Iciclle trial of ibrutinib

[norahmaria]

Hi everyone, has anyone any info on the icille trial ?

[flutterbye]

Hi, I am on this trial! Started it last week! Only 20 people are on it. What would you like to know?

BW

Jacqueline

[norahmaria in reply to flutterbye]

Zhello flutterby, thank you for your reply. Can you tell me what the trial is please ? Is it just ibrutinib alone and how are you feeling so far ? Much appreciated

[norahmaria in reply to norahmaria]

Are you in the uk and if so where about ? Im in birmingham undercthe QE hospital

[norahmaria]

Just looked at your profile and see you are in scotland. Im also called jacqueline (jackie) lol! Im waiting for a pet scan and depending on the results may be put on this trial.

[PaulaS Volunteer]

This link tells you about the iciCLL trial (CllCanada posted it a couple of months ago). It's worth reading all the details (and clicking where it says "open box".

cancerresearchuk.org/about-...

My haemo doctor (here in Sheffield) thought I would be "borderline" for acceptance on this trial, and he sent my details to the relevant doctor for consideration. I haven't heard anything since, so I suspect I haven't got on to it. But I would've gone for it if I'd been accepted. Guaranteed to get Ibrutinib (not just a 50% chance). Quite a lot of tests (including bone marrow biopsies) involved. I can't remember all the details, but the link tells you a lot more.

I think about 50 people were going to be accepted, so if it only has 20 so far, maybe there is room for more..

Hoping things work out well for you, NorahMaria (or Jacky?),

Paula

P.S. To Flutterbye (another Jacqueline). How are you doing this week? Did you have the leukopheresis or not?

[norahmaria in reply to PaulaS]

Hi paula thank you for your reply and very I formative link. I dont k ow yet if im going to be put on the trial, tho my dr mentioned it when I saw him yesterday. It all depends on what my PET scan reveals. I hope you can get accepted on to the trial. Very best wishes and thank you for the info.

[PaulaS Volunteer in reply to norahmaria]

I'm glad you found that link helpful, Norahmaria/Jackie. I liked it too - very patient-friendly.

I've just looked up the FLAIR trial (mentioned by Graham222), and found this link posted by Hairbear a few weeks ago.

ukctg.nihr.ac.uk/trialdetai...

Sadly, it seems to exclude people who have already had treatment for CLL, AND it excludes people with a history of Richters. So, I don't think you would be accepted.

When are your PET scans? I really do hope and pray that they don't show the Richters coming back...

My doctor told me the FLAIR trial might be relevant for me, if I don't get accepted on the iciCLLe trial. So, we wait and see, but I much prefer the idea of iciCLLe trial, where everyone gets Ibrutinib. (In FLAIR, as Graham222 has said, it's only 50%).

Very best wishes,

Paula

[norahmaria in reply to PaulaS]

Thank yiu paula and thanks for the link. Im waiting for the apt for my PET scan, it should be this week. I see my consultant in 2 weeks for the results. I hope you can get on the iciCLLe trial or if not FLAIR. Ive had FCR in 2009 so hope I can get ibrutinib this time . Regards jackie x

[flutterbye]

It is Ibrutinib alone! I travel to Hammersmith hospital to do the trial. I thought it was only 20 trialists ...2 at each hospital taking part. Although my WBC went up to 590 and my Hg 70 ( on Tuesday WBC 565 Hg 79) I am feeling fine.

I had a lot of nodes in my neck and after only a week my doctor told me he can't feel a thing....not even a swollen gland....so fingers crossed my counts start to recover.

No Paula I didn't need the Leukopheresis as my Hg recovered a little.

[norahmaria in reply to flutterbye]

Thank you for your reply flutterbye, its a shame you have to travel so far for your trial. Good to know you zre feeling fine despite your high counts. Im also ok apart from the drenching day time sweats which are horrible. My bloods are all good. Im having a PET scan to see if the richters has come back or whether the enlarged nodes are just my cll. Treatment will depend on what the results reveal. My doctor mentioned the iciclle trial as a psiibility. Very best wishes to you.

[flutterbye in reply to norahmaria]

My very best wishes to you too! Hope you get the correct/best treatment. As you say my counts are very high but I have been lucky as I have never experienced sweats or fatigue. The only thing I get us UTIs.

BW

Jacqueline

[norahmaria in reply to flutterbye]

Thank you jacqueline. I also get lots of UTIs. Its horrible isnt it, so painful. Very best wishes to you. Jackie x

[PaulaS Volunteer in reply to flutterbye]

Hi Jacqueline,

I was glad to hear your bloods have improved a bit, so you didn't need the Leukopheresis. It was also good to know that the nodes in your neck have disappeared. Things seem to be looking good. Let's hope the WBC gradually goes down now.

Do keep us in touch - I think a lot of people are watching to see how you get on (well I certainly am).

Wishing you well,

Paula

[Graham2222]

Glad it's going well for people. I believe there are 40 places on the IciCLLe trial, inc four at Hammersmith. I am having a CAT scan next Tuesday as part of the process. I understand that the places at Hammersmith, at least, are now all taken. But there are two other trials running. FLAIR offers a 50% chance of Ibrutinib and another is trialling the promising RBendamustine.

[norahmaria]

Hi Graham, im in Birmingham at the Queen Elisabeth Hospital. Apparently the Flair trial isnt running here. Good luck with Icille .

[Graham2222]

Hi norahmaria. FLAIR is going to be a national trial, so I'm pretty sure it will be available somewhere in Birmingham at some point, even if not at QES. You might ask your consultant and see if you can get a referral if you are interested. That's what I did. Good luck.

[norahmaria in reply to Graham2222]

Thank you for your rep,y graham. Apparently the trial isnt available for me as I have richters transfirmation. Hope I can get on the ibrutinib only iciCLLe trial. Fingers crossed. Best wishes to you

[flutterbye]

Just to let you know that after only two weeks on Ibrutinib my spleen is no longer detectable. WBC 420 and Hg 82 not much movement on them I know, but they are going in the right direction. There is still a place at Hammersmith hospital for one more trialist, if anyone needs treatment!

Hope you are well Jackie!

[norahmaria in reply to flutterbye]

Fantastic news Flutterbye! So pleased ibrutinib seems to be doing its job ! Thank you for letting me know how your doing. I really hope I can get on to this trial. I had my PET scan on Tuesday and see my consultant next wednesday for the results. Anxious times . Keep in touch x

[flutterbye]

Hi noramarie, how are you doing? Did you get on the IciCLLe trial? Hope all is well! Jacqueline

[norahmaria in reply to flutterbye]

Hello Flutterbye, thank you so much for your message. So lovely that you remembered me. Sorry I havent posted for ages, ive been meaning to update my progress. Well the PET scan, axillary lymph node removal (biopsy) revealed no sign of the Richters having returned which was a great relief ! I continued to have increasing sweats and so another bone marrow aspirate was done. Again Richters wasnt found to be present hower the CLL infilttation was massively increased from my last one earlier in the year. My consultant said that they would apply to the Cancer Drugs Fund to see if I could funding for Ibrutinib (this was just before christmas). After several anxious weeks worrying if I would get it I was finally told that luckily for me the drug had just recieved approval and I could have it ! I was so pleased and very greatful to get it especially as its such an expensive drug. I couldnt get it through the trial as ive had Richters. Anyway, ive been on it for 6 weeks now and so far so goof. My platelets had fallen to 40 but last week had risen to 104. My haemaglobin has taken a bashing and is proving slow to recover and so I have been having fortnightly blood transfusions, hopefully not for much longer once the drug kicks in. Side effects have been minimal, sore mouth and bleeding gums (better now), decreased appetite and diarreha. I also get very tired (but thats normal for us CLLers!). So much better than chemo. Im a very lucky lady to get it and very thankful to my consultant.

How are you doing flutterbye ? I hope you are keeping well x

[norahmaria in reply to norahmaria]

Are you still on the trial flutterbye ? Any side effects ? Do hope you are doing well

[flutterbye]

So glad to hear that you are getting Ibrutinib and your Richters has not returned! Yes I am still on the trial, I Was down at London on Tuesday for my 5 month check up. My Hb took a nose dive when I started ibrutinib but I am pleased to say it is now normal. People will be fed up reading about my WBC but here it is again....460 before tx, went up to 590 but it is now 29.2. I wish it was available for everyone! BW Jacqueline

[norahmaria]

Glad to hear you are doing well and your counts have improed. My wbc count is only 9, my hb went down to 7 but the regular transfusions keep bringing it up for a couple of weeks before it droos again. Did you neutrophils drop ? Mine were low before tx but have come up to 0.6 last week. The main issue is tiredness and lack of energy, dovyou get thatflutterbye

[flutterbye in reply to norahmaria]

My neutrophils are 3.6 so within the normal range! I have been very lucky as I have never felt unwell, ( no fatigue or night sweats) even before treatment! I do get a lot of urine infections tho. I have seen an urologist and everything is ok with my kidneys and bladder but I have to take prophylactic antibiotics. Keep well! Jacqueline

[norahmaria]

Sorry about the spellings! My tablet is playing up !

[norahmaria]

Thats a really impressive neutrophil count ! Pleased to hear you feel well on the trial (apart from the frequent urine infections which I know from experience can be incredibly painful ). Perhaps its early days for me as only been on ibrutinib for 7 weeks, hooefully the tirdness will subside when I get used to the drug and when my hb starts improving without the transfusions. Keep in touch Jacqueline. Very best wishes to you .

jackie x