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