It has begun

On Tuesday I started the new Clinical Trial.  As you may remember the trial consists of two different arms with one being a pill (the one I thought I wanted) and one being an infusion.  By random draw I got the infusion.  The first infusion is now over, and I only have 11 more to go.  End of short report.

Before I could begin the trial I had to have a number of tests, sign paperwork, and be 'approved'.  All of this was done in the last two weeks.  Last Friday I got the word that I was accepted and which arm of the trial I would be in.

Tuesday turned out to be a LONG day.  Over 15 hours door to door.  I first had lab work, then a doctor’s appointment, more lab work, the pre-meds, then the infusion.  The total infusion time is about 7 hours.  At first I was a little disappointed that I got the infusion instead of the pill, but after talking to Dr. Kipps, I think that I will have a good response to this drug.  It is called Ofatumumab, or Azerra.  It is a monoclonal antibody like Rituxan is, but it is a second generation of the drug.  It is approved for use in CLL so it has been around for a while and even though there are side effects associated with it, they can be managed.  Tuesday I got what they call a TEST dose.  It was only about 1/6 of what I will get in subsequent doses.  They want to make sure that you don’t have a reaction to the drug and that is why they give such a small dose and give it over a long period of time.  My dose next Tuesday will be 6 times as much and given over a shorter period of time. 

I will get a weekly dose of this for the next 7 weeks and then I will get a monthly dose for the following 4 months.  So the total time will be 6 months.  We are not quite sure what happens after that.  There is some talk that the pill drug might be made available to those patients that need it.  Obviously if all my counts, scans and physical exams show I am back to normal there would be no need for the drug.  But if at some time in the future I would relapse, I may be first in line to get the pill drug, called Ibrutinib.  The main goal here is to buy me some more time and not burn any bridges for future treatments.  I think the Ofatumumab will accomplish this.

I have had very little side effects from the test dose and the nurses all expected that because of my past experiences with Rituxan I wouldn’t have very many with the Ofatumumab either.  The measure of how well I am doing can’t be really verified until another CT scan and a bone marrow biopsy.  But I think they will know in a few weeks if I am responding.

Thanks for all the well wishes and prayers, they are uplifting. 

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

It was fun while it lasted!

A week ago I visited Dr. Kipps for my 3 month follow-up.  Since I go down every month for my IVIG Infusion, he had 3 months worth of data to look at.  Unfortunately it looks like I am coming out of remission.  My blood numbers are definitely trending upwards, and he is starting to see my lymph nodes increase in size.  So it looks like I will have to begin some sort of treatment before the end of the year.  End of short report.

This is not totally unexpected.  Because I had all the blood tests, I could see where this was going.  I could also feel the nodes increasing in size.  I always knew it was going to be a matter of not if, but WHEN.  I am a little disappointed that the last Clinical Trial that I was on did not give me a longer remission.  From the time I stopped the Clinical Trial, I got about 20 months of remission.
He wants to see me as soon as we get back from Hawaii, and begin the process of bone marrow biopsies, genetic testing, etc.  After he gets the results of that back, we will sort out all of the trials that make sense and don’t make sense.  Why am I looking at trials again?  Isn’t there anything else that is a non-trial treatment?  The answer is maybe, but probably not.  I have already had 2 different treatments (one twice) and the results have been the same, no long term remission.  I have poor genetic markers, which limits the effectiveness of some of the ‘approved’ treatments.  I have had autoimmune issues with my AIHA.  In 50% of the cases, the AIHA comes back in patients, and is almost guaranteed to return if you use the wrong treatment.  So this limits my choices, and a trial is maybe my best shot.

I feel that the only way we are going to make real headway on curing or stabilizing this disease is to have people enter into trials.  Remember, you can’t get trials just anywhere.  They are usually provided only at teaching and research hospitals, like UCSD, Ohio State, MD Anderson, Mayo, Sloan Kettering and Fred Hutchison.  So you can’t go to your local hematologist and say ‘give me trial 123’.  You can’t even get the same trial at two different hospitals.  They are tightly controlled by the drug companies and the FDA.  Now there is a match made in heaven.  The trial I was on before had less than 50 people in the WORLD enrolled.  One of the most promising ones (that I am looking at) has only 400 people that have taken this drug, and it has been out of the lab for less than 3 years. There are a lot of accusations about the teaching hospitals using people as Lab Rats.  I don’t feel that way.  This is MY choice.  I can do it or not.

Dr. Kipps gave me 4 informational packets on trials that MIGHT be appropriate for me.  We will then have to wait until after the tests to see where I really am.  THEN, I have to be ACCEPTED by the drug company.  This sounds like I am applying for college, or a job.  I won’t get into the details of these trials right now because none of them might pan out and we might have to go to plan B, whatever that is.

I am not as anxious as I was before the last trial.  In general, I know what to expect (although every treatment has its own personality).  I know there will be a lot of paperwork, a lot of tests and drugs. Once again I am trusting Dr. Kipps and God to lead me in the correct direction.  

Life goes on.  Our youngest son Matt and his wife Randi have announced they are expecting.  My oldest son Jeff has announced he is engaged to his long time girl friend Kristen.  Wyatt continues to be a great baby and Aimee and Bryan are great parents.  Sarah is now a licensed CNA and is continuing her education in Acute Care.  My golf index is at its lowest since I began playing (that’s a good thing for you non-golfers).  So for now, I’m not going to worry about any of this, and Donna and I are going to relax in Hawaii.  ALOHA.

Terry

About Time to Post

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

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

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

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

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

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

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

Terry

A New Report for a New Year

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

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

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

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

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

10/15/11 - I'm BAAAAAACK!

A few of you may have wondered what is happening to me. I have not written a blog update in 3 months. My thoughts were if nothing is going on, then there is no need to report anything. I may have to revise that thinking. I was starting to get emails asking if I was all right. But as a general rule no news is good news, and that is the case with me. I just had my 3 month checkup with Dr. Kipps on Friday and he once again gave me a clean bill of health. End of Short Report.

Even though I get blood tests every month before my IVIG infusion, it is always in the back of my mind that there may be something else going on. All my blood tests have been good for the last 3 months and my blood test from yesterday was actually better than 2 weeks ago. My physical exam proved to be unexciting, with no lymph nodes or spleen felt by the good doctor. He is encouraged by my continued excellent response and said he didn’t need to see me for 3 ½ months. I asked him about the others that were on the same trial that I was on and he said they are all doing pretty much the same as I am. Dr. Kipps is more optimistic than I have ever seen him and he is really encouraged by all the new therapies that are being developed. If and when I need treatment again, there will be something even better out there for me. There is already a new version of ABT-263 (the one that I took) in Clinical Trials. There are also three new drugs that are showing great promise.

So since there is nothing going on with my CLL I guess I will have to discuss other issues. As with most people that have lived in Southern California for some time, I have wound up with some pre cancerous skin issues called AK (Actinic keratosis) on my face. I started a skin treatment called Zyclara, which is a cream you rub on the lesions and it generates a reaction in your body’s immune system killing the AK cells. As with most men, I have been reluctant to visit the dermatologist on a regular basis, but because of my increased risk of skin cancer I have decided to be more diligent about this and try to be proactive in eliminating some of these skin issues. I encourage you all to do the same.
This last month has been an exciting one for the Evans Family. In September our youngest son Matt got married to his long time girlfriend Randi. The wedding took place in Seattle (where Randi is from) and was attended by most all of the family members and some friends from Southern California even made the trip up north. It was a great event and Matt and Randi honeymooned in Maui after the wedding.

Because our life has been free of treatments for a while, we have finally started to do some traveling again. After the wedding we continued up into Canada with our friends John & Toni. We had a great time traveling around British Columbia and seeing all the amazing sites. Who knew Canada had a great wine region called the Okanagan Valley? We are also planning trips to Seattle, a couple of weeks in Palm Desert, a possible trip to Sedona and then a trip to Hawaii early next year. We have to be careful with our trip planning; working all the trips around the arrival of our first grandchild in late November, or early December.

Even though my situation seems to be on hold for the time being, life’s challenges continue for others. Last week we lost a friend from church who had been battling Multiple Myeloma for 1 ½ years. Our prayers go out to her family. We also have another friend who is in the midst of chemotherapy for treatment of Melanoma and is dealing with treatments, tests, doctor visits and insurance issues. Believe me when I say to you (Carol & Larry) that I’ve been there and there is light at the end of the tunnel.

Speaking of insurance. After many years with the same insurance through my work, they are now making a change. I have been very fortunate that I have had excellent coverage over the past 4 years during all of my treatment. Now I don’t know what is going to happen. All of my approvals, doctors, prescriptions will all have to be redone; I don’t look forward to that. PLUS, much to my dismay, I will go on Medicare this year. I have heard conflicting reports on the quality of Medicare coverage; plus making decisions on the supplemental plans is going to be an additional challenge.

I will be more prompt in the future with my updates, even if I don’t earth shattering medical news.

Terry

7/11/2011 - More Time Off

I know that I haven’t posted in while, but my medical life has been quite uneventful for the last 3 months.  Yesterday I had my 6 month post treatment follow-up visit with Dr. Kipps.  The good news is that all my blood numbers remain stable and my physical exam was excellent.  Once again he said see you in three months.   End of short report.

Over the last several months several close friends have been going thru their own battles with cancer.  I pray that their outcomes are going to be as good as mine has been.  The mental stress of all of this can be overwhelming to both the patients and to the caregivers.  Keep up the good fight.

After not having a real vacation in over 3 years, we got to go to Hawaii in May where we were able to see our oldest daughter Aimee get married.  In September we will be going to Seattle to see our son Matt, get married.  It has been great to feel well enough to start planning and enjoying some of the things that retirement (and grown children) has to offer.

Terry