zydelig

[greygirl]

Curious question : I was not told at what times to take separate doses. The Specialty Pharmacy said 9-10 hours apart so I am doing 8am and 5pm. Did your doc or trial tell you how far apart to take each tablet?

[Cllcanada Top Poster CURE Hero]

I take it after breakfast and dinner... 9am and 7pm

There is no specific timing according to the drug label...

2.1 Recommended Dosage

The recommended maximum starting dose of Zydelig is 150 mg administered orally twice daily.

Zydelig can be taken with or without food. Tablets should be swallowed whole.

gilead.com/~/media/files/pd...

[Hidden in reply to Cllcanada]

I didn't know this drug was being used. Of course this is an older report fiercepharma.com/regulatory...

[greygirl in reply to Hidden]

Your reference is to frontline use. This is my third treatment and I couldn't tolerate ibrutinib. So far I barely have side effects but my blood test will tell the story as to whether I'm getting anywhere.

[Hidden in reply to greygirl]

I truly hope this works for you!! Will pray for your recovery. My blood work is good, normal after 9 months on Imbruvica, except my platelets are still low but not as low as 9 months ago, and my Immunological blood work is low..........which dr. says is normal for now, but, I just don't feel right, kind of weak all the time, bruise very easily, and get cuts that I don't even remember how I got them, just see my arm or leg bleeding from a small cut. Anyway, I hope the third time is the charm for you!!! fingers crossed!

[greygirl in reply to Hidden]

I had great energy when on ibrutinib but with zydelig I don`t but have short periods of weakness and when on ibrutinib my PLT were first to respond. I have always had below normal PLT otherwise and have short periods like you where I bruise or bleed more quickly. I tell my acupuncturist and she will needle points that support spleen function and blood clotting. I was bruising on inside of thighs(never had before) on ibrutinib when trying treatment second time and I believe it was the allopurinol doing that. Make sure you are not taking any drugs that can increase bleeding. I found all these cancer drugs especially hit my digestive tract. I take food enzymes so whatever I eat I metabolize easier. Try acupuncture for your issues that don`t show up on a blood test. Its worth it especially the Japanese branch is the best(my opinion).

[Hidden in reply to greygirl]

Thanks. I don't take allopurinol, or any other drugs except antibiotics when necessary, or pain pills - and they don't do anything so I stopped taking them and just put up with the pain. I just don't think doctors know much about cancers of the blood and lymph system and they do what they can. I take food enzymes too since I've always had digestive issues even before the cancer, so I knew not to expect them to get better but worse. I'd love to try acupuncture but there are none around here.........I think the closest one is about 2 hours drive away. All we can do I think is try to make ourselves as comfortable and healthy as we can. I have a hospital bed in the family room so I sometimes sleep there for a while and then switch to my bed, I don't want to disturb my husband on nights when I'm in pain or have other issues. The hospital bed does help sometimes, and we watch TV in the family room.

[greygirl in reply to Hidden]

I`m sorry about the pain it makes our life even harder. My acupuncturist has actually come to my house on occasion, you must be in an isolated area. But sometimes acupuncturists don`t advertise and I found mine by googling herbalists/acupuncture and you put in where you live or zip code or put in map of states with acupuncture and also you`d be surprised-sometimes they may be affiliated with a chiropractor or massage place. Usually pain is associated in Chinese medicine as "painful obstruction" the lack of energy moving to an area. Even though Chinese medicine doesn`t associate with the literal organs in DX you can google TCM and the particular area where the pain is and get formulas that will alleviate the issue. I can`t believe how many acupuncture schools and clinics there are in AZ, NM. UT CA ! It is something I consider if I relocate to another area. I agree about sleeping arrangements, since my husband is ALWAYS cold and I am MOSTLY warm we need single beds to survive! Plus he has vivid dreams and thrashes around and talks in his sleep and I am always moving around and waking up to go to the bathroom that we gave up sleeping together!! He just retired now so we practically look at each other everyday anyway. I definitely am glad to be done with ibrutinib.

[Hidden in reply to greygirl]

Thanks for your reply. The imbruvica did help me, no doubt about it, from nearly dead last March with a hemoglobin of 2.8 and a white count of 300,000, platelets very very low to normal now, so guess I can't complain too much, just said to know it doesn't put you into remission like I assumed it would, plus the side effects of pain in muscles, joints, etc. I didn't know how long a platelet transfusion lasts, I had one last March, but the oncologist said they only last for 3 days, so.......that's out. He said he only gave me one because I needed surgery at bedside and he was afraid of bleeding. I'll look for an accupuncturist through google, see what's around here. Yes, isolated area.

[greygirl in reply to Hidden]

Wow Blue, you beat my HGB record!! My HGB was 3.8 and WBC 490.000. My oncologist was shaking as I sat calmly at his desk. The only thing that let me know something was wrong was I was out of breath on exertion and I was bleeding in my eyes. He wanted me to start FCR the NEXT day and I objected as I didn`t feel mentally prepared for it. My husband was to start vacation from his job six days later. He said if I didn`t get treated right away I`d be dead by Christmas(was Sept.) I said will 6 days really matter? He said I guess not. I complicated the case more by telling him I wouldn`t accept blood products as part of my treatment and he started ferociously typing into his computer- it amused me and I said don`t worry doctor(I should have been the worried one) I said why don`t you give me aranesp(EPO) shot before starting treatment? He liked that idea. Also I requested my first treatment in hospital because I felt it would be safer and better and it was. My reaction to Rituxan was bad but my HGB stayed stable and slowly rose and I never needed another shot plus I had a great nurse who stayed with me all day and one of the evenings I had 2 nurses and my husband(he slept every night on a day bed) watching a football game on TV. I couldn`t sleep anyway. Yeah, like you I was disillusioned about remission. I thought I`d walk away and go on with my life. Wrong. When ibrutinib first came out they touted it as a cure. Maybe I would have had a longer time without treatment if I could have stayed on ibrutinib. My FISH tests said I was mutated but my BMB said otherwise so that`s why I didn`t last on FCR. But I`m 13q14 with an IVIG family 69 so put me in an intermediate class and will have a little more extension on time to treatment. Do you have a defect in your HGB that it doesn`t improve? Mine went down to 10 on ibrutinib but by second month normal. I use to take a product to boost my blood count it was Energizing Iron from Enzymatic Therapy. If you`re not a vegetarian it`s made from calf liver and high in iron B12. My dad had CLL and used eat a lot of liver-yuk can`t stand taste so did capsules. Maybe you can ask about EPO shot,. also one for PLT. I have to work on kidney function as my GFR isn't so good. The reaction to Rituxan again and all the benadryl and steroids didn`t help driving it down further. I had to put acupuncture off last week because of bad weather and badly need it so going on Monday. Already in only 9 days my granulocyte count is 1.5 so I have to be careful. I hope with time your PLT rise-its amazing how we can survive on less-our bodies are able to compensate without any help. Take care let me know how things go. Andria

[Hidden in reply to greygirl]

Didn't even know what hemoglobin was until I almost didn't have any!! When I went into the hospital in Jan last year, I had 3 blood transfusions, Feb. I had another 4, and March, 3 more, plus a platelet transfusion. Dr. said they thought I wouldn't survive, but I really and truly didn't feel that bad. Just that the bottoms of my legs hurt and I couldn't walk very far, but I got my housecleaning done, dishes, cooking, even managed to hang my laundry on the clothesline (never wanted a dryer) with a chair I put outside to rest on when my legs seemed like they'd give out. Anyway, when I talked to my GP, a woman, who is a really down to earth Dr. and laughs with you and gives you a hug and tells you you're tough, you'll make it just fine, when I told her what my hemoglobin count was, she said........WOW, do you know if I sat here and cut my arm and let is blood out for an hour my hemoglobin wouldn't be that low! I laughed and so did she, but she said, you're tough - you were hanging wash on the line with that!! Anyway, we both have a weird sense of humor and we both laughed about it. I'm sure my oncologist didn't find it funny at all, and now that I know they thought I wouldn't make it......well, I still think it's funny! Maybe even helps if they don't scare you to death. I guess if we keep our sense of humor that will help a lot, or just put it into perspective that everybody dies sooner or later. I'm already older than my parents were when they died. Nice to talk with you and please get better!!!

[wroxham-gb]

Me too.9am and 9pm.

Sue

[mnmnewtons]

My directions indicated there is a large window for taking the doses which are ideally separated by about 10 hours. I have forgotten and taken them a few hours less or more (that is ok with the directions I read) with no adverse effects.

Rick

[R-16728]

My instruction were to have at least 6 hours between pills. I've actually missed a couple of times over the years but suffered no consequences. If you do happen to forget, just take up where you left off, don't try to fit the lost one in.

I'm very curious to know whether I'm now totally dependent on this drug. My next meeting with an oncologist is next month and I'm going to ask about "testing" a gap in the ingestion to see what happens to my blood counts. I've been sticking very closely to a "Eat for Cancer" diet and I'd like to see if it has made a difference.

[starsafta]

I was in one of the frontline Idelalisib trials that was ultimately closed when it was determined there were more side effects for patients not previously treated. No one died of infection at my facility, as they aggressively nipped any infections in the bud, and no one died as happened in some of the other sites. Idelalisib continues to be approved for relapsed/refractory patients who have received previous treatment.

We were told that Idelalisib stays in our body for about 8.5 hours, and that we should take it 12 hours apart to spread it out as evenly as possible through a 24 hour period. My phone alarm went off every day at 10 a.m. and 10 p.m. We were also told to drink at least a glass of water with each pill to ensure its flowing down to the stomach as quickly as possible.

Just for the record, I had no side effects, nodes melted away, and I felt great. On the other hand, the drug stopped working for me after about 15 months, pretty typical for those of us who are unmutated.

[greygirl in reply to starsafta]

Thanks for the info I take it at 8am and 6pm now. Most of my largest nodes were in my abdomen and I always looked 6 months pregnant when not on treatment. I have been only on it for 8 days and besides weakness and a feeling of queasiness in my stomach I haven`t had anything major like I had on ibrutinib and the reaction to rituxan. My stomach is practically flat, loss some weight so I can get back into some of my clothes. Unfortunately I am un mutated but 13q14 with MGUS. That's about what doc said- good year to 15 months but never know. I worry my high lymphocyte count will hang around longer than I wish but the rituxan maybe help if my cells haven`t found away around it.

[greygirl in reply to starsafta]

Boy, I`m realizing that IF I`m probably going to go about 15 months and then I so hope I have a nice "grace period" of NO treatment before the next one like I had with FCR (about 1 year) and the short two months on ibrutinib I got 5 months. I said to my husband Its not too encouraging is it? How do I plan a future? ok enough. Did you have to go on treatment right away or like me have a "grace period"?

[starsafta in reply to greygirl]

We are all different in our reactions to drugs, how they affect our bodies, how long they are effective, and whether our numbers stay stable for a while or begin to shift downward. One person's path will not reflect the path of others.

My philosophy is to have faith and trust in the treatment or hiatus of the moment, hoping for the best. If things change, there is nothing to do but shift gears and plan for the next step.

Until the drug that cures is developed, I am aware that I am buying time with each treatment, hoping there will be another new drug in the pipeline to pick up the slack when needed. May those seeking a cure continue their passionate and compassionate search.

I find myself grateful for my mother's mantra as I was growing up: "Everything is attitude." It gets me through whatever.

[starsafta]

Wondering if you have some objection to taking it every 12 hours, which would maintain more consistency in your body. By altering that schedule, you are leaving longer periods without exposure to the drug part of each day.

[Cllcanada Top Poster CURE Hero in reply to starsafta]

Idelalisib has a biological half like of 8.2 hours and an onset action of 1.5 hours...

So, no matter how you space the doses there will be overlap between them...

Its no big deal...

en.m.wikipedia.org/wiki/Ide...

~chris

[greygirl in reply to starsafta]

I figured it out like Chris said there would be a gap anyway. I would rather give my kidneys a rest as their not so great anyway. Thanks for the idea.