6 Month Update

 I thought I would post a 6-month update for my latest clinical trial (treatment #8, clinical trial #4).  It is going well, even though it seems slow to me.  I just had my 6-month checkup where they do a physical exam, a lot of blood tests, and CT scans of my neck, chest and pelvis.

 My blood numbers are dropping by about 25% per visit, which seems like a lot when you say it like that, but in reality, it is slow going.  The best news about this is that it is DROPPING, which is what you want.  This is not a quick fix treatment, the goal numbers may not be reached for a year, if at all.  The real goal is to have them drop to a normal range, or at least get them lower and remain stable.  All of this is happening.

No real side effects, which is great.

Unless something earthshaking happens in the next 6 months, I probably won’t post again until my 12-month checkup.

Terry

Happy New Year and Have Patience

 I thought I would give a brief update on how my clinical trial is going.  As a recap, I entered another (my fourth) Clinical Trial on October 7^th.  It is a new class of drug that is being tested by three different companies.  The fact that there are three companies competing for this particular class of drug points to them being on to something.  The clinical trial data for Phase 1 for 2 of these trials shows real promise for patients like me, that have poor prognostic markers and have been treated multiple times.  The average number of failed treatments in the Phase 1 trials was 4, since this is my 8^th, I fall on the high side of that number.  For those of you that like detail, it is a Bruton Tyrosine Kinase degrader. 

After 3 months on the trial, I can say that it ‘seems’ to be working.  It is not the slam dunk I thought it might be, but things are pointing in the right direction.  As my friend Herbert the Snail would always say “have patience, have patience”.  After my blood test and CT scan last week it shows there have been some improvement, even though it seems very slow to me.  Back in 2013 on my second clinical trial, it took me 3 ½ years to get my blood numbers into normal range, so I am using that as a positive point of reference.

I am on a monthly check up schedule for another 6 months, and then I go on a 6-month schedule for as long as the trial lasts.

I hope everyone had a good Christmas, New Years and all the other holidays.  We were fortunate to once again have all the grandkids here the week after Christmas.  It is so special to see them all play together especially since it doesn’t happen very often that they all see each other at the same time.

As a side note, I was interviewed for an article in a mainstream magazine this past fall and that interview will be published in the magazine in their February issue.  Hint, it is NOT a news or fashion magazine. 

Take Care

Terry

You can’t always get what you want…

I know it has been a while since I last posted and some of you may have wondered where I have gone.  Well, I am still here and even though I started to write updates many times, every time I thought to do it, things changed.  So, I thought that when something ACTIONABLE actually happens, I will post.

Which brings me to today.  Some of you may remember that I started on a new drug in July of 2024.  It was working really well until January 2025.  Because they run very sophisticated tests on me due to my history and number of treatments, this relapse was detected much earlier than it would have been under normal circumstances.  So then began the planning of what to do next.  Because the relapse was moving slowly, I could take my time and look at all the available options, which in my case are only clinical trials.  I decided on a new class of drug that was being tested by two different companies.  The funny thing was that I had actually done some work as a patient advocate for BOTH of these companies.  One trial was at City of Hope in Irvine and was being run by one of the CLL doctors I have previously seen.  The other trial was being run by my doctor of 13 years at UCSD in La Jolla.  I could have gone either way, but leaned towards the one at City of Hope because it was a much closer drive and I had had personal contact with the President/CEO, the Chief Medical Officer and the Patient Liaison of the company.  In February I reached out to City of Hope and asked them about their trial.  They informed me that it would not open until June or July, so since I was relapsing slowly, I thought it would be fine waiting.  At the end of May I reached out again and they scheduled me for an appointment and then in the beginning of July found out after the fact that there were NO slots for my particular class of CLL and types of treatment that I have had.  They also told me they are not sure when they might actually have an opening in the trial that fits my profile.

So, in July I had to turn to option 2.  I go back to Dr. Choi and ask him if there are still any openings on the trial he is running which he had previously offered me 4 months earlier.  Luckily for me he said there were openings.  

But because of the amount of testing and the number of tests required in the beginning we decided to delay starting until after we got back from our trip to Ireland on October 1^st.   My doctor and I weighed the pros and cons of us going, and we agreed that we should go.  I’m really glad we did because it was one of our best trips.  We actually went with Donna’s brother and sister, which made it a special family trip as well.  If you haven’t gone to Ireland I would definitely consider it.

I am also grateful for companies like Lilly that have decided to produce drugs in the CLL space.  Even though I relapsed while on it, I got 26 months remission, and without it, I am not sure I would be here today because there were very few options available to me back in 2024.

Also in March of this year we took a Viking river trip from Amsterdam to Switzerland with our friends Rick and Cindy.  River cruising is so much more relaxing than a big cruise ship. Fewer people, great food and friendly staff.  Even though it was still pretty cool we saw some beautiful sites and wound up with bright sunny days at the end in Lucerne.

I started my trial on Tuesday, October 7^th, and it was ONLY an eleven-hour day.  The day was not without some hiccups as I pretty much expected since I am patient #1 on the Phase 2 of the trial at UCSD.  The next visits are weekly and should only take about 2 hours.  The big question is how will we know I am responding?  It will probably take about a month or two to figure that out.  In the Phase 1 trial of this drug about 80% responded, which is really good considering all of the people in Phase 1 are people like me, heavily treated and with poor prognostic markers.  I am hopeful I will be on the 80% side.  There is not much long-term data, so we also don’t know how long the expected results will last.  That is why there are clinical trials.

Within the next couple of months, I can provide an update of how it is going.

Terry

You can’t make this stuff up…

So, in my last episode I was beginning my radiation treatment for prostate cancer.  I had the first treatment and all was going well.  Actually, I was doing fine even after my 4^th treatment and played golf that afternoon, and the next day.  I thought that this was going to be a piece of cake…WRONG.  After the 5^th treatment I started feeling the side effects.  I knew this was a possibility because I had been told the side effects were cumulative, i.e., it builds up the more you get and it finally catches up to you.  The bad side effects, mainly GI, urinary problems and fatigue hit me pretty hard.  So hard I was unable to play golf for the next 3 weeks.  As I have mentioned before, I gauge how I feel on whether or not I can play golf.  In this case, I could not. Starting week 4, I finally began to feel a little better, even playing golf twice that week.  Of course, right in the middle of my feeling poorly I developed an infection, which prompted a visit to City of Hope for treatment.  Finally, I think the antibiotics have done their job and I think it has cleared up. At the end of the radiation, I did get to RING THE BELL, which is something cancer patients get to do when they have finished treatment.  In my 24 years with CLL, I have never gotten to ring the bell, so this was a milestone of sorts.

So, you are probably thinking, oh, that’s not too bad, but I’m not done yet.  Before I went to Alabama, I had gone to a cardiologist for some chest pressure I was having.  He wanted to do a stress test right away, But I said, it will have to wait because we are leaving for Alabama the next day.  So, he scheduled the stress test, and gave me a prescription for nitroglycerin, saying take this if you have chest pain.  The prescription was for 100 tablets, so I don’t know what he was expecting to happen.

As luck would have it, my prostate radiation was delayed a week from the original start date, and the stress test was now scheduled right in the middle of the radiation treatment.  So, I called City of Hope and asked if it was OK, for me to have this test right in the middle of radiation.  The nurse first responded yes, then the cardiologist called me to confirm the test for the next day, so I said OK, but then at 5pm the City of Hope Doctor emailed me and said ‘absolutely not!!’.   So of course no one was in the cardiologist office, so I had to leave a message telling them I would not be there at 7am the next morning for the test.  So, I called and rescheduled the stress test for the next week.  Now keep in mind I was in the middle of the side effects from the radiation and I thought it was going to just be a drug induced stress test, but NOOOO, if was a full-blown treadmill, with nuclear dye.  I honestly did not know how I was going to get thru it.  I managed, but had to time trips to the bathroom at strategic intervals.  Luckily my original post stress test appointment with the cardiologist was the next day, so Donna and I go into the cardiologist’s office and he gives me the news.  You had an abnormal stress test, that shows ‘some’ blockage.  I need to schedule you for an angiogram and a possible heart stent ASAP.  So, 8 days later I went into the hospital and had the angiogram, and they put in a heart stent because my right coronary artery was 100% blocked. 

So now I am recovering from radiation side effects, the infection and the heart procedure, all within 4 weeks. 

We were actually supposed to go to Arizona to be with Sarah and her family after she had surgery, but her surgery and my heart procedure were scheduled for the SAME day.   So that got nixed and Kevin’s mom went in our place and then they all drove here last week so Sarah and her boys could recover here instead of in 114-degree weather. 

I was finally feeling pretty good and well enough to play golf this week and I also got to do a video shoot for the drug company (Lilly) for the drug (Jaypirca) I am currently on for my CLL.  This was about a 5-hour deal with makeup and the whole nine yards.  There were about 12 people on the production set, so it was the real deal.  This video will be shown at a Hematology conference in December where they are presenting information about the drug I am on, including a patient perspective. 

I hope things are going to settle down for a while because I don’t need anymore excitement in my life right now.

Stay well

Terry

 

Today I began another journey

Today was the beginning of my radiation treatment for prostate cancer.  Of course, after the first treatment, I can’t really tell if anything is going on, but so far so good.  As a recap of how I got here, I was diagnosed with prostate cancer in 2021, watched it for 3 years and then determined that it was progressing and we decided it was time to treat.  You might not expect this from me, but I did a little RESEARCH. 😁 I wanted to make sure I chose the best doctor, the best facility and the latest treatment.  I wound up choosing the City of Hope, Lennar Cancer Center in Irvine.  We decided on (MRI)-guided stereotactic body radiation therapy (SBRT).  This is state-of-the-art radiation treatment that is given using real time MRI guidance. It takes 2-4 scans per second to make sure they are within the margins of the staging scan. It is accurate to sub millimeter levels and because of this they can deliver a higher-than-normal radiation level.  Because of the accuracy and the higher radiation it cuts the treatment time down from 25-35 days to only 5 days.  Last week I had my staging and location scans (CT and MRI) to pinpoint exactly where the radiation is to be delivered.  I have 3 tattoos (temporary) identifying the positioning points.  I will have another treatment tomorrow and then Monday, Wednesday and Friday of next week and I am done.  The other nice thing about my treatment is that there is NO hormone therapy used.  This is partially because I am considered Low-Intermediate risk. I am grateful for that, as I understand that can have more side effects than the actual radiation.  Total time for the 20-mile trip there, the treatment and the trip back home was 2 hours.  It is REALLY quick.  

My CLL is still under control so that is one less thing I have to think about.  Donna and I were invited to Lilly Pharmaceuticals (I have been on their drug for 12 months) company headquarters in Indianapolis in May to be part of a corporate event where they invite patients that have used their drugs to talk about their journeys.  There were about 3-400 Lilly employees in the audience and several thousand watching the live streaming of the event.  I was the only CLL /Leukemia patient there and shared the stage with lung, ovarian and colon cancer patients.  They treated us very well and Donna and I were really impressed by the entire Lilly organization.  They seem to value the patient’s input and we were asked to share our ideas about how we think they could make the patient’s journey better. 

After that, we then went to Alabama to see Matt, Randi, Naomi, Liv and Jude.  We spent 11 days in the ‘South’ and were also able to make a trip down to the gulf and stayed at a really nice resort where the kids spent most of the time in the pool.   

I hope you all enjoy a wonderful summer.

Terry

Disappointing, but not unexpected

Even though I usually post about relapsing on my treatment for CLL, this Blog update will be a little different because my CLL is doing just fine.  However, my prostate cancer has decided it wants to get into the treatment game. 

When I last reported about my Prostate journey, I had just had a PET scan which showed 3 areas of concerns.  That was followed up by an MRI.  Using those two tests I finally had my appointment with my urologist at City of Hope on Friday and after some explanation and showing me the PET and MRI results, we have decided that it is time to begin treatment.  I have opted for the MRI guided SBRT (Stereotactic Body Radiation Therapy) treatment.  This treatment is only available at 3 medical centers in Southern California. Because of using an MRI to pinpoint the lesions, it is much more accurate (about 80%) more accurate.  Because of the accuracy there are fewer side effects, and because of the short duration and the higher intensity of the radiation they do not include hormone therapy as a part of the treatment plan which they normally do using CT guided treatment.  Instead of a normal 25–35-day radiation schedule, this one is 5 treatments.  They do this treatment over 10 days.  So instead of 5-7 weeks, it will be less than 2 weeks.  Because Prostate Cancer is another ‘slow growing’ cancer, there is no need to rush into this right now.  I told my doctor I had some upcoming trips in the next 6 weeks, so could we start in June, and he said that was fine.  Yesterday I scheduled the diagnostic testing required to begin the treatment.  I will have the staging MRI and CT on June 4^th, with the radiation treatment beginning the next week.  This type of treatment has a very good long term success rate, so my hope is that after this treatment we can put this part of my journey behind me.

Here is another case where finding the right doctor and right medical center is critical to the treatment plan and the success of such a plan.  If I had just done what my first urologist had wanted me to do, they would have done surgery to remove my prostate back in 2021.  As it turns out, this would have probably not been the best approach, and most certainly I would be living with long lasting complications.

I am not asking ‘why me?’ or upset with this news.  I have dealt with a chronic condition (CLL) for almost 24 years.  During that time, I have moved from treatment to treatment getting small reprieves that have to be adjusted every couple of years.  If I had not had my ‘faith’ that there would be options for me when my treatments became less effective, I would have been a basket case.  I feel like I have done my homework, am at peace with the decisions we have made and we are moving on.

On the CLL side, I am still on the drug I started in July of 2023 (Pirtobrutinib or Jaypirca) and I am doing well.  All of my blood numbers are in normal range as of February.  This does not mean I am cured, or even in deep remission because they can still find a small % of CLL using a test called a Flow Cytometry.  But even the amount that they can find is going down because this drug works slowly and it takes time to get it to zero, which it actually may never do.  So I am in what we call ‘maintenance mode’, where you can keep the disease burden low enough that it is almost like it is not there. (But we know it really is there hiding 😊). Another nice thing is that this drug seems to have very few adverse events (that’s technical talk for side effects).  Which I appreciate.

I mentioned in my last post I was going to Orlando to speak with the pharmaceutical company that makes Jaypirca, and that happened.  I spoke to about 500 people at one of their corporate events.  I guess they were happy with me sharing my journey so now they have invited Donna and me to Lilly’s corporate headquarters in Indianapolis for 2 days in May.  I am not sure what the exact program is, but I will be speaking to corporate people and visiting the lab where the scientists are working on new and even more exciting products.  My interaction with Lilly (and especially my contact, Devon) has really been rewarding.  They get to see a REAL patient and I get to tell them what I would like to see in the support of patients. I have dealt with a lot of pharmaceutical companies over the last 24 years, and it seems to me that they are taking a closer look at how their drugs impact patients lives.  Yes, I know some drugs cost a LOT of money, and sometimes it takes an inordinate amount of time to bring these drugs to market, but I can honestly say that without these drugs I would NOT be alive today.

I am also filming a short video presentation to be part of a program to be presented at the next ASH (American Society of Hematologists) in December in San Diego.

If you are wondering why I didn’t just say, OK, let’s start tomorrow when we made the decision to do treatment, there are some simple (and maybe selfish) reasons.  In April we planned on going to Arizona to visit our daughter Sarah and her family and in May we planned to visit our son Matt and his family in Alabama.  These trips have been planned for a long time, and because the doctor told me it is not critical to start right away we decided there is no risk in delaying it by 6 weeks.

I will try to post more often during my treatment just to provide information for the men that may need to make this decision in the future. 

Terry

Little did I know...

That over 16 years ago when I started my blog, I would still be posting updates on not only one cancer but two.  My posts have become less frequent because there are long periods of time where there is not much to report even though I am still having frequent doctor visits and things may move around slightly.  But I really don’t think it is of much interest to have me report, ‘I pulled my hamstring and can’t play golf for a couple of weeks’ (This is for my kids, who will be the only ones who will get this joke 😊)

In my last post, I was wondering what I was going to do with my CLL as I was relapsing once again.  I turns out the new drug I wanted was approved by the insurance company and I was able to start it at the end of June.  This drug called Jaypirca is supposed to work when you have developed a mutation and become refractory (when a treatment is less effective or stops working) to another drug in this class.  So far, the results are positive, but this drug works very slowly, so the immediate effects I have had from other drugs is not apparent with this one.  The hope with this drug is that it will keep my disease stable, which it seems to be doing.  This month my blood numbers finally came into normal range, even though they are at the high end of those ranges.  This is the way the drug works, slow and steady.  Since I still get blood tests every 4-6 weeks, we can keep a vey close eye on these numbers to see if and when it may stop working.  In the clinical trials for this drug (on patients like me who have failed most all approved therapies and have really bad genetic markers) the average time to relapse seems to be around 18 months, so that would put my expected target for relapse around December of 2024.     I have already begun to look at subsequent clinical trials that may fit my profile and I think there are at least two that seem like a possibility and are being carried out close to me.  The best thing about this drug is that it has almost NO side effects.  If there are any for me, I am not sure what they are.  We will keep a close eye on this.  It has the easiest of the 6 different treatment regimens I have been on.

On the Prostate Cancer side, this is where it gets really interesting and a bit more confusing.  In my last post I indicated that my PSA had decided to go up once again and I needed an MRI.  So, I got the MRI In September and that indicated I needed another biopsy to determine how much it had grown or spread.  Using knowledge I have gained dealing with my CLL for almost 24 years I decided to ‘interview’ two doctors, one at Hoag and one at City of Hope (who actually used to be my Urologist at Hoag).  Based on those discussions I chose to go to City of Hope for the biopsy because they use a protocol that has less chance of infection.  Well, that didn’t turn out according to plan.  Three days after the procedure I developed a RARE infection.  I say RARE because I was the first one to get this infection at the new Lennar Cancer Center (new City of Hope facility in Irvine).  So, I was excited of course to be the FIRST one, but my excitement was tempered by having to deal with the infection.  After that cleared up, the results came back and they identified two cancerous lesions, which is basically the same as the biopsy done in 2021.  To confirm the pathology, they once again sent the results out to Johns Hopkins for a second review.

 I just want to mention for those who need a prostate biopsy; include this option in your decision-making process.  The people at Hopkins have pathologists that are the World’s leading authorities on reading prostate biopsies.  I think they wind up downgrading slides in many cases, which likely means if you had relied on the original biopsy results you may have entered into unneeded treatment.  This actually happened to me.  Back in 2021 the original read said I had two cancerous cores both Intermediate grades.  After the Hopkins review it came back as only one core and it was low grade.    

All of this takes time.  I  also had one other test done called the Decipher test, which measures the aggressiveness of the cancer and the chance that it will metastasize over time.   At my December appointment he told me he wanted me to have a PET/PSMA test so they can actually see more of the prostate under radioactive contrast and see what lights up. I had my appointment with him this week and we really discussed what my options were and how we should proceed.  The PET/PSMA scan did light up three areas on the Prostate, which means that there are actually more areas than first thought, but still not something that seems to be alarming.  We discussed the following options.

1. ·         Surgery-  He did not recommend it because of my age, I did not like it because I would have to stop my CLL drugs for about two weeks and I didn’t want to take the chance I would have a surge in my CLL while off the drugs.
2. ·         Focal therapy – where they freeze or laser the affected areas.  He did not think this was an option because there are lesions on BOTH sides of the prostate, which is more difficult to do with this kind of therapy.
3. ·         Radiation – This is definitely an option.  City of Hope has a new radiation procedure that only takes 5 visits because it is MRI guided.  There is also another one that is two weeks.  Both of these are considerably less that the standard 5-7 week daily protocol. 
4. ·         Active Surveillance –This is also an option and where we just keep on monitoring it with PSA tests, MRI’s and biopsies. 

So here is what I decided.  I am going to make an appointment with the radiation oncologist to have him explain the radiation treatment protocol and get his opinion on whether radiation at this point is the best option.  But at this point, I am leaning toward Active Surveillance.  Here is my logic, although it might be flawed.  There really has not been a major change since 2021.  The Decipher test that shows the aggressiveness came in EXTREMELY low.  The scale is 0 to 1.0.  Mine came in at .13, which my doctor said means that there is almost no chance that it will metastasize over time. So that would mean I would die WITH prostate cancer, and not because of it.  I will have another MRI in about 3-6 months and then maybe another biopsy in a year. 

I am still doing patient advocacy work working with the CLL Society and will be flying to Orlando in February to speak at a corporate pharmaceutical event sharing my patient experience.

On the family news front, we lost the matriarch of the Barden family in October.  Donna's mom Bette, passed away at the age of 103.  She had fallen and broken her hip about a month before and that was pretty much the beginning of the end.  She came to really enjoy her great grandchildren over the last years of her life and we were glad that all of them got to meet her before she left us.

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

Feels like 2010

Last week I had my 9 week appointment for my clinical trial.   I thought that the news was pretty good at the beginning of my trial, but I can say that this appointment pretty much shocked everyone.  Wait for it, wait for it....  My blood numbers are at their lowest point in 8 YEARS.  My physical exam showed no palpable lymph nodes or spleen.  All of this is pretty amazing news.  End of short report.

Although we don't really know the extent of the remission, everything points to my new drug, Venetoclax, working quite well.  There are some unknowns here.  We don't know whether this is the Venetoclax alone doing the work, or has it made my old drug, Ibrutinib, start working again.  We do know the old drug, Ibrutinib, was losing its punch.  All the tests and numbers pointed to it becoming less effective, but there is some anecdotal evidence that  these two drugs, working together, are a one-two punch and it seems that working together they work better than working on their own.  What we do know is this combination is a very fast acting combo.  When I was on my last trial of Ibrutinib alone it took over 2 years to get my blood numbers down to normal range.  With this combo, I got into normal range in ONE week.  Quite a powerful treatment.

In November I will have another CT Scan and Bone Marrow Biopsy that will tell us the depth of my remission.  Right now, all signs are pointing towards a fairly deep remission.

This trial has not been without some minor issues.  It requires a lot of time at UCSD.  I have made 7 visits in 9 weeks.   I am now on a monthly schedule until the end of the year.  Before this trial I had some GI issues, but it seems they are more frequent since I started the trial.  It also seems like I am bruising more easily.  I discussed this with my medical team last week and it may be that my old medicine is working better, and hence more bruising since bleeding / bruising issues because that is one of the main side effects of my old drug.  And I still have not gotten any relief from the horrendous co-pay that I am on the hook for.

I am still patient #1 (and only) in the world on this particular trial.  I was a little concerned that if no one else joins the trial that they would stop it, but my medical team assures me that there are no plans to stop, even if they don't get any more patients. 

I have been interviewed twice  in the last week by people that are putting together CLL information packages for various companies.  I don't mind sharing my journey with people in hopes that it will benefit not only the patients, but the medical community as well.

Terry