The Results are IN!

It has been 6 months since I started my new trial and yesterday I got the results of how it is going so far.  Based on the CT Scan and the Bone Marrow Report I am doing VERY well.  End of short report.

I am going to get a little medical here, but I hope that my explanation will make sense to most people.  If you remember, in January it was determined that even though my numbers weren't off the charts there were indications that my trial medicine (Ibrutinib) that I had been on for 4 1/2 years was just beginning to be less effective than it had been.  Because of my previous treatments and my poor genetic markers, my options had become limited.  I searched all over the country for treatments that would fit my circumstances, and really did not find anything that fit my situation. I was willing to travel, willing to enter another Clinical Trial, my timing wasn't right and there were only a couple that might have been opportunities, but they all had some issues.  Once again in my 18 year journey, 'right place, right time' happened.   Dr. Choi , my doctor, told me he was creating a trial for people just like me.  I would remain on my old drug, Ibrutinib, and we would add a new drug, Venetoclax.  The idea was that the new drug may once again make the old drug effective, and/or the new drug would do the heavy lifting and bring me back into remission.  Unfortunately with me still being the only person on the trial there are no other people to compare my results to.  So the bottom line is that it is working, but we really aren't sure HOW it is working. 

How do we measure the fact that it is working?  There are actually 4 different ways.  The first is thru normal blood tests, and those results have shown a dramatic improvement, getting all my blood numbers into NORMAL range, and the best they have been in over 8 years.  The second way is thru a physical exam to palpate the lymph nodes and spleen.  So basically those nodes and organs that you can feel near the outside of the body.  Right now they cannot feel any of these.  The third way is to measure the results of a CT Scan that looks at the internal lymph nodes.  All of my lymph nodes have shrunk by at least 50% and they appear to be normal in size.  The last way to measure is thru a bone marrow biopsy.  This is where they can tell how much disease is actually in the bone marrow.  When I was first treated in 2007 83% of my cells in my bone marrow had CLL in them.  In May at the beginning of the trial I had 19% CLL in my cells.  And this last test done 2 weeks ago only showed .3% in my bone marrow.  That is NOT a typo.  It is 3/10 of 1%.  If this number had been 0% then I would have been classified as MRD negative. Which stands for Minimal Residual Disease negative, which means in 100,000 cells they can find NO leukemia.  Actually I was not surprised that they still found some disease.  I have had a LONG journey, Many, Many treatments and have a VERY complex type of CLL, so I am a tough patient.  They will run another bone marrow biopsy in 6 months to see if we can get rid of this LAST bit of disease.   Even if I get to no measurable disease this doesn't really mean that I am cured.  All it means is at that point in time they cannot find any disease.  It doesn't mean that it will never come back, because it may come back in the future sometime.  That being said, the clinical trials of 'untreated' patients (those that have never had any type of treatment) that are on both of my drugs are showing an extremely high rate of MRD negative two years out, which is extremely promising.

But that is actually not all that has happened since my last post.  In the middle of October we went to Texas to visit my Dad, Lois, Becky and Cherese.  After two days there I developed a fever.  No other symptoms, just a fever.  I felt so bad we came home two days early.  It was a good thing we did because the fever lasted 21 days.  Even with my 11 years of treatments, I have never felt so bad for so long.  Some days I was in bed for 16 hours.  You can only watch so much of the migration habits of penguins on the Animal Planet.  I was on three different antibiotics, had 3 doctor visits, one hospital ER visit, multiple x-rays, one CT scan, multiple blood tests and cultures.  The hospital of course wanted to admit me in case one of the cultures came back positive, and I politely declined, not wanting to expose myselft to something even worse on the off chance the test came back positive.  Of course the test came back negative, so it would have been for naught.  All of this testing came up with FUO.  This of course is a very technical medical term which means Fever of Unknown Origin.  Bottom line they have no idea what caused it.  It was probably a virus, probably picked up in the airport or on the plane, but no one really knows for sure.  I never stopped either of my two CLL drugs because the risk of stopping was greater than trying to rule it out as a cause.  Plus there has been no reported fever only side effects on either one of the medicines.  So it cleared up on its own.

I did have another infusion this week and had a fever reaction 4 hours after that, but it went away by morning.  Maybe it was a onetime thing. I hope so!

Because of the fever, I missed moving our daughter Sarah and her family to Arizona, and had to cut our trip to Texas short.  It is a good thing I got well because we had a golf outing to Temecula planned this week.  On Sunday we leave for Maui for a week and in late December we are going to Italy for 2 weeks.  I can't afford to be sick.

I continue to spend time with all of our grandchildren and this month we even got to visit with all of them, even though it wasn't all at the same time.  They are truly a blessing.

I have also begun to spend more time with the nonprofit I am involved with the CLL Society.  I am officially the Director of the CLL Society Support Network.  I oversee all of the 28 CLL Specific support groups in the United States and Canada.  I have personally trained 50+ coordinators on how to run their support group and adhere to the guidelines that we have established. I have also personally traveled to about 10 of these cities to assist in their establishment.  I continue to speak at various Educational Conferences and find it very rewarding to be able to 'give back' some of what I have learned.  I know some of you may find it surprising that I would like to get up in front of 200 people and speak. (Ha, Ha, Ha). We pride ourselves in being the only leukemia group in the US that devotes itself only to CLL.  With CLL being the most prevalent form of Adult Leukemia, we felt that there was a need for a place people could go for Support and Education specifically about CLL.

On another positive CLL note, my friend and founder of the CLL Society, Dr. Brian Koffman has just posted that they can find no CLL in his body after undergoing a novel treatment called CAR-T.  There is hope that this will be one of the ways we can CURE CLL in the future.  It is not for the faint of heart and should be looked at very carefully right now.  Here is a link that describes his journey  Dr. Brian Koffman's CAR-T Journey   Brian is also being honored at a dinner before the ASH meeting (Amercian Society of Hematologists) that is honoring 4 people who are Heroes in the CLL Community.  It is quite an honor for him to receive this award.

Thank all of you who contributed to my link to the CLL Society fundraising page around my birthday.  I had no idea what to expect, and the response was overwhelming.  Donna put the same link on her Facebook page and also wants to thank everyone that contributed.  We are truly grateful. Unless something radical happens I probably won't post anything until after the new year. so I will take this opportunity to wish everyone a joyous Christmas and Happy Hanukkah.

Terry

Giving Thanks!

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

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

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

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

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

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

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

Another milestone reached

This Tuesday I went to UCSD (Moore's Cancer Center) for my 6 month checkup for the Imbruvica trial.  This milestone is significant because I will now be able to get a 90 day supply of the drug instead of just 30 days.  It also means that I will now only have to see my doctors every 90 days.  I still go down there every month to get my IVIG infusion (to protect me against infections), but it will be less time because I won't have a doctor visit.  All my numbers are either staying stable or are moving in the right direction.  A physical exam  showed nothing remarkable.  No lymph nodes of any significance, and my spleen was undetectable.  All of this is really positive.  After 5 failed treatments, this one appears to doing the most good, with the fewest side effects.

No one is quite sure how long us 'lab rats' will be able to stay on the trial.  After it was officially approved by the FDA in February, there was some concern that all the trials would be ended.  But that hasn't happened and now the feeling is that they may still want to accrue long term data. 

One nice thing about this treatment is that I can finally do some planning.  We were able to spend a week in Sedona playing golf, sightseeing and visiting friends.  Having spent a lot of time there in years past, I can still say it is one of the most beautiful places on earth.  We are also leaving Friday for Seattle for our granddaughter's FIRST birthday party.   

Coming home from UCSD with my brown paper bag (yes, that's how I get the drugs) and $25,000 worth of unlabeled / unmarked drugs in my possession, I was hoping I didn't get pulled over at the immigration checkpoint asking me what I was smuggling into the country.

Along the way in this journey I have met many fellow CLL travelers, both in person and thru the Internet.  This week, we lost a long time traveler David Arenson.  He was trying to get ready for a transplant, but didn't make it.  He had battled some of the same issues that I have had over the years and his blog was one of the first ones that I hooked up with after I was diagnosed.  He was a great writer and storyteller.  His insight and wisdom will greatly be missed. 

His passing also makes me think about the nature of this disease.  Right now there is no cure.  Only a transplant will cure you and that only has a 50% chance of success, if you are under 65 and if you live through it.  We have a member of our CLL support group that had a transplant last Christmas and she is STILL in the hospital with complications.  I am grateful that the advances in treating this disease have been nothing short of amazing in the last 3 years.  None of these new therapies (which are all NON-chemo based were around when I was diagnosed in 2000.  These new therapies are giving people longer, durable remissions with manageable side effects.   If I had gone with traditional therapies and stayed with doctors that were not specialists in this disease I would not be here now.  Even though the path has not been easy, I feel blessed every day that this path was available to me.

Terry

04/29/08 - More Disappointing News

Well, today I had more blood work done and my Red count continues to go down. It seems that the Prednisone is not kicking in, or is just not working like it did before. The plan is to increase the Prednisone by 20mg to a level of 80 mg / day and to go down to La Jolla on Thursday and have another blood test and do a type and cross match for another blood transfusion. It will take about a day to find the correct blood (remember that I have difficult blood to match), and the plan is that I will go back down on Friday to have between 2 and 3 units of blood. The reason I am going back to La Jolla for this is that they have to give you the transfusion at the place they do the type and cross match. In La Jolla they can do the transfusion at the Infusion Center and I would be out at the latest by 7pm. If I did it up here they would have to admit me to the Hospital and I would have to wait for them to find the donor blood. The last two times I had it done up here I was in the hospital for 24 hours each time, and I got NO sleep. So even though it is a longer drive, it beats the inconvenience of being in the hospital for 24 hours.

Because they want to try to stop the Hemolyzing (killing off of) the red blood cells, they want me to come back down to La Jolla next week to get infused with IVIG, and with low dose Rituxan. Next week they will do this over two days, and then continue once a week for 3 weeks. The hope is that between the Prednisone, the IVIG and the Rituxan, this will stop the hemolyzing. After it is stopped then they will try to start on a therapy for the CLL, which would be sometime in June, assuming everything goes as planned.

The funny thing is that I am really not feeling that bad. I am playing golf, doing chores around the house, and not really very tired. So my body seems to be dealing with all of this pretty well, but I know I can't continue on this downward trend.

This is not exactly the way I would have mapped it out, but I am believing that this new course is the one that will get be back on track.

Terry

04/24/08 - Nuts!

Well, it looks like I have had a temporary setback in my positive progress of the last several months. On Tuesday 4/23, I went down to La Jolla to see Dr. Kipps (after 2 months), to get my blood test, and to have my monthly IVIG therapy. Things did not turn out quite the way we would have liked them to. Although I had been feeling fine, with no muscle weakness or major tiredness, the blood work showed that this was not the case. My hemoglobin came in at 11.1, which was about 2.6 less than the 13.7 it was on April 4th. We hoped that this was just a minor setback and so today I had another blood test to confirm it, and this one came in at 10.7. So, it appears that I am hemolizing my red blood cells again, and probably going back into Autoimmune Hemolytic Anemia (AIHA). If you remember from my previous posts, this is not uncommon, and happens more than half the time in patients. Mine just took a whole month to come back. Because of the decrease in red blood cells, they also decided to give me a shot of Aranesp while I was getting my infusion. Aranesp is a man-made form of a protein that stimulates the bone marrow to produce red blood cells. It takes about 1-3 weeks to have an effect, but they decided to stay ahead of the game and give me the shot anyway.

After talking with the doctor’s office today, it was decided that I will go back on the prednisone to see if we can nip it in the bud before it gets to the point where I would need a transfusion. The last time I started Prednisone my Hemoglobin was around 7.5, so I am much higher than I was back in November. This course of Prednisone will start off high, but if everything goes the way they think, I may start tapering off the dosage as early as next week. The doctor wants to keep me on Prednisone for as little time as possible. I will go in for a blood test on next Tuesday (4/29) to see if the Prednisone is working, and weekly thereafter.

There are still some issues that need to be dealt with, such as why did I start hemolizing my red blood cells. Bottom line right now, no one knows. There is also a possibility that I could become steroid resistant, and it would not work as it did before. If it keeps coming back, then we need to look at some other alternatives. Since the bulk of the red blood cells are killed by activated macrophages from the spleen, one drastic way of controlling AIHA is to remove the spleen surgically. This seems a little drastic to me, and I would like to keep all my body parts if possible. Another option is to have another round of Rituxamab with high dose steroids. According to Dr. Kipps this alternative has a high success rate, and in some cases can put you in remission for a year or two, and gets rid of the AIHA.

As you can see, this is not something where you just put together a ‘standard’ protocol, and everyone goes on their merry way. If I were being treated somewhere other than UCSD, I am sure they would have a different list of protocols that they would use. I know this may be too technical or too boring for some people, and I apologize, but if you are interested in a more detailed description click on the AIHA link on the right hand side of the page. It will definitely make your head spin.

Hopefully this will work, and I can move on to the next step. I must admit this week was an emotional letdown. Physically I am actually feeling pretty good and have played golf 7 times in the last 2 weeks. I am hoping and praying that this is only a temporary setback and I will be able to move on to the next step shortly.

04/05/08 - Still Plugging Along

Last Friday I went down to La Jolla for my IVIG infusion and a blood test. The infusion was uneventful, but the blood test was pretty positive. My Hemoglobin went up from 13.9 to 14.4. My White Count went from 40,000 to 29,000. This was all after being completely off of the Prednisone for about 11 days. My White count is the lowest it has been since June of 2003, which is a good thing. I have noticed that my lymph glands in my neck are still getting larger, but that is expected because the Prednisone was keeping them down in size.

Next week I go for an annual physical, which is the first one I have had in about 3 years. I don't expect anything major to come out of it, but you never know. I will take all of my updates and reports to my doctor and let him know what has been going on. He knows a little about what has been going on, but doesn't have the full picture. I am sure it will be an eye opener.

I have been playing golf, and started going to the gym. I went to the gym yesterday, and I may have overdone it (but maybe it was the two cups of STRONG coffee I had a breakfast). I didn't seem to have much energy all day, so I am hoping that is all it is. I seem to be pretty tired at night, and need my sleep. I will go and have a blood test tomorrow after my doctor appointment to just make sure my numbers are holding up. We are speculating that perhaps the Prednisone was artificially keeping me up, and I even though my blood numbers are better right now, I am still recovering from the ordeal.

I don't have another La Jolla visit until the 22nd of April, when I have both a doctor appointment and an IVIG infusion. I would expect that there will not be much going on until that time.

Next week also begins my 8th season as the Commissioner of the City of Long Beach Twilight Golf League. I was going to retire from that job at the end of last season, but decided to stay on one more year. My partner is my son Jeff, who works at the LB Water Department. As the Commissioner, I take care of the schedules, coordinate with the golf courses, and update all the scores. I have a great program that automates most of the chores, and after 7 years it is not very time consuming. Everything is handled over the Internet and thru email. Being retired, it gives me something to do, and really is kind of fun. Plus, it is kind of nice being King.

Fore,
Terry

3/22/08 - Free From Steroids

It has been a while since I have updated my Blog, but that is because nothing much is going on. In my last report I told everyone that I was going to be completely coming off of the Prednisone, and then checking my blood work to see how I did with NO help. My blood test last week had my Hemoglobin at 13.9 (still very good) and my White Count at 40,000 (the lowest it has been in over 4 years). So with those tests, I was completely taken off of Prednisone as of last week. I feel fine, with no weakness or shortness of breath. Everyone tells me that I have a ‘rosy’ complexion and I am looking good. I have noticed that my lymph glands in my neck have gotten a little larger, but this is probably expected as the Prednisone was keeping them down. But for right now, it looks like we have the Autoimmune Hemolytic Anemia (AIHA) under control.

I go down to La Jolla next Friday for my IVIG treatment, and to get another blood test. All indications are that this test will come out fine, and I will not have to go back on Prednisone. I will then see Dr. Kipps at the end of April, at which time we will discuss what the treatment plan (if any) will be. If my red count stays up and my white count stays down, he may decide not to do anything until those things change.

Overall, I am doing pretty well. I am still playing golf on a regular basis, and we just got back from a week in Fresno (visiting my wonderful Aunts and my Dad and his wife) and Monterey for a Credit Union Conference. I felt fine even after all of that traveling. Donna has officially retired as of February 24th, so it has made traveling a little easier.

I know that several of you have recently given blood and the Red Cross and I thank you for the donation.

SIDE NOTE
Both Donna and I belong to a List Serv from the ACOR (American Cancer Online Resource) group specific to CLL. On this list, people with CLL or their caregivers post questions to members of the list. People on the list are in various stages of the disease, all the way from just being diagnosed, to having tried all the therapies and treatments that are out there. Since everyone responds differently to treatment, you can get a wide range of answers to your questions, so you have to sort out the responses and figure out how they pertain to your particular situation. However also on this list are several people with a research and/or medical background that will respond to questions. One of these people is Dr. Terry Hamblin from the UK. On any given day there might be 30% of the questions directed specifically at him, and on any given day, there may be 25% of the responses from him. It is unbelievable to me that in this day and age that someone would take the time to lend his expertise to total strangers that are only drawn together by this disease. It does help that he is an EXPERT in the field, has an active medical practice and has written many papers on the disease. To learn more about Dr. Hamblin, you can click on the link on the right hand side of the page.

This month he announced that he was retiring and was going to stop responding to questions that are put on the ACOR CLL Board. This was a very disappointing day for the Evans family and I will explain why. When I was the sickest and it seemed that we were not getting the correct information or the correct treatment, Donna went outside the box and emailed Dr. Hamblin directly and gave him my lab numbers and what treatments that I had been given. She asked him to confirm her suspicions about my Autoimmune Hemolytic Anemia, and what treatment he would recommend. He quickly responded to her email, confirmed her suspected diagnosis, told her what treatment he would recommend, and said that we should do it QUICKLY. Right after that email, I went to see Dr. Kipps for the first time. Not surprisingly his diagnosis and treatment were exactly the same as Dr. Hamblin's. As for the QUICKLY part, you may remember that Dr. Kipps would not let me leave his office without me agreeing to be admitted to the hospital for a transfusion of 4 units of packed red blood and high doses of steroids. In the past, I have not discussed the seriousness of my condition at that time, but I can tell you (and Donna will definitely concur) that I was very close to checking out. If left untreated, I would have probably gone into cardiac arrest in one or two days. If it weren't for the persistence of Donna, the agreement of the diagnosis by Dr. Hamblin and the action of Dr. Kipps, I am convinced I would not be here today. That is why Dr. Hamblin is so special to us.

2/26/08 - Still 'Looking Good'

It seems like some people like the detail of my reports, and some just want to cut to the chase. So in order to satisfy both camps, here goes:

Short and sweet:
Dr. appt today, good report, red count stable, and white still going down. Plan to taper off Prednisone in a month, no other treatment right now, go back in 2 months to see the Dr.

Verbose Version:
Today I had my monthly appointment with Dr. Kipps and all is going well. As you might remember, I have been tapering off the Prednisone for the last month. I am now down to 5 mg / day (from 60 mg / day). I was having blood tests every week during this time to make sure that my counts didn’t start to drop (the hemoglobin – red), and the white count (WBC)didn’t rise. At the end of last month, my hemoglobin was 14.3 and WBC was 111,000. Today my hemoglobin was 14.3 and my WBC was 63,000. So even with the decrease in Prednisone dosage, my hemoglobin stayed the same (which is at a normal level) and my WBC has dropped. My WBC is now at the lowest level it has been in almost 3 years. Now before everyone gets too excited, this probably is temporary. With the combination of previous Rituxan, Fludura and Cytoxan treatment, and the Prednisone, and the IVIG, it has scared a bunch of those bad old lymphocytes to get out of Dodge.

For right now, Dr. Kipps wants to wait and see. He wants me to taper completely off of the Prednisone and see how my numbers hold up. He has put me on an alternating dosage of 5mg one day and 0 the next. We will do regular blood tests and then at the end of a month if all my numbers look good, I will go completely off of the Prednisone, but still keep doing regular blood tests. At my current counts and with my current condition (lymph nodes, spleen, etc), Dr. Kipps is in no hurry to begin additional treatment. But because we have not really completely treated the ‘cause’, we need to be ready when and if the WBC numbers rise. So today he gave me additional information about two treatments that he may want to try once the time comes. It is very encouraging to know that even though I am stable right now, we are looking forward to the time when I may need additional treatment, and we will already have a plan in place.

I just can’t stress enough how impressed we are with Dr. Kipps and all the staff at UCSD. We are certainly blessed to have someone so competent, close in geographical proximity, and so caring. It certainly takes some of the burden off of dealing with my CLL. He is constantly researching ways to treat and ultimately cure this disease. He just had his latest study published the week of February 11-15 in the Proceedings of the National Academy of Science. To learn more about this study click on the INFORMATION LINK on the right side of the page, and then click on ‘Dr. Kipps and Gene Therapy’.

02/16/08 - Still Decreasing Prednisone

Unlike Roger Clemens, I am admitting the use use of steroids. The good news is that I am continuing my tapering off schedule of Prednisone. As of today, I am at 5 mg per day (remember I was at 60 mg per day). I will continue this dosage if my numbers continue to stay up. I am still having my weekly blood test to make sure that I am not killing off my red blood cells. As of this week my hemoglobin is at 14.4, which means that it is increasing even with me decreasing my dosage of Prednisone. Another effect of Prednisone is reducing the White Count. I am now at 86,000, which is lower than I have been since December of 2005. It will be interesting to see how my White Count behaves when I go completely off of the Prednisone.

I am still feeling pretty good, and I even played golf 3 times this week, which is the most that I have played since September. I still have a slight cough and some mild congestion, but nothing that is too serious.

I will have my weekly blood test next Tuesday and then my next appointment with Dr. Kipps is on February 26th. At that time we will probably discuss what the options and next steps might be. He will either keep me on the 5 mg dose of Prednisone, or taper me off of that. He may also discuss a treatment of Rituxan to reduce the white count even further.

All for now,
Terry