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. 

An Update

I went to see Dr. Coutre at Stanford at mid-month.  No real changes.  Back on CAL-101 (GS-1101) after being off of it with terrible diarrhea problems.  Now back on for three weeks or so, with steroids to calm the intestines.  So far, so good.

I did the usual MRI, two hours for chest, abdomen, and pelvis.  One hour on different day for neck.  What an ordeal!  My back bothers me after about 30 minutes, so I'm starting to take some pain medication prior to being in the 'tube'.  I have to stay overnight in order to do the tests, so it gets expensive staying in a hotel in Redwood City, just north of the clinic at Stanford.  Parking is a problem in the parking garage, too, though this time I didn't have any trouble, since I got there very early.

I had company for part of the day.  My neck MRI was at 8:30, and my appointment with Coutre was at 3:30, so I had several hours.  I had some lunch in the car.  A scrub jay was out looking for some food, so I obliged him by tossing him some cookie bits.  He probably had a nest to feed, so I went back in the facility, and purchased a small bag of almonds.  He seemed very happy to have that as a food for his nest (?).  It was entertaining.

Still in holding pattern.  Some nodes went down.  Spleen normal sized now.  Some slight growth in chest area.  So I'm still on the drug and see Coutre in July. 

An island of stability.  That's what scientists call putative heavy elements (say, 114) that may last for minutes...or years.  That's sort of the feeling I'm having right now with my CLL. 

I did have blood work done on April 20 and they were excellent.  Other than a minor departure from the norm on my hemoglobin, my blood numbers are achingly boring.  Everything else, including WBC and platelets are well within normal range.  Platelets have been a problem for me for years...dropping as low at the 60s at several points.  And the WBC have been terribly low during my treatment with flavopiridol.

So what do I do now?  Do I gamble more on CAL-101?  Do I go down to Stanford and UC San Diego to see what else might be available that doesn't cause so much gastric mayhem? 

Don't know.  Will see.  Let the docs look me over. 

I will press hard for news and/or enrollment in the 'cure' that involves modified T cells.  I deserve to be free of this disease!  13 and one half years of CLL is long enough!!! 

What can we do to get closer to this putative cure?  About the only thing is to follow Dr. Keating's suggestion, and donate tons of money!!!  His group the CLL Global Research Foundation (cllglobal.org) has given quite a bit of money away in its existence. And Dr. Kipps' Blood Cancer Research Fund (bcrf.ucsd.edu) is doing the same.

Meanwhile, I am revelling in my 'boring' blood numbers.  Others in the CAL-101 trial without the diarrhea problem must be doing well as well, though I don't see too many posts on CAL-101 of late.

Night sweats

I'm beginning to get a bit sweaty at night, not a good sign. However, they are not drenching night sweats (which I have had years ago; they are terribly uncomfortable.

I view this as not a good sign, but since I'm not treating my CLL now, I see no solution to doing what I am doing. Still off CAL-101 because of the diarrhea. I am much better now, but the frequent and urgent diarrhea is in many ways worse than the disease.

Don't think this is a problem with many folks, but it is with me.

An update

I have not posted in many months; for that I apologize. It has been a terribly difficult period, and I just have not felt like posting, not to mention that I have only unfortunate news to report.

I have been in the hospital more than I have been out, though my last admission was in early February. I came close to packing it in in early January, when I was taken by ambulance (I remember nothing of this, but I have a hefty bill from Sac Fire Department) to the hospital with a raging fever.

As far as CAL-101 goes, I'm off the drug at present. I have had a flare up again of the diarrhea, to the point were I was in the bathroom 50 times in one day. One cannot live like that; literally, as my potassium dropped to dangerous levels.

The good news is that I seem to have some residual benefit from CAL-101. I've been off the drug for three weeks or so, and I am still doing OK. My abdominal nodes are back up, and that is unfortunate, but they appear to not be giving me lots of problems. I am also sweating some at night, but that doesn't wake me up, so I don't know if that qualifies as drenching night sweats (I don't think so). It's not a good sign, but I can live with it.

I will see Dr. Coutre at the end of the month to see where we go from here. Off the drug, my diarrhea has abated, but not totally. He believes that I've developed colitis, perhaps separate from the drug. All I know is that I'm 90% OK on the diarrhea front, but it's got to be 100% or I'm still pretty much home bound.

I note with sadness the passing of Dr. Hamblin. He and I sparred on a number of occasions and on a number of topics, but his knowledge and his expertise was without question. He is terribly missed already. He could explain complex issues in a way even I could understand it.