Another CLL (Chronic lymphocytic leukemia) Patient Dies Disease Free from Complications of Her Treatment

I lost another friend to CLL: a kind and powerful woman who so loved her life filled with friends and strong family support and love. She was an important and passionate member of our local support group.

Too young, too alive to be gone so soon.

She was treated at the end at one of the world's best CLL centers, but that transfer of care from a community oncologist might have come too late.

When she passed on, her CLL was nowhere to be found, but her uncontrollable GVHD (graft versus host disease) from her transplant (her sister was the donor) killed her. GVHD can be so unpredictable and so relentless.

Yet another death by treatment.

Transplant is a very blunt tool with huge collateral damage, but when the disease is on the march again and has wised up from former chemotherapy so that it can no longer be lulled back to sleep with the usual drug combos, transplant may be the only option left that offers us another chance. I am glad it's available. It can be a life saver. Or not. Remember that I opted for one for myself almost 6 years ago. That's how this whole blog started.

The issue, however, is not knocking back the CLL. That we can do most of the time. The issue is healing the patient. That is where we fall short.

That is why I am pushing for new therapies.

That is why I am looking at preserving our immunity and our marrow.

That is why we need research to rebuild our damaged B and T cells.

The pain of these losses motivates what I do here on the blog and out there in the community. Most of the time, I feel so lucky to be able to do blog and share my story and ideas and interviews.

But sometimes, like today, it just reminds me of how vulnerable that we all are and how raw are our  wounds .

Right now, once again, I will just want to stop and stoop my head and say a prayer for her family.

I am so sad.

I hate this cancer.

The danger of getting advice from a non CLL expert

My search spiders, primed for anything CLLish, pointed me to a blog by a retired medical oncologist who shares with us his frustration with the limited therapies available for the many CLL patients he treated in the past and his excitement about finding an article reviewing new therapies.


I was pleased to read that an experienced seasoned general oncologist was turning his attention to our rare disease and was anxious to learn his insights.


I was soon disappointed.


He points out the realities when he practiced.


When I was in practice we didn’t have any very effective drugs. We had drugs that could eliminate most of the leukemia cells, but never cure the disease. Eventually, the leukemia would come back in spite of continuing treatment. So when I saw this article, I assumed that there were new treatments and drugs to offer these patients, because I had seen preliminary reports suggesting breakthroughs. Wrong! Yes many new drugs have been developed, but none are particularly effective. The only one that seems to be useful is a drug called Rituximab, which is an antibody directed against a molecule on the CLL surface. But even this drug saved only a few more people when it was added to standard treatment, treatment that is not much different than what I used. And in the key study where this was discovered, most of the patients were much younger than average.


 Later he concludes with this wet blanket for any fire we patients might have for the new therapies.


But for most patients, who are older and have active disease, a disappointment! No breakthroughs like the one for people with chronic myelocytic leukemia (see my article on Kareem and CML) where we have found drugs that are life-saving. Sorry.


What has he been reading? 


This is what happens when you have doctors who are not heavily involved in treating our disease. They may miss when the winds shift.  They are out of touch with the prevailing zeitgeist. 


They have been known to put their faith in gold standard across the board, whether appropriate or not. They too often rely on stale data, and they don't see the coming changes. Their care might be appropriate, compassionate, well meaning and competent, but it is not cutting edge. It is not the best that the present state of knowledge has to offer.


This oncologist blogger to his credit was making an effort, knows about the new prognostic markers, and warns us appropriately that none of the new therapies has yet been proven to extend life. He understands the disease, but doesn't see the import of the coming new therapies because he is not immersed in the research and patient care of CLL patients. He is waiting for the proof for the trials that show the new drugs will add years to our lives. 


That is a long wait, longer than some of have.


Here is what I wrote the doctor:


Contrary to your take, there has never been a more promising time for patients with CLL. Low toxicity  sea change therapies such as Ibrutinib, GS-1101 and other kinase inhibitors are entering phase III trials after extraordinary results in phase I and II trials. Lenilimamide, HDMP, ofatumumab, alemtuzumab, and bendamustine already ofter patients new alternatives for disease control and long symptom free remissions.  While I agree a trial that shows an advantage over the "gold standard" of FCR in survival is what we all want, it is unrealistic and unfair to ask patients to assume that all these game changing therapies will ultimately fail. I for one, like you am waiting for the proof, but I am very encouraged by the early data and like many patients with cancer, must make decisions with imperfect knowledge.


For a nice overview of the research on the new small molecules, please take a look at Blood June 19:
The B-cell receptor signaling pathway as a therapeutic target in CLL
Jennifer A. Woyach, Amy J. Johnson and John C. Byrd


Thanks


Brian Koffman MD -http://bkoffman.blogspot.com/


That is a great article that summarizes much of the recent research.  I recommend it


Truth is that the other blogger and I are both right. 


He is correct when he says that nothing is proven yet. CLL remains incurable for the most part. The best new therapies are just entering Phase III trials and that is a far cry from proving that will keep us alive a minute longer than placebo, let alone FCR.


But I am right too. Patients who were at the end of their therapeutic rope are seeing their lives extended. Patients too old or too sick or too refractory are being routinely salvaged with amazing consistency and minimal toxicity.


This is more than anecdotes. The reported data is getting stronger and stronger. The response rates and progression free survival numbers are to use a most non-medical term,  wonderful.


Could it all crash and burn in the phase III trial? Could every new drug and therapy in trial turn out to a loser? Of course that could happen. But that is not what I and many of my CLL friends and by the way, the smart money on Wall Street is betting. 


I think we got some winners here.


And I am not talking drugs or stocks or careers, but us patients. We are the winners if my vision of the future comes to pass. We will prove my colleague blogger wrong in his disappointment. And I think he will celebrate with us.


One final caveat. This well meaning clearly bright and thoughtful oncologist is out of the CLL loop. Make sure you doctor isn't also. That is why I beg you to get an opinion from a CLL maven. Picking the right team of doctors could save your life.