Today, I joined CLLSA

[lumdor]

I am writing this as a CLL patient with a history of this disease going back to 2008, when I was diagnosed through a 'simple' blood test taken during my yearly check-up. My Internist recommended that I start seeing an Oncologist/Hematologist about a few weeks after he 'discovered' my CLL. This I did.

I was in a 'wait and watch' situation until May 2015, when I became part of a Randomized Phase III Study of Bendamustine plus Rituximab versus Ibrutinib plus Rituximab versus Ibrutinib alone in untreated older patients [I will be 69 in mid-August] with CLL. I am on the Ibrutinib only arm. I am receiving this through Sylvester Comprehensive Cancer Care at the University of Miami, Miller School of Medicine, under the direction of Joseph D. Rosenblatt, M.D., Chief, Hematology-Oncology.

As I noted above, I was a 'watch and wait' patient, with monthly visits to Dr. Rosenblatt for labs and check-ups in Miami. Back in November 2014, my wife and I travelled to Boston for a second opinion at Dana Farber Cancer Institute. There I met with Dr. Jennifer Brown, who put me through a plethora of tests, including a bone marrow sample. [Let me note, that while I was at DFCI, I was asked by Dr. Brown whether I would participate in long term research by 'donating' extra vials of blood and the bone marrow sample to their study. I consented... for the good of finding a cure for future patients with CLL.]

I was asked by Dr. Brown whether I would be interested in becoming part of their Phase III CLL Study. My response was that depending on which 'arm' I would be randomly selected for would be important. It was possible that the side effects from one or more of the trial drugs could cause me to stay in Boston longer than just 'treatment day'. In addition, the added travel costs from Southeast Florida to Boston could become prohibitive. I told Dr. Brown that I wanted to be part of the Trial, but I would see if it was going to be done at UM before signing on at DFCI.

When I met with Dr. Rosenblatt for my monthly check-up [he had received DFCI's test results] I inquired about the chances of Sylvester getting the same CLL study. His response was positive and, as 'they' say... the rest is history.

More on my experiences in this Phase III Trial in the very near future.

[Cllcanada Top Poster CURE Hero]

Hi lumdor

I look forward to hearing more from this very important clinical trial. Thank-you for participating...

I wanted to mention to untreated Canadians that this trial has a number of locations open in Canada as well...

Info Here

clinicaltrials.gov/ct2/show...

~chris

[lumdor in reply to Cllcanada]

More around the end of July.

[Cammie]

Welcome to HU community great to have another expert patient along.

Great to hear you joined CLLSA.

Will look out for your posts.

Geoff

[newyork8]

Hi Lumdor

I also am in the south Florida area. There don't seem to be any acknowledged CL specialists here per se, which is odd given the large population of older persons residing here. I know Dr. Rosenblatt does see CL patients. Has your experience been positive with him? To me what constitutes a CL specialist includes a history of seeing many CLL patients and also the motivation to stay on top of the latest research. Thank you and best of luck on your treatment journey!

[lumdor in reply to newyork8]

Sorry it took so long for a reply...

Saw Dr. Rosenblatt & did Ibrutinib study under his auspices. Got over 90% if side effects. Stopped Ibrutinib under Dr. Jennifer Brown @ Dana-Farber in Boston.

[Jm954 Administrator in reply to lumdor]

Did you move onto another drug?

[lumdor]

I am possibly going to be part of another study in the near future.