planning to start Imbruvica treatment - CLL Support

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planning to start Imbruvica treatment

tropicsurvivor profile image
7 Replies

Good day to everybody,

I am a CLL survivor.

after two year since FR chemotherapy, my doctor is planning to start Imbruvica, since my lymph node are still inflamed, my plateles keeps going down (around 40-44 k electronic counting) , and WBC are getting higher and higher. (around 20 K, increasing steady month to month).

Is any alternative to Imbruvica, since this medicine is quite expensive, and my Insurance will not cover in full.

Is any Site/ place where I can buy / Order via Internet at cheaper price ?

I am resident of large Caribbean Island.

Can anybody give any advise if my doctor is taking the right course of action.

God bless you all , and thanks a lot .

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7 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

Imbruvica (ibrutinib) would be the common next treatment in the U.S. The drug Imbruvica (ibrutinib) is highly controlled, since it is a cancer drug, and is simply unavailable anywhere else.

There is some payment relieve through the company, but without knowing your specifics its impossible to recommend anything.

If you are in a U,S. island that might be different...

If you can tell us which island it would help perhaps...

~chris

Spacee profile image
Spacee in reply toCllcanada

Her profile says Dominican Republic. That’s about all the help I can give since I don’t know more!!!

Linda

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toSpacee

Thanks Linda, I couldn't access it...

I also have no idea... about the health system there... might be better to travel to Puerto Rico for treatment, since it is a U.S. territory.

~chris

Spacee profile image
Spacee in reply toCllcanada

I once knew a woman (online) who lived in the DR but she was an American Citizen. If this woman is not an American Citizen, going to Puerto Rico won’t be of help. I am guessing that the DR has their own health care system. Perhaps, she was hoping that a generic was available, which is not the case.

Linda

chemosuxs profile image
chemosuxs

the right course of action is ty o try something to see if it works...if not try something else...at least that seems to be my doctors course of action. i was first diagnosed 6-7 years ago and was on rituxan and 2 other intravenous medications. it was good for 2 1/2 years s but my levels went up and we did the same treatment again. this was good for 2 1/2 years but again the levels came up. about 15 months ago I started imbruvica. my doctor heard great things about it (so did a few people I knew) but unfortunately i ended up with a low fever for 2 weeks that wouldn't go away. final steroids knock it out. the imbruvica was working well up to that point. needless to say, I was off the imbruvica last summer. i started zydelig 1 tab twice a day about a month ago plus rituxin ever 2 weeks. i think i only have one more rituxin (4 treatments) and then continue the zydelig. i have a lot of aches with imbruvic and 3-4 bloody noses a day but not everyone gets the side effects. i was fine living with what i had up to the fever. good luck and let us know how you do...

newyork8 profile image
newyork8

Ibruvica makes sense. Call the drug manufacturer to see if they can help. Gazyva may help you but it's no cheaper but only 6 months treatment. If you get to Miami Univ. of Miami Sylvester Cancer Center has a few CLL docs.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

What is your ALC (absolute lymphocyte count)? 20,000 is not very high for a WBC. Are you having other symptoms or issues with your counts besides the platelets? Your post makes me wonder whether your issue is with the platelets (ITP) which would usually be treated differently than the CLL.

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