Wonderful health update for Luiz

There is good news great news on the treatment front for Chronic Lymphocytic Leukemia (CLL). We care about this because Luiz is a CLL patient.

It has been all over the news, but I have been waiting for our trusted ally Chaya Venkat over at CLL Topics Updates (a top-notch CLL patient information and advocacy blog) to weigh in on the real story. She is brilliant on the subject and loved by many for her tireless advocacy and work translating medical research papers into plain English for the rest of us.

[Go to her blog and GIVE HER A DONATION! Medical conferences are expensive, and happen all over the world. She is a saint. Really.]

I will not pretend to be a medical researcher, but suffice it to say that some folks have figured out how to modify a CLL patient's own T-cells (the little guys who patrol your body and kill the bad cells) then reintroduce them into the patient whereupon they specifically attack and kill the cancer cells.

Preliminary results have been outstanding. So far patients have been in complete remission for 10 months (since shortly after the clinical trial was begun).
This is good news for our Luizinho.

Is this a cure? – no (not proven as such just yet). Is this available now? No, only in clinical trials. Is this a great breakthrough? Very smart people say YES. Are there risks? Yes.

Does this make us happy? YES!

News in the press is here: MSNBC ;   Yahoo News ;   New York Times ;  CBS News

Luiz health update

More or less every two months Luiz treks over to the National Cancer Institute in Rio for his periodic checkup.  Actually he does it twice, one day to have blood drawn (he has to get there early, they stop drawing blood at 8:00 a.m.) and then again a couple days later for the consultation.

His appointment is always 2:00 p.m., which is really more like they have a morning batch of patients and an afternoon batch of patients.  The afternoon batch begins 2:00 p.m. So inevitably he sits and waits in the ever-so-depressing waiting room. That said, yesterday Luiz waited 4 ½ hours before he was called in. (I was not there because Luiz would not let me come along – I got into a near shouting match with the arrogant, smarter-than-thau, “shut up and just do what I say” young medical team leader last time over a simple question.)

Luiz’s current doctor indicated that (for some reason) Luiz’s spot is almost at the end of the day, so he will always be called near the end.  Oh really – was someone going to tell us this?  His appointment slip always says 2:00 p.m. – but if their secret scheduling thing in the back has Luiz never seen before 4:30, why not tell him that? Needless to say Luiz was exhausted by the time he got home.

On the bright side – all of Luiz’s Complete Blood Count numbers were wonderful.  Things remain stable and some ticked in the better direction. Our “Watch and Wait / Worry” period continues.  It has been nearly three years since Luiz’ Chronic Lymphocytic Leukemia diagnosis. He continues to maintain a healthy state of affairs.

This time around I’m going to add a health update for myself.

I’m about 15 days post gastric bypass surgery. I feel great, my doctor assures me all is going well, and I’m out walking twice a day. By Monday I’ll be up to 70 ml of puréed food every 45 minutes. Oh the possibilities! I’ve lost nearly 30 pounds.

Thanks all for your well wishes.

Luiz health update

It has been a while.  That’s a good thing. Things will be going poorly for Luiz when things start to change quickly. Nothing has changed much for Luiz in several years. Graças a Deus.

Our last visit to the National Cancer Institute in Rio (INCA) was remarkable only in that we now have another in a series of interns looking after Luiz’s case.  Our last doctor, whom we loved, has been reassigned. The new doctor is a bit shy and made less than a top-notch impression.  Her supervising physician was in the room the whole time – and frankly, I spoke with him, not her, when I had questions.

I’m sure she will be fine.  Luiz is, after all, attended to by the TEAM at INCA, not the physician in training who meets with him during this period of his care.

His blood count numbers remain stable and some have even improved.  Luiz is a remarkable Chronic Lymphocytic Leukemia patient who has refused, over these past three years, to decline into mortal combat.  For now he is staying above the fray.

If you know Luiz you know that his secret weapon is his joyfulness and remarkable ability to live life every day to its fullest.  No bit of daily happiness slips past him.

Thank you to everyone who keeps Luiz in your thoughts and well wishes.  It means a lot to us.

Luiz health update

Another two months – another stable health check-up for Luiz. 

Sometimes Luiz can’t help but feel a lump on his shoulder (lymph node) or think that the casual infection in his finger just won’t clear up, or discover a dark splotch on his skin and think: “This damn Chronic Lymphocytic Leukemia (CLL) is slowly but surely taking hold and weakening me.”  But then we get the raw data from his complete blood count and are reminded that he is nearly as healthy now as he was three years ago when he got his diagnosis.

You can’t run away from the thoughts that are going to naturally pass through your head:  good ones and bad ones. But it pays to clarify things with periodic blood tests.  Not every tired afternoon or common cold is a sign of CLL lurking in the wings.

I recently had an English student who is a psychologist and holistic medicine Masters student.  She has worked with cancer patients for nearly 20 years.  Lenice said 100 times during our classes how important living a life of happiness, sans stress, is for the survival and quality of life of people living with cancer.  Overall Luiz continues to be a model patient in this regard.  I am SO glad we moved to Brazil for so many reasons, but one big one is the low-stress lifestyle.

This week we are celebrating another check-up that shows Luiz continues to do just fine.  Thank you to all of you who keep Luiz in your thoughts and well wishes.

Oh – one more thing.  We discovered, while at our appointment at the National Cancer Institute in Rio, that patients are entitled to free meals in the cafeteria when they come for appointments, and should the patient be staying in a ward, their companion who is holding vigil is also entitled to free meals. (Public health facility = lots of poor people.)  You are not going to survive your cancer if you can't get a decent meal once in a while.  Are you listening USA?

Luiz health update

While this darn “watch and wait” period drives us crazy, Luiz’s Chronic Lymphocytic Leukemia seems to have found a nice and stable path that it has been sticking to for the past 33 months.

Luiz makes the trip to the National Cancer Institute every two months (or as my Brazilian English students would say: “every two and two months”) for a check up. Honestly, the stress of the bus ride over followed by sitting in a stuffy smelling, overcrowded, public cancer facility waiting room with patients in all stages of their disease – is sure to be worse than just a phone consult if his complete blood count numbers have not changed in any real way. It’s always good to get a physical exam, for sure, to check for swelling of the lymph nodes, but perhaps that could be every four months.

But hey, I’m just the guy who wants to spare Luiz the hassle and discomfort.

[Happy blood]

We’re happy to report that all of his indicators remain stable and any change is within the margin of error. His platelet count went up again this time. My favorite.

I never get tired of reporting that his disease indicators are nearly identical to his time of diagnosis.

[Blood, like Luiz's, struggling to stay happy]

Thank you everyone for you support and words of encouragement to the both of us.

Luiz health update

Last week's visit to the National Cancer Insititute in Rio showed that Luiz continues to maintain stable complete blood count numbers with most indicators within or nearly within normal levels. In many cases the fluctuation is within the margin of error. We like that.

It has been two and a half years since Luiz was diagnosed with Chronic Lymphocytic Leukemia. In general his numbers are nearly what they were at the beginning of this “watch and wait” (wait and worry) period of the disease. There are some patients who remain in this stable period for nearly a decade before having to address a more aggressive stage. We continue to believe that to be the case for Luiz.

If a positive attitude and joy in your heart has anything to do with maintaining good health then Luiz is likely to outlive us all. He truly is an inspiration to others and brings a smile or a laugh to everyone he comes in contact with. Heck, even the house plants love him! Lucky me. Lucky us, to have Luiz in our lives. Hang in there sweetheart. We love you.

Luiz Health Update

Short and sweet: We went to the Cancer Institute last week. Luiz's Complete Blood Count numbers are stable. Some have improved (his platelets count is now actually hovering in the normal range!) and those that have progressed in the wrong direction have done so only within the margin of error included in the measurement.

It was nice to hear the doctor remark on the negligble progression from one year ago. So often we focus on the incremental changes and Luiz is frequently saddened by the slow march forward. But at this stage of the Chronic Lymphocytic Leukemia game we really have to keep a perspective that looks out over a longer time period to be reminded just how stable his situation has been and continues to be.

Luiz Health Update

Even though our heads understand that Luiz’s Chronic Lymphocytic Leukemia is behaving itself and not getting too excited in his body, trekking over to the National Cancer Institute for his quarterly check-in is always a bummer because somewhere in our guts we can’t extinguish the worry that things might change. Maybe this visit will bring bad news.

Well, not this time. Luiz’s latest blood counts show he continues to be in very good shape. And once again, his platelets count went up. (That’s good.)

For the CLL geeks: Luiz’s Absolute Lymphocyte Count (ALC), while climbing, has been moving at a snail’s pace. One of the guidelines physicians use in monitoring progression of CLL is to look at how fast the lymphocyte counts are increasing. The measure used is the time taken for ALC to double. A doubling time of one year or more is considered a hallmark of a slow, indolent disease. Over the past TWO YEARS since Luiz was diagnosed his ALC has increased by only 46%.

Again, his blood count trends continue to report nothing but good news (within the bad reality of being a CLL patient).

Thanks again for all your concerns and well wishes. Luiz soaks them up like a smiling sponge. Next appointment: January 2010.

It's all good. Luiz -- I gotta feelin'...

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