Growing our Own: Family, Friends, Ibrutinib and Green Tea: Many Reasons to Give Thanks

Our flushing Camellia Sinensis (tea trees)

I have many reasons to celebrate my favorite secular holiday of the year, Thanksgiving. It is a good time to pause with family and friends, perhaps before the festive meal begins, and go around the table and have everyone reflect on all that brings us joy and purpose, all that makes us thankful.

I am blessed with a close and loving and expanding (through marriage and babies) family, amazing friends nearby and on the other side of the world, meaningful and rewarding work, year round access to, and better yet, the ability to grow our own tasty local organic vegan food (and soon make meaningful amounts of my own delicious green tea), the chance to travel and lecture in supposedly pedestrian towns that always turn out to be full of new experiences and friends, teachers and cultural opportunities that expand my vision, and maybe, just maybe, getting my health back, my chance to keep going, to do more, and to grow old.

I am so grateful for the opportunity to be a lab rat. Yes, I complain about the CT scans and all the travel, but honestly because of Clinical Trial NCT01217749 that gave me access to ibrutinib, I am here and well and celebrating with a mind that is not convulsed about my next treatment choice or about a looming unexpected twist in my health. I have a real shot at physical redemption. I am thankful for all the help I got from my case managers and my medical group (St Jude Heritage Medical Group), the entire medical and trial team at OSU, and my family, especially my wife for making this all  happen. 

It is possible to live in gratitude and sickness at once. Some of us with cancer must do this for long chunks of our lives, but it never easy and never the most desirable. Ghandi simply said: It is health that is real wealth and not pieces of gold and silver. While I have posted extensively on living with bad news and sickness, it has always been with an eye on the prize of getting better, of being well.

My next post will discuss the risks and benefits of clinical trials, both from my personal perspective and from what I learned at the Manhattan Beach Lymphoma Research Foundation Meeting a few weeks ago.

But first, I will enjoy a down day of turkey less vegan feasting with my family.

Moving Sideways

Usually boring is the best way to be. No bumps in the road. No drama.

I saw Dr. Kipps last week and with his deeply delving fingers he was able to unearth some cervical nodes that no-one, not even the owner of this body, has ever felt.

But they were all small, less that one by one centimeter and maybe smaller than 90 days ago. When they are that size it is hard to tell if there's been any change.

My counts were still good. The neutrophils were back to normal after the jump up from my burst of methylprednisolone for the fluid behind my right eardrum. My platelets were over 400,000 and my Hgb was 13.8. All good stuff.

The CLL is still there but it is behaving itself. It's pretty stable, moving sideways at worst and more likely improving at a glacial pace.

The only trouble on the horizon is that my right ear is clogged up again. Seems that the steroid fix was only temporary so my family doctor suggested a trial of Afrin. It only helped a little and I needed to stop to avoid the rebound swelling that happens with extended use, so it's time to consult an ENT. I am less worried about it, as it is not progressive, easy to knock back, and mostly just annoying. Still time to check it out and make sure there is no structural problem. He may want to put a ventilation tube in, so I better get my surfing in first.

I am down to one infusion a month of IVIG here, and one more blood draw at OSU. That's more good news as my veins are pretty battered after so many years despite all my efforts to protect them.

Let me give you a sense of some of what I see happening in CLL just with people I know.

In this week alone, I learned that a friend, Chris Dwyer of CLL Canada has developed Richter's Transformation. Heard from another long time CLLer with both AIHA and ITP. After having curative surgery for lung cancer, some else is fighting to get back in the NIH ibrutinib trial which helped her knock back her CLL big time. I had dinner and a wonderful visit with a pal from the east coast who is doing great post transplant at MDACC for both CLL and MDS. Another long time local friend is considering the phase three trial of ibrutinib versus ofatumumab for his relapsed CLL. I said go for it. Talked with a young Asian woman who was diagnosed in her twenties. And this is supposed to be a disease of old white men. And I connected with two CLL widows. Not fair. It's not fair, any of this.

Sometimes the CLL is the least of our problems.

I am back in Ohio in a week. Let me know if you will there too.

L'Shana Tova to all my Jewish friends. May it be a year of peace and good health, May this be the year we see a cure to all cancers.

As for myself, at this time of self reflection and self improvement, I plan to double down of getting the word out about CLL to patients and providers alike.

I will be lecturing on CLL in Las Vegas next month to about 400 family doctors, and hope to be reporting from ASH again in Atlanta next December. But I have much bigger plans, Stay tuned

But first I need to visit my granddaughter.

And for something a big more upbeat than CLL, I am growing my own organic tea. We have two beautiful camellia sinensis, variety sinensis bushes each about two feet high. Tried my first cup. Picked a few leaves that had fallen off or been injured in transit, let them wilt in the shade for a hour, steamed them for a minute, dehydrated them at low heat, and then brewed the crispy leaves at 175 º for exactly 75 seconds. A rich smooth flavor, a lovely golden color, an almost silky taste in my cup. I am in heaven. Why didn't I try this before? I will need to let them get much bigger before I can harvest enough to meet my "habit" and must avoid for now picking the new tender growth that makes the best tea, but it's a good start.

It's always good to be starting something new.

Not My Cup of Tea

TEA GROWING AREAS IN JAPAN

Well I finally decided I could no longer handle the dishwater tasting green teas that I have been consuming after finishing off my store of pre-tsunami Japanese organic Sencha tea many months ago.

I  have been nervous about the radiation risk to the tea crop in Japan, That's not a crazy concern.

My wonderful grower and supplier is from Kyoto which is more than 300 miles from the power plant.  He has certificates that say his tea is free of radiation and I completely trust him.

Whom I don't trust is the Japanese government and their food monitoring.

We know that the crop in the famous tea growing prefecture of Shizuoka which is about one hundred milds closer to the damaged reactors was contaminated.  The westward winds after the radiation escape probably mitigated the Japanese exposure, but the safety data is conflicting. By the way Tokyo is about half way closer to Fukushima than is Kyoto.

I ordered some Japanese tea from a supplier in New York that swore that he still had some pre-disaster tea in his USA warehouse, airtight and sealed. I eagerly waited for it to arrive and brighten my morning breakfast. Very disappointing. It was mediocre at best, better than the junk at the grocery store, but no sparkle, no sweetness, no life.

I  have never been a big fan of Chinese teas - I have been to China and I don't trust what is claimed to be organic. I worry it is too often just a label that lets the vendor jack up the prices, and bedsides the tea seem more astringent. Remember the Chinese and the baby formula and the  dog food. Indian teas are better, but "green" is not their strength.

I have some green tea from Malawi that I'll try next.

So I still missing my gentle but very lively Japanese Sencha.

I admit it. I am a tea snob.

Today I ordered over 500 grams of four different Japanese organic Senchas, all from the southern island of Kyushu (Kumamoto, Kagoshima, and Miyazaki), about as far from the damaged nuclear reactor you can get and still speak Japanese as your official language.

I am hopeful and my mouth is watering in anticipation. The reviews could have been used to describe a a classy pinot noir.

One of the great luxuries of being in remission is that I feel OK to complain about what is and isn't my cup of tea.

Yesterday I said the prayer for the dead (Kaddish) for Dr. Larry Deutsch again and remembered that others were not so lucky. I also prayed that ibrutinib and its ilk and the next generation of therapies to follow them will soon and in our time make tragedies like Larry's and so many others, painful memories of a past left behind. His partner will be sending me his autopsy and I will share here what the dead can teach the living.

I am doing well, finishing my steroids tomorrow with my right ear still doing fine and only an increased fatigue burden.

Paddle boarding at Sunset Beach tomorrow morning with my family, and off to OSU in Columbus on Tuesday to see friends and get my last infusion and more ibrutinib.

Tea or not, it is good to be alive.

Green tea and emails

Barry asked about green tea (see comments).

I hope it's saving the day, because I quit more than 40 years of my drug of choice, coffee, to move to the gentler world of camelia sinensis.

There is not much data, but the Mayo clinic study shows that one particular tea extract may slow the disease progression for some patients. 

Its benefits in Stage IV are anyone's guess. It can interfere with certain meds, but that is usually not a concern in CLL as those meds aren't often used to treat CLL.

I suspect that for a very few of us green tea may have very potent antileukemic effects, for some. its effects are mild, a few get worse, and for most, it doesn't hurt. Which is far better than  some of the treatments out there.

Tea trees may have high pesticide residues, so I only drink organic green tea, preferably from Japan. 

BTW, if you want to ask me a question, the best way is to email me at bkoffmanmd@gmail.com

A problem with the blog is that while I love your comments and welcome your questions, at least once you should email me so I can respond personally thereafter.

I can't give medical advice on the Internet,  but I can help explain your options and suggest what you might want to discuss with your doctors.  

Also I can recommend tea. 

I drink three pots a day Organic Superior Sencha. The tea is steeped at precisely 176 degrees for 75 seconds.

It has a rounded full taste with very little astringency, an almost floral scent, and a hint of peach. I use the same leaves for all three pots, and the third is almost as good as the first.

Wonderful. Alerting and calming at the same time.

You never knew I was a tea snob.