Hey,
I believe that I have been accepted for this Clinical Trial, starting in July '13 - I wonder if anyone else in the UK (or the world! ) would like to share the "journey / experience" with me over the forthcoming months - even better if your trial also in Birmingham UK !!
Regards,
MartyR )----<<< New to this CLL Site
Welcome Marty
Email allerts and the daily journal notifications will I hope restart tomorrow. This will help others find you .
Please tell us more about the trial. I know many will be very interested I hope you can keep us posted.
Nick
Hi Nick,
I hope the e-mail system will be back soon.
Yes, Marty, more detail please. For previously treated or for untreated? Name of the trial?
Sounds like something I would be interested in if eligible.
Mikey
Just looked up the UKCTG and found this for the previously treated and is at Birmingham as you say as well as 14 other sites.
A Randomized, Double-Blind and Placebo-Controlled Study of Idelalisib in Combination With Bendamustine and Rituximab for Previously Treated Chronic Lymphocytic Leukemia (CLL)
Hi Mikey, make sure you complete your email preferences in the profile drop down box . I am not sure what the default is. I guess we find out if emails are connected in the morning.
Nick
Nick & Mikey,
Hopefully it appears that this new site is working this morning - so a bit more about me.....
I am Martyn and I have been diagnosed with CLL since 2001 - To some extent, because I have had good remissions, my CLL has been at the back of my mind --- BUT recent events have changed all that!
Medical History
Treatment using Chlorambucil in 2001 & 2003
Relapsed for several years until further treatment in July 2010 – 6 No. FC Chemotherapy with 3 No. Rituximab – completion Jan 2011.
May 2013 – Admitted to hospital with severe cough, fevers / rigors and sepsis pneumonia. Two weeks of antibiotic treatments in isolation ward – being reviewed and monitored by specialist CLL Haematologist. Investigations including blood, bone marrow & CT Scan as well as standard CLL Tests.
Blood Levels @ 12/06/13
? White Blood Count – 85.84 (Range 4 to 11.)
? Haemoglobin 120 (Range 135 to 180.)
? Platelet Count 231 (Range 150 to 400.)
? Preliminary Bone Marrow 92%
12/06/13 Haematologist Consultant Appointment.
Physical examination determined that there were lymphocyte nodes between 2-4 cm long in my neck, armpits and groin. Also the CT Scan had shown a progression of lymphocytes inside my body.
Consultant has recommended that my CLL needs treatment as early as possible and gave my wife and I two weeks to decide on the options for treatment.
Option 1 – F.C.R.
Although there was a disappointing relapse period (18 months) since my last F.C.R. treatment (and I did not receive the full Rituximab course.) – F.C.R. treatment should give me 12 months.
Option 2 – Clinical Trial – Bendamustine + Rituximab and GS-1101/placebo. (GS-1101 = Idelalisib.)
This clinical trial is being sponsored by Gilead Sciences Inc of Seattle with 24 weeks of treatment, extensive samples and study continuing perhaps through to 2017! (NO guarantee of new GS-1101.)
Option 3 – Stem Cell transplant (S.C.T.)
Intense Chemotherapy followed by an infusion of donor stem cells – with intense nursing and medical care for months. It appears that Stem Cell Transplant has a number of inherent risks and problems associated with low immune levels. – Although there is a 50% + survival rate of five years.
My personal view was that I do not want to spend too much time being hospitalised and then find that a lengthy treatment does not give me time to have some quality life with family and friends – which appears to indicate that S.C.T. is the last resort for my C.L.L.
2/07/13 - secord admission to hospital (4 days) - high temperature / low blood pressure - Antibiotic Treatment
Therefore we have chosen Option 2 as the lesser of three "evils".
Lots more to add - and links to medical papers -- later !!
Best regards,
Marty
(please acknowledge - that this has been posted !)
Thanks for that Marty, you seem to have been through the mill. Good luck with the trial and best wishes for a good remission.
Keep us posted.
Mikey
Thanks for sharing your story. I hope the infection has cleared and life's returned to relative normality. Good luck and keep us posted. Prepare strategies to keep cool, it's going be a hot one. When will you commence treatment?
Hi Hairbear, thanks for your reply - my recent infection and high temperature makes me realise how vulnerable my lowered immune system makes me!
I actually start my treatment NEXT thursday 18th / 19th which I understand will two days of intravenous B + R and seven days of the trial tablet - two weeks later blood tests (The laboratory last time asked for a whole armful of blood - well THIRTEEN phials seemed like an armful. !!!.)
Then if all is well repeating the intravenous / tablets - on a four week cycle.
It sounds so simple when you type it !!
Best regards - Martyn ( By the way - the "report" button on each post does not always show and the "reply to this" button always takes you back to the "login" pop-up. But I'm sure your software experts are working on these glitches! )
Hi Marty
Yes things can happen very quickly when the immune system is very depressed. Approaching treatment I guess you need to be a little focused and vigilant and remain so during treatment.t(with our experience I guess you are well prepared.
. Good the last infections's out of the way. thank you for sharing your picture It was very revealing reading how you weighed everything up. I am glad you found the trial that suits you and end up on the arm you wish for. Is there crossover?
Thanks for pointing out a couple more glitches, probably best to give it a while and then we can look at the list and see how the techies are doing 
I look forward to reading more. Thanks, and good luck for Thursday.
Nick
Nick
My Y key's sticking, that should be your experience not "our" No one can a reply yet.
Many thanks for all that, and best of luck with the trial.
Option 2 sounds like the best choice.
Let us know how you get on.
Ernie.
Hello Ernie - it seems that you are like me ten years ago - diagnosed with CLL.
As you have proberbly read - progress with treatment is moving on at a pace and many drug experts and doctors are finding new (and sometimes old and forgotten drugs" ) for treating our conditions.
I suppose the best advice I can give you is talk to your Consultant - ask what the figures and blood tests mean. Then go away and research the information given - to try to understand. [so many patients accept the doctors word and unless you ask your doctor questions - he won't be forthcoming !] - the second thing I would say is don't let this condition - govern your life - get out there and enjoy living with your family, kids & friends! My wife, family and grandkids are my inspiration to beat CLL! Thanks for your best wishes for my treatment - tomorrow I start being a "pin cushion" for all the needles and rattle as I walk with all the pills I will take - but I know it will give me the remission I need. Best regards
Marty
Hi Marty,
You HAVE had a rough time. I hope that this trial coming along for you at just the right time will see a quick change for the better in your circumstances.
This looks to be the trial you are on:
clinicaltrials.gov/show/NCT...
From your posting on the CLL Forum, I'm pleased to see you are checking if this trial includes crossover, if you don't see an improvement in your condition.
Thanks for doing the hard work for those of us wanting to know if that trial protocol improves the outcome over alternatives.
I'll be looking forward to your progress reports,
Neil
PS I really appreciate you making the effort to post what's been happening to you in the middle of our upgrade. You have enough on your mind without wondering if your post got through!
Hi Neil,
Thanks for your reply and words of encouragement.
Yes - you have located the correct Clinical Trial reference.
{and whilst the US CLL forum is very useful - they appear to have different approaches to treatment / drugs.}
I actually start my treatment NEXT thursday 18th / 19th which I understand will two days of intravenous B + R and seven days of the trial tablet - two weeks later blood tests (The laboratory last time asked for a whole armful of blood - well THIRTEEN phials seemed like an armful. !!!.)
Then if all is well repeating the intravenous / tablets - on a four week cycle.
It sounds so simple when you type it !!
From my previous treatment / watch and wait time - I have found the Consultants, Doctors and Nurses @ Heatlands Hospital very knowledgeable about CLL and a whole ward / department is devoted to blood disorders.
Out of interest are you a CLL Sufferer?
Of course I should mention that the total support and love of my family and friends helps me along this journey especially my wife.
By the way - I don't think I mentioned - I am 60 years old.
Best regards,
Martyn
Hi Martyn,
I was diagnosed with high risk SLL in 2009, which has since become CLL high risk/stage IV. You can read about me in my profile (well you could before I moved some of my particulars into the newly available fields which don't seem to be fully operational yet...). I'm still in W&W so your trial (but hopefully not trials and tribulations) may be of direct benefit to me and if not, I'm sure many others looking for better treatments than what is currently available.
I hope your marrow holds up to all the blood sampling!!! (I'm sure it will - but 13 vials does seem rather daunting!) Glad you've been impressed by your treatment centre.
All the best,
Neil
Good evening Neil,
Your profile has now appeared - and I am sorry to see that you have gone through different stages and illness since 2009.
I noticed that you are like me trying to learn more about the treatment of CLL and what drugs will be available soon! (Dr Susan O'Brian seems very knowledgeable on this subject.)
Maybe you have already found the following recent papers - which helped me!
CLL Research Papers.
A./ Infinity: IPI-145 (Phase I/CLL) Appears to Have Better Single-Agent Activity Compared with Gilead’s Idelalisib; Path to Approval Still Uncertain
B./ Professor Andy Pettitt, Consultant Haematologist, Royal Liverpool University Hospital
Dr Anna Schuh, Consultant Haematologist, Oxford University Hospitals
Treatment of CLL
C./ New PI3K-delta Inhibitor Prolongs Survival in Chronic Lymphocytic Leukemia
A phase I study has found that the novel selective PI3K-delta inhibitor idelalisib (formerly known as GS-1101) produced rapid and prolonged tumor shrinkage in half the patients with relapsed or refractory chronic lymphocytic leukemia (CLL) who received the drug as a monotherapy, suggesting that this drug could be an effective treatment for a patient population that faces limited success with current approved therapies……….
D./ oncologypractice.com/oncolo... and rituximab produce responses in 97% with CLLBy: NEIL OSTERWEIL, Oncology Report Digital Network
CHICAGO – When paired with rituximab, the experimental agent idelalisib was associated with durable progression-free survival rates in older patients with treatment-naive chronic lymphocytic leukemia or small lymphocytic lymphoma, Dr. Susan M. O’Brien reported at the annual meeting of the American Society of Clinical Oncology.
Among 64 patients in an open-label phase II study, the overall response rate was 97%, consisting of 19% complete responses and 78% partial responses. Among 9 patients with chromosome 17 abnormalities, which are associated with a poor prognosis, 3 had a complete response and 6 had a partial response, said Dr. O’Brien, of the University of Texas MD Anderson Cancer Center in Houston.
E./ A Conversation About Chronic Lymphocytic Leukemia with Dr. Susan O'Brien
F./ Bendamustine combined with rituximab in patients with relapsed and/or refractory chronic lymphocytic leukemia: a multicenter phase II trial of the German Chronic Lymphocytic Leukemia Study Group.
Department I of Internal Medicine, University of Cologne, Kerpener Str 62, 50937 Köln, Germany.
Abstract
PURPOSE:
The objective of this trial was to evaluate safety and efficacy of bendamustine combined with rituximab (BR) in patients with relapsed and/or refractory chronic lymphocytic leukemia (CLL).
Hopefully there is enough in the text - to allow you to find and download these documents - but if not I can try to send the complete documents or better links.
Regards,
Marty
Thanks Marty!
So far I seem to be in the happy? situation of being too young, not having my CLL turn aggressive or not being refractory to existing treatments to either need treatment with approved protocols or meet the requirements for joining a trial.
Like you, I keep a copy of interesting papers, but you've turned up some I've missed. Thankfully, many are available free.
For the moment, I just keep an eye on what trials are coming up in Australia and check if anything is available when I see my haematologist. The CLL community is in a much improved position than when I was diagnosed. FCR is now available in more countries and there are now quite a few promising trials progressing. I was very disappointed at the dearth of new research back then.
Be great if Idelalisib proves far superior to other drugs in trial!
Neil
Clinical Trials studying COVID-19 vaccines in CLL: Some have begun/ others are coming!
Any problems with EvuSheld and Alcabrutinib?
Latest Consultation/Bloods
Clinical trials for Richter's transformation
Any tips on moving house safely?
