CLL Support Association
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Confused are the dr.s still using chemo with new drugs

Hi everyone,

I am near treatment. When I read these posts about people on the new drugs it seems like they are taking them with chemo. My doctor says he does not use chemo anymore. Are they bringing the chemo back with the new drugs. Why not have the clinical trials with only the new drugs and no chemo. I researched that chemo destroys the bone marrow. Has anyone out there that just takes one drug. Thank you.

Happy New Year!! God bless everyone.

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In the U.S. Imbruvica (ibrutinib) is available for firstline as a single agent, in clinical trials it is being added to chemo treatments like FCR and bendamustine/rituxan [BR].

There are hundreds of clinical trials currently looking at all types of combinations...

~chris

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Is there a central listing maintained of what trials are available in the US, would you know? Many thanks.

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See clinicaltrials.gov. Searchable database by disease and location.

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Many thanks

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Hi Hmo1: If your doctor has determined that the cocktail of chemo plus 'new drug' is not for you ... it's probably because the duo is not indicated for your specific brand of CLL. There are multiple forms of CLL and no single regimen fits them all. It's likely that your recommended treatment was selected as specific to YOUR conditions.

If you're uncertain why the doctor has recommended a particular medicine then the best source for an explanation is to ask her directly. The more interest you display in the WHY of treatment then the greater the likelihood that, in the future, you'll get comprehensive explanations.

Good luck in this journey.

Caven

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I'm taking only Venetoclax as front line treatment (not on a clinical trial). I have never had chemo or any other drugs for my CLL. I am doing very well with no side effects. Write down a list of questions you have regarding your proposed treatment so that you can discuss all your concerns with your specialist at your next office visit. You also may wish to get a second opinion. I wish you well on your CLL journey.

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Thank you,

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I just started Ibrutinib as a monotherapy. My doc was leaning towards BR but ultimately we decided Ibrutinib was the way to go. Get a second opinion before you do anything. You are treatment naive only once so make it count.

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The newer monoclonal antibody treatments are less destructive on healthy cells but still create some toxic effects. Only when they are funded to be able to move foward with studies of promising natural sources of drugs will they be poison free. But people's reactions to these drugs vary greatly.

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I have been on acalabrutinib (Calquence) as a monotherapy for 14 months with good results and little toxicity. I am on a clinical trial and this drug is not yet FDA approved for CLL, but has been approved for MCL (mantle cell lymphoma). As I understand it, once a drug is approved, it can be prescribed off label as the doctor sees fit. You might ask your doctor what s/he thinks. Like you, I have also read that some chemo treatments can be destructive to bone marrow and some CLL specialists do not use them anymore. Dr. Richard Furman is one, I believe.

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