I’m still alive.
On Friday June 29 I was admitted to UW Hospital’s RehabilitationWing (pretty much the same location as 2 years ago) . This admission was due to the fact that (a) like two years ago, I am unable to swallow, and (b) I have a fever (38 degrees °C, about 101 °F).
Something different this time is that I have succumbed to the suggestions of UW Hospital staff and started taking lots of morphine. This has two effects. One is that I started writing this post at about 9AM this morning, and have been working on it more ore less continuously since then, and it seems to be not done yet. The other is that I have no idea whether it makes any sense.
Anyway, yesterday I was put on TPN, Total Parenteral Nutrition, aka “steak and eggs in a bag.” So at this point just about everything comes to me in a bag. World of the Future. I guess the pain came to me in a bag to start the whole thing off so it’s only fair.
It’s Day 9, so things may start to change soon. Whether they’ll change for the better is the big question.
Also, my hair is now starting to fall out. Good times.
And now for something completely different, a man with three birthdays. In my case, October 29, May 26, and now June 21. It feels like the bodies must be piling up somewhere though.
Day Zero went like this:
- 5:30AM: wake early to start pre-TBI hydration at home via mobile pump
- 8AM: drive Mike to SCCA to start his second day of apheresis
- 9AM: breakfast, morning meds
- 10:30AM: SCCA Radiation Oncology for Total Body Irradiation
- 11:30AM: SCCA Lab for blood draw
- 11:45AM: start 2-hour infusion of Tacrolimus, an immunosuppression drug, via mobile pump
- Noon: Lunch at SCCA cafe
- 1:45PM start transplant of stem cells harvested from Mike the day before (while Mike is down the hall producing more today)
- 2:30PM visit from transplant team, led by Dr. Frederick Appelbaum
- 4:30PM start transplant of stem cells harvested that day
- 7PM Finish transplant, go home
- 10PM start another 2-hour infusion of Tacrolimus
- midnight: brush teeth, go to bed
This all went OK, though as the day wore on I went from feeling merely tired and nauseous to profoundly fatigued and sick. I had to use a wheelchair to get out of the building. But I was able to make it up the steps into our house before collapsing on our beloved couch.
They had hoped that Mike could produce 5M stem cells on the first day, leaving the second day for collection for research. Alas he only did 3M the first day, but was up for 1.8 the second, so 4.8M total, which is “just fine” per the docs. So way to go, big guy. Not bad for almost-63. I think he was a little taken aback by the high praise he got from the SCCA nurses for his “killer veins”. “Yeah, we’re always checking out people’s veins, it’s kinda fun,” one said. Hmm.
For this TBI I got to lie down on a bench rather than stand up like last time. This was good, because I don’t think I could have stood up for the whole thing. They had a amusing 60s soundtrack playing: “Blowing In the Wind”, “It Aint Me”, “RESPECT”, and lastly “I Wanna Go Home”. Keep the old patients entertained I guess.
The visit from Dr Appelbaum was interesting. He is the Executive Director of SCCA but still walks the floors. I think he enjoys chatting with Eve since he can pull out all the medical-research jargon and she mostly gets it. At one point he looked at the stem cell bag hanging on the hook with a look that seemed to say “I can’t believe that this stuff we just made up really works.”
Sitting here now on Day One (OK, actually late on Day Two now), the next phase starts where we wait for the new system to engraft, and I try to stay out of the hospital. I really do feel like complete crap, “but that’s normal at this stage.” Anyway nothing to do but wait and watch soccer.
Just to clear this up, for all you computer people.
Last time was “re-install OS and restore from backup”.
This time is “install a different OS”.
Next time is “migrate to the cloud”.
Just a quick update. The first four days of chemo have gone quite OK. I have been feeling pretty good. Today I even took a shot at Baguettes à la Bouabsa and they turned out almost like the pictures. Also tasty when dipped in split-pea soup, the perfect thing for a cold drizzly almost-summer day in Seattle.
Mike’s stem cell inducement is going well too. The transplant team are very impressed by the counts he’s putting up. Good thing, because if he didn’t, I’d be rather out on a limb, wouldn’t I? As we say in the risk management biz, it’s all risk management.
Meanwhile my family is taking the opportunity of having me out of the kitchen (mostly), and having a guest, to show off their culinary chops. Father’s Day dinner was grilled T-Bone steaks, grilled veggie skewers, potato-leek soup, home garden salad, and chocolate-hazelnut tart. And I didn’t do any of it. This is the life.
The one big problem is that the scheduling of all this treatment terribly impairs my ability to watch any of the Euro2012 soccer tournament. I’ve been getting infused during game times, in nice rooms on the 5th floor of SCCA with decent TVs with lots of channels. They have CNN, they have TBS, they have ROOT, they even have QVC. Do they have ESPN? No they do not. “Didn’t come as part of the deal” someone said.
No problem, I should be able to get to the video streams via ESPN3 on the web, right? And validate my access rights via federated signon to my Comcast account, which is totally cool. The signon works, but the video doesn’t, most likely due to some firewall blockage on the SCCA guest network. And getting firewall changes is harder than getting a transplant.
So, smart phone has video and 4G, right? In theory, theory and practice are the same; in practice, they’re not. Phone connectivity sucks in the infusion rooms (wifi is good), and ESPN3 apparently doesn’t have a deal with Sprint to carry their bits, so too damn bad. The world is not in fact anything like those ads on TV. Who knew?
Anyway I’m not making tournament predictions. I’m not. OK, looking forward to Spain-Germany final. That’s all I’ll say. But there’s always Greece …
(And lest I forget, a big shout out to my Andalucian pal Victoriano, who arranged for a colleague to carry delicious local almond-chocolate treats from Málaga to my door. Foodie geeks rule.)
I didn’t fully appreciate until today that the conditioning I’ll be getting in the runup to the transplant is yet another clinical trial. This is because pretty much any treatment for MDS at this point is a trial. And that is because MDS is the coolest new celebrity disease, as of this week. And getting a transplant from one’s sibling is what everyone is doing this season. I am waiting for pix of pimped-out Hickman catheters.
Anyway the clinical trial info from NIH is: http://clinicaltrials.gov/show/NCT00860574
And from Fred Hutch: http://www.seattlecca.org/clinical-trials/transplant-2272.cfm?ProgramID=38
Note that “this study is currently recruiting participants.” Sign up today! Or, assuming you don’t qualify, let me join Robin Roberts in suggesting that you consider signing up at the Be The Match Registry. Robin and I were lucky to have sibling donors but not everyone is. And if you’re into Identity Registries then it is just professional courtesy.
Up until fairly recently I think BeTheMatch was called the National Bone Marrow Registry. I guess they decided they needed a catchy name to appeal to a more attractive demographic, that is, people under 60. Another part of the strategy, naturally, is exploiting social media. There’s a site called mySocialStrand that apparently tries to connect DNA-linkage to social networks. It is probably fairly cool, but I can’t recommend it, or use it, due to an odious choice they have made regarding identity. Oh well.
Anyway, today’s news is that I got my Hickman in yesterday and it’s fine, not even painful. It worked well today for a blood draw, so I didn’t have to be poked. Today’s ration of pain was last-minute teeth-cleaning. I’m headed to the airport in a few minutes to pick Mike up. Appointments tomorrow start at 7AM, chemo at 9 and 11 …
Today we had our go/no-go meeting with the attending doctor at the SCCA allogeneic transplant unit, the very natty Dr. Jerry Radich. There wasn’t much question about going ahead, but this was the time to go over all the findings of the tests from the last two weeks, look at the details of the protocol, and make sure everyone agreed to proceed.
Everything looks good. There are no signs of progression to leukemia, which has been the main concern. The lymphoma is also not present, by both scan and by blood and marrow markers. All my organs (liver, kidneys, lungs, heart, brain?) are performing normally. My neutrophil count is still quite low, but platelets are good, and hematocrit is a not-too-shabby 28. I have a sibling donor who is a perfect match. I am relatively healthy, and relatively young, for this procedure. My MDS abnormality is one of the less-bad kinds. All these factors point in one direction, which is a successful transplant, with less likelihood of bad GVHD. So, all things considered, it’s a happy outlook. What could go wrong?
Tomorrow (June 13) I’ll get my Hickman catheter. Friday I’ll start chemo. It is notable that the point of this chemo (and total body irradiation on the transplant day) is not attacking the cancer, but wiping out my immune system so that the foreign stem cells can have the best chance of moving in and taking over. It’s pretty much the same stuff used for actual cancer treatment, though.
In other news, it was Oliver’s 9-month birthday yesterday. Here’s a recent pic (click to get full size):
This was on a Memorial Weekend trip to Lummi Island. It was his first encounter with salt water. He couldn’t understand why it didn’t taste good like water always has, and kept trying different parts of the beach looking for the good stuff. Eventually he threw up.
As I have written about endlessly, on Wednesday, May 30, I re-entered the transplant program at SCCA. This transition is rather odd because I have been to SCCA probably 100 times over the last 18 months, so I’m no stranger to the place, yet now they treat me like a new patient. But the transplant program is The Big Kahuna, the main reason that SCCA and Fred Hutch were created. People come from all over the world to be transplanted here. So my moving only from the 4th floor (general oncology) to the 6th floor (transplant) is somewhat unusual. But hey, I got a new ID card. (And the finance lady said insurance will cover the whole thing, again. Yay.)
My brother Mike also got a new ID card, because we went in together:
He’s the old guy on the left. I’m the old guy on the right. As it turned out his registration somehow got his middle name wrong (“Wilbur”?) which created some lively confusion for an hour or so. Always something. In fact they’re still calling him Wilbur this week.
We met with the allo-transplant team PA, who went over my medical history one more time. He asked: “when was the last time you were at work?” I said: “uh, yesterday.” He said “wow, after all those things that have happened you’re still working? You must be some kind of tough guy.” Yep, that’s me, Mr. Tough Guy.
We both underwent lots of tests, more for me than for him, but he had to be shaved for the EKG and I didn’t. Perhaps the most amusing was the Pulmonary Function Test, performed by Pulmonary Pat, a tech who has apparently been doing this for far too many years. She is very upbeat, which is good when exhorting the patient “blow it all out, hard as you can, more more more!” in order to test lung capacity. I pushed 5.4 liters, which is Normal. But there is such a thing as too upbeat, you know?
Mike was there for three days, and was occupied with tests and meetings and things for about 5 hours total. “Seems like it could have been done in one day” he said. I assured him that waiting in the clinic is a key part of the therapeutic process. His last meeting was to obtain consents to do all the work. They threw me out of the room so they could talk to him privately to make sure he wasn’t being coerced into being a donor. (There’s a “bad blood” joke in there somewhere.)
The big procedure of the week for me was a bone marrow biopsy, actually an “aspiration”. In any case it involves putting a needle into the hip bone. I’ve had a few of these, and they aren’t pleasant, but I was more apprehensive this time because after the one I had in February I was in pain for a couple of months. “That’s unusual” they said. I mentioned this, in pointed terms, to the NP doing the procedure this time, and it has been pretty much pain-free. So: it pays to complain.
The intent of the biopsy was to determine where the MDS is at now. All the results are not back yet, but the key finding was that the blast count was negligible, which is pretty much a direct indication of non-progression to leukemia. Pretty good news. Probably means the azacytidine did its job.
Next week things will ramp up. On Wednesday I’ll have a new Hickman catheter installed. This is a relatively permanent tube, aka central line, that goes right into the heart, thus giving easy access to the bloodstream for all the inputs and outputs that happen during transplant and followup. In the last few months I’ve sometimes wished I had one as my arms have gotten regularly poked. Now I will. It does have its downsides though, like making it harder to take a shower. And having to be careful that it doesn’t get caught on something and ripped out of your chest, which would be bad.
On Friday June 15 I’ll start five days of chemo in the runup to transplant day. The drugs will be fludarabine and treosulfan. There is a day of rest (more or less), then on the morning of transplant (June 21, if all goes to plan) I’ll get a single shot of Total Body Irradiation (I had 8 last time) to “stun the immune system” before getting the new stem cells later that day. Those cells will have been harvested from my brother the day before, following his several days of being injected with GCSF, aka Neupogen. This, we are told, doesn’t really increase production of stem cells; rather it encourages them to leave the bone marrow where they normally hang out and go into the bloodstream (aka peripheral blood) so they can be harvested via apheresis.
Simple as that. Then I just sit back and wait to get better. E-Z when you’re a tough guy.
As I enter the next phase of treatment perhaps it’s a good time for a medical recap. Regular readers and the easily bored should skip to the end.
In January 2008 I went to the doctor about unexplained weight loss. After a CT scan and a subsequent lymph node biopsy I was diagnosed with follicular lymphoma, a type of non-Hodgkin lymphoma. It is relatively slow-growing and often not detected until it is in an advanced stage, as mine was. From February to May 2008 I was treated with a chemo regimen called R-CHOP. CHOP is a set of traditional anti-cancer agents. The R is for rituximab, a monoclonal antibody that is something of a wonder drug. I responded well to this treatment, with clear scans later in 2008. You don’t ever get back to normal after cancer treatment, but I felt OK.
In February 2009 I felt a lump on my jaw and knew that the lymphoma had come back. This was disappointing (one word for it) since I had been hoping to get a few symptom-free years from the R-CHOP treatment. Since my only symptom was slightly swollen nodes, we held off more treatment until the end of the year, when I moved to the Seattle Cancer Care Alliance (SCCA) for further care. You can read more details about this period in this post.
In January 2010 things got hairy as what eventually became a large tumor started growing on my forehead. Given the rather quick return of my symptoms more of the same chemo would not do much good, so the recommendation was to get a stem cell transplant (formally an autologous hematopoietic peripheral blood stem cell transplant), a specialty of SCCA. “Autologous” means that my own stem cells were harvested, then put back into me (the transplant) after my blood production system had been wiped out by heavy-duty chemo and irradiation. The idea is that the rebooted blood production system would be cancer-free. I started treatment (more rituximab plus some other stuff) in February 2010, and had the transplant May 26. I spent much of June in the hospital (an SCT is kind of a big deal) then rest of the summer coming back to something like normal. There are many posts from this period with blow by blow accounts.
I did return to something like normal life, but I was beset by fatigue and achiness. This is not unusual for SCT survivors, but my low blood numbers were a concern. In October 2010 I had an extensive workup that didn’t reveal anything obvious. Over time my health and energy stabilized, but I felt as though I had gone from age 56 to 66 in a few months. I have needed a large number of red blood transfusions (I’m getting blood as I type this) in the last couple of years.
Fast forward to January 2012, when after many medical adventures it was decided to expend some serious effort to figure out why my blood production has been so poor. The ensuing diagnosis was myelodysplastic syndrome (MDS), a “secondary” cancer that is almost certainly the result of the radiation and chemo I got with the SCT. The recommendation: another SCT, allogeneic this time, meaning someone else’s stem cells. I am remarkably lucky that my brother is a match for my HLA type, so he will be coming up to Seattle to be my stem cell donor (thanks, big guy).
So here I am, at day 1599 since my initial diagnosis, day 726 since my first transplant. Seems like yesterday. I will enter the transplant program again on May 30. My brother Mike will be by my side. We will both undergo a battery of tests to make sure we’re good to go. He will go home to LA, while my workup continues into June. Then he’ll come back to Seattle in mid-June, and be given a drug (Neupogen) to pump up his stem cell production. Meanwhile I’ll be getting chemo and radiation more or less like two years ago, though less intense (I hope). Then some time around June 21, the summer solstice, I’ll have yet another birthday (hmm, does that mean my 2010-reborn self is no longer with us?) with yet another blood system, this time my brother’s.
“This time for sure” as Bullwinkle used to say. If this
tricktreatment works, it will fix (“cure” maybe?) not only the MDS but the lymphoma. This will no doubt be at substantial cost. At the very least it will be another sucky summer; this makes three in a row. I may well be in the hospital for the Euro 2012 final (everyone’s betting on Spain but I think the Nederlanders may sneak by this time), which would be a bummer. I’ll miss a lot of work, but I’m hoping to get enough leave donations from kind and generous UW friends to get me through.
If it doesn’t work I guess I’ll need a new hat.
In any case I’ll do my best to keep everyone up to date.
Many good things have happened since I last posted, and I will get those reports done one of these days real soon now. But I know my target demographic, and you people are all here for the medical drama. So here is some for you.
We went in to SCCA today expecting lots of news. The prime item of interest was the result of the HLA typing on my brother (using his saliva, not his blood; how this works I have no idea) to see if he can be a donor for my upcoming allogeneic stem cell transplant. They said the results weren’t back yet but they would call (words I have heard before).
Next in line was the result of my CT scan from last Thursday. And that was: no evidence of any progression of lymphadenopathy; i.e., no visible malignant growth of lymph nodes. So yay, at least I don’t have to worry about lymphoma for the moment.
Lastly were my usual blood numbers. I have been feeling pretty good the last several days, relatively speaking. I had a couple of intense days at a conference in Silicon Valley; I rode my bike a few miles for the first time in a long time (I did have to walk up the hill to get home); I baked, somehow, the best baguettes I have ever made. So I figured my hematocrit would be 30ish at least. But no, it was 26, so I’m scheduled for another couple of units tomorrow. I guess I’m getting used to being bloodless. My platelet count was 135, which is the highest it has been in a year at least. Neutrophils not great but I’m not neutropenic.
Back down I went to blood draw for the type-and-hold for tomorrow’s transfusion. While waiting there I got a call from Dr. Scott, and he said: “we have the HLA results and your brother is a complete match.” Hooray! This means we can proceed directly to transplant; no waiting for further chemo (though I did start my week o’ shots today). It also confirms that Mike really is my brother, which I had been wondering about. As the typing page says, there is a 1-in-4 chance of a match with a sibling, so for once we beat the odds. I won’t have to wait for possibly many months finding an unrelated donor, and I guess the likelihood of graft vs host disease (GVHD) is much less with a sibling donor. It’s hard to get really excited about plunging directly into an allogeneic transplant, but given the situation it’s very good news.
I will get a call from the transplant office in a couple of days, and will know more then about schedule. I have heard that there are a number of options for prep for the transplant, so I suppose we will have to talk those over. But in any case I am now at the top of the ski jump, just about to tip over the edge and head down. Another wild ride ahead.
In my last substantive post I reported that I have been diagnosed with this new condition requiring a new doctor and new treatment (same SCCA though). Some mysteries were resolved (the source of my pancytopenia is the 5q deletion syndrome, a kind of MDS), and new ones emerged: what would the new chemo treatment be like, and most significantly, when would I start the process for the new allogeneic stem cell transplant? Here’s an update on those things, as of today.
On Friday March 2 I started on azacytidine treatment. This is delivered once a day for seven straight days, on a monthly cycle (i.e., three weeks off, then another week of treatment). It is given by injection, two shots in the belly, which is much less onerous than a multi-hour IV drip, but does lead to lots of soreness in the injection area, especially after a week’s worth of shots. I had some nausea, but much less than with previous chemos; a single Zofran took care of it. I have been working and living more or less normally throughout. I did have to miss a trip to DC for what would have been a fun workshop with all my identipals, but fortunately I was able to feel like I was there via Twitter.
The last blood test I had before treatment started showed that my numbers were up across the board (crit 34, platelet 100, white 2K), which is quite good. Perhaps my blood production is just now coming back from the clinical trial treatment that ended in December. After the first week of the new treatment (as of today, the Ides of March; happy birthday, Slim!) they are down again, which is, apparently, to be expected. Gotta break em down before you build em up, as my track coach used to say. After 4 monthly treatments or so we hope that the drug will have its good effects of killing the deformed cells and letting the good cells thrive, and my numbers will be back up again.
Today my crit was 24, which was especially obvious to me when I had to run to catch the bus and lay there in the seat gasping for breath for a couple of minutes afterward. This was while I was on the way to the clinic to get another couple of units of red cells, so problem solved. My neutropenia was also perhaps shown by events of last Monday evening, when I spent five hours throwing up (bad teriyaki as far as I can tell). I got some antibiotics and such for that too today.
But the big question (I hear you cry) is: when is this transplant supposed to happen? I love my docs, but they can be very eloquent about disease pathways and classification criteria without ever getting to the point of WHAT IS GOING TO HAPPEN WHEN. Today we had a good meet with the Physician’s Assistant, who explained that the plan is that I will have 6 cycles of the azacytidine, then a bone marrow biopsy to see what the effect has been, and if all is clean (hey, what could go wrong?) then proceed to do the transplant. This was something of a relief to hear, because we had been thinking it could be any day. So, now we know (in the cancer patient’s sense of “know”) it will be 5 months away minimum. This will allow lots of time to find a donor.
So now we have a fairly likely schedule for the next six months or so, which feels good, all things considered. Time to fly to Paris! Yes! Next week!