More side effects from trial

I'm still on the GS-1101 (CAL-101) trial, but I've been having some problems.  I've developed cataracts in both of my eyes.  This can be related to steroid use.  I've been on budesonide for the severe diarrhea I've suffered in the past.  It seemed like the trade off from uncontrolled diarrhea is the development of the cataracts and a resultant need for surgery.  

Cataract surgery is the most common surgery in the US (who knew) so it's a major problem.  But there are definite side effects to the surgery, the most serious one is retinal detachment and the risk of blindness.  I'm at a higher risk for this since I have a strong correction necessary to see clearly.  The cut-off seems to be somewhere above 7.0 diopters ( I hope I have that right).  

So I took myself off the budesonide.  It's taken a while, but the diarrhea has returned with a vengeance.  So now I'm back on the budesonide.  It's a terrible trade off, but what else can I do.

The joys of having CLL

Latest on GS-1101 (CAL-101)

I drove down to Stanford for an appointment with Dr. Coutre yesterday.  I think we were both surprised that my blood numbers looked better than they have been of late.  My WBC is back in the normal range.

I also was subjected to an hour-and-a-half MRI, which showed slight regression of abdominal lymph nodes, which was also a surprise, since I've not noticed any diminution in the size of those nodes.

So we both decided to stay on GS-1101 (CAL-101) for the time being.  This means I'll be on the drug for another two months.  

I do have a puzzling new symptom, though.  I've had some vision changes, which has necessitated new glasses.  I'm requiring a new prescription, which is very strange.  Dr. Coutre has not heard of such a side effect, though he hadn't heard of the diarrhea problem that plagued me for months a year ago.  So I will have to see what will be going on with my eyes.  I did have a consult with the ophthalmologist who could find nothing wrong that would cause these vision changes.  I certainly don't want to ruin my vision, but I am otherwise doing well on GS-1101, so I guess I will just plug along.

Happy Thanksgiving, all!

Failing CAL-101/GS-1101?

I saw Dr. Coutre at Stanford Clinic yesterday, and was dismayed to find out my lymphocyte count has gone up to 20,000.  This is the highest it's been since I started on CAL-101, and may very well be a sign that I am failing the drug.  I think everyone knew this isn't a cure, but I also think that we all hoped I would get a number of years of remission from the drug.  A year and a half doesn't seem that long, in retrospect.

We will follow up with a WBC next month as part of my IVIg.  If there is continued increase in the lymphocyte count, then it is likely I will be pulled from the trial.  That would be a big disappointment, of course, since there is not much out there I would qualify for.  The Bruton's tyrosine kinase inhibitor unfortunately is completely filled, so there would be no room for me.  The other option would be conventional chemotherapy which does not work anymore on me.

So I may be going from a stable situation in which I feel well and am able to live a pretty much normal life to one where CLL is once again front and center.  I know I have done better than many (but not all) and I shouldn't complain, but this indeed is a real blow.

I'll try to stay on the positive side, at least for another month.

I suppose I will go back on the prayer list from my church.  Prayers do help, in my opinion.  I think they were a God-send when I was so sick in the hospital.

Steady as she goes

Nothing much to report.  I go back to see Dr. Kipps in San Diego near the end of the year; I see Dr. Coutre next month.  I will have scans the end of the year, as well. 

My abdominal nodes remain one of the biggest problems I have.  After going down nicely when I started on CAL-101 (GS-1101), they seem to have increased in size since my hospital ordeal at the beginning of the year.  I admit that some of the girth I suffer from is from 'good eats' but most of it is enlarged nodes.

The rest of my nodes are pretty much non-existent.  No matter how hard Dr. Kipps pushes, he can't seem to find much of anything.  I do have some nodes that are palpable, but not many and not very large.  So I am on a steady course as we speak.

Now if I can just get through the political rhetoric for the next few months, I'll be happy.

Not much to report

I saw Dr. Kipps in late July, and he said he was pleased with my current status.  I do have lots of nodes, but they all seem to have shrunk, as far as he could tell based upon a manual manipulation of the nodal areas.  My biggest problem still is the abdominal area, and he couldn't tell much in that region without a scan.  Dr. Coutre wants me to have my next scan at the end of the year.  So we have to get together on a date for that one.  In the meantime, I'll see Dr. Kipps in January, 2013.

So, I supppose no news is good news.

I did ask Dr. Kipps about the ROR vaccine that would be created to perhaps 'cure' CLL.  He said that they are looking for a 2014 start date for a trial, since they have to jump through a lot of hoops with the FDA and other organizations.  You know, 'first do no harm'.  So that is good news, though I wish they would start sooner than two years from now.  But I guess we must be patient...

Cruise Control

I went down to Stanford last week for my latest appointment with Dr. Coutre.  The lab numbers were not in yet (even though I got there over an hour early!), so I don't know how the lab is going to assess my progress or lack thereof.  (Is it progress if the numbers progress to a worse level, or is it progress if my counts are stable and/or improved.  I vote for the latter.)

From a purely subjective standpoint, I feel fine and am able to do pretty much what I want physically.  I think it has taken me about six months to pretty much fully recover from my hospital stays.  That's a long time, and thinking back, I was pretty much wiped out in January and February.  I couldn't drive, I couldn't make it to the end of the street even with a cane.  Now I am driving to Stanford and elsewhere, I did some roof repairs that necessitated me carrying shingles up the ladder, and ripping off damaged shingles, and even using new plywood to replaced some damaged sections.  (The whole problem started unnoticed some time ago when I lost a single shingle to a wind storm, and didn't notice it.)

My attitude to the lack of numbers from Stanford is that since I've not heard from Dr. Coutre, all's pretty much well.  At least I like to think so.  I see him in a month.  I'll repeat my scans in December or January.

In addition, I'll see Dr. Kipps next month in San Diego.  I'll get to fly the no-frills Southwest, which has the only non-stop from Sacramento to San Diego.  I hope things go well there.  Dr. Kipps is more of a worrier than Dr. Coutre, so I expect a somber analysis from Kipps.  But I will get to pump him on new treatments.  Of course the one trial I'm interested in apart from CAL-101/GS-1101 is a trial educating the T-lymphocytes to attack and destroy CLL cells.  A cure would be very, very nice.  To get back to the business of living without having to worry about my immune system.

Perhaps an impossible dream for me, but one can only hope, can't one?

Another Update

Really noting to report.  My diarrhea has abated to the point where it is not a problem.  I have occasional bouts but not debilitating or even much of a nuisance.  That is excellent.

My latest scans showed most of the nodes are staying down, but a couple in my chest are a problem, and growing.  We will have to follow this, of course, which means more MRIs I suppose.  The chest, pelvis and abdomen (done all at once) takes 1 1/2 to 2 hours to complete.  That is a long time to stay in the MRI machine, but better than the CT scan with all of the radiation.

So, not much news is good news.