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CLL Support Association
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Untreated CLL with 17 p deletion

Hi, l need some advise.

I was diagnosed 6 years ago with CLL. I have been in W&W until recently my hemoglobin decreased to 10.2. I also have some enlarged lymphnodes but it doesn’t bother me.

Dr. believes that this is the time to start treatment soon. Dr Wierda at Md Anderson recommended me to contact Dana Farber as my last blood test came up that I have 17p deletion and they currently don’t have any clinical trial for me.

Dr Wierda recommended me the clinical trial on Acalabrutinib, Venetoclax and Gazyva. I also on my own found out that they have another clinical trial with just one drug: Zanabrutinib.

I don’t really know what to do, but most of the time I feel that the combination of 3 drugs will be more toxic and probably with more side effects, which I am so afraid of and I know it was what Dr Wierda recommended but I want hear your experience with theses combinations and also your thoughts with Zanabrutinib only.

Thanks

Ana Maria

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Hi Anita. I would definitely go with triple combination with the thoughts that there is already a great data available that it will bring you to uMRD negative and you will be able to stop treatment for hopefully meaningful remission.

With Z which is the most current BTK inhibitor you will most likely have to take it longer with UMRD negativitity quite questionable in foreseeing future. It is just one person opinion. Good luck with whatever you choose, G.

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I will add that Ibrutinib is also a possible option, if you can get insurance coverage for it. While MRD negativity is a great possible outcome for other drugs, Ibrutinib can keep your symptoms under control for a very long time.

I just mention this if you feel that other drugs or combo’s may be a bit much for you to deal with right now. I personally think it’s important to look at ALL options. Dr. Wierda is brilliant, but likely more favored toward clinical trials.

You definitely have choices here.

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Anita, I agree with Murzik, the triple combo sounds like a great trial.

It’s reasonable to worry that having three drugs increases the toxicity chance by three, but none of these three drugs, for most people, have truly bad side effects. They are not chemo drugs and most of the side effects of these drugs are transient and tolerable.

And while the combination of the drugs might be experimental, individually there is a lot of data on how effective each drug is and there is every reason to believe there will be a synergistic effect of the combination. It will be a three prong attack on your Cll and is suspect there will be a very good chance of remissions for trial participants.

I think zanabrutinb alone would likely keep your Cll in check for awhile, but this would be an easy choice for me, if I were in your shoes, to choose the trial. Good luck, I look forward to reading about what you choose and how you do. Jeff

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Venetoclax and/or any combination that includes venetoclax is where you want to go with 17P. Nothing else to date touches 17P. Imbruvica and others will reduce lymph nodes and slow CLL down for the short term, but 17P is a s whole different matter and needs the big gun, venetoclax. My wife started with 17P and TP53 at 75% level. Venetoclax reduced to 4000 WBC in four weeks and has maintained that general level now for 8 plus months.

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Thanks for that info. My hubby has those two though presently indolent.

It means a lot.

Linda

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Just a side note. A small percentage of 17P CLL patients never need treatment. My wife was not one of them...after a year of watch and worry her ALC started doubling, with night sweats, lymph nodes every where. When first diagnosed we read everything we could find and learned she had about 2 years to live if the 17P progressed. A year later and progressing...in the providence of God Venetoclax was approved by the FDA. Night sweats are gone and as are the swollen lymph nodes and blood work all normal for the past 8+ months.

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Yes, providence of God. I am a nurse and watch for symptoms and will head straight back to the Cancer Ctr if they show up.

Thanks!!

L.

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Providence of scientists actually.

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I am 17p and on W and W. I see Dr. Wierda and that is what he told me. I have a dormant type of 17p. He has done a clinical study at MDA and found that if the 17p is at 25 percent or less it acts in a very dormant matter for most. I was diagnosed in 2017 and he thinks I have had it from 2014, maybe longer. STAY STRONG JR. 🤠🤠🤠🤠

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Anita: As I’m sure know, Dr. Wierda is one of the top CLL doctors in the US. MD Andersen and Dana Farber are also among the best of the best and these hospitals are on the cutting edge of the battle against CLL. Drug combinations are where the experts feel treatment is headed. Hopefully, we will get some confirmation regarding the effectiveness of these combinations from the ASH conference next month.

You have done a wonderful job of getting in front of a highly talented CLL expert. My advice to you is to listen to his advice. Nothing is certain in the world of CLL but the odds are in your favor since you are being advised by Dr. Wierda. I wish you good luck with your decision and pending treatment.

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The 3 combos r great!! All the best!

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There are two people on cllforum.org who reported that they were starting the Dana Farber trial. If you go to the site, click on recent. There is also a group that did the obinutuzumab, Ibrutinib, Venetoclax trial at Ohio State who had a very active thread going comparing notes. Warning - It's a very long thread with lots of details. You might want by starting towards the end and looking at the results of those posting.

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Hi Anita, I didn't know a blood test could identify 17p. I thought that required a bone marrow biopsy. I have 17p and have been on Zanuibrutinib for three years. The Australian doctor in charge of the trial (Constantine Tam) says it's better than Ibrutinib (it apparently gets much better concentration in the blood) but it's too early to know overall what its success with 17p will be long term and whether it will be better than Ibrutinib. But if Dr Wierda thinks the triple combo is the way to go, I'd ask him what happens if that treatment stops working. If you had Z now, you'd still presumably have the option of Venetoclax up your sleeve for the future.

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FISH blood test is a test to determine the genetic abnormalities affecting the treatment decisions for CLL, including the presence of !7P/TP53 deletion. Your BMB was most likely due to the trial protocol.

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Hi Ana,

It sounds like you are in very good hands with your consultants. I am TP53 (similar to 17P deleted) and have been on Ibrutinib for the last 6 months which has been very successful for me. However most combination trials are showing better results than single agent treatment and some (Ibrutinib + Venetoclax) are even being touted as offering potential for, dare I say it, a cure. If I was in your shoes and could access combination treatment I would definitely do so as apart from a better outcome there is a very real prospect of being able to discontinue all treatment after achieving MRD negativity (say 12-18 months). Single agent treatment on the other hand will almost always be continuous until it stops working. Good luck.

Mike

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Combos are the next thing...... my Dr told me that ibrutinib + venetoclax work better together than individually. They are waiting for the ASH Congress in a couple of weeks that will show some new studies results and probably move second line treatments to first line. I am on Ibrutinib for a month.I don´t have the chance of a trial.

Just talk to them with all your doubts..... and share they answers with us !

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hi antonb,

why only for one month?

I thought, if on Ibrutinib, it would be for the rest of our life?

Reg. Hilda :)

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I began one month ago.......

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See also the trial at Mayo for untreated high risk CLL. All trials are available at clinicaltrials.gov.

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Anita1, I have been on the trial of Acalabrutinib, Gazyva, and Venetoclax at Ohio State University James Cancer Center for the past four months. I also am 17p deleted, un-mutated, and other markers. My WBC went from a high of 306,000 just three months ago, to 6,000 two weeks ago. My lymph’s and spleen reduced in size. My other results look good. Side effects have been minimal, a mild headache for two weeks when I started Acalabrutinib. Medical personnel are watchful for side effects and have means to lessen any that occur. I’m am 71, fit, no other comorbidities. I also drink lots of water each day. I know several others on this trial that are doing very well. If Dana Farber has an opening for this trial, I think it is definitely something to look into. Again, just my opinion.

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Hi Anita

Combos have a much higher chance of destroying CLL cells and are likely better at avoiding mutations (as the CLL cells are getting attacked from different sides). FCR is a triple combo of drugs with worse side effects that those trial drugs. We're all different but I'd be seriously looking at that combo trial unless I had some individual medical issue that ruled it out.

Good luck. Whatever you decide, go with at and don't look back.

Graham

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I am 17p deleted and have done very well on an Imbruvica plus Venetoclax trial called captivate. I would recommend the triple. Venetoclax side effects and not too much and acalabrutin is supposed to be good too. The other drug is for about 6 months I think.

Are you Mutated IVIG status?

Be well

Hoffy

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I should add I feel very fortunate. I got to MRD negative in BM after 14 months on the combo. Single acalabrutin is not getting to that mostly. Sometime Venetoclax does. The 2 plus 1 should synergize well!

Be well,

Hoffy

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Hi Hoffa . Thanks for your response Unfortunately I am now unmutated IGVH. Are you too? The trial that you had is the one that I looking for but I understand that it is close now😔. Less toxicity I believe and for what I hear also effective. I am in Miami the trial that I am talking about with the 3 drugs is in Boston and very intensive participation plus 3 bone biopsy and 3 CT scan etc ....I am very undecided ....I hope one day I will find a light at the end of the tunnel

...

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I think the AOV trial is very good. Once you get going you can refuse BMB's and CT Scan's. If you are doing well they will not kick you out of the trial and they will make exceptions. They don't care too much if you are doing well- I have found.

The important thing is 17P deleted Unmutated is very dangerous and you want to respond with the best possible treatment. A combo like AOV is that. You do not want a single agent that may not get the upper hand on the disease.

Be well,

Hoffy

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Hoffy! Your response are very encouraging ! Thanks

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Circlesaba is at Dana Farber in this AOV trial. He’s doing quite well.

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I, too, have 17p deletion. Have been very successful with Ibrutinib, since May. I know how critical to future treatment options as clinical trials are. However, personally, I'd rather go with a medication with proven results than clinical trial. Also I prefer using only one toxic med at a time, if possible!

Whatever you decide , I wish you the best outcome.

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Mlftw: Much of the risk has been removed from stage II and III trials as significant research has already occurred at this point. The vast majority of the top CLL doctors are recommending clinical trials with 2 and 3 drug combinations.

Anita: The scans and bone marrow biopsies are a small price to pay to be included in a clinical trial. I had my second bone marrow biopsy this year, just last week. It was uneventful. Don’t let a handful of bone marrow biopsies and scans make the decision for you. These tests are not painful. And this is coming from a guy who used to skip annual physicals because he hated to have his blood drawn for cholesterol testing. Those were the days!

Good luck with your decision.

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Thank you for your response . I really appreciate it!

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Thanks for your response. Can I ask you if Ibrutinib was a success drug for you.? Also if Ibrutinib brought you some side effects ?

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I've had great success with Imbruvica! And with minimal side effects, such as sporadic pain in arms or legs, but nothing Tylenol can't help. I should add that I take 2 of the usual dose of 3 capsules, which is doing the job and could be responsible lack of major effects. My doctor insisted on very frequent blood work like once a week for the first probably a couple of months. Results happen so good that I'm down to only getting bloodwork and maybe once a month or even less. And HOPEME, thank you for the info about the clinical trials . You really helped with some of the misconceptions that I think I had.

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Hi Mlftw . Glad that Ibrutinib is working well for you. I understand is very expensive isn’t ?

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It is. I am very fortunate, again, that my insurance has covered the cost.

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