Time for an Update

I realized my last post was in November, 2019. Boy, has the world changed since then. With everything that is going on in the world, my post seems very insignificant in the scheme of things, but there are a couple of important things I would like to share. Most of you would suspect that no news is good news, and you would be correct. In my last post, I reported that they could not find any disease in the multiple tests that they had run over those last 17 months. Last week, they ran another test (Flow Cytometry), which was at the 24 month mark on the clinical trial, and once again they could not find any evidence of disease. End of Short Report.

In my latest test they once again tested a large number of cells. According to the pathology report over 700,000. The exact wording on the report was '<1% in 750,946 events'. So what they are saying is that they could not find any leukemia cells in the sample they took. I guess the <1% means that 'we couldn't say there were NONE', but this is a pretty good indication that even if there are some, it is at such a low level they can't even measure it.

So what this means is unless there are some surprises that happen between now and my doctor's appointment on July 2nd, I will stop one of the two drugs (Venetoclax) that I have been on for 25 months. I will continue to take the Ibrutinib and we will wait to see what happens. Hopefully, I will get a long remission this time before I have to move on to the 'next new thing'.

June the 10th, was actually the 20 year anniversary of my CLL diagnosis. When I look back at this journey, it is hard to believe not only all the changes that have happened in the treatment landscape for CLL , but the changes that have happened with our family during that time. You may not remember, but at my diagnosis, I was given a 5-10 year survival. But more interesting was that NONE of the drugs I am taking now were even in Clinical Trials when I was diagnosed. After a disastrous start to my treatment in the beginning, I was fortunate to have switched to one of the top medical teams in the world for CLL. I can honestly say that without the team at UCSD, I would not be alive today. I have also been very fortunate to have participated in the trials for both of the drugs that I am on now (Ibrutinib and Venetoclax) that happen to be 2 of the most significant drug discoveries in the non-chemo treatment of CLL.

When I was diagnosed, none of our children were married. I wondered if I would ever see that happen, and if I would ever get to see any grandchildren. Last June grandchild #10 was born to our Berkeley son and daughter-in-law, and in February of this year, #11 was born to our Arizona daughter and her husband. How amazing is that?

I continue to participate in the CLL Society support groups, and we have successfully converted all of our 33 in-person support groups to VIRTUAL groups. It is very different than meeting in person, but the good thing is that we can still meet and support each other, even if it is over a Zoom meeting. Personally we are trying to maintain our social distancing, having Zoom parties with family and friends, wearing masks in public, and staying clear of sick people.

Stay safe and be well.

A Milestone!!

I just realized that it has been 6 months since I last posted an update, and I guess I need to share some greatly anticipated news.  If you have been following my journey (blog) for a while you might remember that I entered my 3rd clinical trial in May of 2018.  Even though the initial results were very promising, there needed to be one more test to determine how well I was actually doing.  So in mid October, they did a bone marrow biopsy to determine how deep the remission actually was.  I have since gotten the results of this test, and THEY CAN FIND NO EVIDENCE OF DISEASE.  End of short report (you know who you are).

This confirmed two previous tests that they had run but with much greater accuracy.  The test is looking for one cell in 100,000, but if I read the report correctly, they actually tested over 434,000 cells.  Don't ask me how they do this, it is way beyond my pay grade.  This does not mean I am CURED, but what it means is that in the area they evaluated they could find no disease.  If they can't find any disease in the bone marrow (called  Minimal Residual Disease Undetected (MRD-) it has been shown that you will probably have a longer remission.  Cancer is a pretty sneaky disease.  It can hide out in places they can't test, it can mutate, so it goes around the pathways that are being blocked by the medicine, or it can decide to change into something else.  I am not naive enough to think that I'm over all of this, but I will say that this is the FIRST time in over 19 years that they are unable to find any disease.  I still continue to look at possible next steps, if and when I relapse once again.

The question now is what do we do?  Remember, I am on two pretty powerful medicines, so we could stop one of them (which one, I am not sure), we could stop both of them, or we could do nothing and keep taking both of them.  I have an appointment in mid November to try to figure some of this out, but I doubt we will come up with an answer at that time.  All of these scenarios  have a lot of unknowns associated with them.  That is why it is a Clinical Trial.  To be honest, they just don't know yet.

All in all, I have been feeling pretty well.  A few nagging side effects, but I deal with them, plus, they may or may not be caused by the medicines.  Feeling well has allowed us to do some traveling.  We have visited our kids who live out of the area, and had a couple of big trips, one to Israel, and one to Kauai.   We are looking forward to Christmas, when all 10 of our grandchildren and their parents will be around to celebrate the holidays.  I am still doing work for the non-profit, the CLL Society, and still lead the Orange County support group.  I have also been asked to do some speaking for another group, and should start that after the first of the year.  I hope sharing my story in some small way, helps others who are dealing with CLL.

I am truly a Blessed man.

Terry

You Can't Find WHAT?

If you have been following my blog you know that I have been on my 3rd Clinical Trial (and 6th treatment) since May of 2018.   I last reported in November that everything seemed to be going well but a couple of things have happened in the last month that have caused me to post now.  In March I had my 10 month CT scan and it showed a remarkable decrease in my lymph nodes.  Because of this, and because my blood numbers had all been in normal range for over 9 months  I asked my doctor if we could run a Flow Cytometry test which tries to find any abnormal (CLL) cells in 100,000 cells.  So on Wednesday they drew blood and ran the test.  I got the results back from my Clinical Trial Coordinator on Friday, and she told me they could not find ANY CLL cells in my blood.  End of Short Report.

These results have GREAT significance because it is the first time in almost 19 years that this has happened to me.  I have been close a couple of times, but I have never gotten to this level.   We will run another test in a month to make sure this wasn't a fluke, but all indications are that it will be the same.  Another reason why this is significant is because it also gives hope to other patients like me.  I am considered HEAVILY Pre-treated, and I have most of the BAD markers.  All of this means that I am a really tough patient to treat.  People in my situation really are running out of options, and if this continues to work, it will give hope and options to other patients like me.  For me to get to the level of having NO disease is nothing short of amazing and some might say a miracle. 

Now this does not mean I am cured, it just means that right now they cannot find any disease.  It is considered the deepest remission that you can have.  The hope is that this will last a long time.

I continue working with the  CLL Society which is dedicated to helping CLL patients in educating and supporting them in their journeys.   We have now started 31 support groups in the US and one in Canada, and I am proud to say that I have been involved in starting all of these groups.  My personal belief is that you should be your own advocate and the way that you do that is by having the best medical team you can get, by educating yourself as much as you can, and by joining with others that have CLL.    A very close friend of ours was recently diagnosed with CLL and I hope that I was able to provide some useful information to her.  I didn't have that when I was first diagnosed.  I knew NO ONE with CLL and felt like I had to totally depend on my doctor's information.  That is why groups like the CLL Society are so important to create Educated patients that are able to make informed decisions with their medical team and to join a community where people can learn from other patient's experiences.

As Red Skelton used to say (if you don't know who Red Skelton was, look him up)

Good Night and God Bless

The Results are IN!

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

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

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

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

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

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

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

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

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

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

Terry

And Now for Something Entirely Different!

Monty Python fans will immediately remember the title of this post, which was a line that they used in their shows when switching from one skit to another.   It appears that I am relapsing on the drug that I am on, and I am going to have to start another treatment protocol.  After an exhausting search I think I have found a treatment that fits the bill.  It is another Clinical Trial at UCSD and will start by the end of the month.  End of short report.  I will warn you ahead of time, the rest is pretty long.

It has been 54 months since I started the drug Imbruvica (Ibrutinib) as a part of the clinical trial that the FDA used to approve the drug for use in patients with Chronic Lymphocytic Leukemia (CLL).  I was happy to be a part of that trial, and even happier that I responded to the drug.  It now appears that the times, they are a changing.   Even though I feel fine, I had suspected something might be going on back in December and since then, my blood tests have shown a slight rise every month.  In January at my doctor's appointment, I asked him if he thought this was a trend upwards, and he said yes.  I also asked him if it was time to run what they call a deep gene sequencing test to see if I had developed any mutations that happens to some patients who are on Ibrutinib over time.  He again replied yes.  So he ran the tests in March and it was confirmed that I have a mutation in the C481S pathway.  (It is unfortunate that I understand this) This means that eventually this drug will stop working for me.  So it is not a question of IF, but WHEN. 

So the obvious question was what do we do now?  I actually feel fine right now but we want to head it off at the pass and start another treatment sooner than later.  My options are limited because of a couple of things.  I am what they call heavily pre-treated, which means I have had a lot of treatments.  I am also a Complex Karyotype, which means that I have some genetic abnormalities that don't respond to certain treatments.  So this has led me on the month and a half long search to find another protocol.  Since I will probably need a treatment that is fairly new, I started looking at Clinical Trials and found that there were a few options there. One of my options was a University of California at Irvine (UCI) trial and was for a drug similar to the one I am taking but is supposed to target the genetic mutation that I have developed.  The problem with this one, after consulting with their staff, is that it is REALLY new, and not many patients have been on the drug so far and they are still trying to figure out the dosage.  In fact they don't have a patient yet at UCI.  At this point in my journey I don't think I want to take the risk of this drug not working at all and then having the disease progress very rapidly.  There just isn't a lot of data yet on how patients are doing on this new drug.

So my next choices were at University of California at San Diego (UCSD) and they presented me with 3 options, all of which had pluses and minuses.  One was a trial and the other two were using combinations of already approved drugs.  After weighing all the options, I decided to go with the Clinical Trial.  On Friday, I agreed in principal to be a part of this trial.  They are now scheduling me for pre-screening, which should happen in the next week.  I would assume if all that goes as planned I would start the trial within the month.    Another plus for this trial is that because it was initiated at a University of California Medical Center, they may be able to transfer it to UCI, so I would go there for my subsequent testing and follow-up care.  Even though I was reluctant to go on the first trial at UCI because of the small number of patients, it turns out I may be Patient #1 on this trial.  It doesn't concern me as much because both of the drugs I will be taking have been tested together in the past and have been shown to be very effective.  The reason that this is a trial using two approved drugs but in one of them they are changing the normal dosage.  

The major downside to this trial is that I will have to pay for one of the two drugs.  Makes no sense, right?  It's a trial, right?  However, if I were to go out and get both of these drugs prescribed as a normal prescription, I would have to pay for BOTH of the drugs.  The problem here is something called CANCER ORAL DRUG PARITY.  Even though I have Medicare Part D, which is supposed to pay for my prescription drugs, this is a Tier 5 drug, which is the highest level they have for the newer costly drugs.  If the drug were given as an infused drug, it would be paid for by Medicare.  But because it is a PILL, it is covered by Medicare Part D, which has different rules.  It gets even crazier.  If I weren't on Medicare and just had regular insurance, the drug companies have programs to offset your co-pay and it would probably only cost me $50 per month.  But if you are on Medicare, it is ILLEGAL for drug companies to subsidize patient's drugs.  This is why one of the drugs will cost me about $12,000 out of pocket per year.  This absurdity is why 48 states have already passed laws making the coverage of Intravenous (IV) cancer drugs and pill-form cancer drugs the same.  Unfortunately that has NO weight because Medicare is a Federal Program.  There is a bill in the House of Representatives right now called H.R. 1409 Cancer Drug Parity Act , which would change this, and even though it has bi-partisan support, the pharmaceutical lobby is very strong and there are questions as to whether it will pass or not.   I am sure that most of you have been impacted by cancer, either thru personal experience, or a friend  or loved one.  It is mandatory everyone supports this bill.  I encourage you to call or send an email to your local representative in support of this legislation.

Yes, I'm disappointed that I am relapsing, but I am ready for the next round, and hopefully it will give me a couple of years and set me up for the next newest thing that is coming along.  The quest for the cure is maturing and the most promising of the treatments is something called CAR-T therapy.  It is very early in the development this treatment, and not very easy to explain in a paragraph.  Basically it is a treatment where they remove your T Cells, and infect them with a modified HIV virus that targets the leukemia.  They are grown for 2 weeks outside the body and re-infused.  It is not for the faint of heart.  Several patients have died, several have not responded at all, but several have been CURED.  My friend and fellow CLL warrior Dr. Brian Koffman has been in Seattle since March getting this treatment at the Fred Hutchinson Cancer Center.  As of Friday, he has been declared completely cured of leukemia.  He was extremely sick and hospitalized multiple times after the infusion, but he is on the road to complete recovery and is cancer free. Right now there aren't many places in the U.S. that do this type of treatment, but that landscape is changing, and as they refine the treatment the risks will decrease.  It is certainly something I would consider in the future.  Here is a link to Brian's CAR-T journey, with an explanation of what it exactly is.  Brian's CAR-T Blog  I would suggest you go to the beginning if you want an explanation of what it is about.

On a different (some people have said insane) note, we were fortunate to be able to go to Disneyland a couple of weeks ago celebrating our granddaughter Naomi's 5th birthday.  All NINE grandchildren went, 8 adults and 5 strollers.  Even though it was the hottest day of the year (94), we all surprisingly had a great time. We are truly blessed. 

Thanks for all of your prayers and words of encouragement.

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.

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.

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