Currently W&W but having talks for taking part in CLL17 trial being offered through CUH Cork.Ireland.

[Lu05]

Hi I’m interested in anyone thinking of taking part in this trial I have been on w&w since feb 2020 now needing treatment due to lymph nodes swelling progression. My diagnosis is CLL. The trial treatment I receive will be a randomized selection of 3 forms of treatment.

[cllady01 Former Volunteer]

The trial information: dcllsg.de/en/trial/cll17/in...

[cajunjeff]

Lu05, let me start by saying this appears to be an excellent trial with 3 very good options. If I had not started treatment and was enrolling in this trial, I am not even sure which arm of the trial I would want to be in.

My guess is most folks would prefer the ibrutinib venetoclax arm of the trial. These are two of the best new drugs there are for Cll. Two is better than one, right?

Well that’s what the trial is trying to figure out. I think there is little doubt that an Ibrutinib venetoclax combination would kill more Cll cells than either drug alone. But each new drug adds a new toxicity risk and we all want to take the least amount of medicine we need to keep us well. Lots of people are on ibrutinib alone and it can work very well by itself.

I do not know what your options are in Ireland to treat Cll outside of a clinical trial. If your only option is a chemo treatment like FCR, as it is for most in the UK, I would join that trial in a heartbeat as I personally would take any of the three arms over FCR. If you had mutated IGHV Cll, FCR might be three best choice, but I would still rather any of these three options.

This is all a long way of saying that I would take the trial. Good luck to you.

[Lu05 in reply to cajunjeff]

Thanks so much as I’m a bit unsure of it all as it’s loads of new information to take on board. The CNM specialist is to ring me Tuesday for any questions I will have and get the ball rolling 👏🏻

[bennevisplace in reply to Lu05]

Cajunjeff took the words out of my mouth. I would join that trial in a heartbeat too, if I were eligible.

[GalwayGirl123]

Hi, I took part in CLL13 trial at Galway University Hospital in 2018. I was randomised to the Ibrutinib, Obintuzimab, Venetoclax arm. I am now MRDu. I had excellent care at the hospital. A few ups and downs but would recommend the trial to anyone.

Best of Luck☘️☘️

[Lu05 in reply to GalwayGirl123]

That’s fantastic galwaygirl123 thanks for replying , delighted it worked so well for you. Do you mind me asking which one you received? What does MRDu mean?

I’m totally at early stages in all this❤️

Lu05

[GalwayGirl123 in reply to Lu05]

Hi, I was randomised on the GIVe treatment. MRDu is Minimal Residual Disease - undetected. This result was given after a bone marrow biopsy I had when I finished the trial.

[KimBXL]

Good morning LU05!

I am living in Belgium and have been offered to participate in the CLL17 study as well. I was diagnosed in 2013 and have been in W&W till now.

No treatment so far, genetically seen with an overall positive outlook... BUT a tendency to develop enlarged lymph nodes, which manifest to stay.

My hematologists at the UZ Leuven here in Belgium put me on the list and are currently waiting for the greenlight of UZ Cologne, which is the initiator of the study as far as I understood. They are expecting to start beginning of June 2021.

I got a second opinion directly at the UZ Cologne, which supports the decision to take part in the study. It is a great opportunity to get regular checks, to receive a good combination of the latest state of the art medication.

Me personally I am hesitant regards Ibrutinib in my case as my Cologne doctors mentioned that I am too young (54) to take meds forever

I am happy I discovered this page and your threat - let's keep each other in the loop !

Greetz!

[Lu05 in reply to KimBXL]

Good morning KimBXL,

Thank you for replying to my post it’s great to hear from you. I am right now reading all the information about the CLL17 study for the third time🧐and side affects. As my daughter said don’t read the side affects too much until I get my randomized selection,

I get what your saying about Ibrutinib as I’m 45 and obs it would affect liver and kidney function with prolonged usage.

The study here is organized by the Uni of Cologne rep by the German CLL study group🙏🏻

So it will be fingers crossed that we get one of the shorter studies. It sounds positive for us to be on it. 😀I’ll ask the CNM Tuesday when do they hope to begin but my guess is June as well due to ore tests etc., not liking the bone marrow test , have you ever had one?

Keep in touch ,

Lu05🦋

[KimBXL in reply to Lu05]

Dear LU05!

Thank you so much for the fast reply and the information provided!

I am fly-eyeing the side effects atm as I tend to overthink and ... well, you know, if I read it get it stupid thinking ...

Don't get me wrong, I am not naïve and well informed and will tackle it when necessary. Just trying not to overburden my mind

Bone marrowing?? See, I didn't go/read that far yet and haven't had this exam. Scary ... thank you for mentioning it!

Another question on my hema-faq list...

Have you been vaccinated? My docs in Cologne were very adamant about participants being fully vaccinated long before starting the treatments.

Big cheers!

[Lu05 in reply to KimBXL]

I received my first phizer jab last Thursday 👏🏻The nurse giving it to me knows about my CLL and said it’s important to have had it. Tg I had not one reaction 😌

[Loweez in reply to Lu05]

I had my second jab yesterday and had no reaction. I took two Tylenol before I went and as soon as I got home I put an ice pack on the area I got injected for about a half hour. Took more Tylenol later in the day just as a precaution. Had no problems so far and my arm doesn’t hurt at all. Might help someone else to do this too

[Lu05 in reply to Loweez]

Great thanks will keep that in mind 🎈