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