Curious about the recent change in dosage availability and pill form only. Is it about$?
Imbruvica changes: Curious about the recent... - CLL Support
Imbruvica changes
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andrew1
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Just found out about this myself. I called Diplomat Pharm. to see about my Rx and they told me about the change, 1 pill a day, a tablet with is 420 mg.. My new Rx won't be shipped until they get approval from my insurance co. She told me the capsules will no longer be made. Which makes me wonder, how would a doctor reduce the dosage to 210 or less. They used to reduce it to 2 pills or even 1 pill, but .......... and sometimes if you needed to take a medication that increased the dosage of Imbruvica in your bloodstream they'd tell you to only take 1 imbruvica for that day. Haven't seen my Dr. about it, and don't have an appt. until May. Not happy about this change though, although I know I have to keep taking it as long as my insurance co. approves it. I found these links imbruvica.com/one-pill-daily and imbruvica.com/docs/librarie...
shazie in reply to
Hi Bluenet. That is the point that I was trying make when Ronin first posted this a week ago. Is it about the money. You bit it is. Think about it, what would you do with 420 pills when you doctor reduces your dosage to 280 or 140? You have already payed for them and you can’t return them
in reply to shazie
I'm worried about that too! And you're right, I'm sure my insurance wouldn't pay for another month of the same drug with the dosage reduced. Don't even know if my insurance will OK the Rx this month. The Pharmacy is contacting my insurance but it may take a few days..........which is also nuts.........a few days for what???
CllcanadaTop Poster CURE Hero
Its about patient compliance on dosing... as well... now to get a lower dose, for whatever reason, you will need a prescription change, so the doctor knows who is doing what.
The dose is important, certainly for a year or two...
~chris
I understand everyone's concern about dosage, but on the positive side won't taking one pill, and from what I understand the day of the week will be on the packaging, help us to know if we took the it. I think that's a good thing. C.
The day of the week is not on it....you have to write in the date yourself....so you can keep track....
cllady01Former Volunteer
The dr. may know who is doing what.
But the patient gets more cost and the Dr. has no way of knowing ahead of time that a patient will benefit from a lowering of dosage.
In fact, it sounds as though there may not be ability to lower dosage at all if Diplomat Pharm is correct in its statement that there will be no more lower dosages?
Even if there are lower dosages produced, the patient who needs the lowered dosage is the one who sees the wasted meds and the depleted wallet.
Ask your hemo/onco about the situation and relate your hesitancy to beginning a med that may be lifetime without assurance of ways to handle changes that might come along.
Diploma needs to do their homework...
There will be lower doses, but all the same price... except for a 70mg capsule.
They are nicely colour coded boxes for 140 mg, 280 mg, 420mg and 560mg.
One price... dose is no longer a factor...
View this patient guide, the lower doses are shown and discussed
imbruvica.com/docs/librarie...
Chris, I am just wondering if with capsules they charged differently? Did it cost the same for three, two or one capsule? I never paid any attention to what they charged my insurance. I had to reduce my dosage to two for couple of months and I don’t remember what they charged.
If before, they charged differently for different dosage then the answer would be very clear why they made the change.
I don't know in the U.S. but in Ontario it was based on dose. I think it is the same, since this is a major change to one price system, and the new format will be a different drug identification number.
Certainly Abbvie will get a windfall.. even the short month of 28 rather than 30 pills a month.. would keep me in Häagen Daz daze...
Acalabrutinib is coming in the back door soon too...
~chris
I am in the US and was reduced from 3 capsules to one. My total cost ( before insurance) was reduced by about 1/3. I have confirmed with my specialty pharmacy that now my total cost (before insurance) will be about 3 x higher as I will now pay the same as if I were taking 420 mg
Good news for Abbie, not so good for Medicare and my insurer
Chris mentioned Acalabrutinib will hopefully soon be available in US. I wonder what would happen and how much Acalabrutinib will cost?
in reply to shazie
Ha! Have no idea, but in the US you can bet it'll be high, like everything else, we in the US pay full price while the rest of the world gets the same meds much cheaper.
Just a thought, and I don't know if this would work, but can the new ones be cut in half should one need a lower dosage?
No......they tell us specifically you CANNOT cut these tablets or crush them etc....
These pills are coated in a vegetable polymer coating that dissolves slowly and allows the pill to open in the duodenum or lower stomach.
Its coated for a reason, and defeating that by cutting or chewing etc. could be harmful.
~chris
Thanks, Chris (the knowledgeable one). Appreciate your answer. I just posted that Imbruvica blister packs will come in 140 to 560 mg's per Diplomat pharmacy, so no reason to half them.
in reply to Cllcanada
Any news on acalabrutinib in Canada?
There is a clinical trial... I know Ottawa is running it.
We lag the FDA and EMA approvals, then it takes 18 months to fund it... so perhaps 3 years away...
May not get it in Canada at all, it has happened a few times in the past.. the market is simply too small.
in reply to Cllcanada
trial in Ottawa sounds good. Do you have info? thanks Chris
in reply to Cllcanada
lets hope they get it approved for non CLL first in Canada.
We could ask for off label
Thanks, Kathy.
in reply to kathymac52
Ha! How did I already know that!
in reply to ladyprescott
I thought of that too, but I think I know the answer in advance............No. (even if you actually can, they'll say no.)
in reply to cllady01
You are so right. I intend to ask my oncologist about this at my next appt. - lowering dosage if needed, how would that work with these new pills, etc. etc. Also, as I've said, there are Rx meds that I can take, but only if I take one capsule for a day or two while on the medication. That certainly won't work with this one dose Imbruvica. I wish they'd let well enough alone!!!!
I have one not opended bottle of Imbruvica with 120 x 140 mg capsules I probably wont need due to side effects.
Doctor will tell me shortly and will most probably stop further treatment due to resistance and my bad skin rash.
I would be happy to find someone, who needs them and wants to have them, for a resonable compensation.
I do not know wheater this is this a decent question to ask. Please let me know ?
I just want to make a fair contribution to help someone in need.
I would suggest it might be a good idea to donate them to the SPCA or a veterinarian clinic of your choice.
I recently did this with 90 ibrutinib caps I had... they were greatly appreciated.
~chris
I believe it is illegal to donate prescriptions to someone else, or even to your doctor, in the US anyway. I'm sure that it is illegal to sell or buy them. Vets can accept donations of meds. I assume the Ibrutinib would be for cancer patients, so you might want to ask at a speciality clinic that treats cancer in dogs and cats.
These three studies sought to understand the impact of food on the relative bioavailability of oral ibrutinib (420 and 560 mg) by evaluating the effect of three meal times and a fasting state. Food can change the bioavailability of a drug and thus can have clinical consequences. Specifically, food effects on bioavailability are greatest when a drug is administered within a short time period in relation to a meal. Some of the ways food affects bioavailability are through delayed gastric emptying, changes in gastrointestinal pH, or improved solubility.
ncbi.nlm.nih.gov/pmc/articl...
GMa27 in reply to
Confusing...are they saying taking pill without food is 60% less effective? Then taking with food would be recommended?
What I read was "No food restrictions were necessary in taking Imbrutinib" since repeated drug intake taken in fasted conditions is unlikely.
There is a growing list of restricted foods, grapefruit in any form, seville oranges aka bitter oranges in marmalade, star fruit, pomegranate juice, bergamont, and St. John's Wort
Always check the labels on juices, many contain grapefruit .
Tom has a good take on this
cllsociety.org/2017/09/thin...
~chris
in reply to Cllcanada
How about food timing? conflicting reports
Here is postmarketing info from ibrutinib label
Effect of Food
The administration of IMBRUVICA with a high-fat and high-calorie meal (800 calories to 1,000 calories with approximately 50% of total caloric content of the meal from fat) increased ibrutinib Cmax by 2- to 4-fold and AUC by approximately 2-fold, compared with administration of ibrutinib after overnight fasting.
We were informed about the restricted foods during our orientation meeting at our clinci..........but I meant that you could eat right after you took the pill...........that is what I thought GMa27 was asking. Even Tom's article reiterated that idea.
in reply to GMa27
i was asking myself same questions
Does your blood work show levels of inflammatory markers?
Cytokines can cause "allergic reactions" manifesting as uticaria (rash). Natural anti inflammatory agents like curcumin with piperine and EGCG ( not taken within two hours of each other as they neutralize each other) reduce most side effects. You also need to drink nearly double the amount of water while taking imbrutinib which will help reduce serum values and help with reducing reaction severity.
When taken with food, imbrutinib can be 25x higher absorption than without. CYP inhibitors such as grapefruit, antifungal drugs and others can cause reactions to be quite severe. Have your doctor (or pharmacist) review your meds and check for CYP inhibitors or you can check yourself (this can be rather tedious).
A friend in Ca was having reactions as his white count went towards normal and he reduced his dosage himself by splitting up the caps himself with gel caps purchased locally. Or he just mixed half (or less) a cap with honey. This is probably why they are going to tablets which would make it more difficult to reduce dosage accurately. He also used cannibis (or CBD) and curcumin to help with the negative side effects. I would recommend to get your normal script and make your own choices. Doctors "practice", take control of your fight. Eat lots of britely colored (high in polyphenols) veggies steamed lightly, cut out all sugars (they feed the cancer), eat a low glycemic (low sugars, starches) diet, no rice, no potatoes and if you have to eat any grains limit to less 4 oz of whole only, not bread. I am currently on an Atkins type diet and have had B-CLL since 2006. 11q, high ZAP-70, mutated IG.
My problem is I have gastroparesis since June. Digestive condition. No cure. My diet guidelines are toxic to cancer so I have a huge problem. Low fat, no fiber, no fake sugar (meaning sugarless products) I must eat every 2-3 hours. Must include protein and starch. Limited veggies allowed. Nothing fried, nothing cooked with oil ( just some sprayed from can). No grain breads...only white or Italian. Lots of pasta, baked potatoes, homemade mashed.... Lost 15 lbs last June.... Took till now to gain 4! So how ironic I get a disease that is harmful to my CLL.
Well, at least you're gaining weight. The main determining survival factor in end stages is "lean body mass" loss. Cancer's metabolism is ABNORMAL (using an anaerobic process) sugar based, the mitochondria send messages to the body to destroy muscle tissue through a "ghrelin" cycle. Body builders use (I do too) HMB which interrupts this cancer induced cycle and maintain lean body mass by sort of fighting the cancers messengers. I would list a reference but I have been warned about "non CLL" refs. All late stage wasting diseases (I.e. Alzheimer's, AIDS etc..) go into this cycle.
Keep up the fight!
Gma27 -
I have been diagnosed with gastroparesis, too. Mine may not be as bad as yours. I believe that it depends on how much nerve damage one has.
I had constant bloating and nausea, but no emesis. I was first diagnosed as having IBS. I think mine goes back to childhood - I was always a picky eater. But I think it got worse as an adult when I challenged myself to try foods that caused trouble, and when the doctor said I should be on a high fiber diet for large bowel trouble.
I did the FODMAP diet challenge with a dietitian recommended by my gastroenterologist, and eliminated several sources of fiber, as well as sugar alcohols (any ingredient ending in -ol, like mannitol, xylitol, and sorbitol). Some types of fiber get fermented by bacteria and fungi in the small intestine, and cause bloating and belching. I had no trouble with lactose or fructose. It took several months for it all to settle down. I've had such trouble with "health foods" that have sugar alcohols, chicory root, or inulin.
monashfodmap.com/i-have-ibs...
The FODMAP challenge starts out with a diet similar to what you're on now - low residue, low fiber, high protein. They do allow fats, but if that gives you trouble, do without. But a food log really needs to be tracked by a specialist. You might find that some things are tolerated better in the morning than later in the day.
I hope you can find a dietitian that can work on expanding your diet. Just a few additional foods can make such a difference for quality of life.
Best wishes,
=seymour=
Hello, Rob,
I am interested in how you have chosen to live with this disease.
Being new at this, I have a lot of questions for you. Here goes: Who have you contacted for advice on dosing of supplements? What about how they are absorbed? (Some drugs should not be tampered with due to the “built-in” delivery system provided by the capsules/coating.) How do you get the supplements? How did you decide on your diet/nutritional choices? Are onco-nutitionists who work with pharmacists and research CLL specialists and other docs to ensure efficacy and safety? If yes, who are they? Is there information that addresses all sub-types and people who have co-morbidities? How does the cost of this lifestyle (consults, supplements and diet) compare to a more conventional approach? In what general area do you live?
As you can see, lots of questions. Although I am generally in the evidence-based (not anecdotal) information, I would consider lifestyle changes that contribute to our general well-being, (possibly) help us fight CLL, NOT cause harm, are affordable, managable/easy with which to comply and accessible.
Thanks.
Heather
When I went to MD Anderson for my initial consultation, I found I knew more about what actually works in fighting leukemia than they were using or even considering treatment wise. I had spent the previous two months poring over research from Mayo, MDAnderson and others (around 1500 papers, I speed read at 25k),.
Since then I have used a multidisciplinary approach with a view to statistical commonality- inflammatory cytokines and mitochondrial aberration.
I recently lost my eight years of compilation of research papers, around 2000 that were key.
These papers are a steep learning curve for someone whom does not like reading (but for us likely not as we are motivated).
Ready to read?
Update:
in answer to your questions, go to
my latest post:
evidence-used-for-my-decisi...
Yes, I am. I am just finishing up a master’s degree with some writing left to do, so in depth reading/research may have to wait until next month....
Just so I don't plug this thread, I have asked AussieNeil to set up a separate thread. If anyone else would like to join us, by all means. I am also ignorant, I hope to get more out of this than I contribute..
Two papers that have piqued my interest-
"The most common type of leukemia in the Western world is CLL" (note the emphasis on western)
ncbi.nlm.nih.gov/pmc/articl...
CLL 10 times higher in western countries - One of many, many papers...
ncbi.nlm.nih.gov/pmc/articl...
Along with this you can look up the two Mayo studies one involving EGCG in vivo efficacy against CLL and I believe two on curcumin.
Just for grins read "the China study".
"The China study" while it may not mention CLL by name, the study is inclusive as common sense supports the research in the previous paper.
CLL is actually classified as a subtype of Non-Hodgkin's lymphoma... with a leukemia 'like' presentation.. SLL for the most part is more lymphoma.
The new guidelines state...
The World Health Organization (WHO) classification of hematopoietic neoplasias describes CLL as leukemic, lymphocytic lymphoma, being only distinguishable from SLL (small lymphocytic lymphoma) by its leukemic manifestation. In the WHO classification, CLL, by definition, is always a disease of neoplastic B-cells, while the entity formerly described as T-CLL is now called T-cell prolymphocytic leukemia (T-PLL).
~chris
Capsules are still be produced and sold.
Until May 8th... yes in the U.S.... then its a single tablet.
Actually..no. I am in a trial at Mayo Clinic and their contract calls for capsules and Mayo indicated to me it will not change.
I'm talking about in the clinic... May 8th, the product changes as does the drug reference number...
Certainly a clinical trial will stay with the capsules.
There could be unforeseen changes, in the tablets... who knows...
After speaking with the pharmacist at Diplomat, he explained that (without any form of insurance,) the cost of 30 tablets of the 420 mg Ibrutinib will be the same as 30 tablets of the 70 mg, i.e., $14,000.
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