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.

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

It's not always the CLL

Since my last post in November A LOT has gone on.  Fortunately not much of it has to do with my CLL.  As of right now I have been on my trial drug Imbruvica for 2 1/2 years.  In that time I have almost progressed to normal blood levels and lack of any other B-symptoms like swollen nodes, night sweats, fatigue, etc.  With one notable exception which I will talk about below. 

Otto Remington

So what has happened in the last 4 months?  Quite a bit.  Most importantly. our 5th grand baby was born to our youngest daughter Sarah and her husband Kevin.  After a long and trying pregnancy, Otto Remington was born in February and we were fortunate enough to be in Montana for his birth.  He is doing great and growing by leaps and bounds.  So far our oldest daughter has gone to visit her, and our two sons and their families are going in the next 2-3 weeks to visit them.

Secondly, I have become more and more involved in the CLL Society a non-profit devoted to the education and support of the CLL patients.  I am already facilitating the Orange County group at University of California Irvine Medical Center every month and we have been fortunate to branch out and form another support group based at the City of Hope in Duarte.  I will lead the group for a few months and then turn the reins over to another individual that has been involved in other support groups and is willing to lead this one.  Our mission is to expand these types of support groups all over the U.S.  We already have interest from about 5 locations that are interested in having this resource in their communities.  This seems to be a role that suits me, and it is definitely rewarding sharing with fellow CLL patients.

Lastly, I have been having abdominal issues for a number of years, but it was undiagnosed all this time.  This changed 2 weeks ago.  I had been having issues for about 8 straight weeks starting in January, and it didn't seem to be going away.  After visit to a gastroenterologist, and a nuclear scan, they determined that my gall bladder was hardly functioning at all.  So a visit to the surgeon on Tuesday, surgery on Friday, I am now without a gall bladder.  I was in by 5:45 and out by 2:00 pm, not bad.  So far the recovery has been fairly easy, but I have been on a bland, non-spicy food menu (not what I'm used to), so I really haven't tested it much.  Because of the trial drug, there is a risk of bleeding, so I had to be off of it for 7 days and can't restart for 2-3 days post surgery.  I stopped the medicine as soon as I got the results from the nuclear scan, so that I could have the surgery as soon as 7 days were up.  This meant I would have to have the surgery on Friday.  I knew this was going to be a stretch because I didn't even see the surgeon until Tuesday of that week.  This became even more of an issue because after 4 days of being off of Imbruvica I began to relapse.  My lymph nodes grew in size, came back in places I had never had them before, and we painful to the touch.  Even though all the reports say you go back into remission quickly after you restart the drug after surgery, I knew I wanted the time off the drug to be as short as possible.  I really want to thank the staff for understanding my plight and doing their best to accommodate me. This was my first experience with Hoag Hospital in Newport Beach, and I can say that I have been thoroughly impressed with the staff and facilities.  I have an appointment at UCSD on Friday so I can see what effect this has had on my CLL. 

On another note.  I get comments on my blog, and unfortunately, when someone posts a comment, I can't see where it came from.  There is no email attached, so I can't respond.  If some of you thought I was being rude for not responding, I apologize.  I just don't know how to get a hold of you.  Because the comments are public, I would hesitate to put your email in the post, but you can contact me directly at tevans@cllsociety.org  and that will get to me. 

So I guess the takeaway from all of this is that I can't blame everything on my CLL.  I still will have other medical challenges along the way, but after doing this so long, not much phases me anymore.

And then there were 4 and 5

     
I am continuing to see SLOW improvement in my blood numbers, which doesn't really surprise anyone.  As I might have mentioned before, the Imbruvica works like that.  It is a very SLOW acting drug, unlike chemotherapy which mostly has an immediate response.  In fact, studies have shown that if you respond too quickly to my drug, you will probably not have as durable response a someone who slowly responds over a long period of time.  A fellow CLL'er, who was on one of the first Imbruvica trials, only reached normal blood numbers after 3 years on the drug.  Most of my blood numbers are in normal range, but some still are not.  I continue to have minimal side effects and am glad that after 20 months that I am still in remission and still responding to the Imbruvica.

But because of my compromised immune system, I am susceptible to infections and those infections can take a while to clear up.  It took about 3 1/2 months for my pneumonia to clear.  Just about as soon as that almost cleared, I got another infection which took 3 courses of antibiotics to clear.  Then, I got some sort of sinus / ear infection that took 3 weeks to clear.  All this from a guy who had almost no colds during the 7 year period from diagnosis till my first treatment.  I will admit I have been rarely sick, even after I began my treatments.  So this situation I have dealt with for the last 7 months is really rare for me and maybe that is why it is so frustrating. I also know that I can't blame EVERY physical ailment on the CLL.  I continue to play golf multiple times / week, and we are traveling once again. 

In my last blog post I mentioned that my lifelong friend, Tall Tom Robertson, was waiting for a lung transplant.  Tragically, after over 30 days at UCLA medical center, they were unable to find a match and he passed away in April.  We went to his memorial service in Marysvale, Utah in May and it was heartwarming to see the love and affection that was shown by all of his friends and townspeople. He will certainly be missed, but not forgotten.

Some of you may be curious as to what my blog title means.  It means that since my last blog post, we had the birth of grandchild number 4, Emma Jeanne Watkinson, born to our daughter Aimee and Bryan. and it also refers to the fact that our daughter Sarah and Kevin are Pregnant and this will be grandchild number 5 for us.  What makes this pretty amazing is that 14 years ago when I was first diagnosed, none of our 4 children were married and we had no grandchildren.  Based on the AVERAGE survival rates for CLL at the time, I had between 5 and 8 years to live.  Obviously no one knew at the time that more advances would be made in the last 5 years than in the previous 50 years.  Now there are more treatment options and people are even talking about a CURE, which was unheard of when I was diagnosed.

Last week we went to Berkeley to visit our son Matt, his wife Randi and our granddaughter Naomi.  This weekend we celebrate the 1 year birthday of Lois, who is Jeff and Kristen's daughter.  It turns out EVERYONE has decided to come in for this event and we will have about 20 family members here for that.   Then in 2 weeks we take off for the wedding of Randi's brother in Seattle and from there we venture eastward to Montana to visit Sarah and Kevin for a week.

In May, I had my 10 year retirement anniversary.  I can't believe how fast this time has gone. Even though I have had some minor bumps in the road I can't help believe that I am blessed to be on this journey.  My friends, family, medical team and faith have allowed me to continue LIVING instead of dwelling on my situation.  I feel fortunate to be part of a support group for CLL patients and part of a CLL non-profit organization.  I saw some friends a few days ago that I hadn't seen in 4 months or so and they said that they missed my updates and had been wondering how I was doing.  It is hard sometimes for me to dwell on how well I am doing, when so many people out there are NOT doing all that well, even with all the new and exciting treatments.

As my friend 'Too Tall Tom' used to always say, "stay healthy".

Terry

How You Doin'?

I have received a number of inquiries about how I am doing, and if everything is going OK.  I am pleased to say that I went to my 16 month checkup last month and everything seems to be going in the right direction.  Even though my blood numbers are still not in normal range, they continue to move down towards that goal.  The thing about Imbruvica, is that it is a very slow acting drug, so you will not see the same dramatic drops you see in chemotherapy.  I still have minimal side effects of joint/bone pain, but these have lessened since I started over a year ago. 
 
My main problem these days is trying to get over pneumonia.  In December and January I got 2 colds, and then in the beginning of February I was diagnosed with pneumonia.  I went thru 2 separate rounds of antibiotics with only minimal effects.  The problem with a compromised immune system is that you don't fight off infections very well, and it takes a while to get over them.  My main problem has been a constant cough.  I never had a fever, and my cough wasn't very productive.  I was actually diagnosed via an x-ray, and the area they identified has only gotten slightly smaller over 2 months.  My primary doctor is puzzled and wants me to see a pulmonologist and get a CT Scan.  He even suggested the cough might be due to Acid Reflux.  I had even tried to find out if there are any correlations between my current trial drug, Imbruvica, and any of the symptoms I am having.  Of course there are anecdotal references to 'lung issues, coughs, sinus issues, acid reflux, breathing, walking, talking and eating.'  So there is no real validated connection.  It would be a shame if the drug were causing this after 16 months of success. My trial doctors don't think so, but who knows.

After the suggestion to see a pulmonologist, Donna mentioned she remembered another CT done at UCSD in 2010 that identified a spot on my lung.  So I dug thru my 3 volume set of medical tests and reports and sure enough I found a CT from 2010 that identified an area in my right lung that is in the same area as what the x-rays showed.  Because I was going on a clinical trial in 2010 I had to have a lung biopsy to determine if it was anything more serious and something that might keep me out of the trial.  The biopsy came back as 'unknown, possibly scaring from Valley Fever or previous lung infection'.  So, if this is the same area that existed in 2010, it is a non issue.  So I try to make an appointment with the pulmonologist to have him weigh in on whether I REALLY need another CT scan or not.  The next available appointment for a NEW patient is MAY 22nd.  What the heck?  6 WEEKS from now? 

You would think that after all I have gone thru, this would be expected or at least well tolerated.  NOT SO.  I am so frustrated to think that I can't even get in to see a doctor for over a month, when it may be something I need them to weigh in on now.  The only good thing is that the cough seems to be getting a little better this week, so maybe I am on the mend. So since I am finally getting better, I'm going to put off going to see the pulmonologist for now.

I am still going down to UCSD monthly for my Immunoglobulin infusions.  I don't know if it was bad timing or the fact that when I changed my infusions to every 6 weeks instead of 4 weeks, I got sick.  Since I have getting IVIG monthly for 7 years and never really have gotten sick, there may be a correlation since the half life (the length of time a drug remains in your system) of IVIG is 4 weeks. I'm now back to every 4 weeks.

Speaking of lung issues, my lifelong friend Tall Tom, is currently at UCLA Medical Center waiting for a double lung transplant.  They have told him that it should be within the next two weeks, but so far there has been no match.  Please keep him in your thoughts and prayers and that the transplant goes well for him.

On another note, I am fortunate to have become a part of a new CLL Patient Advocacy Group called the CLL Society.  I am on the patient advisory board of this non-profit group founded by my friend and fellow CLL patient Dr. Brian Koffman.  Brian has had a blog for years where he tried to mix CLL information with his own personal CLL journey.  After a while it became apparent that there was a growing need for unbiased, factual, and current information about CLL so he decided to separate the two.  There is a need for up to date information not only about the disease, but also approved treatments, clinical trials and new and evolving therapies. The website addresses the most basic information, more detailed information, how to interpret test results and how to go about building your 'team'.  The webpage was just released last week, and if you click on the link above you will be one of the first ones to see the great job he has done.  The link you would access on your computer is fully functional, and the mobile website is still being tweaked.  It is not only for patients but caregivers as well, as you can see if you click on the 'Welcome Video'.  So as a result of this effort, Donna and I will be a part panel discussion at a Leukemia and Lymphoma meeting in La Jolla later this month where we both will be discussing 'the journey of a long time patient and care giver'. 

We are leaving next week for a week in Montana visiting Sarah and Kevin.  I plan on getting back into fly fishing on the banks of the Yellowstone and Madison rivers no less.

Hoping to land the big one...

Terry

Ho Ho Ho

Well, there is more than one reason to be jolly this Christmas Season.  It has been a while since I have posted, because I have really not had much to report on the medical front.  I thought that I would wait until after my 14 month follow up with the doctor on December 16th.  All of my blood numbers continue to improve or remain stable.  My physical exam showed nothing remarkable. 

Sarah & Kevin

In my last report our daughter Sarah had just gotten engaged.  As of December 6th, she is now officially married.  In 3 short months Sarah basically planned an entire wedding.  It was really a magical affair, and she did an outstanding job. 

Lois Genevieve

We love her husband Kevin's family and are so fortunate to have him as a son-in-law. 

Also in my last report our son Jeff, and his wife Kristen had just had a baby girl.  Even though she was born 5 weeks early, she is now in the 75th percentile and has caught up nicely and is doing great.

I continue to respond well to my drug, Imbruvica.  Several months ago I had a slight blip where my blood numbers had started going the wrong way, but that has seemed to correct itself and my white blood count is now the lowest it has been since I began this treatment.  Most of the side effects have gone away and I am now experiencing only very minor irritations.  Based on my prognostic markers I am not supposed to do that well on this drug, but it appears that I am an exception to the rule.  A fairly high percentage of people that have been heavily pre-treated and have some of my markers relapse in less than a year. But as my blood numbers show, I continue to improve even after 14 months.  It is unclear how long I will continue to receive the drug as a part of the RESONATE trial, but it appears that they want to make sure they are capturing LONG TERM data, so it seems like I will continue on the trial for at least another year.

On a sadder note, Donna's Dad had a minor stroke 2 days before the wedding.  He has passed thru the rehab facility and is now home with a full time caregiver, who has been a great addition to the family. Donna's Dad is still weak on the left side, but we are lucky that it didn't affect  his speech or cognitive abilities.  Then last week, my Aunt Lois (my Dad's sister) fell and broke her shoulder and her wrist. So my sister Rebecca, and her partner Cherese have gone to Fresno to try to provide support.  Latest reports on Lois is that she is getting better day by day, but it will be a long recovery.  My Dad and his Lois were planning on going there for Christmas, so they are there now.  After a change in my Aunt Evelyn's medicine she seems to be getting back to her old self and is even planning on helping to take care of Lois.  Please pray for all of them that these issues can be quickly resolved.

Being on a treatment that has put me into remission has given us the ability to do some traveling.  We helped our son Matt and his wife Randi move from Seattle to Berkeley in August.  Randi is in a PhD program at Berkeley and Matt was able to transfer to Trader Joe's down there.  We then moved a load of stuff to Sarah's new home in Livingston, Montana (where she went directly from her honeymoon).  It was an exciting trip because we got to visit our friends Tall Tom and Holly, and their daughters Ashley and Megan in Marysvale, Utah.  5 days later we got to go to Oahu for 10 days with friends of ours who had access to a house on the North Shore.  We had never been to Oahu and it turned out to be a wonderful trip full of beautiful scenery, golf, and a trip to the Pearl Harbor Memorial.  If things settle down a bit, we plan on making a visit to Berkeley in January, maybe to Seattle and Fresno in February or March, and then to Montana in April.  But we have to be back home in May for the birth of our 4th Grandchild.  Yes, our daughter Aimee and husband Bryan are expecting a baby girl in May.

May the joy of Christmas bless you and yours this holiday season.

Terry

A Boring Report

I haven't posted for a while so I thought I would post a short update on what is going on.  The good news is that this drug, which goes by 3 names, PCI-32765, Ibrutinib, and finally Imbruvica, seems to be doing what it is supposed to do.  My counts are all moving in the right direction and my side effects have been minimal.  I can't say that they are non-existent, but they do seem to be manageable, and also transient.  They seem to come and go, but mostly they come and then disappear. I have monthly visits until April and then I go to every 3 months. 

The drug is made by a company called Pharmacyclics, but because they needed funding, they partnered with Jannsen, (who is actually owned by Johnson & Johnson).  In November the FDA approved Imbruvica for Mantle Cell Lymphoma, but for some reason held back the approval for CLL.  The thinking was that they were waiting for some Clinical Trial data that would be finalized in February.  If everything goes according to plan, it should be officially approved in February for CLL.

As some of you remember, I am getting monthly infusions at Moore's Cancer Center of IV immunoglobulins, or IVIG.  I have been doing this every month since November of 2007.  Since I have a compromised immune system, this monthly infusion helps protect me against common infections.  I was recently told that in the near future Medicare will no longer pay for Medical Center infused IVIG.  It will have to be self administered at home.  The problem is that at home you can't infuse it as fast, so you have to have WEEKLY infusions that last 2 hours.  I wonder how long it will be before we have to perform open heart surgery on ourselves?

We continue to make plans (now that we can) and we will be traveling quite a bit in the next 4 months.

Boring is good!

Senior Moment

After waiting 18 months to get Ibrutinib (now called Imbruvica), you would think that picking up my pills would be the foremost thing on my mind.  So last Friday I went down for my 1 month checkup and blood draw.  My blood numbers are going the way they expected them, and the doctor visit showed improvements in both my lymph nodes and spleen size.  So after getting the good report we decided we should get some lunch on the way home and we walked RIGHT PAST the pharmacy.  So at 3:30 that afternoon (after I was home) when it was time to take my pills I realized that we had FORGOTTEN to pick up my next month's supply.  I frantically then called back down to La Jolla and asked what I should do.  I knew I couldn't get back to the pharmacy by the time they closed, but when I called them they said not to worry about it since I would be back on Tuesday for my monthly IVIG infusion.  They told me that 3-5 days off of the drug is not critical because it is such a slow acting drug.  Whew! 

Enough of the sob story.  I am actually feeling pretty well.  No major side effects, just a lot of small irritating ones.  None of them are as bad as some of the side effects I have had in my past treatments, so that is a blessing.  The strange thing about this drug is that it causes your white blood count to rise.  That is really counter intuitive.  You would think that since CLL is mostly a disease where the white count goes up, that you would want your counts to go DOWN?  I started this treatment at 80,000 (remember normal is between 5-11,000), and after a month I was up to 160,000.    This means that the white cells that were 'hiding' in these places are being forced out into the bloodstream, hence a rise in white count. This makes some sense because my lymph nodes and spleen have shrunk down to almost nothing. This is pretty much normal for this drug.  Most of the people that I know that are on the drug said it takes about 2-3 months before the counts start to fall. 

My new drug was approved by the FDA for Mantel Cell Lymphoma this month, and is expected to be approved for CLL after the first of the year.  I have been told that this really won't affect me and my access to the drug because I am on one of their trials and they still want to track my progress.  So I guess I will keep getting the drug from them until they decide it is no longer appropriate.  This is especially good news because the price of the drug has been set at $91 / pill, which for me would be about $8,190 per month before insurance.

Last month I did make a trip to San Francisco to Genentech to give a 'patient's perspective' on their drug Rituxan.  This gets a bit confusing.  I am no longer taking Rituxan, but have had it over 30 times during various treatments.  The people at Genentech know of my situation, but for some reason they still think that I can provide some information to their marketing teams.  This time there were over 30 participants that I spoke to and I think they got something out of it.  I also got a tour of their research and development lab, which gives me a greater understanding on why these drugs cost so much. I also had an hour long web interview with a company that is marketing a new CLL drug.  At least I am putting some of my experience to good use.

Being on this drug has allowed me to better PLAN my life.  For the last 6 months I have been trying to figure out what my schedule will be.  Now I know what it will be for at least the next 6-12 months.  That is a relief.  I am now able to visit friends in the desert, to go up to Seattle and visit my family up there, plan another trip to Spring Training in Arizona and think about a River boat trip to Europe next year.  Life is good.

Happy Thanksgiving to all.

At the Crossroads Once Again

Today I had a visit with Dr. Kipps and the news I had been expecting for about 2 months finally happened.  It looks like I am beginning a new round of treatment, maybe as soon as this week.  End of short report.

This has not come as a complete surprise.  My numbers have been going the wrong way for over 3 months, a month after I stopped the clinical trial.  Today, Dr. Kipps took a long time in reviewing all my data before he came in to see me. When he walked in, I told him that this was not a good sign, and I immediately figured out what he was going to say.  Once again, he is concerned that I will spiral out of control too quickly, and then my options become limited. 

 As some of you remember, there was some glimmer of hope that I could wind up getting the drug (Ibrutinib) that was on the other arm of the trial.  This appears NOT to be an option.  The drug company is pushing so hard to get this approved for the general population (see BIG $$$$$), that small matters, like taking care of those people who proved the value of their drug by participating in a clinical trial, are pushed aside.  I do understand rules and regulations making sure that drugs are safe for people, but I don’t think the fault lies entirely with the FDA.  I think the drug company should step up and take some moral responsibility for their role in this.  I could devote an entire blog to this topic, but I will save my venom for killing those nasty cancer cells.

 Based on the fact that I have had Autoimmune Hemolytic Anemia, and the fact that my prognostic and genetic markers make me a difficult patient (no comments) to treat, Dr. Kipps is fairly certain that no treatment using chemotherapy will ever be in the cards for me again.  The protocol that I will be starting is using two drugs, Revlimid, a pill, and Rituxan, an IV infused drug.  The pills are given 21 of 28 days on a monthly cycle, and the Rituxan, is given once a month.  The length of treatment should be about 7 months, with a possibility of an extension depending on how I am doing.  Revlimid is an immune-modulating drug, and Rituxan is a monoclonal antibody.  Neither of which is chemotherapy.

Right now we are working on approval from the drug company and from the Insurance company to determine my eligibility and the out of pocket costs to me. 

 There are several other drugs that are close to beginning clinical trials, which have shown very positive results. So if this doesn’t work, there are still things in the wings that may fit the bill for me.

 None of this news took away from a joyous event for the Evans Family 2 weeks ago.  Our son Jeff, married his longtime girlfriend Kristen, in a beautiful ceremony.  Family and friends gathered together to celebrate this memorable event.  Since my diagnosis I have experienced 3 weddings and the birth of two grandchildren.  I thank God every day for the life he has extended to me and the fact that I am healthy enough to enjoy all the blessings that he has bestowed on our family.

 For those of you that care, Crossroads was the name of a song that was written by the famous blues guitarist Robert Johnson.  It was made popular when the Cream (Clapton, Baker, Bruce)recorded the song, and later became the name of a boxed set of Eric Clapton songs from all of his groups, The Yardbirds, John Mayall's Blues Breakers, Cream, Blind Faith, Delaney & Bonnie & Friends and Derek and the Dominos, as well as his solo career.  For some odd reason when I chose my blog title, that song came to mind.  Don't ask me why...It was the 60's.

 

Terry

Another Reason for Celebration and Equipoise

Two weeks ago had my one month follow-up blood test and I also received my monthly IVIG infusion.  All my numbers remain the same, as I would have expected.  Now I get to wait another month and have a bone marrow biopsy to really see what is going on.  For the last 6 months I have been receiving Ofatumumab, which is supposed to manage the CLL, at least in the short term.  Next month it will have been 2 months since I received an infusion, so we will see what happens then.

The most exciting news in the Evans Family is the birth of our second grandchild on April 15^th.  Naomi Jean Evans came into this world very quickly.  We received a call around 5am saying Matt and Randi were going to the hospital and at 8:15 she was born.  Donna flew up that day and I followed the next day.  We stayed in Seattle at Matt & Randi’s  for a week and it was a real treat to be able to spend time with them, and the new family member, Naomi.

There was an interesting post 2 weeks ago by a prominent CLL expert named Dr. Susan O’Brien.  In this post she argues that there is no sensible reason for not allowing the 180 of us who were on the Clinical Trial and received Ofatumumab to now receive the trial drug, Ibrutinib.  The interesting thing is that ALL of the major CLL experts in the U.S. agree with her.  The problem here is the FDA.  They follow guidelines that are completely out of touch with reality.  It is well documented that Ofatumumab will give CLL patients a partial short lived remission.  So when I start to relapse, wouldn’t it make sense to move me over to the Ibrutinib which has had a 95% success rate in controlling CLL.  Although the trial officially closed in April, the documented results may not be available for over a year.  So, I suppose that you hope and pray that you can wait that long and have the drug approved for general distribution.  Seems like a crazy system to me.

http://www.ascopost.com/issues/may-1,-2013/ibrutinib-cll-trial-where-is-the-equipoise.aspx

So which category did you fall into?  Already knew what equipoise meant, didn't know, but looked it up, or didn't care?  I'm not doing your work for you.  Figure it out.

 

 I had an ‘end of trial’ CT Scan in March and results show that my lymph nodes have basically stayed the same (after initially shrinking at the beginning of the trial).  I am scheduled for another bone marrow biopsy in June to see how the drug impacted the marrow.  Then, in July, I will see Dr. Kipps and figure out what my next steps might be.  I’m still feeling well and enjoying life.

 

Terry

D(ONE) Once Again!

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

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

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

 

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

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

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

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

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

Terry 

8 Down & 4 To Go

I have finished my 8 weeks of Azerra (Ofatumumab) and now get 5 weeks off.  All in all the treatment was a non event for me; it just takes a long time to get.  It is usually an 11 hour day, which is probably why I am tired after the infusion.  I have no real side effects with the exception of some slight numbness in my fingers and lips and a slight cough , which I always had with Rituxan.  So I get to enjoy Christmas, the New Year, and a cruise to Mexico with the Barden side of the family in mid January.  Life is good.

After the ASH (American Society of Hematologists) 2 weeks ago, there is a lot of encouraging news of the drug front.  Ibrutinib, which is the drug in the other arm of my trial, has had a 96% progression free survival on patients 22 months out.  This is nothing short of amazing.  The drug is a pill, taken daily, and has very few side effects, all of which can be managed.  Here is a link to a talk by Dr. John Byrd from OSU talking about the Ibrutinib trials.  http://www.onclive.com/conference-coverage/ash-2012/Dr-Byrd-on-Ibrutinib-in-CLL

I am now on a monthly schedule and will get 4 more doses before I complete the trial comparison in April.  Even though my blood numbers are all in normal range, they are at the high end, and have not dropped to the low levels that I experienced in the other trial.  I did have a doctor exam on Tuesday and he said that everything looked good, but that he would have a better idea after my 5 weeks off. 

This is somewhat of a two edged sword.  If I completely respond, then I won’t need the Ibrutinib.  If I do respond, then I am not proving that drug A is better than drug B, which is the whole point of the study.  And if I don’t respond that well, and/or if I relapse quickly, then I will need treatment again, and hopefully they figure out a way to get me the drug A. 

Other than a few “over 65” medical issues, I have been feeling fine.  Everything is on track for a Family cruise in January, a trip to Seattle in February, a new grandbaby in April and a wedding in July.  All just part of the normal Evans family life.

Please keep my life long friend 'Tall Tom' in your prayers as he gets an experimental stem cell lung treatment at the end of December.

Wishing everyone a Merry Christmas, believing that there is a reason for the season, and a Healthy and Happy New Year.

Terry

4 Down 8 to go!

I just wanted to send out a quick update after my first month on the Trial.  I have had 4 weekly infusions and so far all the results are positive.  I have 4 more weekly infusions and then 4 months of monthly infusions.  So if all goes according to plan, I will be done in April. 

So far the only real issues have been the length of the infusions.  They take between 5-7 hours so it winds up being a very long day.  I have not had any infusion reactions, which are pretty common with this drug.  I have also not had any post infusion reactions with the exception of being a little tired for a day or so.  I did wind up getting a cold after week 2 and I am just now getting back to normal.  I don’t know whether it was lengthened because I was in treatment, because I have a compromised immune system, or because it was just a really bad cold.  I did start preventative antibiotics just to protect myself from a more serious infection.

I did have a 4 week check by the doctor and he commented that all my blood numbers are moving in the right direction, and my nodes and spleen have shrunk.  He did mention that the most dramatic results will be in the first 8 weeks, and after that we will probably not see much movement.

All in all it has been a boring first month, so let’s hope the remainder of the treatment goes as smoothly.

Terry

About Time to Post

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

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

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

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

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

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

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

Terry

A New Report for a New Year

Well, in October Dr. Kipps told me to return in 3 ½ months. On Tuesday I returned, knowing in the last few months my blood numbers had remained steady, and what lymph nodes I thought I could feel, seemed pretty small to me. It turned out my blood numbers had gone up ever so slightly, but still in the ‘normal’ range. He could feel the lymph nodes, but said that they were ones he had felt before. His comment to us was that this was ‘an excellent exam and see you in six months’. End of Short Report.

Dr. Kipps ran a couple of extra tests that can further check for disease progression, but these tests will take a couple of days to get the results. He said he didn’t think that there was going to be much going on, but he wants to check just the same. I have been trying to find a local oncologist that can deal with any day to day issues and think that I have found one. Several people in my CLL Support Group have seen the same doctor in Fullerton and Dr. Kipps has worked with him (or he with Dr. Kipps), so I will make an appointment with Dr. Sharma in the next 2-3 months. After discussing my plan with Dr. Kipps, he said there was no need for me to come back to see him for SIX MONTHS. That will be the longest that I have gone without seeing him since that first appointment in November of 2007.

My goal is to remain in remission as long as I can because there are some amazing new developments in the treatment arena. Two of my CLL friends are enrolling in Clinical Trials for a new drug that has shown remarkable results. There are several other new treatments that have shown equally promising results, but are just in the beginning stages of Clinical Trials. I am hoping by the time I need treatment again, there will be something non-toxic (read non-chemotherapy) that will be available for me.
It seems like between the times that I post there has been another friend diagnosed with cancer. A Credit Union friend’s husband is being treated for Diffuse Large B-Cell Lymphoma, and is responding to treatment. A friend from church had a bone marrow transplant for a bone marrow disorder and is now in full remission. Our friend who has Melanoma has had VERY aggressive treatment, but she is responding well and just got back today from a 2 week RV vacation. Another friend from my CLL support group received a new type of bone marrow transplant at Stanford and is now back home in remission.

2011 was a big year for the Evans Family, two marriages of the Evans children, a 40 year anniversary for Donna and me, the marriage of our nephew, and the birth of our first grandson Wyatt James Watkinson. Four years ago I was not sure if I would ever see any of these things, but by the grace of God, here I am. You learn to appreciate all of those things you took for granted. Every day is a gift, enjoy each and every one of them.

I am blessed to have such a great family and friends.
Terry