So as happens on these visits, my last scheduled appointment was with BB. I got to the clinic, met first with a research nurse who made sure all my medication records were being kept accurately, reported my minimal side effects, etc. I snuck a peek at my labs, reviewing my MRI and bloodwork and bone marrow (all good). I then met with the terrific physician's assistant JA to go over all of this before being summoned to the 4th floor and my consult with BB.
While there, I met a lovely couple who were monitoring the husband's MGUS. They had not yet begun any kind of treatment and had a few questions which I was happy to answer -- and I referred them to this little page so if you Longhorns are reading, hello! : )
Then I went into BB's office. When I get access to the photo I took, I'll post it here, which will further strip away anonymity for anyone who cares to look so it's almost ridiculous at this point to keep initializing him since anybody who is remotely interested (and if you aren't, not sure why you are reading!) could find out that it's Bart Barlogie so there it is: like the day when KISS decided to take off their makeup, I've revealed the name of my doctor.
Anyhow, I'll post the photo here when I have a moment.
Now, you've read some descriptions about BB here, and for those of you that I know, you've probably listened to me tell many stories about him -- always being kind not to tell me that I'm boring you! But I can't imagine this man is only of interest to me! My usual description of him is: "a 70-year-old German guy who rides a Ducati to the office and does his rounds in black leather biker pants and a dog collar." Sadly, he was wearing a different outfit on this particular day! Nonetheless, he is quite a character as my previous stories attest and as this one continues to affirm!
I entered his office. He looked at me, smiled, and say "hey there, a**hole!!!" and stood up and gave me a big hug and kiss. I couldn't help but tear up and frankly I am doing so as I type this. Some doctors are known for being detached -- two well-known doctors in this field are known for being rather cold, actually. BB, on the other hand, is emotionally invested in his patients. He and I are friends. I have mentioned before that I can see he is visibly effected -- saddened and tangibly angry at the disease and his inability to cure the most severe cases -- any time he loses a patient. The flipside is real joy and a lightness of being when he is able to put somebody on the path to a cure. Hence: "hey there, a**hole!!!" and the accompanying affection.
After introducing me to a colleague on rotation in from Greece (both a physician and the uncredited photographer behind the photo I shall post) he jumped into the file. The highlights:
* Bone marrow negative for plasma cell myeloma, with normal morphology. That means the right number of chromosomes, all in a nice little row.
* No trace of original M protein under immunofixation or SPEP.
* ALL BUT FOUR of the fourteen lesions in my bones have fully resolved. I had, upon diagnosis, two in my hip, one in a rib, one in the left scapula / shoulder, and TEN in different vertebrae. As of January, only two (shoulder and rib) had fully resolved. But now, all but four of them are completely resolved and the remaining four (two in my thoracic vertebrae, two in my cervical vertebrae) are small enough where their size is not noted (which means they are less than half a centimeter). Bart pointed out that UAMS is the only Myeloma center that tracks resolution of former lesions because their data suggests that recurrence can be linked in part to remaining focal lesions, even if inactive for cancer. So this is tremendous and important progress. My Zometa infusions were reduced from monthly to bi-monthly. We will see if he continues it once the bones are fully healed (as it does look like I will get there) as Zometa's anti-Myeloma properties may or may not extend beyond promoting bone healing.
* My Dex was reduced from 12mg weekly to 8mg weekly. This is the lowest amount that the protocol allows. I welcome the reduction and hopefully it will reduce the digestive issues that I get mid-week.
* I am to return in four months, and we'll see how it looks at that time but thereafter it seems likely that visits will be reduced to every six months. Which makes those Whole Hog sandwiches even more of a rare treat!
So there, friends, is the full update.
More news as is merited.
Monday, May 23, 2011
A very good checkup! (part 1 of 2)
Apologies for the delays in posting this, dear readers, but I've been frightfully busy with my day job.
Some highlights from the week prior to my meeting with BB:
* A lovely dinner with BJ at a restaurant I had not tried before, So. We discussed a few topics of interest:
- UAMS has been prescribing more Revlimid than anybody in the world to hundreds if not thousands of patients for a longer period of time than anybody in the world and has seen no incidence of increased secondary cancer. BJ attributes Celgene's own statistics to small sample size. My own opinion is guarded -- I don't like the fact that Celgene noticed anything, although I do understand that sample size can make a bit difference and UAMS has much better data than anybody in the world, and ultimately the risk is worth the reward as Revlimid plays a major role in the cure that I am pursuing.
- BJ notes that UAMS has been using maintenance therapy for 20 years, the first 18 of which were in the face of people saying it did no good, and that they view the recent broadening of acceptance of maintenance therapy with equal parts satisfaction and irritation.
- There are people who remain alive nearly 20 years after Total Therapy 1 (unlike current therapies, this is a small percentage) who are reluctant to discontinue their medications which include Thalidomide and Interferon. In the case of Thalidomide, its benefit is long since exhausted since any residual disease would have developed resistance to the drug by now. In the case of Interferon, it was never proven to be efficarious! Yet patients are afraid to change the regimen, particularly if they tolerate the therapy without side effect. BJ noted one patient in particular who is on a MAJOR dose of Thalidomide (over 1g a day!) who was reluctant to dose reduce even though the protocol at UAMS has been a fifth of that amount for years now. I wonder if I, myself, will be reluctant to dose reduce / discontinue medication after the three year mark when the vast majority of the "cure signature" has been determined. Or after the six year mark when recurrence rates are effectively zero. Hmm....
- I had previously succumbed to vanity and had a dermatologist in LA freeze off a single wart that had appeared on my right index finger. When this chap (no initials as I'm about to rip on him a bit) did that, he saw some as-yet-undeveloped naughty tissue around my fingernail so he froze that off as well. Except it came back so he froze it off again, and again, and told me to put this acidic cream on it, and trimmed the nail, etc. After all these treatments over a period of three months, the right side of the nail looks pretty unpleasant. The dermatologist out here thinks the nail matrix (the part of the body that produces the nail) has been scarred and will never work again and I'm going to have to have it surgically pared back and my fingernail will only be about 80% of the width that it should be -- forever). Mindful that the actor Roy Scheider had been successfully treated for Myeloma only to perish from complications that began with some kind of cellulitis, I asked BJ to look at the finger. She recommended I meet with a dermatologist at UAMS and would set up an appointment for me.
* I made the pilgrimage to Whole Hog BBQ for a delicious pulled pork sandwich. This is one of the things I miss about living in Little Rock. But frankly if I lived here full time I would probably be cured of Myeloma only to die of heart disease since these sandwiches are too good to resist! Behold the glory! (note: the "V" on the BBQ sauce denotes "Volcano" sauce which is so hot you have to get it from behind the counter rather than from the container of six different sauces on each table).
* I ran into J and B B (the other BB referenced a few posts ago) who looked great! Unfortunately, the next day they learned that their struggle continues...Pomalidomide (next generation Velcade) failed to deliver results and so now the Natural Killer cells are the next step, but the non-dr-BB has disease that has escaped the marrow and this must be eradicated before the NK cells can do their thing. I continue to be humbled by the strength and grace of people with this disease, particularly those with a more aggressive form than I.
* One advantage of having the MRI rejected by insurance is that I reduced it to only the essential stuff -- basically we are interested in tracking the resolution of my former "hot spots" so there's no need for MRIs of every other part of my body. As a result, I got in and out of that tube in about 40 minutes which beats the heck out of the 3+ hours (between the full body MRI and the separate bone marrow "DWIBS" scan) that it usually takes!
Okay, so to the important matter...well, actually my meeting with BB deserves its own post as this is getting rather long. : )
Some highlights from the week prior to my meeting with BB:
* A lovely dinner with BJ at a restaurant I had not tried before, So. We discussed a few topics of interest:
- UAMS has been prescribing more Revlimid than anybody in the world to hundreds if not thousands of patients for a longer period of time than anybody in the world and has seen no incidence of increased secondary cancer. BJ attributes Celgene's own statistics to small sample size. My own opinion is guarded -- I don't like the fact that Celgene noticed anything, although I do understand that sample size can make a bit difference and UAMS has much better data than anybody in the world, and ultimately the risk is worth the reward as Revlimid plays a major role in the cure that I am pursuing.
- BJ notes that UAMS has been using maintenance therapy for 20 years, the first 18 of which were in the face of people saying it did no good, and that they view the recent broadening of acceptance of maintenance therapy with equal parts satisfaction and irritation.
- There are people who remain alive nearly 20 years after Total Therapy 1 (unlike current therapies, this is a small percentage) who are reluctant to discontinue their medications which include Thalidomide and Interferon. In the case of Thalidomide, its benefit is long since exhausted since any residual disease would have developed resistance to the drug by now. In the case of Interferon, it was never proven to be efficarious! Yet patients are afraid to change the regimen, particularly if they tolerate the therapy without side effect. BJ noted one patient in particular who is on a MAJOR dose of Thalidomide (over 1g a day!) who was reluctant to dose reduce even though the protocol at UAMS has been a fifth of that amount for years now. I wonder if I, myself, will be reluctant to dose reduce / discontinue medication after the three year mark when the vast majority of the "cure signature" has been determined. Or after the six year mark when recurrence rates are effectively zero. Hmm....
- I had previously succumbed to vanity and had a dermatologist in LA freeze off a single wart that had appeared on my right index finger. When this chap (no initials as I'm about to rip on him a bit) did that, he saw some as-yet-undeveloped naughty tissue around my fingernail so he froze that off as well. Except it came back so he froze it off again, and again, and told me to put this acidic cream on it, and trimmed the nail, etc. After all these treatments over a period of three months, the right side of the nail looks pretty unpleasant. The dermatologist out here thinks the nail matrix (the part of the body that produces the nail) has been scarred and will never work again and I'm going to have to have it surgically pared back and my fingernail will only be about 80% of the width that it should be -- forever). Mindful that the actor Roy Scheider had been successfully treated for Myeloma only to perish from complications that began with some kind of cellulitis, I asked BJ to look at the finger. She recommended I meet with a dermatologist at UAMS and would set up an appointment for me.
* I made the pilgrimage to Whole Hog BBQ for a delicious pulled pork sandwich. This is one of the things I miss about living in Little Rock. But frankly if I lived here full time I would probably be cured of Myeloma only to die of heart disease since these sandwiches are too good to resist! Behold the glory! (note: the "V" on the BBQ sauce denotes "Volcano" sauce which is so hot you have to get it from behind the counter rather than from the container of six different sauces on each table).
* I ran into J and B B (the other BB referenced a few posts ago) who looked great! Unfortunately, the next day they learned that their struggle continues...Pomalidomide (next generation Velcade) failed to deliver results and so now the Natural Killer cells are the next step, but the non-dr-BB has disease that has escaped the marrow and this must be eradicated before the NK cells can do their thing. I continue to be humbled by the strength and grace of people with this disease, particularly those with a more aggressive form than I.
* One advantage of having the MRI rejected by insurance is that I reduced it to only the essential stuff -- basically we are interested in tracking the resolution of my former "hot spots" so there's no need for MRIs of every other part of my body. As a result, I got in and out of that tube in about 40 minutes which beats the heck out of the 3+ hours (between the full body MRI and the separate bone marrow "DWIBS" scan) that it usually takes!
Okay, so to the important matter...well, actually my meeting with BB deserves its own post as this is getting rather long. : )
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