zydelig

[greygirl]

I`m looking to hear from any one who is taking or has taken zydelig with or without rituxan and how`s it going 1st line treatment or more let me know those who I`m already corresponding with need not reply thanks

[MartyR]

Hi GreyGirl, -- Just thought I would mention that I have been on two Idelalisib / zydelig tablets / day since July '13 -- But this is not a first line treatment for me as I was DX in 2001 (Chlorambucil.) - then FCR -- before B+R+I GS Clinical Trial.

Beside minor side effects and a couple of months "off" due to other complications - this P13K inhibitor has kept my CLL @ bay.

Best wishes for your use of this and may your God be with You !

Regards,

Marty

[greygirl in reply to MartyR]

thanks how come your doctor didn`t combine rituxan with zydelig? I see you had fcr also

[Eagle5327]

Hi! I took Zydelig at 300 mg/day in early 2015 as part of a clinical trial and had an awful time with it. Extreme abdominal pain, horrible diarrhea, and a trip to the emergency room after passing out from the pain and dehydration. Liver numbers were extremely high, about 40x normal levels. Neutrophils dropped to 0.0. All treatment was stopped until liver numbers came down, except for a neulasta shot to bring back the neuts. After a couple of months, the trial protocol, Zydelig was restarted at 150 mg/day (or maybe it was 200). I passed out again from the abdominal pain within 24 hours and liver numbers skyrocketed. The Zydelig was then stopped permanently.

I finished all six rounds of BR and got a good partial remission. I feel great. I don't regret participating in the trial but I'm glad to see the backside of Zydelig. When and if I relapse, I'm sure I'll do another trial with something else new.

I gather idelalisib works well for some people; hope you're one of them. But when it's bad, it's bad, based on my experience.

Good luck!

Geoff

[greygirl in reply to Eagle5327]

I wonder why they didn`t try lowest dose after two times bad result? my problem was always skin issues even with fcr and ibrutinib at least with zydelig you can adjust dose and still get results when went down 2 tabs ibrutinib my ALC went up again that`s when doctor said go back to 3 tabs even yhough I was already suffering some mixture of rash,hot skin,joint and swelling on top of hand and bottom and side of feet of course when I did that pain so excruciating I stopped after 2 months of endurance I was done now he wants me to do rituxan AND zydelig after my reaction to rituxan no thank you so that`s why I `m asking why you only get zydelig

[greygirl in reply to Eagle5327]

Geoff, You said you got a partial remission. What will you do if your CLL starts again? I only got about 6 months from FCR before my numbers started up again, ibrutinib next for 2 months had stop got 6 months out of it and now trying it again at one tablet 140 mg and after 4 days the same side effects are starting.

[Eagle5327 in reply to greygirl]

Hi, Greygirl --

Sorry, I didn't see your earlier post until just now. They did lower the levels of Zydelig during my clinical trial to the lowest possible dose but within 24 hours, I passed out from extreme abdominal pain. Diarrhea was totally out of control. My body clearly couldn't handle the drug. It was a first-line therapy for me; I was part of the information set during trials that showed far more negative reactions to the drug in first-line therapies than had been the case in second or third line therapies. Several people died from pneumonosis. Gilead very quickly stopped all trials for Zydelig for first-line therapy and withdrew all its applications for regulatory approvals for previously untreated patients. It's now available only for second-line or later therapies.

Heck if I know what I'll do when I relapse. It's only been a year and a half since ending BR so hopefully it'll be several more years before I have to decide. My hope, just like it was during W&W, is that research advances far enough during my remission to produce more choices than are available today. I'll just see what there is when the time comes and make the best choice I can at the time. I have a fabulous CLL expert, Dr. Bruce Cheson in Washington, DC, so I know I'll have top quality advice when the time comes. Meanwhile, I don't worry about it too much.

Your history and short remission times must surely be a source of great concern for you. I'd probably feel the same way, too. I really hope that you have access to an excellent CLL expert wherever you are. Sounds like a sure hand and high-caliber CLL expertise would be extremely helpful for you.

Take care and best of good luck. Sorry I can't offer much more than heartfelt support and good wishes!

Geoff

[greygirl in reply to Eagle5327]

Hi Geoff, I got a chuckle out of your answer to what you`d do next. They do have some new drugs if one wants to jump into a clinical trial. I know there are experts out there but I really don`t want to travel. I don`t like to be too far from home. Actually my hematologist/ oncologist is in the reserves and he`s always going off to do something I think with the Vets. He does something in Washington DC - I saw his other places he had been before coming to us and I was scheduled three months ago to see him on JAN 20- yeah I guess they forgot about the inauguration-so I saw him 2 weeks before and I was to go back on ibrutinib on my decision starting at 1 tab and working up. If the same extreme side effect with swelling happens again (and it did!) and it doesn`t work out then I have the next thing- zydelig. I do wonder what extraordinary people were on the clinical trials for ibrutinib and how the dose didn`t have the same results as those of us that weren`t in the trials. One size does not fit all, that`s for sure. I have some stress like everyone else but I just accept having any cancer is like playing poker. I am the first in my family with leukemia to make it to 60 years old. I think that`s pretty good -gives the rest of family hope who I believe have a harder time dealing. ok, I hope you stay in remission or at least symptom free as long as possible. As an old friend used to say to me, don`t worry, be happy!

[Eagle5327 in reply to greygirl]

Sounds good. Hope the next best thing works for you, too!

Happy is good. My wife and I bicycled down to the Women's March near the US Capitol this morning and early afternoon. The crowds were unbelievably huge. Very positive on balance and lots of fun. A great day.

Take care and be well. Best of good luck to you!

[Eagle5327]

PS - I should have mentioned that the trial I was in was a Phase III trial for previously untreated patients, BR +/- idelalisib.

Geoff

[Jencarr]

I took Zydelig and had one of the serious adverse effects - pneumonitis. I almost died. I was in the hospital over a week. My joints are still feeling the pain as well as my lungs caused by Zydelig, although after 2 months off the drug, I am finally feeling better.

The FDA sent out an alert in March 2016 about the effects and deaths associated with Zydelig. They stopped 6 trial studies in Europe because of adverse side effects and deaths from pneumonitis. All drug interact with people in a different way. It could be OK for you. Just be careful. For me, it was the most terrifying experience of my life.

[greygirl in reply to Jencarr]

I get you I know for those with first line treatment getting combo is dangerous learned about it on cll program I had pneumonia before I ever got any treatment and almost died also so I`m aware of risk of pneumonitis hope having pneumonia once doesn`t put me at risk I`m more worried about extreme skin reaction since had it with other treatments at least with zydelig dose can be decreased or increased thanks for imput good health to you

[greygirl in reply to Jencarr]

I was going back to these posts again and I was wondering if you were given rituxan with zydelig as no one has mentioned it.

[Cllcanada Top Poster CURE Hero in reply to greygirl]

That's exactly what I'm currently taking... its the Furman/Sharman study protocol... second line. Zydelig (idelalisib) is not used firstline.

cancercare.on.ca/CCO_DrugFo...

~chris

[mnmnewtons]

I have CLL with 17p deletion, TP53 mutation and unmutated IgVH. After 2 months on Ibrutinib, I developed a very severe rash and muscle weakness. I have been on Zydelig (150mg BID) for one year. In the beginning I received Rituxan infusions (375mg x m2) once a week for 4 weeks followed by once a month for 7 months. I receive a monthly inhalation therapy with pentamidine to protect against pneumonia. All is well. Important numbers are obviously not in range but I am functioning in daily life without significant difficulty. I also had a Prevnar 13 pneumonia shot and this year's flu vaccine. This treatment regimen should/could hold me for 1 or 2 more years as I wait for new combination therapies to be approved.

Rick

[greygirl in reply to mnmnewtons]

Thanks Rick. I developed my rash two days later on ibrutinib stopped for 5 days started again and worked up to 3 but developed excruciating pain in hands and feet alternatively he wanted me to stay on 3 but I couldn't but I got some benefit from the 2 month treatment because my AlC went down to 24.000 and other numbers stable. But now after 6 months shot back up to 126.000 but other RBC still normal. I am 14q13 UN MUTATED with more than usual 14q on cells and diagnosed with MGUS. I didn't develope the signs until after FCR. So I am waiting to try ibrutinib again 1 tab to see if can tolerate it after this "rest". If I can go a year or two good but if not zydelig is next as I don't think I'll [qualify for venetoclax yet. After the 7 months are you done with rituxan? Have you had rituxan before and if so you didn't develope a monoclonal protein did you? Will you continue indefinitely on zydelig? Did you have your vaccinations before starting treatment? I hope you can go longer than 2 years. Ok take care

[Cllcanada Top Poster CURE Hero]

I'm currently on Zydelig (idelalisib) and rituxan for 3rd line, and it is going very well after a month.

Its not used first line anymore.

My absolute lymphocyte count [ALC] is about half, Hgb and platelets are rising, some bruising, but very minor, energy level is obviously up

~chris

[greygirl in reply to Cllcanada]

Hi Chris, I failed ibrutinib again. I thought that possibly my body would react differently. I was on 140 cap 25 days and I couldn`t tolerate it. Felt great otherwise. I ended up with several bruises and the same throbbing in hands, knees, feet. Doc told me to stop. In couple weeks have to go on zydelig/rituxan. Looking for another suppression of my neutrophils and risk of infection. I hope I don`t react dermatology wise. Are you still plugging along?

[Cllcanada Top Poster CURE Hero in reply to greygirl]

I have had no problems with Zydelig (idelalisib) and rituxan, one day of bruises on both forearms, but that has been it.

There are a number of prophylactics, but they seem not to cause me any problems...

Be certain that they follow you closely, and the areas to watch for are colitis, pneumotitis, shingles, CMV and PJP fungal pneumonia...

Side effects, if any, tend to come later in the treatment cycle, but for me so far so good...

If you have an questions please PM me...

~chris

[greygirl in reply to Cllcanada]

Thanks, I had pneumonia once for sure, not sure about when I was about 2 years old, asked mom about it said I had pneumonia but then said bronchitis, then got angry and said I don`t know you kids(7 of us) were always sick! So this a concern. Never checked for any viruses(other than HEP B) while on treatment. Off and on digestive issues- worsened on FCR- heartburn on ibrutinib. I`ve never recovered neutrophil % always 1 since FCR except after starting ibrutinib second time went from 1 to 0 , also granulocyte 0 but monocytes high. Did you ever have rituxan more than once? Well, I`ll be EXTRA careful not to go near sick people and wear a mask when feeling vulnerable.

[Cllcanada Top Poster CURE Hero in reply to greygirl]

You must be careful, but it is about being monitored closely, hope fully your neutrophils will return...

So, few days ago, I just had my 17 round of rituxan... 😜

~chris

[greygirl in reply to Cllcanada]

I`m to have 7 rounds-1st & 15th for 2 months after that one a month for 5 months I think not ironed out yet as just found out four days ago.

[wroxham-gb in reply to greygirl]

Hi greygirl

I too am following in Cllcanada footsteps 1 month behind.

I will shortly be posting a update. 3rd retuxinmab thisThursday.

If ever need a word just pm me.

Good luck.

Sue

[greygirl in reply to wroxham-gb]

Thanks, especially if I think I`m having a side effect that seems strange for me and I should get to the hospital-40 min away-always seems to happen in the night! If I develop a high fever I know to go to the hospital but if it is something else have you gone to your PCP or to chemo center?

[wroxham-gb in reply to greygirl]

I am in the UK. We get given a red card

With a number on it for help. It actually puts you straight through to the cancer deDept and manned 24 hours a day. Only for use in emergencies and during treatment. Otherwiseddepending On the severity iI would go to A&e or my own GP or an out of hours practice. It would all depend on what the problem was. I have found that everyone is so helpful. Of course it always happens in the night, it does here too. My advice never hang about, always get things checked if worried.

Best wishes are sent.

Sue

Ps

Cllcanada

[wroxham-gb in reply to wroxham-gb]

I can't seem to edit at present. Chris is the expert.

[Cllcanada Top Poster CURE Hero in reply to wroxham-gb]

We have a 24 hour treatment line that I used during shingles a number of years ago... I also have messaging to both my doctors...

Shingles always occurs on Friday night before a long holiday weekend... damn Zoster virus, has an iPad calendar... 📆

First call is always the treating doctor or clinic, then failing all else ...your GP, for blank stares. 🙄

[wroxham-gb in reply to Cllcanada]

Couldnt agree more Chris. Really pleased your're doing well.

Sue

[greygirl in reply to Cllcanada]

Chris, when you said "first line" I thought you meant first choice of who to call for a scary side effect. Do you have less incidences of serious side effects when one has had more than 2 or 3 treatments ?

[Cllcanada Top Poster CURE Hero in reply to greygirl]

Sorry I changed that to first call...

...

First line means the first time a patient is treated with anything. Idelalisib has had problems in being used firstline, due to side effects.

For some reason, if patients have been treated previously, usually with chemoimmunotherapy, the risk of Zydelig (idelalisib) side effects greatly reduces... nobody seems to know why this happens...

Prophylactics play a role as well, but close monitor is key... hepatotoxicity sneaks up and has no side effects, so running regular liver labs is crucial on this drug

[greygirl in reply to wroxham-gb]

Thanks, in the past when I needed to speak to my oncologist on several occasions the receptionist would tell me the doc would call but never did until next day(I think when they hear its me they roll their eyes,I don't think I call to be a bother) or the nurse would ask what the problem is and would tell me the doc in meeting or with patient or cant find him and the same thing happens no call from doc or nurse says something that I get the feeling she never consulted with him. If this happens again when I go on zydelig, I`m firing them all and it will make it harder for me because the best place to go-Philadelphia is an hour and half away or a similar cancer center is 20 minutes away.

[wroxham-gb in reply to greygirl]

It's second line treatment

For me. I forgot to say that.

Thelast thing you need to do is make life hard.think

Things through before deciding.

Take care.

Sue

[greygirl in reply to wroxham-gb]

Thanks, ITS the juggle of whether it is more risky to do a clinical trial just to get the drug I feel is best for me or to stay out of a trial and all its implications and do the next treatment available for me for my deletion.

[wroxham-gb in reply to greygirl]

Do you have choices near you, trial or not?