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.

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

Giving Thanks!

I guess it is only appropriate that during this Thanksgiving season I offer up my own THANKS.  I have now been on the drug Imbruvica for 2 years.  I had my 2 year trial check up with my doctor at UCSD last week and everything is going well.  I am VERY close to what they call a Complete Response (CR), where the peripheral blood counts are in the normal ranges.  As I mentioned in my last post, this has been a very SLOW process that has taken over 2 years, but it has always been moving in the right direction, even though it seems like it has been at a snail's pace.   So, I will be thankful for slow.  My physical exam also showed no evidence of disease, and I am having no other symptoms that would indicate a disease progression.  I feel really good physically, and play golf at least weekly, and If I feel up to it, walk the course with two of my friends who are both over 70. 

The question always comes up about how much longer will I be on this trial, and the answer is that no one really knows.  I do know I have appointments set up until October of 2016, so it is at least that long.  The information that I have always received is that this trial (the Resonate I trial), is that one that got the FDA to approve the drug for CLL patients (only for certain situations), and they really want to continue gathering long term data to help justify future approvals.

I can't say that I am happy to have been diagnosed with CLL, but I think I am making the best of it.  I am very involved in the CLL community, which is kind of a two edge sword.  On one hand I am always thinking about it, but on the other hand I feel like I am contributing to the betterment of the CLL community.  I have become one of the main coordinators of the Orange County CLL support group and my role is to lead the meetings every month.  I am on the CLL Society Patient Advisory Board for the CLL Society .  This is a non-profit that has been setup to be a worldwide resource for CLL patient education and support.  I have also been given the opportunity to be interviewed by a number of market research firms on behalf of drug companies and there was even an article written about my journey in CURE magazine.   You have to go to Page 3 to get to my part of the article. CURE Article.  I am also speaking at a CLL Patient forum at the City of Hope in Duarte in December to a group of CLL patients from around Southern California. COH Patient Forum .   I am also in contact with people diagnosed with CLL, who don't feel like a Support Group is the place for them.  Some people I know don't want to think about their CLL, and that is a personal preference that I respect.  For me, it seems like being involved is the way that I cope the best.

There have been so many advances in the last 2-3 years that the future looks very bright for newly diagnosed CLL patients, or those who have relapsed and need a new treatment.  So if I do need treatment again, I will have a host of options to choose from. 

Since my last post we have done a bit of traveling.  In August we went to Seattle visiting family and for a wedding, then went to Montana for a week.  Then we spent some time in Lake Arrowhead with our friends Bob & Dianne.  Then in September Donna went to Montana to be with our daughter Sarah who had emergency gall bladder surgery (she was 4 months pregnant at the time), after a week there she came home and the next day we left for Cancun with our friends Tom & Sandy for a week.  Then in October we went back to Montana (for a trip we had planned before the unexpected surgery), We then went to Las Vegas to visit Donna's sister and our niece, and checked off one of Donna's bucket list items, seeing Elton John in concert.  Then came home and went to Temecula for a golf outing with friends.  For a while there, it seemed like we were never home.  We only have two upcoming trips planned, one to Berkeley for a couple of days to visit Matt, Randi and Naomi, and then in January we will be going to Montana for some period of time for the birth of our 5th grandchild.  Montana in the winter...sounds like an adventure to me.

So, I really do have a lot to be thankful for, and I hope that your Thanksgiving can be as blessed as ours.

D(ONE) Once Again!

After 6 months of treatment I finished my Clinical Trial on Tuesday.  All of my numbers continue to look good and now we get to wait.  I will have monthly blood tests and another CT Scan at 9 months to check for disease progression.  End of short Report.

 I have now officially finished my 5^th treatment since 2007.  I have to say that this last treatment was the mildest of all the treatments that I have received.  I basically have had no side effects, and the only issue is to go down to La Jolla and spend 5 hours in the infusion chair.  All of my numbers looks good and my physical exam is very positive.  The one thing that we do know is that the treatment that I received (Ofatumumab), knocks the disease down, but does not knock it out.  So the big question is how long will this remission last?  No one really knows as everyone responds differently, but the hope is that it will be a while before I need treatment again.

 What I am really waiting for is the availability of the Clinical Trial drug Ibrutinib.  This is the drug that was on the other side of the trial that I was on.  As I have mentioned before, the hope is that if I do need treatment again, that Ibrutinib will be available to me because I was on the trial.  No one knows when this drug will be officially approved by the FDA, but they are thinking sometime in 2014.  The results from Ibrutinib have been nothing short of amazing.  About 97% of the people who received the drug have responded.  This is unheard of in the cancer treatment drug world.  Besides the response, this drug is a pill, not an infusion.  It also is not chemotherapy, but it is called a Bruton Kinase Inhibitor.  If you would like a technical description, here it is:

 

Ibrutinib was designed to specifically target and selectively inhibit an enzyme called Bruton's tyrosine kinase (BTK). BTK is a key mediator of at least three critical B-cell pro-survival mechanisms occurring in parallel — regulating apoptosis, adhesion, and cell migration and homing. Through these multiple actions, BTK helps to direct malignant B-cells to lymphoid tissues, thus allowing access to a microenvironment necessary for survival.

 I thought that was pretty humorous.  If anyone would like a more detailed description, you can email me.  Even if I don’t get Ibrutinib, there are a number of trials of non-chemo based drugs that are really promising.  The talk among all the CLL experts is that they expect that in 3-4 years there will be no chemotherapy used in the treatment of CLL.  This is really exciting news.

 There is always excitement in the Evans family.  We are now anxiously waiting for the birth of our Second grandchild (a baby girl).  The official due date for Matt & Randi’s baby is April 18^th, and we are just waiting for the call so we can fly up there.

 Some people may be wondering what the title of my blog posts actually means.  You have to have read this far to find out.  You will notice that the ONE is in parenthesis.  This is because the word DONE has a double meaning.  I received my last treatment on Tuesday, and on Wednesday I went out and played golf.  On the 3^rd hole at El Dorado I got a hole in ONE.  Hence the double meaning.  So you can tell that this treatment affected my golf game in a positive way.

 All for now.  I hope to be boring for a long time.

Terry 

It was fun while it lasted!

A week ago I visited Dr. Kipps for my 3 month follow-up.  Since I go down every month for my IVIG Infusion, he had 3 months worth of data to look at.  Unfortunately it looks like I am coming out of remission.  My blood numbers are definitely trending upwards, and he is starting to see my lymph nodes increase in size.  So it looks like I will have to begin some sort of treatment before the end of the year.  End of short report.

This is not totally unexpected.  Because I had all the blood tests, I could see where this was going.  I could also feel the nodes increasing in size.  I always knew it was going to be a matter of not if, but WHEN.  I am a little disappointed that the last Clinical Trial that I was on did not give me a longer remission.  From the time I stopped the Clinical Trial, I got about 20 months of remission.
He wants to see me as soon as we get back from Hawaii, and begin the process of bone marrow biopsies, genetic testing, etc.  After he gets the results of that back, we will sort out all of the trials that make sense and don’t make sense.  Why am I looking at trials again?  Isn’t there anything else that is a non-trial treatment?  The answer is maybe, but probably not.  I have already had 2 different treatments (one twice) and the results have been the same, no long term remission.  I have poor genetic markers, which limits the effectiveness of some of the ‘approved’ treatments.  I have had autoimmune issues with my AIHA.  In 50% of the cases, the AIHA comes back in patients, and is almost guaranteed to return if you use the wrong treatment.  So this limits my choices, and a trial is maybe my best shot.

I feel that the only way we are going to make real headway on curing or stabilizing this disease is to have people enter into trials.  Remember, you can’t get trials just anywhere.  They are usually provided only at teaching and research hospitals, like UCSD, Ohio State, MD Anderson, Mayo, Sloan Kettering and Fred Hutchison.  So you can’t go to your local hematologist and say ‘give me trial 123’.  You can’t even get the same trial at two different hospitals.  They are tightly controlled by the drug companies and the FDA.  Now there is a match made in heaven.  The trial I was on before had less than 50 people in the WORLD enrolled.  One of the most promising ones (that I am looking at) has only 400 people that have taken this drug, and it has been out of the lab for less than 3 years. There are a lot of accusations about the teaching hospitals using people as Lab Rats.  I don’t feel that way.  This is MY choice.  I can do it or not.

Dr. Kipps gave me 4 informational packets on trials that MIGHT be appropriate for me.  We will then have to wait until after the tests to see where I really am.  THEN, I have to be ACCEPTED by the drug company.  This sounds like I am applying for college, or a job.  I won’t get into the details of these trials right now because none of them might pan out and we might have to go to plan B, whatever that is.

I am not as anxious as I was before the last trial.  In general, I know what to expect (although every treatment has its own personality).  I know there will be a lot of paperwork, a lot of tests and drugs. Once again I am trusting Dr. Kipps and God to lead me in the correct direction.  

Life goes on.  Our youngest son Matt and his wife Randi have announced they are expecting.  My oldest son Jeff has announced he is engaged to his long time girl friend Kristen.  Wyatt continues to be a great baby and Aimee and Bryan are great parents.  Sarah is now a licensed CNA and is continuing her education in Acute Care.  My golf index is at its lowest since I began playing (that’s a good thing for you non-golfers).  So for now, I’m not going to worry about any of this, and Donna and I are going to relax in Hawaii.  ALOHA.

Terry

About Time to Post

It has seen quite a while since I have sent out an update, but as they say, no news is semi-good news. In January Dr. Kipps didn't want to see me for 6 months since there was no disease progression. At the beginning of June I had my 6 month visit with Dr. Kipps and the report was generally positive. My blood numbers have been slowly going up for the last 3 months or so, and my nodes have grown by a small amount, which does show disease progression. I am having no other B symptoms (fatigue, sweats, weight loss). So Dr. Kipps was not overly concerned, but said he wanted to see me in 3 months.

I still am getting my monthly IVIG infusions (see link on right side of page if you don’t remember what these are) and with that I am getting a monthly blood test. I am a little disappointed that the disease has shown some progression 18 months after the clinical trial ended.  I was hoping for a longer remission. It is not clear what Dr. Kipps will say in September. I know he doesn’t like the disease to get too far along so as to limit your treatment options. But with no major symptoms and such a slow increase in my blood number, I may not be to the point where I need treatment for another 6-12 months. The longer I wait, the better my treatment options are. There are several new treatment protocols that are currently being tested and these new treatments are less toxic, non-chemotherapy based and even though they may be years away from FDA approval, I hope that UCSD and Dr. Kipps will have Clinical Trials available using some of these drugs when I do need treatment.

Another reason I have been delayed in posting because the news for some of our friends has not been so good. I kind of feel guilty posting my status, when we have others who are struggling. Our friend Tom has COPD and is struggling. My CLL friend Wanda who has had a transplant and was diagnosed as ‘cured’ of CLL last month, was then diagnosed with aggressive breast cancer the next week. Donna’s Dad Don, is having some health issues, has been in and out of the hospital and we finally have a diagnosis and a treatment plan. He is home now and is slowly getting his strength back.

And perhaps the saddest situation of all is that our friend Carol had a relapse of her melanoma and recently passed away. She had the most amazing spirit during her ordeal and was an inspiration till the end. Please keep her family in your thoughts and prayers.

For some strange reason the drug companies think I am a good candidate for advertising. The drug company once again asked for our assistance in advertising their product. In March we were approached about being in a Rituxan patient information video. This time they wanted both Donna and me, and it was going to be a video instead of a still photo shoot. So in May we flew to New York and participated in the filming of the video. There were other Rituxan patients, but I was the only one with CLL. We sat around in an informal setting and answered questions about diagnosis, treatment, care giving, etc. We also had a one on one interview with a moderator that asked us additional questions. The video is going to have interviews of patients, doctors and a drug company representative. It will be handed out to new patients that are going to take, or are considering taking Rituxan. I think that this will be beneficial for patients to get some first hand knowledge before they need treatment. I hope it helps them.

All the people involved in the production (about 30 of them) were so great; they really made it easy for us to participate. After the two days of shooting we visited West Point (Amazing Place) and then we stayed 3 more days in Manhattan and took advantage of being in the Big Apple.

On a more personal note I am playing A LOT of golf. Also we are really enjoying being grandparents, and Wyatt is really a great little boy.

Terry