Busy Few Weeks and a Therefore Rather Ironic Article on Fatigue in CLL (chronic lymphocytic leukemia) by Dr. Estrov

Hi Friends,

It’s been a busy few weeks.

Last week was exciting as we marked the first year since we launched our website, published our first 2016 issue of The CLL Tribune, and fielded a short survey in our Reader Poll on how we patients and caregivers make decisions about our therapy. I hope to present the results at a symposium at the 2016 European Hematology Association Congress in Copenhagen in June, so I am asking you to please complete it. It takes less than 5 minutes. Many thanks to the 78 folks who have already done so!

Two weeks ago in Anaheim, I spoke in front of more than 550 patients and caregivers on behalf of LLS at their southern Californian Blood Conference. My topic was “How to be your own advocate”. It was a great privilege, in every way, to be able to give such a talk after 10 years of dancing with my CLL.

On April 2^nd, the CLL Society had an active table sharing CLL information and resources at the LRF Lymphoma Workshop in Manhattan Beach.

Both meetings had superb CLL breakout sessions, in Anaheim by Dr. Tanya Siddiqi of City of Hope, and in Manhattan Beach by Dr. Herbert Eradat of UCLA. Thanks to them both for donating their time.

At both meeting we collected signatures for those interested in getting a CLL support group going on the west side of the LA Basin. It you missed the meetings and are interested, please send us an email at support@CLLSociety.org and we will make you aware of our interest survey when it launches.

This week in the 2015 Conference Coverage section of the CLL Society website, we have posted an interesting article written by Dr. Zeev Estrov from MD Anderson Cancer Center describing the abstract they presented at ASH 2015 focused on exploring treatment options to address CLL fatigue. 

You can see a summary and view our interview on the website.

We are also gathering interest in forming 2 new patient and caregiver support meetings: Charlotte, NC and Tampa FL.

If you live in Charlotte, NC and are interested, please complete the online survey to indicate your preferences for days and times.

If you live in Tampa, FL and are interested, please complete the online survey to indicate your preferences for days and times. We look forward to getting started.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

http://cllsociety.org

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.

Strange Daze indeed

Since taking the Maid of the Mist boat tour to the thundering splash of the Horseshoe Falls of Niagara Falls, I have yet to recover my land legs.

I am walking in a fog. Maybe it is the Umberto Ecco book that I am reading about an antiquarian book dealer who lost his personal memory and now lives in a mental fog (I can get too lost in a book), maybe it is my weird disturbing dreams and disrupted sleep pattern,  maybe it's my diet, maybe all I need a strong cup of joe (organic and free trade of course) and a piece of pie with "rice cream", maybe it's just a bump in the road as I plan my return to work soon, and must come to grips with the prospect of doing this whole transplant dance one more time like I mean it.

The very wise Rabbi David Wolpe got it right when he said referencing his own lymphoma:

"WE ARE ALL IN REMISSION. IT'S JUST THAT I KNOW IT"

I couldn't say it better.

I will sleep on it.

But first, I must share some great news: I must kvell (Yiddish for burst with pride). My daughter, Heather found out today that she aced the New York bar exams.  No small accomplishment.