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.

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

Up Up and Away

I don’t know why this lyric by the Fifth Dimension (A 60’s group for all you youngsters) came to mind in writing this update, but it seems appropriate given what is now happening.  Tuesday I met with Dr. Kipps and I have tentatively been approved to start a new clinical trial on October 30^th.  I am feeling well with the exception of having shingles.  End of short report.
Well, our trip to Hawaii was very nice with the exception of getting shingles while I was there.  About 4 days into the trip I noticed a pain in my lower left shin, and then the next day it moved up to mid leg, then to my knee.  At that time I knew something was brewing, so I started my antivirals (which I always carry with me).  Two days later the rash broke out on my left lower back.  It is still there, and is bothersome, but yesterday I got a prescription for some medicine to block the nerve pain.  I don’t know what would have happened if I hadn’t started the antivirals that early, but Dr. Kipps said my outbreak would have probably been much worse.  A word of advice.  If you are able to get the SHINGLES VACCINE, get it.  You DO NOT want to get shingles.  If you have ever had chicken pox the herpes zoster virus is in your body.  When this is reactivated (no one knows why this happens) you get shingles.  It usually happens to adults over 50 and that is the age you should get the shingles vaccine.  30% of the adult population over 50 will get shingles, so the risk is there for just about everyone.  Some people can’t get the vaccine because it is a LIVE virus which is contraindicated for immune compromised patients, so check with your doctor before just going to prompt care and getting the shot.  By the way, I am NOT a doctor and cannot give medical advice, so this just my own explanation of what happened to me.

Now on to the fun stuff.  Yesterday we met with Dr. Kipps and he once again said I am coming out of remission.  My blood numbers are moving in the wrong direction, he can start to feel the spleen, and my lymph nodes are increasing in size.  So the question is, what do we do?  We could wait, but with my history, it doesn’t seem like a good idea.  There is no real benefit of waiting except I wouldn’t have to have my life revolve around weekly appointments.   The consensus between Dr. Kipps and me is that it is better to start the treatment now while I am feeling well and have no other issues.  I think I will respond better and have fewer side effects if we start now.

The Clinical Trial we selected is a two arm trial, which means you will get either drug A or drug B.  Drug A, which is called PCI-32765, Ibrutinib, or the new approved name of Resonate.  Drug B is called Ofatumumab or Azerra.  This is a humanized monoclonal antibody that works on the CD-20 marker of the cell.  It is also called the son of Rituxan which was the first CD-20 monoclonal antibody, but was mouse based.  I know some of you are asleep, but too bad.  Dr. Kipps thinks that I will have a positive response with either drug, and I am not burning any bridges for future treatments by taking either one of these drugs.  It is also a plus that neither of these drugs are true Chemotherapy, so the side effects (which there will still be some with either drug) are much less than with conventional chemo drugs.

The arm I really want is drug A, or Resonate.  This drug is a pill you take every day.  There are 3 outcomes possible.  You get worse, stay the same, or get better.  In the over 400 patients on this drug, only 3 have gotten worse, and the majority have gotten better.  This is REALLY good news for the CLL community.  We now may have a drug that you just take every day and it keeps you in remission.  It is the talk of the town and the company’s stock has gone from 7 to 65 in 9 months.  The company name is Pharmacyclics or PCYC for anyone that cares.  Johnson & Johnson thought so much of the company that they loaned them $800 million to continue their development of the drug.  Even though there are still side effects, they seem to be manageable, and as they say it beats the alternative.

So what happens if I get drug B?  I could just stop the trial, or I could hope I get a positive response from drug B.  Dr. Kipps thinks I will, so that is good news.  The first part of the trial is only 6 months, and I have been told that if I complete the 6 months that I would be first in line to get drug A sometime in the future.  So this makes you stay in the trial no matter which arm you are assigned.

There is a lot to be done before the 30^th.  They still have to go over my records to determine if I ‘qualify’.  I also have to have a boatload of tests to establish the baseline of BEFORE the treatment.  So next Wednesday I will have a bone marrow biopsy, my monthly infusion of IVIG, a CT scan, and EKG and an Echocardiogram.  All of this in one day.  I told them I would rather do it this way than have to make multiple trips to La Jolla.  So it is really my choice and I am glad they could accommodate me.

The good thing is that I am feeling well, and we just got back from 2 weeks in Hawaii.  We spent a week on the Big Island of Hawaii and a week on Maui.  The nice thing about Hawaii is that it always the same, pretty much paradise.  We are taking a couple of short trips before I begin treatment because that is going to tie me down for about 2 months.

Terry