My wife has been diagnosed with Cll 4 years ago and her nodes around the neck have gone gradually from nothing to very large (4 of them about 8cm each ) which makes her professional and social life extremely traumatic..She is 13q mutated 65 wbc 13 hemoglobin and 150 paletets with no physical health problems related to Cll .
Her hematologist has agreed to start her on Ibrutinib in January since she doesn’t want to do chemo and I see in this forum that her nodes might shrink within a month
Ma question is : How about stopping treatment when her nodes are back to normal and if it takes another 4 years to grow back ,she could be without treatment and hoping for a miracle pil to be discovered ?
Or will the nodes grow back faster this time ?
Thanks for your thoughts
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Sergi
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Current thinking is to hold all treatment until CLL starts to impact a patient's quality of life or until blood counts drop or nodes start to effect other organs.
Your wife should get a second opion before starting any treatment with an experienced hemaetologist and probably have a CTscan to take a peek inside to see what the nodes are doing.
Ibrutinib is a drug the patient is on for life, or until it fails or side effects become difficult to manage, which can occur in a small number of patients. It is currently, not a drug you stop and start, because CLL will often return more aggressively and be harder to treat a second time.
You should also discuss with the CLL specialist entering a clinical trial, where new drug combinations are being tried, some can be cycled, like you mention.
All the best... get more information before going ahead with any treatments... would be my advice...
I am 13q, mutated, 63. Was on W&W 12 years. Nodes grew the 11th year. WBC was 225k, anemia set in. I felt great...no aches, no pain. But it was time.
She is a wonderful candidate for FCR. I did 3 rounds and am in remission as of Aug.
Definitely get second opinion. Unless her nodes give her pain, she doesn't seem ready for treatment. I had FISH/Flow tests and BMB to see if I was ready for treatment.
I got a Port and sailed thru chemo. Hardly any side effects. I didn't want to do Ibrutinib. That is a pill every day forever. You can't go off of it. CLL comes back, nodes come back.
Lots of possible side effects with Ibrutinib. But for those with no choice, it's a good drug.
I didn't want chemo at first either. But a few months and ur done- that is what my CLL experts said. Plus over 65, they dont recommend. It was my last chance to try it. Hopefully in remission a long time.
FCR remains a good choice for treatment, particularly for those with 13q or trisomy and have mutated igvh. You get a one time, limited duration treatment with a good remission and the possibility of a likely cure for some. There is an increased risk of other cancers. It is true all of us with cll have that increased risk, but FCR does increase the secondary cancer risk over and above the normal risk. FCR can also be hard on our bone marrow. All treatments come with risks and benefits that have to be weighed. Getting a possible cure and/or a long remission from a limited duration treatment is an enormous benefit, to be sure.
But I would not agree ibrutinib is only a good drug for those with no choice, nor that its side effects are worse than those with FCR. Some CLL specialists believe that those who do very well with FCR would also do very well with ibrutinib, with less risk of secondary cancer and of marrow damage. I do not think we will know for sure which is better until trials, like the Flair trial, which compare FCR and ibrutinib head to head, are completed.
If the end game for us is survival, not just remission length, we may not have that answer for many more years. FCR followed by ibrutinib might give us more years than ibrutinib alone or I/V, or vice versa. No one really knows.
And I do not agree that when someone starts ibrutinib it will be a pill for life. More likely we will see other inhibitors like venetoclax added to ibrutinib in the future which will give many people remissions where they can stop the pills, remissions that may or may not be longer than FCR remissions. The ibrutinib/venetoclax trials are killing it right now with high rates of deep remissions. Many people are having venetoclax added to their ibrutinib outside of trials now too. I might be in that number next year.
As to the original OP query, I think the current state of the literature is that it would be a bad idea to stop ibrutinib once started, absent an mrd negative type remission. It could lead to ibrutinb resistance. Few people get into remission on ibrutinib alone, but they are seeing more with long term use.
Sergi, the good news is that for many of us taking ibrutinib, its not as bad as we thought. I have had minimal side effects in 8 months of it. While I wish I wasn't taking a pill every day, if you told me today I could take this pill forever and it would keep my cll in check, I would sign that deal in a heartbeat.
I do not think its a bad plan at all for your wife to start on ibrutinib and see what drugs might be added later while she keeps her CLL in check. Its a do the least harm now approach while other options are being developed.
One treatment you could ask about is Gazyva / obinutuzemab which is a monoclonal antibody like rituxan, not chemo. It would involve 6 months of infusions - 4 in the first month, then five more, each 28 days apart. I would not be comfortable with a doctor who proposed short term use of any of the newer non chemo pill form drugs. Gazyva would not necessarily give your wife a long term remission, but might give her time for some of the new combination trials that involve going off of pills at a certain point to have results in. It was FDA approved for use with Chlorambucil. Many US doctors use it alone (mine did), but in some countries that is not an option. I don't know about France. I also don't know whether committing to 6 months of an infusion treatment would be possible.
I have heard of patients trying something like prednisone, just to deal with nodes, but would want a doctor very familiar with that as an option before considering it. Prednisone can have some serious, life altering, long term effects, as well as very negative side effects when used in high doses, or long term.
I just finished 6 months of gazyva only and feel great with good numbers. Just wondering how long ago you had your treatment and if dr gave any idea as to how long you may be progression free
I am on this forum for my wife as a caregiver and researching for information about treatments.
She’s been on Ibrutinib since January 10 and went from 3 pills a day to 2 after 3 weeks because of side effects.
Lymph nodes are back to an acceptable side (1centimeter ) around her neck and barely visible.
After a bout with anemia and heavy menstruel bleeding, important numbers are back within range and all around health is satisfactory.
She’s due back to her hematologist in October and he’s thinking to add Venetoclax to her regiment and when it becomes available to CAR -T treatment.
Financially, it make sense for the French healthcare system to spend 350k for car-T and be done with it instead of 100k a year for the next 10 or 20 years on Ibrutinib as he explained to me .
So to answer your question, my wife is in an early treatment stage and the question to stop treatment didn’t come up yet .
My Gazyva treatment was during the first 6 months of 2015. My doctor hasn’t said anything about my expected remission time. My first remission was for ten years, so I’m planning on that, or longer, for this round.
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