After another year, two maintenance cycles later, I was declared to be in remission. Lymphoma is one the the cancers that are currently considered incurable. That makes the number of “R” treatments 8 (initial 6, and extended 2, of the treatment cycles every three weeks) plus 16 (four maintenance cycles of weekly treatments for four weeks each) = 24. 24 infusions of Rituximab, not counting the other drugs in the first eight regular treatments, each costing about $6000. That’s $144,00. for just one drug! Add CT and PET scans, hospital stay, urologist office visits and procedures, oncologist office visits, labs and the other infusion drugs and procedures, and the original GP , surgeon and other consultations in the diagnosis. In a period of 2½ years I “spent” a fortune. I’m sure this earned the insurance premiums. But neither should be this high.
Anyway, that was the end of January, 2012. Since then, including a few other illnesses and conditions along the way, I’m now taking nine drugs (one in three doses) daily. By far most of these are an attempt to counter the side effects or conditions resulting from the chemo. They don’t entirely but I’d hate trying to do without.
I’m now nearing 4 years in remission. I get blood tests and oncologist visits every 6 months. My existence as a “cancer patient” has outlived the careers of some of my oncologists. I’m on my fourth not counting the director of the consulting practice partnership who was there for my initial hospital stay. I guess that’s a positive thing. Most of the support staff I’ve enjoyed seeing are still at the infusion center.
OK, Gross as it may be, and maybe that’s the reason I forgot to mention, I did finally and on schedule have the stent removed. Read back at the time of the decision to have the first one replaced rather than just removed and you’ll anticipate what follows. It was removed with minimal local pain “killer” administered in the form of a gel. Up the “path way” and pinched off with something akin to a hose clamp so it didn’t just leak out. Visualize a “wrestlers bridge” and you’ll see the position I took as they went after the stent with the tool with the camera and bright light. ‘Nuf said. It was over none-too-soon with success. End of blog entry and hopefully not to be repeated! Sweet dreams.
How time flies when you’re having fun!
OK, not so much fun but again I’ve neglected this. It’s been almost a year. That means I’ve been off the initial regimen of chemo and gone through two maintenance cycles of 5 months off, one month of weekly infusions. Not too bad. This one doesn’t effect me too much outside of joint pain. Last CT scan (or have I been calling them CAT scans? Don’t want to confuse you) was an improvement even with just the maintenance treatment. In a little while, after another of those Barium Sulfate “shakes” (two 450ml bottles) -yuch- I go for another scan. I feel good about it but always a little apprehensive.
I hope I’ll remember to update this.
Better than falling ON my behind.
OK, first, the removal of the catheter was almost painless, except mental damage done by the anxiety and the bizarre list of thoughts that went through my mind between the time I decided I HAD to do this and when I was finished. The design of this thing is odd but simple; a tube within a tube. One is the obvious path for urine from your biological, internal bladder to what can similarly be considered a bladder, outside your body. This one you then empty when “convenient”. The other tube is to inflate (with fluid, not air) a bulb at the end that keeps the whole thing (hole thing?) from sliding out. To remove you simply cut the inflating end, the fluid drains and you pull it out. Sounds simple, but not much thought effort can get in the way of this task. I stood there over the toilet for half of an hour before I could cut the tube end off. Cutting off that end and letting the fluid drain and the bulb deflate was the point of no return; once done there would be nothing to reliably keep the catheter in. Not to mention the juggling act of holding “everything” including the scissors. And once I started the steady pulling pressure? I didn’t want to stop and needed to change my grip but I was almost bent over double; the thing seemed just that long (I mean the catheter!). Finally the end came out but if it was as long as it seemed, I should have felt the inflated bulb at the back of my throat!
I started the most recent, and perhaps last, cycle of my chemo Wednesday. I’m scheduled for a PET (more detailed than conventional CT) scan in a couple of weeks preceeding my “normal” 3 week office visit. That will provide the most current and accurate status of my Lymphoma. The projection is that if (or when) I reach a state of remission I’ll then only be needing these tests at 3 month intervals (at least to start).
As if the “normal” cycle of medication and side effects aren’t bad enough, and they are I assure you, the situation due to the safe useful life of a ureter stent has to compound problems. The stent needs to be removed and replaced with a new one after about 6 months. It can collect “salts” and other minerals in the urine (like those that form kidney stones) and cause complications like more blockage or difficult removal. So I just had pre-op and surgery appointments for that procedure last Thursday and Friday.
To begin with, the pre-op went well; a urine sample (expected, since it is a Urologist I’m seeing) and an x-ray (equally obvious to sort of re-map the territory). What followed in the office was a bit more difficult. I was given options! The x-ray showed the main Lymphoma mass impacting my kidney had shrunk further, by a significant amount. Not gone but sufficiently reducing pressure on the ureter that it would probably allow normal drainage of the kidney if the stent was simply removed (Opt. #2). The original “plan” was to simply replace the stent (Opt. #1) which could be described as “the safe choice” as it left protection in place (in case the ureter was still too week or the mass to invasive despite the appearance in the x-ray). The situation surrounding the kidney performance would simply move unchanged to the “back burner” for as much as another 6 months if needed, as we continued to concentrate on the Lymphoma. An option #3 involved removing the stent and a quick test using a dye with tilting me toward an upright position while still under anesthesia. This would provide some idea of the condition of the drainage, but I’d be in no condition to consult on whether to replace or leave out the stent; defeating the attempt to involve “the patient” more in treatment decisions. Did I mention that simple removal, whenever it would be done to the “final” stent, would not be done under general anesthesia? For some reason I still don’t care for that one, no matter how inevitable it must be. Option #2 of course included the potential of future replacement if it was discovered (by whatever test result or other unhealthy condition should befall me) that it was necessary.
I selected the original, option #1. A new stent is in place.
The result is that I’m now also temporarily catheterized because they found some scaring, perhaps from the original procedure. There’s been some blood in my urine and swelling so they put in the catheter to effectively do the same for my urethra as the stent is doing for my right kidney ureter, though much more on a temporary need basis (I hope). I’m supposed to remove that myself!
Wow, I’ve been neglecting this blog. Sorry. I wish I had good reasons, even one good reason would be nice. It’s almost the end of my sixth cycle and my last entry was shortly after my fourth! Not much difference, cycle to cycle except the side effects seem to continue getting more intense. Nothing unpredicted, not sooner or longer, just “more”. I wonder sometimes whether it’s really getting worse or am I just more sensitive to it? Is it my anticipation that’s amplifying it? Does it matter?
The scan
I’d been wondering how they’d decide when I’d had enough. They scheduled a new CAT scan just before my sixth infusion. The test results would be back along with my periodic blood tests in time for my doctor’s appointment that I have the day before each chemo session. The idea with each blood test is to confirm that I’ve recovered well from the previous dose of the chemicals and that I’m ready for the next. If not, the dose can be adjusted.
At that time, the sixth treatment was supposed to be my “last” one. The CAT scan results changed that. There was good progress made, but not enough. I’m now scheduled for two more, with number 7 happening in a few days.
Christmas?
Since there hasn’t been any significant change in the way or timing of my body’s reaction to each treatment, I’m not very happy about this next cycle. Plans have been to spend the holidays with my extended “family” up here. I hope I’m up to it; December 25 will be right at the peak (or really depth) of the discomfort from the chemo. I expect that I won’t be very good company.
or is that few and far between?
Wow, it’s more than a week since the last session, my 4th. Filling in from my third, the sharp pains subsided as expected about 7 days after the infusion (after having lasted about 4 days again). But they were replaced by not only the earlier weakness near joints like my knees, but not-quite-sharp pain near the joints as well. When I flexed muscles the tendons at the joints hurt; the more force (like lifting rather than just moving) the greater the pain. Walking wasn’t too bad as it was usually just keeping my feet under me. Climbing stairs was worse. After about 2 weeks from the infusion date things were back to dull aches and the problem with my hands and, to some extent, feet.
Fourth cycle
Now, into the 4th cycle, things are getting worse. The sharp pains haven’t changed. The weakness at joints as well as the tendon pain is now in my arms and hands. Mostly the forearm, both wrist and elbow are having the problem. For a while it hurt to move my arms at all; the weight of my hands pulled the tendons. If I was trying to grip something, I might be able to hold it tight enough but lifting it would hurt enough I found myself dropping things in reaction. As the effects tapered off and the pain level lowered, I could lift things like a glass to my mouth but the odd movement to tilt it would hurt and require both hands to share the load. And oddly, the pain pills didn’t help that type of pain much, at least at the dosage level I’m prescribed.
Today there have been only a few motions that pulled muscles and tendons that were painful. Maybe tomorrow will be good enough I can get out for a break. With the extended leg pains I’ve not even been up the stairs to the office where my PC is. With the arm pain I’d not do well on the keyboard any way, so I’m short on work hours as well as any of my network means of social contacts too.
It’s a few days after my third cycle. About the same as the last one. Hand numbness continues and I was told a few days ago that my palms don’t feel like regular skin to someone elses touch either. Hadn’t thought about that since my own sense of touch is so off. Feet are getting that way too (numbness that is).
Chemo?
So I was asked what “chemo” actually is. You hear a lot more about radiation with cancer. Well, since lymphoma isn’t a hard tumor cancer but involved blood cells (at least mine does; the B-cells) you can’t aim at it. It just seems to collect in the lymph nodes or other organs. That’s why it can’t just be cut out either. So they use chemicals that attack the cells.
Here’s what I’m getting…
R-CVP
R = Rituximab,
… a monoclonal antibody. A type of protein made in the laboratory that can locate and bind to substances in the body, including tumor cells. There are many kinds of monoclonal antibodies. Each monoclonal antibody is made to find one substance.
I get this in IV through the port. If I remember right, it’s been mixed in a 1 liter bag of D5W (water & 5% dextrose). This is one of those “treatments” I mentioned that can’t tell the difference between good and bad cells and relies on the replacement of the lost good cells. But it does at least target the specific type of cell.
C = Cyclophosphamide,
… is used to treat various types of cancer and some autoimmune disorders. The main use of cyclophosphamide is together with other chemotherapy agents in the treatment of lymphomas, some forms of leukemia and some solid tumors. It is a chemotherapy drug that works by slowing or stopping cell growth. It is a “prodrug”; it is converted in the liver to active forms that have chemotherapeutic activity.
This is another IV “bag” but I don’t remember which one it was; not a big as the Rituximab though.
V = Vincristine,
… arrests cell division (mitosis) and affects all rapidly dividing cell types including cancer cells, but also intestinal epithelium and bone marrow.
This is the one with the digestive system side effects. I’m not suffering much from this though they’ve given me another drug for the nausea if I need it. Peripheral neuropathy, the hand and foot numbness, is one of it’s main side effects.
P = Prednisone,
… is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant, and affects virtually all of the immune system. It is used to treat certain inflammatory diseases and (at higher doses) cancers, but has significant adverse effects. Prednisone is a prodrug that is converted by the liver into prednisolone, which is the active drug and also a steroid.
This is a lot of pills daily for 5 days (5 each morning). Among it’s side effects are “mental confusion” and severe joint pain. Most everything else in the list I’m doing OK with so far.
or at least a cycle.
I’m in the last few days of the cycle, and the last week sees to have been fairly good. I’ve been to work (as in at the office rather than telecommuting) a number of days and though very tired, ended up feeling like I’d accomplished my goals for those days. That’s an important factor in a couple of ways. First it’s good to set reasonable goals. Hey, “they” are always telling us that, right? But when there are new limits, like easily being fatigued, this is the first way to avoid trouble. Didn’t Dirty Harry say something about knowing your limits? And second, with the number of negative things likely to be hitting home from time to time through this, having some successes as attitude boosts is significant even if the individual accomplishments aren’t. I’ve got a lot of support from my co-workers too, so it’s nice to be there.
Worst part of it getting close to the end of the cycle is trying to not think too much about it starting over again.
Cancer or tumors in general, cancerous or not, have been in evidence for ages. So have some pretty “advanced” treatments. While we may attribute it to an opening of a window through which the evil spirits escaped, it certainly looks like early surgeons opened skulls and removed brain tumors. I’ve heard that there are even fairly detailed accounts describing operations for the removal of problematic growths well into B.C. For some time the way we’ve dealt with cancers amounted to a simple two-pronged attack. Try to hack away at an unwanted, growing mass of tissue faster than it grows back while avoiding any tissue we can identify as necessary; and numb the increasing pain with the strongest herbs and medicines we can find. Enter the laudanum “cocktail”, the broad spectrum of opium (the seed resin) derived alkaloids dissolved in alcohol. You can’t get much more “herbal medicine” than that.
Now, the nature of cancer is odd to be sure and I’m going to over-simplify with out a doubt. it’s a growth of tissue that simply doesn’t belong where it is. It doesn’t belong in your body; it isn’t part of you or yours. The genetics are wrong. It used to be yours but the cells that make up that tissue are no longer the kind of cell they started as and they no longer perform the function they were intended to perform. At best they are just getting in the way and doing so at a growth rate that is causing problems for the cells they are displacing. At worst they are actually actively (and if you could attribute purpose, you might even say intentionally) doing harm attacking other cells. And this is just for a beginning. As if they are a rebellious rabble, they can seem to convince other peaceful hardworking tissues of completely different organs to join their cause. It’s not too difficult to accept the idea of a lung cancer spreading to “infect” other lung cells; but it spreads to other organs. And it’s not the same as a virus or bacteria which isn’t really changing but just growing into more cells. Cancer cells used to be each of those different types of tissue cells. I guess this is why cancers are such a medical challenge.
Now enter modern chemo and radiation treatments. While there’s still a great deal of hacking involved (but thankfully more understanding of what’s being hacked and increasing skill at doing so) in removing some cancers, they’ve added new treatments to the process. Both chemo and radiation therapy apply a similar theory to the intervention. Rather than treat “it” as a lump and try to remove it, not being sure you’ve got it all (meaning “them” all since we’re talking about cells) and compensating by removing “extra”. Kill them where they are. Kill them cell by cell.
But we’ve yet to be able to be that selective. Advances in chemo formulations are getting better but have limits when it comes to differentiating between non-cancerous and cancerous cells. Radiation treatments are improving, with things like precise placements of radioactive material or accurate aiming of narrower beams so that the treatment is restricted to smaller cancerous tissue areas. There’s a way to go yet though, before treatments can target only the “broken” cells. So the process still seems a bit backward.
More than the cancerous cells are eliminated; cut out, killed in place, whatever. Then additional treatment compensates for the direct reaction to that such as pain, nausea or anemia. And additional treatment improves the patients over-all condition to recover from the effects of the loss of the collateral damage such as the growth of new good cells. Add to this the fact that there are often other problems indirectly the result of the cancer growth, like what happens to an organ pinched or displaced by a tumor and this all gets VERY COMPLICATED.