Luiz Health Update

It has been a while since I reported on Luiz´s progress (sic) in his fight with Chronic Lymphocytic Leukemia.

Mostly Luiz tries to ignore the fact that he lives with cancer and we take good advantage of the state-provided free bus transportation for him and myself. (It saves us a TON of money!)

Every two months Luiz goes to the national cancer institute in Rio for a check up. They do a blood workup and a physical exam. He is working with his fourth medical intern at this point. They are typically enthusiastic and thorough (although his last intern was a pain in MY @ss).

In any case... his visit last week showed him to be holding steady in his blood numbers (no progression of the disease) and remaining healthy as a horse (although common colds linger much longer than they should).

I am so proud of Luiz - and grateful to the goddesses that he remains healthy after four years post diagnosis. Keep it up - my love!

Thank you all for your kind thoughts and prayers on Luiz´s behalf.

Great news regarding Luiz's cancer situation

Luiz has been living with Chronic Lymphcytic Leukemia for a little more than four years. The good great news is that his condition has progressed in a nearly statistically insignificant amount since his diagnosis. (Although that is not to say the stress and anxiety has not been significant.)

The really good news is that medical technology/research in this area has been evolving by leaps and bounds. We are thrilled.

Check out this informative and hopeful interview with a physician in the field.

http://www.youtube.com/watch?v=Mx8cM47s3yQ

Luiz health update

I’m always nervous when we go to Luiz’ appointments at the National Cancer Institute. How will the blood tests come out? Will we get good results? Is he maintaining his slow-and-steady situation --- or will he move into the more aggressive stage of his disease?

In this case I can attest to his “slow and steady” progression.

At his last appointment we can report that he is at about (statistically) the same place he was one year ago. That is GOOD news. Luiz has to worry about progression when it starts to be very aggressive. That is NOT the case. His blood count numbers are very stable.

I could not be happier, nor him.

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'...

Check this out.

Luiz health update

After a quiet three month respite Luiz had to return to his cancer doctor for a check in. It is a two day process. First he has to go to INCA (Brazil’s National Cancer Institute, in Rio) to have his blood drawn to run the numbers. Then on the following day or so he returns for his scheduled appointment to get an update.

By now Luiz is accustomed to the 80 minute bus ride, to the point that he can fall asleep after boarding and wake up just before the hospital. But you never get accustomed to spending time in a public cancer facility. It can be a real body blow to your otherwise steadfast optimism and practiced tranquility.

On Tuesday Luiz and I made the trip to INCA for his 1:00 p.m. appointment. Unfortunately for us it was a day filled with drama on the hematology ward. There were a number of priority patients with late afternoon appointments that came in early and were seen in front of those of us scheduled to be seen right after lunch. We waited for more than two hours for Luiz’s name to be called. (Understandable, but not fun.)

Good news: Luiz’s numbers remain steady. There were barely notable increases in a few areas, but nothing calling out for attention. His physical exam showed no growth in lymph nodes. All good. As always Luiz and his doctor shared a few minutes of pleasant small talk, checked in on vacation plans and exchanged kisses and hugs. We are to return in another three months.

One other note about INCA. A few weeks ago I was in Paraty with my friend Beth and her daughter Cece. We were sitting at an outdoor luncheonette enjoying a caipirinha and struck up a conversation with a man sitting near us. Turns out he was the president of the Portuguese Hospital in São Paulo (apparently one of the larger facilities) taking a few days off with his family. Without tipping my hand I casually asked him what he thought of INCA in Rio. He said he hated to admit it (because the rivalry between Rio and São Paulo is such that residents of either never confess to the superiority of the other) but that INCA is the best there is, even better than anything in São Paulo. “That’s nice to hear,” I said.

While the news remains very positive, as I mentioned above, it always takes a toll on Luiz to have to wade into the CLL pool, even to receive good news. Please send some love his way.

Luiz health update

Luiz went to the cancer center today. We are always anxious about what might be reported.

His bloodwork shows absolutely steady numbers. In fact, his platelet count is dropping. This is good news. I love to see the line on that graph falling!

A full-on review shows that things continue to be present and a problem, but in the short run he is holding steady.

And the best evidence of this is that the docs have asked him to return in 3 months -- not the 2-month interval he has been practicing. If they are happy to slow their observation -- we are happy Luiz needs less frequent observation.

The world of Chronic Lymphocytic Leukemia is stressful on a daily basis -- but occasionally we get some good news.

Luiz is staying out of trouble.

Luiz's health update

Continued good news (relatively speaking) regarding Luiz’s health. After a two month period Luiz had a complete blood work-up. We met with a member of his team at INCA to discuss the results.

Overall he continues to progress at a very slow pace. Terrific news. Blood numbers continue to creep in the wrong direction, but slowly enough that for all practical purposes his status today is the same as it was two months ago. Although for those of us who worry, we see the progression in spite of the reassurance from the physician. (I actually graph the changes over time for a number of key indicators.) Luiz – our super sweetie – sees the glass ¾ full every day.

As an example of just how slowly Luiz’s situation is moving consider this: Treatment will be indicated when (among other things) his lymphocyte count DOUBLES over a thirty day period. That is, the level of non-functioning white blood cells gets to a place that necessitates their removal to make room for more functioning cells, so they can do their job.

In early November, 2008 Luiz’s lymphocyte count was 18,485 (normal range is 800 – 4,500). In early January, 2009 (a sixty day period) the count was 19,376. That is a near 5% increase. Remember, the bells go off when there is a 100% increase in just thirty days.

He is scheduled to return in another sixty days. If things keep up like this he will then be asked to return after ninety days. Not much going on. It’s all good (in this bad world of chronic lymphocytic leukemia.)

Thanks again for all the supportive wishes you all have sent Luiz’s way.

Luiz's very positive health update

The short story is - Luiz's doctors have now asked him to come in every two months (rather than monthly.) In other words there is very little progression of his chronic lymphocytic leukemia so why stress ourselves with monthly visits?

So Luiz gets the holidays off and only returns for a check up in mid January. YEAH!!

For those of you following along at home, Luiz's complete blood count shows very steady numbers, mostly in the NORMAL range, while his platelet count (on the low side) has actually been RISING over the past three months! While some other numbers are outside of normal ranges, they remain barely so - and holding. His most recent physical exam showed no growth in lymph nodes.

In other words - everything is great!

Maybe it is the Green Tea extract Luiz takes twice daily (my idea - limited research at the Mayo Clinic shows this to be a good idea), or maybe it is the herbal tea Luiz's mother got for him from a healer in southern Brazil (6 months of twice/daily doses), or maybe it is your thoughts and prayers (always appreciated), or maybe it is Luiz's unique biology and the biology of his cancer - who knows? But we are delighted to enjoy an extended period of calm. Let's hope it streatches out into the years to come.

In the mean time - research for improved, effective treatments continues to show promise. I am grateful to Dr. Chaya Venkat and the CLL Topics website community for keeping me informed.

Luiz health update

Luiz went to his monthly doctor appointment at INCA today. His mother accompanied him. Good news overall.

You will recall that with Chronic Lymphocytic Leukemia things progress slowly, if all is going well. We’re delighted to report that things are going well.

Luiz is going monthly because from among the half dozen or so markers that indicate a more negative prognosis he has one such marker. It is a more obscure marker – not among the real zingers, for sure; but a marker all the same. So his team wants to keep a close eye on progression. Thus the frequent blood tests and reviews. We appreciate the careful scrutiny. Although spending time at a public cancer facility takes its toll.

A recent CT scan taken here compared to the scan taken in December in San Francisco revealed no progression in terms of lymph node or spleen swelling. VERY good news.

Blood counts continue to show very slow progression. So we settle back into “watch and worry.” But it is definitely good news overall.

As a lighthearted aside, Luiz has been coached by his social worker to say the words "I am diabetic" (which is true) when he goes in for his monthly blood draw. Those magic words result in a parting of the crowd, taking him to the front of the 40-person line waiting for their lab paperwork. Then again to the front of the 15-person line of those waiting to be poked. We can get in and out in less than 15 minutes (otherwise a two hour ordeal.) We are grateful for mundane conveniences.

Thank you for all your support, prayers and well wishes. It makes a real difference for Luiz and I.

Luiz Health Update

We’ve initiated a public-private partnership in Luiz’s care. By bringing together the private healthcare system (read: faster, more convenient, less upsetting) with the foundation-supported public resources to fight cancer (read: high end research and treatment facility where everything is free) we’re planning to reap the best of both worlds.

Luiz is now a patient at the National Cancer Institute in Rio de Janeiro (INCA). INCA is a technical branch of the federal government and administered by the Ministry of Health. It is THE place for cancer care in Brazil – and just happens to be a 40 minute drive from our apartment. According to their website “INCA’s outcomes are comparable to the best oncology centers in the world.”

We did not fire our oncologist, Dr. Roberto. He is a perfectly nice man. Super polite and engaging, enthusiastic, bilingual, and very easy on the eyes. But he is not a specialist in Chronic Lymphocytic Leukemia. That’s the only shortcoming. No offense meant or taken, but we had to expand the team to get more expertise on the case.

We are delighted to have made this transition. Our friend Ana Cristina went with Luiz to help walk him through the enrollment process at INCA. (Her mother is a recent colon cancer survivor and was treated at this facility.) They arrived at the center at 6:30 a.m. and snaked their way through the bureaucracy, including three levels of admissions assessment and finally a medical history and physical exam by two separate oncologists, the latter of which eventually assigned Luiz to a lead doctor. They left the center at 5:00 p.m.

Luiz was given another long list of blood tests to be taken. We have some recent results, but the folks at INCA want their lab to provide results. OK by us. More info is better. Oh, and did I mention that EVERYTHING is free? Plus, Luiz qualifies for a free bus/transit pass to enable him to get to and from appointments (and anywhere else he wants to go!)

Dr. Roberto, whom we saw today, is sending Luiz out for another CT scan to get new pictures of his lymph nodes. Comparing the scan from December in San Francisco with the new scan will help gauge any growth, clues toward assessing the onset of treatment.

As is always the instruction at the end of our visit – we are to “watch and wait.” Luiz is not yet to the point where any treatment is indicated, but we can hear the clock ticking.

Do keep Luiz in your thoughts. This is not fun.