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

Exciting Happenings

Sarah's Reaction

Well, in the span of 5 days the Evans Family had a lot of excitement. 

Two weeks ago Kevin, Sarah's boyfriend (and also high school sweetheart), came to us and asked us for Sarah's hand in marriage.  We gladly gave him our approval.  He wound up proposing in Montana where they had gone for a job interview for Kevin, and a mini vacation.  They were sightseeing in a ghost town at an old church and Kevin got down on one knee, proposed, and was taking pictures the whole time.  Multitasking.  So now our youngest daughter is officially engaged.  We know Kevin's family and we are so happy to have them all now a part of our family.

Last week, Donna and I were also in Sunnyvale at the headquarters of Pharmacyclics, the company that makes Imbruvica, the drug that I am now on.  About a month ago I had received an email asking me if I would be interested in participating in a Patient / Caregiver Advisory CLL Forum.  At the time I knew nothing about who was putting it on, or what it was really about.  I first had a screening interview that asked me about my diagnosis, my history, and my treatments.  I must have done a good job in telling my story because at the end of the interview they not only asked me to come, but Donna as well. After two weeks they sent me the itinerary and Pharmacyclics was identified as the company that was putting on this Forum.

On Thursday we flew to San Jose and that evening we went to a Reception / Dinner where all the participants, the consulting firm coordinating the Forum, and members of the Pharmacyclics team gathered.  I was able to speak directly to many of the Pharmacyclics team including a doctor that I had seen many years ago at UCSD, who now works for Pharmacyclics.  I kidded her that she probably knew me pretty well since she had performed a Bone Marrow Biopsy on me.  The staff that we met told us that this was the place they knew they WANTED to work for.  We were able to ask questions about what the future held for their drug.  Because of a non disclosure form we had to sign, I can't get into specifics, but let's just say I am VERY excited about the future.  The reception was opened by Bob Duggan, the CEO of Pharmacyclics.  His opening remarks were very powerful, and you could immediately tell that this is his passion and his life.  We could tell that his passion has spread throughout the organization

Bob Duggan, CEO of Pharmacyclics
with Donna and me

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The next day we were taken to the Pharmacyclics headquarters.  There were 9 patients and 2 caregivers at the session.  Bob Duggan again came down and spoke to us, once again with a passion and fire you rarely see.  He spoke for about 20 minutes, which for a CEO, must be a very valuable piece of his time.   Then all the participants spoke about their journeys, how long they have been living with CLL, and their treatments.  This was a VERY informed group, most of the patients have had CLL for over 5 years, most have been treated many times.  Once again, I can't get into the details, but it was clear they wanted our opinions on issues and patient advocacy.

At our lunch break, the Chief of Oncology Operations asked the group if any of us would want to go over to their other building and meet some of the staff that is working on Imbruvica.  She told us that it would be very rewarding for the staff to actually see real people that are taking Imbruvica and what a difference it has made in our lives.  These staff members never interact with patients so she thought it would be a great experience for both of us.  So 6 patients and Donna went over to the building and into a giant conference room.  There must have 50 Pharmacyclics staff people in the room.  Each of us told our stories, how we had failed other treatments, how close to death we all have been.  After about 3 patients spoke people actually left the room in tears.  I was the last one to speak and by then I think more than half of the staff were crying.  It was a very powerful and moving experience for both the Pharmacyclics staff and the patients.

At the end of the day, Bob Duggan once again came down, thanked us, and took a picture with all of us.  We then were able to talk to him individually and he seemed delighted to be able to do this.  I know I haven't ever personally met a billionaire, but he is so down to earth and passionate, it was amazing.

We feel blessed that we were able to participate in this Forum and we hope that we contributed something positive, not only to Pharmacyclics, but to future patients journeys.

The day after we got back from up north (Saturday) we went out to dinner with Kristen and Donna's parents because Jeff was out of town.  At dinner we of course joked about Jeff being gone hoping the baby would stay quiet for another 2 days.  Being 5 weeks until her due date we thought the chance of anything happening was slim.  WE WERE WRONG.  At 3 a.m. on Sunday we got a call from Kristen saying her water had broke.  We quickly drove over there and took her right to the hospital.  She had started labor.  Jeff quickly bought another ticket to get the earliest flight into LAX and arrived at 9 a.m.  I went and picked him up and brought him to the hospital.  Kristen had reached a point before he got there where she was not progressing, it seemed she was waiting for him, as soon as he got there she started progressing.   4 hours later baby   LOIS GENEVIEVE came into this world.  Kristen was a real trooper thru the whole delivery and she did a GREAT job.  The interesting thing was that Kristen's doctor was not on call, so the other doctor in the group was on call.  This doctor had been Donna's GYN for over 10 years.  Since Donna was in the room and they were a little short staffed in labor and delivery, Dr. Kelvie put Donna to work helping with the delivery.  Talk about good timing. 

Lois Genevieve

Even though she was 5 weeks early she was still 6 lbs 2 oz, and over 20" long.  But being premature, she does have some issues that caused them to take her to the Neonatal ICU.  Being early means the lungs aren't completely developed so they helped her breathing for less than a day.  She was also jaundiced because of the trauma of the birth, which is very common.  So unfortunately Jeff & Kristen went home without Baby Lois, but she should be home any day now.  We are so proud to once again be grandparents.  We are especially pleased with the name.  They had not told anyone the name until she was born.  Lois was my mother's name, and is also my step mother's name as well as my aunt's name.  Genevieve was Kristen's grandmother's name.  It was so great that they wanted to honor their families in this way.

 

What a week.

I actually have NO news to report and am still doing fine.

Terry

Happy 4th of July

On Tuesday I went for my 9 month visit being on Imbruvica.  My blood numbers continue moving in the right direction and I am looking at continued success in the future.  My WBC (white blood count) is now down to 19K (normal is between 5-10K).  My WBC was 60K when I started and I am still trending downward even though it is at a slow pace.  After I had my blood test and physical exam I once again got a 90 day supply, which is the most they will give me at any one time.  I still have to pick up the drugs from the pharmacy at Moores Cancer Center.  This time I remembered to pick them up.  I continue to get them as a part of the Trial, so there is no cost to me.  I am not sure how long this may continue, but I get the sense it will be for a while longer.

I think there has been some confusion on some people's part about my routine.  I go to UCSD Moores Cancer Center (not Scripps, which is right next door).  Although I am taking a drug daily (Imbruvica) for my CLL, I still go to Moores monthly to get an IV infusion of immunoglobblulins.  This infusion is given to me because I have a compromised immune system and because I have had AIHA (severe anemia) in the past.  So it is given to me not to treat the CLL, but the issues that come up because of the CLL create a higher risk of infection and recurrent AIHA.  

My physical exam was unremarkable, which continues to be the case since the second month I was on the drug.  Keep in mind that this drug does not work for everyone.  It does have about a 70-80% success rate, which is remarkable, but there are people out there that have not tolerated it, or have developed a resistance to it over time.  But right now, for me, it is working well.

It looks like Donna and I will have another opportunity to share my journey with people.  We are schedule to go to San Francisco in 2 weeks to be a part of a focus group on people living with chronic diseases.  We don't know a lot of the specifics yet, but it should be exciting.

Since my last post I have lost two friends to the ravages of their diseases.  One was a CLL friend who had reached the end of her treatment options and opted for a bone marrow transplant.  Her sister was a perfect match, and several months after the transplant they could find no traces of CLL.  However, her body never completely accepted the graft (a condition called Graft vs Host Disease), and unfortunately she passed away as a result of that.   The second person was a dear friend who had been battling prostate cancer for over 18 years.  When he was originally diagnosed his PSA was over 500 and he was only give a short time to live.  He was on the cutting edge of treatments and battled courageously for a long time.  RIP Duane.

Once again I will make the comment that life is a gift.  You can never be certain of where this path will take you.  You can't afford to let the small things overtake your life.  You, or they, may not be there tomorrow. 

Over 200 years ago a group of tradesmen, farmers, and merchants decided that they wanted to rule themselves and form their own country.  Because of the efforts they made, America is the greatest country on earth.  Don't let this day go by without remembering how fortunate we are.

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

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.