Sunday, March 9, 2014

The Sad and Untimely Death of my dear Friend Dragana: "Dying for Your Principles" or "Herbs versus Cancer is a Fixed Fight"

2011 in Wales
Dragana is wearing the red skirt

If tragedy is suffering without meaning, then I am trying to give meaning to the untimely death of this  beautiful woman on March 6, 2014. Please follow with me as I share the story of how our intertwined paths unfold. There is even a poignant cameo appearance by the late Dr. Hamblin.

I first met Dragana on her 40th birthday in the magical kingdom of Bhutan in 1997, and I last saw her over two years ago though we Skyped often until a few weeks ago.

Let me linger on our first encounter seventeen years ago to place out connection in the exotic, mystical, and Eastern space where it flourished for so long.

Went we met in the land of the the peaceful dragon half way around the world, my best friend, Todd and I were traveling to celebrate his 50th birthday to escape all the "Depends and Geritol" jokes and instead spend his half century mark visiting as an exotic place as possible.

Those days, the Buddhist kingdom of Bhutan was not receiving too many tourists (still isn't), especially in the monsoon season when we slipped and slid around in the thin air on the narrow and muddy Himalyan roads, but what it lacked in creature comforts it made up for in the beauty of the people and their country.

Then there was no TV and no lawyers, the national sport was archery, polygamy was common, and everyone wore the traditional clothing of a "go" and argyle socks and spoke the queen's English. As a potency talisman, there were pictures and sculptures of erect ejaculating penises everywhere hanging from rafters in people's homes, inside Buddhist temples and on the walls of government buildings. We drank yak milk and ate red rice. We never encounter a Yeti, but he and she can be found commemorated on the country's stamps. Wedged in the Himalayan mountains and valleys between India and China, Nepal and Bangladesh, the citizens proudly say it would be the largest country in the world if you could iron it out. 

The modern basketball loving king famously wants his government to increase the country's gross national happiness. Check out his website for the details.

It is also known since ancient times as the land of medical herbs. 

That is where Dragana fits in.

Dragana was part of a small ex-pat community working in the capital, Thimphu, as a third generation herbalist for the government helping to modernize traditional Buddhist herbal medicine.

She was standardizing and identifying active agents, checking for bacterial and fungal contamination, and cataloging ancient therapies.

She proudly told me that she brought the first elevator to the country, actually a dumb waiter to deliver the bulk herbs to the traditional hospital.

She was melding modern technology and science with ancient wisdom, something she was expert at.

Her knowledge of botanical and traditional Chinese medicine, her amazing talent as artist painting the plants that she so loved, her creative approach to raw organic vegan food, her dizzying personal energy, her ruthless ability to see though my sometimes facile notions, and her complete commitment to her herbal way of life has been a beacon in my life. 

We stayed in touch, at first by handwritten letters, then email, then phone and finally Skype. Though she was born in Croatia, she called England home and worked as an herbalist for Neil's Yard, a respected maker of various botanical products. My son Will once helped her pick wild lavender for one of her concoctions.

We met again in Spain when I was traveling with my same friend and my oldest daughter. I visited her twice in England, once with my two boys and yes the same friend (Todd and I have traveled a lot together), and the last time with my wife.

I remember us standing together in remote Druid stone circles in the rain at midnight or exploring the English country side for wild herbs and flowers or lounging in the sum In Parc Guell in Barcelona.

She visited the US with her friend Daphne (pictured above on the left) to attend my daughter's wedding and three of my four children visited her and stayed at her home in England. Just a few months ago, Dragana arranged for my oldest son to visit at last June's summer solstice celebration with the Druids at Stonehenge.

When she came here eight years ago for my daughter's wedding, she was one of the very few that I told of my cancer diagnosis one month earlier. She and Daphne immediately deconstructed my diet and my life, helped me shop for a juicer and order all the accruements of my new raw vegan lifestyle.

She had little faith in Western medicine, but I am proud that she would occasionally and reluctantly consult me on allopathic matters when her herbs were not strong enough.

When I visited her last, she had been diagnosed with cancer. I scheduled a trip to England to beg her to consider a likely life saving and curative surgery but she would have none of it. She came into the world with all her parts and she was leaving it the same way. We even all visited the wonderful CLL champion Dr. Terry Hamblin not long before he passed on from his colon cancer. (Dragana was in his living room with us in the picture from my memorial post). I had not prepped him in anyway, but somehow he came to tell us the story of how early in his career as as an oncologist he had had a patient that refused curative therapy for her cancer because she wanted to treat it naturally. She went on to die a needlessly horribly painful death from metastatic disease. I was moved by the story, but Dragana was not. She heard none of this. In fact, she felt sad for Dr. Hamblin and his sterile English diet and his trust in Western medicine.

She also heard none of my pleas to be open to all possible options to cure her cancer. She was clear and strong on this.

Instead, my wife and I traveled with her though southern England and Wales and had a marvelous time. 

Near the end, the terrible pain of metastatic disease caused her to relent. Palliative radiation bought her respite to revisit her home in Croatia. Hospice care with pain meds made sure she was comfortable in her last few months. Even then, when she was so weak that she could barely speak, she still refused most therapies and used her herbs to ameliorate many of her symptoms.

She lived and died in a consistent and valiant way, congruent with her whole life's work and philosophy.


Now she's gone and I will miss her powerful and haunting spirit. She opened my eyes to a bigger world and changed my whole approach to food and herbs and really healing. She also became a dear friend and mentor to my whole family.

I am so sad that she's passed and I so wish that I could have changed her mind so that I could plan another visit to her home in the beautiful English countryside to learn from her and to eat one more of her amazing meals. I want to chat on SKYPE with her tomorrow and get her counsel on diet and herbs while she scolds me on my out of balance life choices.

There is a huge part of me that is in shock that I have outlived her. My cancer is still for the most part incurable. Her's was not.

Even if I wish it wasn't so, I respect and admire her decision.

My backbone is less strong. Though I hate chemo, if there was a chemotherapy available tomorrow that would for sure cure my CLL, I'd be first in line. Heck if it was proven homeopathy, which in the face of it seems completely nonsensical, could get me a lasting remission, I would give it a try, even if meant standing my whole allopathic understanding of medicine on its head.

I believe we need to use what is proven to work, and when that is unknown, which is too often the case, we should use what makes the most sense to our hearts and our brains.

But I also believe we need to be open to change, especially radical change, as Dr. Hamblin would say, "think laterally".

The Talmud teaches we are to live by the commandments, not die by them. I generalize that principle to be pragmatic core of my flexible approach to healing. I am results oriented. Dragana was process oriented, committed to a balanced and "eastern" way of seeing the world. If and when our we ever meet again, I am sure we would lovingly disagree on who chose the better path.

In the meantime, I cherish the nearly seventeen years that she was my dear dear friend.

Every time, and this would be many times every day, that I eat a sprouted grain or drink a raw vegetable juice or thumb my nose at a GMO highly processed food, I will think of her.

Rest in peace, Dragana. You are a very special person.

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Wednesday, May 16, 2012

Alemtuzumab in Combination With Methylprednisolone for 17p deleted patients

J Clin Oncol. 2012 May 10;30(14):1647-55. Epub 2012 Apr 9.

Alemtuzumab in Combination With Methylprednisolone Is a Highly Effective Induction Regimen for Patients With Chronic Lymphocytic Leukemia and Deletion of TP53: Final Results of the National Cancer Research Institute CLL206 Trial.




This article (link hereis notable for three things.

First, it offers a very impressive response rate in the most difficult to treat patients. 85% overall with 36% CR (complete remission).  7 of10 patients with lymph nodes > 5 cm responded and two had CRs. Wow!

Second, it has a very high risk of serious infections. I quote:

"Grade 3 to 4 infection occurred in 51% of the overall cohort and in 29% of patients less than 60 years of age. Treatment-related mortality was 5%"

Still it is an options for those with 17p del who have so few options and a trial with tyrosine kinase inhibitor is not in the cards. It makes most sense in younger patients, younger being less than 60. It could be a bridge to transplant as median progression free survival was about a year, time enough to get the transplant team rolling and get the Campath out of your system.

Overall, however, it is a risky path as both HDMP(Methylprednisolone) and alemtuzumab (Campath) are very immunosuppressive. It is not just the risk of catching some bug. It is the risk of waking up something you already caught and that has been dormant for years such as zoster or CMV. The steroids have other significant side effects too and surprising  two out of three patients had grade 3 or 4 hematologic toxicities.

I might opt for HDMP+O myself if I wasn't in this ibrutinib + O trial here at OSU, but the data on HDMP + A is very persuasive and would need to be carefully considered.

Third and final point, one of the authors is the late great and much beloved Terry Hamblin. While admittedly, some of this is old data presented in 2009, it is updated for this 2012 publication months after his passing. 

Truly Dr. Hamblin lives on in the work he has done and so much more.

What a blessing his life was for those of us who knew him.

On personal note, I am continuing to do well in Columbus with my three grey pills of ibrutinib every morning. Looking forward to a few weeks of no infusions. I have less gut issues, more muscle pains, and smaller nodes. Life is good.

If the weather is good tomorrow I am going canoeing in Darby Creek. Dinner with new friends. Tonight went for a sunset walk in Prairie Oaks, a beautiful Metro Park. The Kings (HOW BOUT THOSE KINGS?) are on TV here.


I really like Columbus.

I am also really glad I will be home to stay in a few weeks. 

I have Stanley Cup playoff tickets that are finally useful and I have to sell them all. It probably will all be over just a few days before I get home. Maybe I can still catch the victory parade.

GO KINGS GO

PS. I love this kind of post: Raw science, good news, dear friends, nature, and hockey in one sweep!

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Thursday, January 12, 2012

Tributes for Dr. Hamblin

This is copied directly from the DAILY ECHO, the local paper where Dr. Hamblin lived in Bournemouth, England.

Tributes pour in for Professor Terry Hamblin


TRIBUTES have been pouring in from all over the world for a brilliant Bournemouth doctor and cancer researcher who has died at the Macmillan Unit in Christchurch.

Worcester-born, but Hampshire-bred Professor Terry Hamblin, 68 – known to friends and colleagues as “Prof” – became an NHS consultant at the age of 30, and combined his hospital work with often world-beating research aimed at finding more effective treatments for cancers.

His achievements included carrying out Britain’s first stem cell transplant in the 1980s; and developing the first DNA cancer vaccine in the world to be trialled on patients.

He changed the way chronic lymphocytic leukaemia was managed with his discovery that it had two types, one giving patients an average of 25 years survival. A professor at Southampton University since 1987, Prof Hamblin continued his research work after retiring from the NHS in 2003.

He chaired the initial appeal to improve the cancer and blood disorders unit at the Royal Bournemouth Hospital.

He was also an honorary consultant haematologist at Kings College Hospital, London; editor in chief of the medical journal Leukaemia Research and a prolific writer with wide-ranging interests, reflected in his online blog.

The father of four attended the Lansdowne Baptist Church, where he was a deacon or elder for about 18 years and he led the Sunday School for 11 years.

In 2003, he had a road named after him in Bournemouth.

Local fundraiser Estelle Wilson said: “I am proud to have been able to call Professor Terry Hamblin a friend for over 30 years.

“As well as his professional achievements in medicine, specifically successful research in the treatment of blood cancers, Prof has been an outstanding human being, always ready to help, advise, mentor and support patients, colleagues, family or friends.

“Prof Hamblin has been a literal life-saver to thousands of local patients, having treated them firstly at Boscombe Hos-pital and later at the Royal Bournemouth.

“He initiated the Bournemouth Leukaemia Fund, which funds research at the Royal Bournemouth into all blood cancers.

“I am determined to carry on fundraising for this charity in his name and in his memory.”

Long-standing colleague Prof-essor Martin Glennie, director of cancer sciences at Southampton University, said: “Professor Hamblin was one of the founder scientists who helped establish Southampton and Bournemouth as centres of excellence for cancer research back in the early 1970s.

“He was a leader in characterising different types of lymphoid cancers, identifying new drug-targets, and pioneering the development of antibody and vaccine-based drugs.

“His research and insight were world renowned, including showing that leukaemia patients must be treated and managed individually, with some needing aggressive intervention and others thriving under a ‘wait and see’ schedule.

“Professor Hamblin was one of our brightest scientists and his in-sights and enthusiasm will be missed by all who knew him.”

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Monday, January 9, 2012

Much News: Almost all of it Good on the CLL Front

At the beach and connecting by a tethered Iphone which is a whole other story.

In the midst of the sad visit to a long time patient getting compassionate hospice care, and in the process of digesting the loss of Dr. Hamblin, surely one of the kindest and brightest lights in the world of CLL, and in the aftermath of responding to a scare about a long time friend's daughter's cancer reoccurring, I got a bunch of good news.

The finding on my bone marrow are subtle, and the report is preliminary, but it is not bad. The CLL is now about 10% of the marrow, up from 3% only nine months ago, but it is not racing out of control. I take this news as neutral.

The health and cellularity of the marrow itself may be better than the last sample suggested when the report said my marrow had been damaged. There is some contradictory findings that I need Dr. Kipps to help me understand before I declare this a victory. Dr. Kipps may demand a recount.

The flow cytometry shows my clone is CD20 dim which means that ofatumumab (the other drug used with PCI-32765 in the OSU trial) may have some real therapeutic effect and all my infusions of rituximab have been cleared away. No CD20 positivity on my B cells might have given Dr. Byrd some pause as to my acceptability to a trial that relies heavily on an anti-CD20 antibody to clear the blood of the leukemia cells once they are flushed from the nodes by PCI-32765. I see this as one more obstacle removed on the road to Ohio.

FISH is still pending and has taken on a surprising new importance that I will explain in a follow-up post. (Hint: My 11q deletion may not be real).

My gastroenterologist called me to say that all 15 biopsies of my stomach and duodenum showed no metaplasia, no abnormal lymphocytes, and no H- Pylori. No hidden lymphoma or leukemic infiltrates. Another worry crossed of my list.

No wonder my tummy hurt that night. 15 biopsies!

And...... (drum roll, please)

My case manager at Blue Shield says that my consult with Dr. Byrd has been approved. Ohio State needs to call her and work out the details, but it's a go. Thank you, thank you.

So Columbus, here I come.

But wait, there's more!

A dear friend offered to take Patty and me to Italy next year for a month to stay at his rented villa. All expenses paid!

And my friend's daughter's imaging came back negative. No new cancer.

And finally my daughter and her boyfriend in Chicago are committed to switching to a plant based diet. And his employer is supporting it!

Sometimes we get an embarrassment of good fortune.

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Sunday, January 8, 2012

Terry Hamblin 1943-2012

Visit to Dr. Terry Hamblin at his home in Bournemouth, England, March 2011

From his blog; Mutation of Mortality :

Terence John Hamblin 1943 – 2012


It is with great sadness that we announce that Terry peacefully passed away shortly before 1:00 AM on Sunday 8th January 2012.

The family wish to thank everyone for their prayers and kind message sent over the period of Terry's illness.

From me:

Damn cancer. Damn, damn cancer.

To die in his 60s, a man with so much left to give and such a generous heart for giving.

His intellectual rigor, his demand to examine the raw data and the raw science under the hood, his prying open and breaking down each cancer puzzle into digestible bits that could perhaps someday be modified to gain an advantage on our relentless malignant tormentor, this scientific drive informs how I, when I am at my best, approach my writing on CLL and all my medical education topics. He was a mentor.

But it was his generous soul, his constant giving, and his deep faith that were what I will most remember.

He modeled the joy and blessing that comes from giving. You could read it between the lines of the counsel he offered so often and so freely to the many who reached out to him when overwhelmed in cancer's grip,

He lived in the peace and certitude that comes from his unflinching faith. He even got this skeptical Jew to pray for him, a believing Christian.

I was lucky to visit him and his wife last March at his home.

I will miss him. The whole CLL community will. And many more.

We are the ones dismayed. Or angry. Or both.

We are the ones lost and uneasy.

He is at peace.

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