Ok guys I have a dilemma. I saw my hematologist today and I have to make a decision. I’ve been on watch and wait since my last chemo (FC) treatment 8 years ago. I was deathly allergic to Rituxin so obviously I couldn’t take it. Now with fatigue and huge lymph nodes in my neck it’s time once again to do something. We are still waiting on one other test from fish analysis test. I have deletion 13 which is good so if the other test is good , she gave me the options of FC again, Copiktra or a pill I will have to take every day for the rest of my life. I have no idea which way to go. I am 50 and I am concerned about taking a pill for the rest of my life that possibly would stop working (then what choice would I have)? I’m really confused and need some input.
Thank you all in advance for your help!!
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DRADCLIFF
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I was on a similar PI3K drug Zydelig (idelalisib) combined with Rituxan, and for me it was great... you need a lot of prophylactic meds initially and the same holds true for Duvelisib, aside from late onset colitis, it was just fine... and duvelisib appears in clinical trials to be even better.
Clearly the rituxan Chinese hamsters and you are not friends, but ask about Gazyva, its superior to rituxan, in most ways... and no mouse bits in it.. its fully human, Type 2 monoclonal antibody.
Yes rodents... Chinese hamsters, mice, rats and so on....no beavers yet...
Rituxan is a chimeric antibody ... -xi... in the name rituximab.
The first quantities of rituximab were generated by heterologous expression from a Chinese hamster ovary (CHO) cell in hollow fiber reactors in spring 1992.
Rituxan (Rituximab) is a chimeric mAb with human IgG1 constant domains.
Partly human... partly murine (mouse)... antibodies....some patients are allergic to the mouse protein, and must switch to ofatumumab, which is fully humanized ... or type 2, generation 3... obinutuzumab also fully human, although originating from Chinese hamster ovary cells and genetically engineered.
Thankyou. Im waiting for a scan to look at my spleen. Docs would rather wait and dont want to treat just because of fatigue. I was told that Ibrutinib is well tolerated compared to chemo. They dont recommend chemo second time. You have more choice in USA.
The future is promising. There are some people on this site who have been on Ibrutinib for 5 yrs or more but Iv been told that Car T
is the future. It needs more refining for cll but we can hope. There are more drugs on the horizon for the near future too.
Copiktra is Duvelisib - though I don't know what the efficacy of Duvelisib is. I think DRADCLIFF is allergic to Rixuxumab, which means FCR is out, and FC is the only chemo alternative. But FC gave an 8 year remission on a (42?) year old - so I am not sure if it will go very far on a second round.
DRADCLIFF - if it were me, I would go with Ibrutinib for now. You can likely add Venetoclax when it is approved. You can also switch to Acalabrutinib when approved (soon) if you'd like also. And, my guess that there are a lot of meds about to hit the scene that will also be of help when available.
Starting a pill per day regimen at age 50 may (and likely will) be temporary. New things will come to market and you can then take them. The issues is that the CLL world is not static and lots of new things are coming on the scene every year. I highly doubt you will be taking Ibrutinib for 40 years!
Regardless of what you do, taking a pill a day to stay alive and well is a small trade off. Please separate the issue of developing resistance - as it is a different phenomenon. People take insulin every day to keep going with Diabetes. I could go on.
The biggest and most important thing right now is to make sure your specialist is someone who is aware and involved in CLL enough to keep you abreast of new things hitting the market. Good luck.
Totally agree with the advice to get yourself seen by a CLL expert who does research and look at broader options.
It’s great that your FC gave you 8 years. Truth be told from what I remember of the evidence typically if you were to have a second to with chemo the remission may well be shorter. So even in the UK where cost of medicines is carefully scrutinised you would be eligible for either venetoclax or ibrutinib second line and wouldn’t be required to go through chemo again.
The most common second line drug judging by what gets talked about most on the forum at the moment seems to be ibrutinib rather than any newer drug. But that may change now venetoclax has a second line option and as other drugs come on the market.
It’s actually a lot of choice at the moment. Which is why a trial may be good as some trials are comparing combinations of newer drugs to try and help us figure out what is really the best.
The good news at the moment is there are several really good drugs for cll. And more coming along the pipeline too. All the more reason to get that true expert opinion. Try the cll society’s free video consult if your insurance is a problem with getting a second opinion.
As others have said know what is in each drug and remind your Dr. Of your response to Ruxuxtin so you don’t make that mistake again. Like others have said Gazyva, Imbruvica or Venteclax would be better options. Good luck Anna
If the pill is Imbruvica, which seems to be the standard of care in the US, I'd vote for that. It works, and like others say, you won't be on it the rest of your life. It will probably work great for years, and by then something else will come along. I'm currently on it (post trial) with minimal side effects, and am also 50. I also don't like the idea of being on something on the rest of my life, but I like the idea of feeling great, which I do, and I experienced extreme fatigue and bulkiness like you. Good luck!
Copiktra is duvelisib, a PI3K inhibitor similar to Zydelig (idelalisib). These drugs work, but for many patients, they cause life-threatening colitis. Most specialists hold PI3K inhibitors in reserve until after a patient has tried ibrutinib and venetoclax.
My sister, who also has CLL, was in the first clinical trial for duvelisib. It saved her life after FCR failed, but it made her profoundly sick with diarrhea and colitis. She then enrolled in a trial of venetoclax + obinutuzumab, and now has no detectable disease.
I think you are overstating the coitus risk.. I just checked the DUO trial data and there were no deaths from colitis... 13% of Duvelisib patients however did have Grade 4... which is rough, but it can be managed.
Some were treated with steroids for it, but there were no fatalities... from colitis.
I was on watch and wait for 18 years and now on a Ibrutinib/Rituiximab combo. No one want to take a pill for the rest of your life ... but doesn't have to be that way. CLL is chronic disease which means you have to deal with it the rest of of your life. Fortunately, there is good treatment options (Ibrutnib) that have been developed, but you have to commit to cleaning up other portions of your lifestyle. It is a four-prong approach - 1) treatment to stabilize your blood work , 2) a change in your diet; 3) a robust exercise regime, and 4) some mind/body work. Check out book - Anti-Cancer - David Servan-Schreiber
The pill a day for the "rest of your life" sounds like ibrutinib. I worried about that option too, but in retrospect, wonder how many people with cancer would give everything they had to be able to have their cancer controlled with a pill a day.
And I doubt it will be for the rest of my life, even though I would sign up for that deal today if you told me ibrutinib work for me that long.
I think more likely that those of us who start on ibrutinib will have other drugs added at some point to get us off therapy. It could be venetoclax, gazyva or some drug not yet invented.
If I had the choices you were given, ibrutinib would be an easy choice, but that's just me.
My husband just turned 52 and he started Ibrutinib last December. He has several swollen lymph nodes in his neck and groin area and they went down in size extremely fast after starting the meds. He takes 3 pills in the morning and I am hoping that after his labs stabilize that maybe he will be able to lessen the amount he has to take. He has been feeling great taking them with no side effects. Wishing you luck in making a decision that will be best for you.
I would consider doing the simplest method that will be effective with your markers so that you don’t use all your options at once. I am also waiting for final genetic studies, but am leaning toward irutinib for 6 months. 3rd generation targeted therapy will be here very soon and is probably available in trials now.
Maybe a second opinion? There are a number of recent trial results and many more options in the 8 years since you took FV. If you can’t readily afford one, the CLL Society.org arranges free 2nd opinions to qualified people. Application is on line.
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Update re visit to Moffit in Tampa to see my Hematologist 
Cll treatment 
unmutated cll patient treatment with fcr 
Well but not feeling wellness
