New drug approved...Zydelig (idelalisib) for CLL, Follicular, and SLL

Super news, Sue. I hope it is available for your use, and will be curative for you.

When I was helping my friend who later died of prostate over the last few years, I witnessed several news drugs hitting the market for his late stage 4 disease.  While none of them were curative, they extended his life a lot.  He lived 13 years with the disease, and over 11 of those years were great, essentially symptom free.

The medical community is making progress.

max

Sounds so promising! I printed out the info too so my Onc can see this!!!

I was wondering if anyone has used this new drug. I'm going to be using this and and infusion along with it and was wondering if anyone has . It is my 3rd chemo since 2006 and hoping this is going to do the trick. I know it is a pill taken twice a day and My Oncologist said they have used it even though it has only been approved a few months ago. I've been diagnosed with low grade , follicular B-Cell NHL. I know everyone is different but just curious . Thanks in advance. 

Rena

givingrace said:

Hi,
I have just been offered

Hi,

I have just been offered this new drug vs. Bendamustine and rituxen. Just got call from oncologist tonight and now my head is really spinning.  Idk what to do.

GG

I don't know if you have read any of our back postings but my husband relapsed from Mantle Cell in Feb of this year.  A new drug, Ibrutinib, had just been released in Nov '13 for relapsed MCL only and is still in trials for other B cell lymphomas (as far as I know).  I am sure Zydelig is similar but for Follicular and others.  Bill would have been in remission for 2 yrs when his MCL came back.  He had a cluster of lymph nodes near his abdomen and 2 more near his side.  He started Ibrutinib in March and his ct scan in May showed all the lymph nodes almost gone.  We just saw his doctor today and his labs are great, so the new drug is doing it's job.  It's a new way of thinking in the research field and as time goes by there will be more and more of these target drugs for different cancers.  It is not considered chemo.  It only targets the cancer cell thus very few if any side effects.  It sounds like your doctors are on top of things.  I would say it is worth a try.  Without Bill's drug, MCL had nothing but temporary fixes and downhill from there.  For him he takes 4 pills a day and will have to be on them for the rest of his life, but he feels great and no side effects.  We are very fortunate.  The only drawback is that his drug is very expensive, almost $12.000/mo.  He is on Medicare tho and our measly $12/mo supplement drug plan pays 80 % and the other 20% is funded, so we pay nothing.  Check that all out, talk to the finance dept of your cancer center and get them in the loop for assistance.  Even if you are not on medicare, I am sure they know that the patients need complete funding.  I am so hoping Zydelig will do the job for you and so happy it is being offered.  I would consider this a real blessing.

My best, Becky 

givingrace said:

Thanks for the info. I have

Thanks for the info. I have jumped around in old posts so I'm sure I missed alot.The problem is I might be given a placebo.  Rituxin will be given as well no matter what but for me I have to know I'm getting it. I will jump on it if there wasn't a possibility of placebo. 

I will call the researcher tomorrow morning and see if they can do eather or.

Thanks Becky.  

GG~

GG,

I have been in two professional, nationwide double-blind drug tests at various times (neither was for chemo, but one of them was for a proposed neuropathy treatment, which was proven at the end to be worthless). Both were run by bigshot manufactures in the pharmacuticals industry -- names you would instantly recognize.

With both, I found my contact person totally unwilling to discuss whether I had gotten a placebo or not.  Actually I found both teams (who were in different cities, and representing different health care networks) to be pretty uncooperative.  Both told me that after the nationwide tests were over, I could learn later whether I had received the actual drug, by requesting the information in writing from the test administrator.  Understand clearly: I could find this out not after I finished my run with the drug, but after everyone was finished, and the results had been published.  And, my contact could offer no idea when that might be.   I felt quite used and believe that that was a pretty accurate assessment of how they viewed "patients." 

Both times I was also told about "free lab work." What they did not say at the time was that I was never privy to what the lab results said.

I was also told that "medical staff are on call if you should have questions or side-effects."  Well, I had a pretty serious and scary side effect with one, and called the number on a Friday afternoon.  They "promptly" got back to me on Monday. In other words, no one was monitoring the phone over the entire weekend.

I am no fan of clinical trials, but things may be differnt for patients in the realm of oncolgy, and the treatment might be a bit more dignified.

The only way I would do another test would be after asking a lot of specific questions regarding all of the issues I mentioned here. Who do I call ?  Where are they located ? (preferrably not Indonesia). How soon do they call back ? When and how do I get results ? And so on....

max

.

illead said:

Zydelig

If you read Sue's post that starts this thread, it indicates that zydelig has been released from trials.  I don't understand why a placebo would be used.  Make sure your doctors have their facts straight.  It may be tho that it has only been released for a few types and is on an individual basis whether it can used for others.  Why in the world would anyone be given a placebo and nothing else to treat their relapsed cancer?  That makes no sense!  Bill's Ibrutinib dealings have all been handled in a very serious and dignified manner as I am sure Zydelig is done.

Becky

I am just trying to catch up on today already.Lol.

I was up till 3 am researching and I'm almost certain I am not going to do trial. I have several reasons and will write more on it in a few hours.But I feel confident and just so thankful for all of your feedback.  I am so happy you all are here with me. 

God bless

~GG~

Max Former Hodgkins Stage 3 said:

Certainly

Becky I'm pretty sure you are correct about this; it would be unimaginable to give a cancer patient a placebo.

My cancer center has a fairly large research wing, where new clinical trials are run, and I am reasonably certain that they administer only the actual drug under testing.  I discussed my trial experiences only because grace said that it was a possibiliity at her site, which most likely was some incorrect info that had been provided to her.

max

It just doesn't sound right about the the placebo and I totally understand what you were saying.

Becky

unknown said:

Blind tests

My understanding is that use of placebo testing for new cancer drugs is very common in some countries, Italy and Japan in particular. 

Sad then.  They could give half the experimental drug and half the established chemo, but to simply give nothing seems disguisting. I am wondering if perhaps some cheapwad organizations in the US are not doing this ?  It is not the sort of thing a company would reaily admit to.

Max Former Hodgkins Stage 3 said:

Sad then.  

Sad then.  They could give half the experimental drug and half the established chemo, but to simply give nothing seems disguisting. I am wondering if perhaps some cheapwad organizations in the US are not doing this ?  It is not the sort of thing a company would reaily admit to.

I don't know what took Zydelig off the table but if the other two were your choices, I would say you made the right decision.  Who in their right mind would chance taking a placebo?  Bendamustine is a great drug also and being used more and more and you always have Zydelig to fall back on.  So again, we wish you the best, I have confidence you will do well.

Becky

pamperedwife said:

Zydelig

I was wondering if anyone has used this new drug. I'm going to be using this and and infusion along with it and was wondering if anyone has . It is my 3rd chemo since 2006 and hoping this is going to do the trick. I know it is a pill taken twice a day and My Oncologist said they have used it even though it has only been approved a few months ago. I've been diagnosed with low grade , follicular B-Cell NHL. I know everyone is different but just curious . Thanks in advance. 

 

Rena

I see this is an old post but thought I'd answer anyway. I have been on zydelig for seven weeks now. My diagnosis is the same of yours, low grade 1-2 stage 4 follicular NHL.

Been ill since 2011. I did Bendo and RItuxin, a clinical trial, R-CHop and a auto transplant, relapsed every time. I was very fatigued with drenching noight sweatss and the pet - scan showed spreading lymphoma when I convinced the doc I was ready for the zydelig.  The day I started I could barely get off the couch to go to the lymphoma support group I was leading.

After two weeks of Zydelig my energy started coming back. I started walking again, five miles a day. The night sweats stopped. I have had NO side effects. I count myself lucky every day. I don't know how long this will last but I enjoy every day I can function. I call it my "magic pill" . My Weill Cornell (I'm visiting family in New York) doctor said he has a patient on Zydelig three years and doing well. I would love to hear from others on this drug to know how htey did.