XL 184

When good isn’t good enough, then you get more

Advanced Prostate Cancer, alkaline phosphate, Boston, David Emerson, PSA, XL 184 -
Tuesday was my four week check up with my Oncologist, along with the usual blood tests and shots. The appointment was uneventful for the most part, the doctor was away and we saw the Physician’s Assistant. She is great, but no decisions were obviously made with the doctor away, this was all expected from the last appointment.
Last month I switched a few drugs around; I stopped Lupron and started Firmagon (testosterone blockade), stopped Zometa and started Xgeva (bone strengthener). After making these changes four weeks ago I did have mild to moderate pain a few times during the weeks that followed. As almost always happens, the week leading up to the doctor’s appointment was as close to normal as I’ve had in a while. I felt great and remain that way this week as well. The side effects from the Firmagon shot (tenderness, redness and slight swelling at the injection site) seem to be much less than June. Or maybe I am just more tolerant this time around.
The exciting news is my PSA was actually down to 421 (it was 433 the month before). Though this is somewhat good news, the drug I started back in January (Zytiga / Abiraterone) is not having the impact we had hoped. However, I am very grateful for the result. An additional marker we track closely is Alkaline Phosphatase. Normal levels are approximately 40-110, mine had been between 50 and 60 for years. With the rise in my PSA this year, the AlkPhos has also gone up. According to one specialist my type of prostate cancer is creating PSA primarily via the bone tumors. Hence, my need to find a treatment that targets bone.
Speaking of treatments that target bone, yesterday we received a call from the doctor’s office in Boston. Without looking too far ahead, it was good news and we now have an appointment with the doctor leading the trial the first week of August. We are cautiously optimistic as there is not a guarantee that I will qualify for the XL-184 trial the purpose of this meeting is to determine if I am eligible. The appointment will include a blood test, a bone scan, CT scan and exam by the doctor.  Although I appear to be an ideal candidate on paper, things can always pop up. Once again, we are cautiously optimistic!
Assuming that the tests and the appointment go well, I will have to return 4 weeks later to start the trail. The delay is where this gets a little risky. I will have to stop taking a number of medications for those four weeks. This includes:
– Zytiga (Abiraterone) and Prednisone (the current hormone blockade I have been on since January)
– Lovenox (a blood thinner I have been on since last fall when I was on DES and had several clots in my leg)
– Finisteride (I have been on this drug for almost 5 years, the short story is it blocks a form of testosterone)
Stopping the blood thinner is the least risky in my mind. The clots I developed on two separate occasions can be attributed to my treatments at the time, one being Taxotere and one being DES. I have been off DES since December.  As a precaution, Dr. V suggested I add a low dose aspirin to my daily regimen. Finisteride is also a minor risk since my testosterone level is always extremely low. Zytiga is the big risk but the potential of this new drug is so great that it is a risk I am willing to take.
So if the crazy schedule of ours wasn’t busy enough, now we add a trip to Boston the mix!

Plans make a bitter pill

Advanced Prostate Cancer, Boston, David Emerson, XL 184 -

I guess a little medical update might be appropriate right about now…

I’ll start with what I ‘know’ instinctively based on how I am feeling and sense what is going on inside me. First, I have several swollen lymph nodes on the left side of my neck, where the neck and shoulder meet. These showed up in my last CT scan (December). They have increased in size, I can feel them but they don’t bother me. If they became a problem surgery or radiation are options, but they are not a problem at this point. My guess or instinct tells me there are a few others in my abdomen that have increased in size. This is soley based on the occasional ache and pain that comes and goes is my lower abdomen/lower rear ribs.

I have a similar feeling regarding my bone mets or tumors. I know the next scans are very likely to show either growth in existing areas or new areas altogether. As much as my PSA has gone up over tyhe past six months and the inability to start a new treatment protocal, I believe these concerns are almost guaranteed.

So what lies ahead? What are we doing about it? First in order to remain sane and functional, we have to remain both calm and hopeful.

On Friday, July 1st, Mary spoke to the clinical trial nurse in Boston. Here is what we know right now. At the end of July we tentatively should get the green light to go to Boston four weeks later. At that time I will have several additional tests to confirm I am eligible for the trial. If I am, I would begin taking the medication (oral) at that time. I would then have to return to Boston every three weeks for four more visits. After that the appointment frequency would change to to 6 week intervals.

So four weeks of uncertainty, followed by four weeks of ‘terror’ and follow that up with a lot of travel time.
Having a new treatment that results in less pain and better PSA scores will make it all worth it!

Great insight on Cabozantinib (XL 184)

Advanced Prostate Cancer, Cabozantinib, David Emerson, PSA, taxotere, XL 184, Zytiga -
There is a flurry of XL 184 information circulating after last week’s ASCO conference in Chicago. This link to MedPageToday includes a brief video interview with Dr. Maha Hussain, University of Michigan.
On a personal note, this is the drug that we are pursuing for my next treatment. There are currently open Phase I and Phase II trials, though neither are available in Kansas City.
The Phase II trial is recruiting in multiple locations, it looks like Las Vegas might be the best option for me. The Phase I trial is only available in Boston and though it is currently full, they will likely recruit 11 additional patients to expand the trial in late July. My Oncologists’ office is currently helping us determine if I qualify for either trial. Stay tuned!
If this doesn’t pan out, and because I am not responding to the Zytiga, my other option will likely be Taxotere, i.e. chemotherapy. If we do go down this path I will discuss using Taxotere in combination with some other drug in an off label or experimental basis. I’m not sure if there is anything available, or if this even makes sense, but we will be discussing these options with my Oncologist.
I have thought about Provenge but becasue it does not immediatley have an impact on PSA, it is not a path I am ready to pursue. 
Overall my health remains stable. I continue to have a few minor aches and pains from time to time but it is easily alleviated with a few Advil. 
My thoughts and prayers are currently with Terence in Seattle and Brian in New Zealand. I ask that you send your prayers and/or positive thoughts their way as well.

Hit me with your best shot.

Advanced Prostate Cancer, David Emerson, PSA, XL 184, Zytiga -
On the Thursday (May 19th) before my last trip to Atlanta, and vacation in Florida, I had my monthly appointment with my local Oncologist.
My PSA was 383, UP considerably from April. This was followed by a PSA in Atlanta that was up considerably as well (I’ll post historic numbers in a later entry).
This was not the news we were looking for and in all likelihood means Zytiga (Abiraterone) is not working. Though the Oncologist’s office in Atlanta was able to get me transitioned from the trial to receiving the drug via prescription, it was a poor consolation prize.  In order to close out the trial I will have to return to Atlanta one more time in mid-June and because I had already purchased the tickets this is no real burden.
What lies ahead is either another clinical trial or chemotherapy. Having been through chemo before this does not scare me since I tolerated it so well. What does concern me is the fact I did not have very good results from chemo back in 2008. The clinical trial would require considerable travel to Boston; every three weeks for the first 5 treatments and then every 6 weeks. While I was frolicking in the sun last week, Mary spoke with the study nurse and now we are waiting for a call back to proceed with the process of qualifying for the trial. The drug, XL 184 (targets the cancer tumors in the bone) has shown unprecedented results in previous trials and I pray that I can get into the trial as soon as possible.
 
On another note, the Prostate Cancer community lost another of our brethren last week when Walt, a gentleman from Alabama passed away. I didn’t know him well, although we did exchange several emails from time to time. I am saddened and pray for his wife and family.
I dedicate this prayer to Walt and his family….

Hail Mary, full of grace, the Lord is with thee; blessed art thou amongst women, and blessed is the fruit of thy womb, Jesus. Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death. Amen

An alteration, a variation or perhaps I just go with ‘an adjustment’?

Abiraterone, Advanced Prostate Cancer, David Emerson, PCa, Provenge, XL 184 -
I had my monthly appointment with my oncologist, Lupron shot and Zometa infusion yesterday. The latter two items went off without a hitch, as usual.
My PSA however was up again and now at 81.2

I was not at all surprised with this increase based on the previous two PSA readings and how I feel.  Let me clarify how I feel, overall I feel great. However, because I have a very high tolerance for pain and the fact that after six years of this I am very in tune with every ache and pain in my body, I knew the PSA was up. Nothing severe, just an occasional twinge in my hip or leg(s) etc., no Advil needed it comes and goes.

So it seems that the DES (estrogen) has run its course and so it’s time for a change. We have discussed a number of possible treatments with Dr. V however, two are not yet available and the doctor’s team is still trying to coordinate the third. Given this and the need for a change we decided that as a short term stop-gap I would replace the DES with high-dose Casodex. Casodex is an anti-androgen that is combined with Lupron as the ‘standard’ treatment when men are initially diagnosed with advanced PCa. I was initially on Casodex for the first year after diagnosis. In a high-dose dosage there were a few small studies ten years ago that showed some limited benefit. If my results are nothing more than the stabilization of my PSA while we line up the next treatment, I’ll take it.

On another note, the doctor did feel a slightly enlarged lymph node in my neck. He didn’t seem too worried but I am having an abdominal CT scan on Thursday just to be safe.  There are times I think my laissez-faire attitude or sarcasm leaves Dr. V dumbfounded. For example, after telling me about the lymph node and the order for a CT scan, I responded with the following; ‘Well I guess the CT could result in a bad news, good news situation. The bad news is we found something, the good news is you now qualify for the XL 184 trial!’  He had no idea how to respond.

Just so you the reader understands, I honestly believe that because life itself is far too serious, you have to see the irony in things, and retain a little bit of sarcasm in your everyday life. Mary and I laugh a lot at this whole situation. When we left the doctor she said (thick with sarcasm)  “Oh well, just another appointment, your numbers are up, you have a swollen lymph node in your neck, you  have to have a CT scan, your iron level is down and I have three new prescriptions to get filled!” We then went on to ponder whether or not there was something wrong with us because of the way we react to news like the news we just received?  Shouldn’t we be upset, emotional, pissed-off, something? We are not naïve nor are we emotionless, it’s just after this much time we don’t fly off the handle or get too worried. It is what it is and we have to let it all play out before our eyes.

‘Ladies and gentleman, we’re going to be here awhile’

Abiraterone, David Emerson, PCa, Provenge, PSA, XL 184 -

The title is a frivolous attempt at humor, but it appears we are in another holding pattern.

With all of the information that continually bombards those of us dealing with PCa, it was good to hear the doctor from Boston say this today, “You have done a remarkable job of managing your case by not panicking and constantly switching protocols. You have managed to survive longer than the average, longer than most,and in very good overall health!”. This is not the first time we have heard this.  We also heard it when we visited MD Anderson in April 2009. It tends to make me puff out my chest when two of perhaps the top five Prostate Cancer researchers in the country reaffirm that we have made the right decisions throughout my treatment process. Long term, things are bad, but they could always be worse.

After reviewing my chart and discussing my case for 15-20 minutes, the doctor informed us that I am not currently a candidate for XL 184 (A requirement for the trial is that lymph node and/or organ involvement would need to be present in addition to the bone metastasis). Believe it or not, I was not discouraged, mostly because of the doctor’s words and presence. He was unbelievably gracious and supportive.  He encouraged us to stay in touch and invited us to confer with him again before we make any treatment changes in the future.  He also reminded us that clinical trials change and my condition might change as well.

I obviously am not a doctor, but my experience with this journey tells me this, because my treatment options are limited, I have to get the most out of each treatment. When making  the decision regarding when it is the best time to alter treatments, I believe it is a combination of considering quality medical advice, PSA doubling times, scan results the patient’s overall health and how he is feeling and then following your personal instincts.  That has been our approach, and so far, so good!

With XL 184, we were just trying to line up another option. XL 184 is targeted directly to the bone tumors, which peaked our interest in this relatively new treatment option. When the time comes to choose the next treatment regimen, we plan to have two or three options lined up, Provenge, Abiraterone, or maybe this newer drug XL 184.  It is truly a luxury for an advanced prostate cancer patient to have treatment options after being diagnosed almost 6 years ago.

The good news, and this is sometimes hard for me convey in words, is that unlike when I started this journey,there are more options. Five years ago my next step would have been to try chemotherapy again. Since it didn’t work as well as we had hoped the first time, the chances of it working a second time are not very good. Now, in late 2010, I find myself with three potential treatments.  It will be a difficult decision, but it won’t have to be made until sometime in the future.  Once again I find myself sleeping well and remaining encouraged that in the midst of my chaotic life, things are very encouraging!

And yet another

David Emerson, PCF, XL 184 -

Friday was both my monthly appointment with my oncologist and a periodic bone scan. This translated into an entire day at the cancer center. We left the house a little before nine and we didn’t get back home until nearly six.

It provided a chance for a lot of together time for Mary and I, as well as time for a lot of people watching. NOTE: I swear Lady Gaga walked into the Starbuck’s on the Country Club Plaza!  We both got a laugh from this one! We also observed the typical jackass at the cancer center. This is the type of patient that visibly expresses their fear and concern through one of those permanent pissed off looks on their face. They follow that up with harsh words for the poor lady at check in and the cherry on top is when they make comments that clearly articulate the fact they certainly didn’t listen to a word of the instructions they were provided explaining the CT scan process. The prime example is the statement he rudely yelled at the admin person behind the desk, “No I haven’t received any liquids to drink, I’m here for a CAT scan, why would I have to drink anything?”. OK Einstein, I’m going to speak real slow so you can follow along…..you must drink the liquid in order for the scan to capture the pictures of your insides!

Sorry, but sometimes rude, ignorant people just get to me. Back to the matter at hand, my status update….

Every time I have a bone scan Mary patiently waits in the reception area and when I come out she asks me ‘what did you see? How did it look?’ Usually there is not much to report, and there didn’t seem to be this time either. However, after having radiation treatments back in June, I had expected much less visible activity on the monitor than I began to see as the scan was about half way over. There was a clearly visible spot on one of my hips. I’m not sure that it is more or less than March, but as I said, it was more than I expected to see.

Dr. V then provided this update; my hips and legs are ‘stable’ when compared to the last scan in March. I was hoping they were better after having radiation treatments in June but stable beats the alternative! My PSA however was at 35.08, up from 28.69 last month. Not too much of an increase, but not lower.

We spent considerable time discussing a new trial that was recommended by Dr. Simons of the Prostate Cancer Foundation. When I was in Washington, DC he mentioned that I should look into the trial and discuss it with my local Oncologist. There are three sites he recommended; San Francisco, Ann Arbor and Boston. At this point we are leaning towards Boston and hope to connect with the doctor there this week. Dr. Simons was kind enough to provide us with the contact information for all three centers.  We have selected Boston and have sent an email requesting to be considered for the current trial. The drug is called ‘XL 184’ and is specifically being used to target cancers that have metastasized in the bone. 

I’ll post again as soon as we talk with the doctor from Boston.