diplomat. The medication through my Aetna part d is $10,000 per month which the copay is around 600.00 per month. I received a grant from PAN association they paid $2800.00 the first month then it will be 600.00. I starting taking imbruvica in August of 2017 and by December the report from Aetna part d reached to 68,000.00. I am so blessed to have received these grants. I'm feeling great only a few issues ,my nails keep pealing ,and my fingers were getting cuts on the sides near the nails. Hurt but I used gloves to wash anything and I'm constantly putting lotion on my hands. I started using o'keeffes's working hands hand cream. Seems to work and using nail polish to strengthen nails. I wish all of you the best of luck with medication and you are all in my prayers love to you all. ❤️😘🙏🏻🙏🏻🙏🏻🙏🏻

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Sam-1
Sam-1
in reply to Corkyrissa

Hi: I am glad IB work for you, about nails side effects you should use biotin 5mg(5000mcg) one a day plus vitamin B complex, both otc. Biotin is good for nails, hair and metabolism.

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MartiP2009

10k = $833 a month still unaffordable for me. I had a grant from PAN waiting on an answer from LLS now.

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Corkyrissa

If PAN grant is not enough to last you the year you can apply to LLS society. I'm so happy that you received your grant. Thank God for these foundations. Good luck and God Bless 😘🙏🏻🙏🏻🙏🏻🙏🏻

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Lola69

I pay nothing for my imbruvica. Free medical care in Canada 🇨🇦 but we are behind the USA for the novelty meds.

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Cllcanada
CllcanadaTop Poster CURE Hero
in reply to Lola69

It's not free.. in Canadian provinces... we and our employers pay for it in advance.. and yes we lag the U.S. and Europe, because it's a small market...

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Lola69
Lola69
in reply to Cllcanada

I’m in Montreal. My employer does not pay for my meds. I go to the pharmacy and pick it up for free. I pay a 400$ deductible to the RAMQ every year when I do my income taxes which helps pay for other meds if I need them. .. I don’t have private medical insurance either.

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Cllcanada
CllcanadaTop Poster CURE Hero
in reply to Lola69

I used to pay $100 a year in Ontario and $6 dispensing fee, but they recently dropped that... every province is different. My current meds are $5200 for twenty days, previous Idelalisib was $5,400 a month...

I’m extraordinarily glad about managed healthcare.🧐

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Lola69
Lola69
in reply to Cllcanada

Imbruvica is around 120 grand a year. ..

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Cllcanada
CllcanadaTop Poster CURE Hero
in reply to Lola69

The new pack will be about ~$146K in the U.S. , but nobody pays that.

arstechnica.com/science/201...

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Lola69
Lola69
in reply to Cllcanada

Absurd prices!!

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