Thursday, January 27, 2011

Reflecting on lost friends, those still here, and those I continue to meet...

It's roughly two years to the day since I began treatment.  I took my medicine this week, including Zometa (a pricey little thing at $3,400 per infusion!) to hopefully spur my bones into healing quicker and resolving those remaining inactive tumor sites.  If they're all gone by the time of my next trip, with some luck I won't need to have a fine needle aspiration done on any of them!

And I deal with the side effects.  All things being equal, of course I'd rather not be on this stuff.  My muscle atrophy is bad...I used to have a pretty well muscled lower body and now it's nowhere near as strong as it used to be.  Between tiredness and the barrage of winter colds encouraged by my intentionally suppressed immune system, and of course my work schedule, it's hard to even think of when I might exercise but I really need to start physical therapy.  Damn, I should have made that one of my new year's resolutions.

But I remain very fortunate.  I'm thinking now of two groups of people...the first group is comprised, unfortunately, of a small but growing numbers of fellow Myeloma travelers I've met since my diagnosis.  Some were quite sick at the time of my diagnosis, and some were not yet diagnosed.  But several have given up the struggle and lost their battle with this horrible disease.  These people are friends in a very real sense...and I feel the loss.  Just today, I was looking through another blog and found that the woman that maintains it lost her husband literally yesterday after a single transplant a couple of years ago.

Then there's another group of friends who have chosen to control the disease, with minimal use of drugs and reserving stem cell transplant as a last resort, etc.  For a time, these friends seemed to be faring well but one by one they are losing remission.  I fear for them, not because they necessarily will have a dire end any time soon, but because it is a reminder of where the "control" path leads.  To eventual recurrence and the hope that science outpaces the disease.  And certainly there are more drugs now than ever before to help beat it down.  I will of course be reliant upon the newest of these in the (unlikely) event my own disease returns.

Then there's yet another group...people that contact me through my blog.  On average, I get perhaps two emails a week from newly diagnosed patients.  It is one of the most rewarding things in my life when this happens...I feel like I am able to provide a little perspective, and some optimism.  I started this blog, in part, because everything I read was so defeatist.  I remember the book saying "your new birthday will be the date of your transplant, nothing will ever be the same, etc."  Well I had two of them, and I can scarcely remember the month with confidence, much less the day.  And while there is a "new normal" that has replaced the "old normal," I would say that most things are very much the same.

So this is rambling, but I guess I would say to my second two groups: don't be afraid to take the fight to the disease if it's acting up.  Don't be afraid of a transplant if that's part of the protocol you and your doctor choose.  Don't fret about the side effects: the side effect of untreated Myeloma is death.  That's a bigger deal than hair loss!  Or the other side effects -- which I humorously found mentioned on another blog as NVD (never thought of my initials being a mnemonic for nausea, vomiting and diarrhea).  As I mentioned during my own transplant experience, they are very good at controlling the first two.

And while I strive not to be messianic in this blog, if you are newly diagnosed, PLEASE do yourself a favor and investigate aggressive therapy.  People are being cured in large numbers.  It bothers me so much when people refer to Myeloma is incurable.  That's simply not true.

All that said, the aggressive path is not for everybody, but three things are:

* Find a Myeloma specialist.  NOT just any old hematologist, not somebody who dabbles in it along with lymphoma and non-HL and leukemia.  But somebody who REALLY knows this disease.

* Take control.  Demand your labs.  Ask questions.  Learn everything you can about the disease.  Be your own advocate.

* Bring a positive attitude.  Once you have selected your treatment path, be confident in your choice.  Put your trust in the hands of your doctor.  Remember, any pill you take or infusion you receive that causes an unpleasant side effect is killing your cancer and upsetting it much more than the rest of you.

* Commit to getting better.  Make this the most important thing in your life.  If you have to move temporarily to be closer to a true center of excellence, do it.  Your home will be there when you get back.  If you worry about the expense, consider this is the fight of your life and if it's not worth burning through savings on this, what is it there for?  If you worry about vanity like hair loss, get over it and get better.  Nobody chooses this path: you are dealt a crummy hand.  You can either play it to win, or fold.  Play it to win.

Friday, January 14, 2011

Normal marrow and other thoughts, including BBs opinion on the Revlimid scare

First off, everything looks good. Marrow has 50 percent cellularity, 5 plasma cells, 2 percent core plasma cells and is negative for Myeloma. Also, my hip doesn't hurt all that much so the new bone marrower must have done a good job!

I got to the clinic early today. I had a 12:45 appointment with BB and, keeping in mind that last time I got to the clinic early and got seen pretty quickly, attempted the same. I got there at 10:30 or so. Sure enough, I met with the research nurse pretty quickly. Hard to believe I am heading into my 17th month of maintenance already.

Then things slowed down. Waited in the clinic for about an hour, then got put in a room. I read my labs...the MRI, unfortunately, did not indicate any shrinking of the four remaining focal lesions. They were stable, but did not resolve. My blood work came back negative for M protein under SPEP, but there was not yet a result from Immunofixation which is the more sensitive measure.

I observed on the MRI various characterizations -- hypointensive marrow, hyperintensive marrow, isointensive marrow, homogenous marrow, heterogenous marrow, etc. I tried to discern any differences between the previous scan and this one but I lacked the knowledge to figure it out.

I sat and waited, and waited, and waited. I had a flight to catch and wanted to leave by 3PM and it was starting to look dicey. At around 1:45 the clinician, a terrific physician's assistant named JA, arrived. He called and got the bone marrow results, which was a relief. He explained that what we are looking for is homogenous marrow, as opposed to heterogeneous marrow, as the latter implies patchiness. So in this context these descriptors do not refer to the cellular content of the marrow but rather the evenness of its distribution through the body.

The other vector -- hypo- hyper- or iso-intensivity -- is a little more complicated. MRIs (at least the ones done here) use two types of images: T1-weighted and STIR. I have no idea what these distinctions mean, but JA explained that T1-weighted images focus on the liquid in one's body which makes the readings of marrow hyper intensive. So the ones to look at are the STIR images, and the best reading is evidently isointensive (which means the same all over).

For what it's worth, I am mildly hyperintensive. Sadly I learned what all this meant after I turned the file over to JA but next time I will see what I used to be and how it has changed. All of this is subjective and up to the tech that interprets the MRI, so one's mileage may vary. I was told by JA that BB would not react to any of that data, although he reminded me that "sometimes BB sees things in the data that the rest of us do not see."

It was now 2:15 and I reiterated that I had to get on a plane at some point original appointment time with BB was 12:45. JA said that BB was almost back on schedule and I should be able to get out of there by 3PM, which would be perfect.

Then I sat down with the man himself.  He looked troubled (though not by me).  He got on the phone with the hospital, got some people on the line and was quite upset.  From what I gathered, one of the APN (uber nurses) in the Myeloma clinic had developed Waldenström's macroglobulinemia, which is itself a blood cancer.  BB had done rounds yesterday and noticed that this person's white cells were at zero.  He ordered a bone marrow and asked that stem cells be readied.  When BB saw the results of the bone marrow he ordered the stem cell transplant immediately.

Apparently the doctor at the hospital who had to sign off on this cited protocol that the two things (bone marrow biopsy and stem cell transplant) cannot be done on the same day because it can create a chaotic environment in which patients can be at risk.  BB's point of view is that this isn't done every day, and that if exceptions cannot be made when a person's life is at risk, there is something seriously wrong with the policy.

BB laid it on the line: if this young man dies because of this, he is gonna give it to everybody over there with both barrels and hold them responsible.

I mention this because BB becomes personally invested in the patients under his care.  I have written about this before.  Every patient lost to Myeloma is an affront to him.  He confided that this has been a "horrible year" so far and that half a dozen high risk patients have been lost.  "you follow these people and treat them for so long, and then to lose know..." I could see how it affected him.  He said that "it's as though there is nothing in common between the two branches" -- meaning he really does think that most low risk patients will be cured.

While waiting for him, I spoke at length with a gentleman who looked to be in his late 50s who was himself high risk but was still in remission three years after he began.  High risk patients achieve remission easily but the recurrence rates are frightfully high for the first three years.  After that, they flatten out and recurrence risk is very low -- in fact they are likely cured.  The gentleman with whom is spoke is three years out.  When he last saw BB, the doctor said "you are almost out of the woods...but not quite!" and winked at him. Hopefully this guy -- who looked great, it must be said -- is out of the woods now with this current visit.

That man and I spoke, as it happens, about BBs humanity.  He has an edgy sense of humor and is an iconoclast and is the same guy who jokingly pulled a clump of hair out of my head and pointed out how fat I was last time I saw him.  Yet his care for his patients is immense.  The high risk gentleman told me of how he thought his major courses of chemo were finished during his primary therapy (like me, he is on maintenance) and he was saddened to learn at the time that there had been one more course.  Evidently he had been misinformed, and BB was angry.  He got on the phone with whomever was responsible and said "dammit these patients go through hell, you cannot pull the rug out from under them with this."

Back to the present.  BB was happy with everything in my chart except for the presence of the focal lesions that we want to see resolve (I have four or five left...two in my spine, one in my right hip, and one in one of my shoulders, possibly one in my rib).  These are no longer FDG-avid -- meaning there is no cancer -- but as long as they are there, there is a chance that they can form a microenvironment for recurrence of the cancer (such is BB's theory, at least).  "Sometimes, these ghosts can could take years in some people before they go away.  But we want them gone."

I suggested Zometa and he agreed, so i will get one course every month for the next four months.  He said he was "considering doing a fine needle aspirate of the lesions" but that the last time that was done, they were negative for Myeloma so he was not yet ordering it, and i will not need a PET scan next time either.  I cannot say I am happy about the prospect of the FNA but I will cross that bridge when I come to it.

He offered me the ability to come back in six months rather than four, but i want to see these gone, and I want to hang out with BB, frankly, which we were not able to do this time.  He asked about my family and told me to email him directly next time so that we can arrange dinner.

Then he said "you know, I saw a newspaper article about my good friend RS, who used to work with us here and now operates out of Hackensack...and this pisses me off.". He showed me the article, which was about Dr. RS's enthusiastic support of Carfilzomib, the next generation protease inhibitor which works in many cases where Velcade no longer does.  The offending line in the article (which were not RS's words) referred to Myeloma being a disease which is "uniformly fatal.". BB said "why do they say that?"

I said that it upset me every time I read something similar, whether in an article like that or a fundraising letter from the MMRF (long-term readers know that I hold this organization in immense esteem, its refusal to acknowledge UAMS' results notwithstanding).  I said I felt it was a slap in the face to the work being done at UAMS and to patients who have undergone treatment and been cured.  We mused that it was in part a desire to maintain urgency behind fund raising and new drug development, but BB said "when you are curing childhood leukemia, you can raise money by pointing out the tremendous advances being made.". That is true, although I do think maintaining urgency behind a disease that cannot be definitively cured in virtually 100 percent of patients is pretty important.

I then asked BB about the Revlimid scare.  Unlike GD, when I asked this of BB he knew immediately what I was talking about and I didn't even need to finish the sentence.  His response, verbatim to reflect both his personality and his passion:  "that's total bullish*t.  Absolute bullish*t.  We have seen hundreds of patients for many years and it's never happened.  Somebody is selling something or has another agenda."

So there you have it.

Our time up, BB stood up and embraced me for a good 20 seconds and kissed me on the cheek, telling me again to give my family his best.

I cannot wait to see him again.  I love that man.

Notably, I am on a flight to Las Vegas and the makeup of the passengers looks like a church group. Not sure the point of a church group going to Vegas...

Thursday, January 13, 2011

Two things to be nervous about...

I am typing this from a stretcher about to be rolled in for the bone marrow.

You gotta love how good Arkansas is about getting patients their data. I looked at the PET scan results. Largest lesion remains in my right hip at 3.5 cm. I seem to recall that is unchanged from last time, which is disappointing. Plus the SUV for my L5 vertebrae went from 1.3 to 1.6. Hopefully this is just noise and neither figure is indicative of cancer but I like numbers to go down, not up.

Second nerves-inducing moment was overhearing the bone marrow nurses. I am to be the first attempt by one of them. Things like "if you do that, then you will just need to make another hole."

Let's not do that, okay?

And while you are at it, keep your voices down or have these conversations out of earshot!


Those onomatopoeias there reflect but a few seconds worth of the aural cacaphony of an MRI.

I had about two hours worth of that plus a host of other loud noises yesterday afternoon. Only here, ground zero for aggressive testing, could they find a way to make an MRI more exhaustive (and exhausting). I may have written last time about the relatively new (I think) DWIBS scan which essentially a second full body MRI focusing specifically on bone marrow. So now, one has basically TWO full body MRIs to deal with.

I also had my tenth or eleventh PET scan yesterday. I found out that I can listen to my iPod during the roughly fifty minute scan. File that under "things I wish I had learned nine or ten scans ago."

I will get the results of these scans tomorrow when I meet with BB, whom I saw at dinner last night. He was having a dinner with his right arm, BJ, and the head of an imaging company. I am sure BB and his patients are some of the best customers. I believe there are six MRIs at UAMS, with zero downtime, running 12 plus hours a day, and 80 percent of the entire volume is for Myeloma. Amazing!

Yesterday began with port access and blood draw. I was unsuccessful in my efforts to get them to use the port for the blood. The clotting factor (important to confirm before a bone marrow biopsy can be done) is rendered inaccurate by the heparin used in the line after each access to ensure it doesn't clog. So they found a vein in the thick part of my right forearm, about three inches towards the hand, versus the inner fold of the arm at the elbow where people with healthy veins are usually tapped.

I asked the nurse about the likelihood of my veins returning to health. It does not sound promising, sadly. C'est la vie. Difficult-to-find veins scarred by chemotherapy are not going to kill me, and I have long since learned to accept that the "new normal" is a life replete with little inconveniences.

(a real-time note: the delightful doctor with whom I just checked in to make sure I could tolerate the anesthesia for the biopsy just asked if i was related to Dick van Dyke...but was astut enough to note that this was probably not the first time I had been asked).

Anyhow, while I was not successful in getting them to use the port for the blood draw, I was able to have them access it for the tracer used in the PET scan, and I will use it for the sedation today, so that saves a couple of IVs. I also refused the use of contrast for my MRI. They use it sometimes to make the brain easier to interpret and I have had it before. But there was never any myeloma involvement in my brain (thus, my questionable brain function must have another source) so I don't feel compelled to do this often, particularly since I am in remission (knock on wood that it hasn't been lost) and since I heard a rumor on another blog (albeit one that advocates curcumin rather than treatment) that the tracer is bad for you.

Which brings me to this morning. Checking into the hosipital for the first of two pre-op consults, in the waiting room I was treated to the thrill-a-minute joyride that is closed circuit television coverage of the swearing in of the eight recruits comprising the new additions to the Little Rock police force. I was just about to listen to the moving convocation delivered by either the city sub-comptroller or dogcatcher (it was difficult to discern) when I was called in.

I did see a more thorough blood analysis from yesterday's pull (more labs were finished) and the numbers look good, though still no M-protein numbers. But B2M was a mere 1.4, the lowest it has ever been. Protein is 5.9. The graph looked good as well. My liver numbers are essentially all in range (AST's range is essentially 15-50 and I am at 52) so the amount of water I am drinking must be helping combat the effects of Lipitor, chemo, and wine.

More news at it becomes available.

Nb it is FREEZING here. Literally. 23 degrees as I drove in this morning!