A Perfect Storm

I realized that it has once again been over a year since I posted anything. I guess that is a good thing in some ways, but it really doesn’t mean that nothing is going on. It is like a moving target where I am constantly adjusting my aim. Most of this last year has been pretty uneventful, but during this last week, a number of events have happened to create a Perfect Storm.

In my last post I had restarted the drug that I had done so well on the first time. Once again, it worked well keeping me stable for about 5 months, but then my counts started going up again. So, in October of 2022, we decided (I actually proposed it to my doctor and he agreed) we added back the first drug I was taking before, hoping that the added efficacy could turn this around once again. This seemed to be working and keeping me stable until this last week. Although my blood numbers still look good, there is another test they run to find the CLL cells in the blood. Every time I go in, they run this test called a Flow Cytometry. Since October, this number has bounced around a bit, but always a low percent, which meant I was stable. Unfortunately, this week the number quadrupled, moving it to a level, that is beginning to create a cause for concern. This started a flurry of messages between myself and my medical team. What to do next. I am one of the unfortunate CLL patients that have pretty much exhausted all approved treatments. There are a couple of stopgap treatments we can try but this will only put off the need for a DIFFERENT treatment. There is one drug that is close to being approved and we put in for insurance to cover it, and they denied it once, and then again denied it under appeal. We then went directly to the drug company to try to get it under compassionate use and that was also denied. My doctor told me Friday and they are going to try once again based on my increasing disease load, but I am not holding my breath. I am just praying that I can hold out for this drug to be approved in the next several months. It has been shown to be effective in patients that have failed all the drugs that I have taken, so we are hopeful.

I had previously mentioned that I was diagnosed with Prostate Cancer in 2021, but was put on Active Surveillance, but this situation has also changed. The hope was that my PSA would stay stable for a long time. My last MRI in June of 2022 showed that suspicious areas around the prostate had remained about the same size. But since that time my PSA has been slowly rising, which caused my Urologist to request another MRI to be run this month. Unfortunately, my PSA results I got this week showed a 50% increase in the value. Not good…..This means that the MRI will almost certainly show a growth in the prostate, which will mean treatment.

This new change is the reason I would not be eligible for any clinical trial option for my CLL. In almost all Clinical Trials you cannot have another active cancer diagnosis. While I was on Active surveillance, a clinical trial for CLL would have been an option, but now this change in my prostate cancer has taken that option off the table. Now if I could remain stable with my CLL long enough to go thru a treatment for the PC, then I would once again be eligible for a CLL clinical trial, of which there are several that I might be interested in.

I am still pretty active as a CLL patient advocate and putting in time working for the CLLSociety.org. I have done a number of presentations for medical education companies, interviewed several of the top CLL doctors in the world for webinars, and am a patient advisor on a Cancer Mental Health and Wellness panel.

On the family news front, our daughter-in-law Randi finished her PhD at Berkeley, and got a job at Auburn University at the Jule Collins Smith Museum in Alabama. So, Matt and their whole family moved to Alabama in the middle of last year. Our daughter Aimee and her family had moved to Arizona a couple of years ago, and then in June of 2022 decided to move back to the cooler climate of Huntington Beach. On a sadder note, the patriarch of the Barden family, Donald Vincent Barden passed away last May at the age of 103. Don always treated me as a member of his family and he was loved and respected by many.

It's Been a While

 

“I am alive and well and unconcerned about the rumors of my death. But if I were dead, I would be the last to know.”
― Paul McCartney

I don’t even know where to begin.

My last update and post were in March of 2021.  So, this is NOT going to be a short post, and to those looking forward to that, I apologize.  But before we go on, I want to let everyone know that I am doing fine. 

In December of 2020 I stopped one of the two drugs I was taking because I was doing so well.  I was hoping for a long remission.  That lasted exactly 4 months.  In April 2020 they ran a very sophisticated test that looks for CLL in a million cells.  Up to that point they had only looked at 1 in 100,000.  And lurking in the background, they found some CLL cells.  Not enough to cause great concern, but enough to know that I would be progressing once again.  As with most things CLL, I had some time to decide on what to do.  I would have loved to have entered another clinical trial, but there were very few options open to me and those that I may have considered required quite a bit of traveling to the East Coast.  So, I just waited.  Everything really progressed slowly until September, and then things started taking off.  Once again, I was forced into making another treatment decision.  Based on my previous success with the drug I stopped in December 2020, it was decided to add that drug back into the mix.  

So, I re-started the drug at the end of October.  This is now my 7^th course of treatment over my almost 22 years living with CLL.  At the end of four weeks on the additional drug, I was responding again.   So now, five months out, all of my numbers are in normal range once again, and the sophisticated test they run to show HOW MUCH CLL is still there now shows only about 1.7%, which tells us that I am responding pretty well to being back on the drug.   The bigger question is how long will this last?  And that is a question that no one knows the answer to.  In planning for my next steps, I have been talking to all of my CLL doctors (I actually have 3) getting them to weigh in on what my next treatment plan should be.  Right now, there are really no really good off the shelf treatments.  There are a couple of things that MAY work, but no clear-cut winners.  The hope is that restarting this drug will give me a couple of years, and by that time there will be another ‘next greatest thing’ out there that can take care of me.  So really, I am just kicking the can down the road. 

In the first week of the new drug ramp up (which takes 5 weeks) I suffered a ruptured calf muscle.  Ouch….  It was not a great experience.  I was basically bed ridden for almost 2 weeks.  I could not go up the stairs.  I went to Urgent Care twice, went to the ER once, had TWO ultrasounds (to check for blood clots), one Xray (to check for broken bones) and 2 visits to the orthopedic doctor.  All of this while wearing a boot, using a walker or a cane.  You really don’t appreciate being able to walk, until you can’t (can you confirm this, Rick?).  I finally got back to normal, and on the upside, I can still walk 18 holes of golf.

If that was all that was happening, I could stop there, but……Being a male over 70, I have had my PSA checked on a regular basis.  It has been slowly going up, but not alarmingly high.  That all changed around March of 2021 when it almost doubled.  At the suggestion of my urologist, I had a MRI, that indicated that there were lesions that were suspicious.  Based on that, I had a prostate biopsy.  The initial results confirmed that I did have prostate cancer, two of the cores were low grade and one was intermediate grade.  With that news, I started my research on what to do.  I saw 4 different prostate specialists at major medical centers.  I compiled all the data I could, learning from my CLL journey that information is power.  I looked at different treatment options, and was this close to making a decision on how I was going to treat it.  But wait….it gets better.  Another test that was suggested was the DECIPHER test, which measures the aggressiveness of the cancer.  The results were interesting, they came back on the lower end of the scale, which usually means the cancer is not that agressive and usually will not metastasize to other parts of the body. One of the doctors had suggested that he was not completely comfortable with the biopsy analysis (which was actually done by his medical center pathologists) and he suggested that we send my slides to the world prostate expert at Johns Hopkins for his review.  In researching prostate cancer, this was a very common suggestion, and one I was going to ask for anyway.  Four weeks later I got the results back from them.  There is bad news, and REALLY good news.  You ask, ‘how can that be?’.  In analyzing the slides they came back with 4 cores that had cancer instead of 3, BUT…..none of the 4 were intermediate, and they all were low grade.  This really turns things around, and the overwhelming recommendation is that I go on Active Surveillance, and we just watch the PSA and do another MRI in 2022.   This was a huge relief because this was all happening at the same time, I was going to have to modify my CLL treatment plan, which would have made it more complicated.  What I have learned in dealing with my CLL is to educate yourself as much as you can, don’t make hasty decisions without all the information.  If I had not gone the extra step in analyzing my prostate situation, I would have had treatment a week after my biopsy, but instead, I am able to wait and see how it progresses with not much of a downside.

But all that aside, there has been cause for joy in the last year.  In February, our youngest daughter and husband gave us our 12^th grandchild, Chet Daniel.  We were fortunate to be able to spend some time with her and her family before, during and after the birth. 

All of this was happening at the same time we were doing a major remodel on our kitchen and family room.  We started that project in June of 2021 and we were 97% done until last week.   We then sprung a water leak that covered parts of our newly finished wood floor, parts of a cabinet and walls.  We were so blessed that we were home when this happened because we had been in Arizona for a month in February, and I don’t even want to think about what our house would have looked like if it had gone unchecked for that long. They are now in the process of putting it back together, and who knows how long it will take to get it back to the way it was.  

I have learned not to hold my breath on construction related issues.  Based on our project, I can tell you every excuse in the book for delaying work.  Supply chain issues, I have COVID, my guy got COVID, I can't get the permit because City Hall is closed because of COVID, I have a vacation planned, we have to let that sit for a week, my truck broke down, I didn’t put THAT in the estimate, I can’t get the product until you give me a check, and my guy is on another job and we ran into problems.

This month also marks the end of an era for me as I have stepped down from the Board of Directors of the Long Beach City Employees Federal Credit Union.  After serving as a volunteer for over 30 years, I felt that the timing was right for me to allow others to step into this role.  I was my pleasure to serve all of those years, and it not only enriched me personally, but educated me financially. 

“And, in the End”….I feel very blessed.  I am getting to see our children become great parents and our grandchildren grow up.  And in May, I get to write off another item on my bucket list, seeing Paul McCartney in concert.

TE

Time Flies When You are Having Fun (or NOT!)

I can’t believe that it has been almost 9 months since my last update.  So, first things first.  Yes, I am alive, well and still kicking.  End of Short Report.

The world is still a very strange place, not at all what we were used to a year ago.  As an immunocompromised patient I have been a little more careful than the general population because the preliminary statistics for CLL patients that are hospitalized, is pretty grim.  Between 25-30% mortality.  Granted this information is from very early in the pandemic and the courses of treatment have changed for the better, but it still gives me pause to be cautious.  Bottom line, ‘stay out of the hospital’. 
But, as with everyone, the world doesn’t stand still.  I still have doctor appointments, some I can do via telemedicine, but some have to be done in person.  I had a long overdue colonoscopy in May and it was a good thing I did, as they found 7 polyps (all benign) and they removed them. I do need to make a dentist and eye appointments, which were put off because of the pandemic. 

One sad piece of news is that my father, Paul Henry Evans, passed away in September.  He was almost 94 years old and had been in failing health for about 6-12 months.  He did not die of COVID, but his passing was a huge loss for the family.  We could not have a funeral, so we had a Zoom memorial service which was nice in some ways, but very sad in other ways.  He will be greatly missed by many.

So, to update my CLL journey, here is a refresher.  I won’t go back to 2000, the year I was diagnosed, but will start with my last 2 (out of 6) treatments.  If you remember, in 2013 I was allowed to crossover and start taking a new class of drug called Ibrutinib.  I was part of the Clinical Trial the FDA used to approve the drug for all CLL patients.  I had very good luck with Ibrutinib and remained in Clinical Remission until January 2018, or 4 ½ years after I started.  In January of 2018 things started to change very slowly, and both myself and my doctor could tell that I was relapsing, even if it was at a very slow pace.  I started look around for my next steps and was disappointed to find that there were almost NO options for a patient with my treatment background.  Because of prior treatments I was excluded from almost every option of treatment.  I guess my situation got my doctor’s attention because he CREATED what is called an Investigator Initiated Clinical Trial.  This is a case where the medical team proposes the treatment protocol and the drug companies agree to let them initiate it.  I wound up being patient #1 on this trial.  The new trial allowed me to stay on Ibrutinib, mainly because it was still working, just not as well as before, and because he wanted to add another drug (Venetoclax) to see if there could be some synergy using both drugs at the same time.  There had already been some preliminary studies at this time that had shown that they worked together in front line settings, but not much data on people like me, in a relapsed setting.    As you may have read in previous posts, this combination for me, was amazing.  Within weeks of starting Venetoclax, my blood numbers were all back in normal range.  After several months there was a test done to see if they could find ANY CLL cells and the test came back negative. 

This was all great news, but we had to now figure out what to do.  I know this may seem strange to many of you, because the logical thing to say is ‘keep doing, what you are doing’.  But it is never as simple as that.  Most of the trials that had been done with Venetoclax had been done in what is called a ‘fixed duration’ setting.  Which means, you take it until you test Negative for disease, and then you stop.  I think the main reason that this was done, is if you continue taking it, would there be a possibility that even if you are negative, would you develop resistance to the drug after some period of time?  Because my particular situation does not fit into one of the categories that were done in earlier trials, we had to decide on what to do after I became Minimal Residual Disease Undetected (of MRDu).  So, we kept on having tests to measure for disease, first in the peripheral blood and then thru a deeper test using the bone marrow.  Tests were run at different intervals and they all have come back negative.  But in October of 2020 we were at a decision point.  ‘how much value was I getting by staying on Venetoclax?’.  The short answer is that no one knows.  But a couple of points led me to a decision that I should stop the Venetoclax, but remain on Ibrutinib.

 
First off, I had not relapsed on Venetoclax.  It was still effective.  If I had relapsed while on Venetoclax, we would know that it had STOPPED working and I would have to find another class of drug.  There were also some studies published in December that in a small group of patients that stopped Venetoclax while they still had no disease, and then relapsed, they were able to RESTART Venetoclax and they mostly had very positive results upon restarting.

Secondly, I had to pay for the Venetoclax on the trial (the Ibrutinib was paid for by the pharmaceutical company).  It is a very expensive drug, retail cost about $12,000 / month.  If you don’t have Medicare Part D for prescription drug coverage, forget it.  Luckily, I do have a Part D plan, even with that and falling into what they call Catastrophic Coverage in the FIRST month of the prescription, you still have a lot of out-of-pocket expenses (about $10-12,000) per year.  The coverage is base on Calendar year, no matter when you started.  So, in my case, this bill would have hit in January 2021. 

Thirdly, I was still having some Adverse Events (fancy name for side effects) that we were not able to control completely.  I won’t go into detail, but let’s just say I had some GI issues.  So, stopping the Venetoclax would hopefully clear those up as well. 

Based on all of that, we decided to stop the Venetoclax on December 31, 2020.  Now the real question (and the reason for this post) is what will happen to my CLL after I stop.  I am happy to inform everyone that I just got the results back from the test that was done on March 10^th and they still cannot find any disease. 

Good news for sure, but it is never the end.  The question is what happens when I relapse again?  Certainly, my situation was not as dire as it was in January 2018, when there just weren’t many options, but there still needs to be a plan in place as to what to do when that happens.  My first option would to go back on Venetoclax and see if it would work again.  My second option would be to look at a third-generation version of Ibrutinib.  This newer version is supposed to ignore the mutation that caused me to start relapsing on Ibrutinib.  There are also several new and exciting drugs that are in Clinical Trials, but I don’t know if I would qualify for one of them or not.  My last option, but maybe the most important one that I am considering is something I have mentioned before called CAR T therapy.  It is in Clinical Trials right now and has the potential of completely getting rid of the disease.  I know of several people that have done this and they are disease free after 3 years.  This one certainly looks like a potential ‘cure’.  There are no guarantees with this treatment as it doesn’t work for everyone, but it is certainly on my radar and actually have an appointment in April with a doctor at City of Hope that specializes in this treatment for CLL patients. 

I know there is a lot of talk about the COVID vaccine and how it may be a way out of this pandemic, but for those of us that are immune compromised it is still not a pretty picture.  Because our immune system doesn’t work the way that it does in normal people (I’m not saying I’m abnormal, just different), we really don’t know if we will develop any response to a vaccine.  This is not only true for the COVID vaccine, but also for pneumonia, flu, tetanus, etc.  I hope I got some response to the vaccine, but only time will tell how effective it really is going to be, how long it will last, and will we have to get another one next year, like the Annual Flu Shot.

I am still involved in Patient Advocacy and still leading my support group.  I have also been involved in several online webinars with teams of doctors discussing the patient’s role in dealing with CLL.  I have been interviewed for two podcasts, one published, and one yet to be published where I discuss my journey.  Here is a link to the Podcast that was done for THE GREG KRINO SHOW  (Click the link to listen to the show).  Greg has created a Podcast where he interviews people that have had interesting life experiences.  I was fortunate to have been interviewed by him for his show.  Check out his list of over 30 Podcasts.  His Facebook Link  The Greg Krino Show Facebook Page .

See you again in another 6 months or so…ha ha.  I hope you all stay well.
Terry
 

Time for an Update

I realized my last post was in November, 2019. Boy, has the world changed since then. With everything that is going on in the world, my post seems very insignificant in the scheme of things, but there are a couple of important things I would like to share. Most of you would suspect that no news is good news, and you would be correct. In my last post, I reported that they could not find any disease in the multiple tests that they had run over those last 17 months. Last week, they ran another test (Flow Cytometry), which was at the 24 month mark on the clinical trial, and once again they could not find any evidence of disease. End of Short Report.

In my latest test they once again tested a large number of cells. According to the pathology report over 700,000. The exact wording on the report was '<1% in 750,946 events'. So what they are saying is that they could not find any leukemia cells in the sample they took. I guess the <1% means that 'we couldn't say there were NONE', but this is a pretty good indication that even if there are some, it is at such a low level they can't even measure it.

So what this means is unless there are some surprises that happen between now and my doctor's appointment on July 2nd, I will stop one of the two drugs (Venetoclax) that I have been on for 25 months. I will continue to take the Ibrutinib and we will wait to see what happens. Hopefully, I will get a long remission this time before I have to move on to the 'next new thing'.

June the 10th, was actually the 20 year anniversary of my CLL diagnosis. When I look back at this journey, it is hard to believe not only all the changes that have happened in the treatment landscape for CLL , but the changes that have happened with our family during that time. You may not remember, but at my diagnosis, I was given a 5-10 year survival. But more interesting was that NONE of the drugs I am taking now were even in Clinical Trials when I was diagnosed. After a disastrous start to my treatment in the beginning, I was fortunate to have switched to one of the top medical teams in the world for CLL. I can honestly say that without the team at UCSD, I would not be alive today. I have also been very fortunate to have participated in the trials for both of the drugs that I am on now (Ibrutinib and Venetoclax) that happen to be 2 of the most significant drug discoveries in the non-chemo treatment of CLL.

When I was diagnosed, none of our children were married. I wondered if I would ever see that happen, and if I would ever get to see any grandchildren. Last June grandchild #10 was born to our Berkeley son and daughter-in-law, and in February of this year, #11 was born to our Arizona daughter and her husband. How amazing is that?

I continue to participate in the CLL Society support groups, and we have successfully converted all of our 33 in-person support groups to VIRTUAL groups. It is very different than meeting in person, but the good thing is that we can still meet and support each other, even if it is over a Zoom meeting. Personally we are trying to maintain our social distancing, having Zoom parties with family and friends, wearing masks in public, and staying clear of sick people.

Stay safe and be well.

A Milestone!!

I just realized that it has been 6 months since I last posted an update, and I guess I need to share some greatly anticipated news.  If you have been following my journey (blog) for a while you might remember that I entered my 3rd clinical trial in May of 2018.  Even though the initial results were very promising, there needed to be one more test to determine how well I was actually doing.  So in mid October, they did a bone marrow biopsy to determine how deep the remission actually was.  I have since gotten the results of this test, and THEY CAN FIND NO EVIDENCE OF DISEASE.  End of short report (you know who you are).

This confirmed two previous tests that they had run but with much greater accuracy.  The test is looking for one cell in 100,000, but if I read the report correctly, they actually tested over 434,000 cells.  Don't ask me how they do this, it is way beyond my pay grade.  This does not mean I am CURED, but what it means is that in the area they evaluated they could find no disease.  If they can't find any disease in the bone marrow (called  Minimal Residual Disease Undetected (MRD-) it has been shown that you will probably have a longer remission.  Cancer is a pretty sneaky disease.  It can hide out in places they can't test, it can mutate, so it goes around the pathways that are being blocked by the medicine, or it can decide to change into something else.  I am not naive enough to think that I'm over all of this, but I will say that this is the FIRST time in over 19 years that they are unable to find any disease.  I still continue to look at possible next steps, if and when I relapse once again.

The question now is what do we do?  Remember, I am on two pretty powerful medicines, so we could stop one of them (which one, I am not sure), we could stop both of them, or we could do nothing and keep taking both of them.  I have an appointment in mid November to try to figure some of this out, but I doubt we will come up with an answer at that time.  All of these scenarios  have a lot of unknowns associated with them.  That is why it is a Clinical Trial.  To be honest, they just don't know yet.

All in all, I have been feeling pretty well.  A few nagging side effects, but I deal with them, plus, they may or may not be caused by the medicines.  Feeling well has allowed us to do some traveling.  We have visited our kids who live out of the area, and had a couple of big trips, one to Israel, and one to Kauai.   We are looking forward to Christmas, when all 10 of our grandchildren and their parents will be around to celebrate the holidays.  I am still doing work for the non-profit, the CLL Society, and still lead the Orange County support group.  I have also been asked to do some speaking for another group, and should start that after the first of the year.  I hope sharing my story in some small way, helps others who are dealing with CLL.

I am truly a Blessed man.

Terry

You Can't Find WHAT?

If you have been following my blog you know that I have been on my 3rd Clinical Trial (and 6th treatment) since May of 2018.   I last reported in November that everything seemed to be going well but a couple of things have happened in the last month that have caused me to post now.  In March I had my 10 month CT scan and it showed a remarkable decrease in my lymph nodes.  Because of this, and because my blood numbers had all been in normal range for over 9 months  I asked my doctor if we could run a Flow Cytometry test which tries to find any abnormal (CLL) cells in 100,000 cells.  So on Wednesday they drew blood and ran the test.  I got the results back from my Clinical Trial Coordinator on Friday, and she told me they could not find ANY CLL cells in my blood.  End of Short Report.

These results have GREAT significance because it is the first time in almost 19 years that this has happened to me.  I have been close a couple of times, but I have never gotten to this level.   We will run another test in a month to make sure this wasn't a fluke, but all indications are that it will be the same.  Another reason why this is significant is because it also gives hope to other patients like me.  I am considered HEAVILY Pre-treated, and I have most of the BAD markers.  All of this means that I am a really tough patient to treat.  People in my situation really are running out of options, and if this continues to work, it will give hope and options to other patients like me.  For me to get to the level of having NO disease is nothing short of amazing and some might say a miracle. 

Now this does not mean I am cured, it just means that right now they cannot find any disease.  It is considered the deepest remission that you can have.  The hope is that this will last a long time.

I continue working with the  CLL Society which is dedicated to helping CLL patients in educating and supporting them in their journeys.   We have now started 31 support groups in the US and one in Canada, and I am proud to say that I have been involved in starting all of these groups.  My personal belief is that you should be your own advocate and the way that you do that is by having the best medical team you can get, by educating yourself as much as you can, and by joining with others that have CLL.    A very close friend of ours was recently diagnosed with CLL and I hope that I was able to provide some useful information to her.  I didn't have that when I was first diagnosed.  I knew NO ONE with CLL and felt like I had to totally depend on my doctor's information.  That is why groups like the CLL Society are so important to create Educated patients that are able to make informed decisions with their medical team and to join a community where people can learn from other patient's experiences.

As Red Skelton used to say (if you don't know who Red Skelton was, look him up)

Good Night and God Bless

The Results are IN!

It has been 6 months since I started my new trial and yesterday I got the results of how it is going so far.  Based on the CT Scan and the Bone Marrow Report I am doing VERY well.  End of short report.

I am going to get a little medical here, but I hope that my explanation will make sense to most people.  If you remember, in January it was determined that even though my numbers weren't off the charts there were indications that my trial medicine (Ibrutinib) that I had been on for 4 1/2 years was just beginning to be less effective than it had been.  Because of my previous treatments and my poor genetic markers, my options had become limited.  I searched all over the country for treatments that would fit my circumstances, and really did not find anything that fit my situation. I was willing to travel, willing to enter another Clinical Trial, my timing wasn't right and there were only a couple that might have been opportunities, but they all had some issues.  Once again in my 18 year journey, 'right place, right time' happened.   Dr. Choi , my doctor, told me he was creating a trial for people just like me.  I would remain on my old drug, Ibrutinib, and we would add a new drug, Venetoclax.  The idea was that the new drug may once again make the old drug effective, and/or the new drug would do the heavy lifting and bring me back into remission.  Unfortunately with me still being the only person on the trial there are no other people to compare my results to.  So the bottom line is that it is working, but we really aren't sure HOW it is working. 

How do we measure the fact that it is working?  There are actually 4 different ways.  The first is thru normal blood tests, and those results have shown a dramatic improvement, getting all my blood numbers into NORMAL range, and the best they have been in over 8 years.  The second way is thru a physical exam to palpate the lymph nodes and spleen.  So basically those nodes and organs that you can feel near the outside of the body.  Right now they cannot feel any of these.  The third way is to measure the results of a CT Scan that looks at the internal lymph nodes.  All of my lymph nodes have shrunk by at least 50% and they appear to be normal in size.  The last way to measure is thru a bone marrow biopsy.  This is where they can tell how much disease is actually in the bone marrow.  When I was first treated in 2007 83% of my cells in my bone marrow had CLL in them.  In May at the beginning of the trial I had 19% CLL in my cells.  And this last test done 2 weeks ago only showed .3% in my bone marrow.  That is NOT a typo.  It is 3/10 of 1%.  If this number had been 0% then I would have been classified as MRD negative. Which stands for Minimal Residual Disease negative, which means in 100,000 cells they can find NO leukemia.  Actually I was not surprised that they still found some disease.  I have had a LONG journey, Many, Many treatments and have a VERY complex type of CLL, so I am a tough patient.  They will run another bone marrow biopsy in 6 months to see if we can get rid of this LAST bit of disease.   Even if I get to no measurable disease this doesn't really mean that I am cured.  All it means is at that point in time they cannot find any disease.  It doesn't mean that it will never come back, because it may come back in the future sometime.  That being said, the clinical trials of 'untreated' patients (those that have never had any type of treatment) that are on both of my drugs are showing an extremely high rate of MRD negative two years out, which is extremely promising.

But that is actually not all that has happened since my last post.  In the middle of October we went to Texas to visit my Dad, Lois, Becky and Cherese.  After two days there I developed a fever.  No other symptoms, just a fever.  I felt so bad we came home two days early.  It was a good thing we did because the fever lasted 21 days.  Even with my 11 years of treatments, I have never felt so bad for so long.  Some days I was in bed for 16 hours.  You can only watch so much of the migration habits of penguins on the Animal Planet.  I was on three different antibiotics, had 3 doctor visits, one hospital ER visit, multiple x-rays, one CT scan, multiple blood tests and cultures.  The hospital of course wanted to admit me in case one of the cultures came back positive, and I politely declined, not wanting to expose myselft to something even worse on the off chance the test came back positive.  Of course the test came back negative, so it would have been for naught.  All of this testing came up with FUO.  This of course is a very technical medical term which means Fever of Unknown Origin.  Bottom line they have no idea what caused it.  It was probably a virus, probably picked up in the airport or on the plane, but no one really knows for sure.  I never stopped either of my two CLL drugs because the risk of stopping was greater than trying to rule it out as a cause.  Plus there has been no reported fever only side effects on either one of the medicines.  So it cleared up on its own.

I did have another infusion this week and had a fever reaction 4 hours after that, but it went away by morning.  Maybe it was a onetime thing. I hope so!

Because of the fever, I missed moving our daughter Sarah and her family to Arizona, and had to cut our trip to Texas short.  It is a good thing I got well because we had a golf outing to Temecula planned this week.  On Sunday we leave for Maui for a week and in late December we are going to Italy for 2 weeks.  I can't afford to be sick.

I continue to spend time with all of our grandchildren and this month we even got to visit with all of them, even though it wasn't all at the same time.  They are truly a blessing.

I have also begun to spend more time with the nonprofit I am involved with the CLL Society.  I am officially the Director of the CLL Society Support Network.  I oversee all of the 28 CLL Specific support groups in the United States and Canada.  I have personally trained 50+ coordinators on how to run their support group and adhere to the guidelines that we have established. I have also personally traveled to about 10 of these cities to assist in their establishment.  I continue to speak at various Educational Conferences and find it very rewarding to be able to 'give back' some of what I have learned.  I know some of you may find it surprising that I would like to get up in front of 200 people and speak. (Ha, Ha, Ha). We pride ourselves in being the only leukemia group in the US that devotes itself only to CLL.  With CLL being the most prevalent form of Adult Leukemia, we felt that there was a need for a place people could go for Support and Education specifically about CLL.

On another positive CLL note, my friend and founder of the CLL Society, Dr. Brian Koffman has just posted that they can find no CLL in his body after undergoing a novel treatment called CAR-T.  There is hope that this will be one of the ways we can CURE CLL in the future.  It is not for the faint of heart and should be looked at very carefully right now.  Here is a link that describes his journey  Dr. Brian Koffman's CAR-T Journey   Brian is also being honored at a dinner before the ASH meeting (Amercian Society of Hematologists) that is honoring 4 people who are Heroes in the CLL Community.  It is quite an honor for him to receive this award.

Thank all of you who contributed to my link to the CLL Society fundraising page around my birthday.  I had no idea what to expect, and the response was overwhelming.  Donna put the same link on her Facebook page and also wants to thank everyone that contributed.  We are truly grateful. Unless something radical happens I probably won't post anything until after the new year. so I will take this opportunity to wish everyone a joyous Christmas and Happy Hanukkah.

Terry