Monday, September 26, 2011
...well, that was easy...
Okay, I probably feel a little whiffy--but in a good way (2 cups of tea). They made me walk to my surgery this a.m. and left me awake while they prepped. When I inquired about the anesthesia being similar to that used during my colonoscopy, the anesthetist quipped that he had much better drugs than the colon people do. I was awake when they ran their checklist (see A. Gawande: The Checklist Manifesto) then bye-bye. They awakened me during their clean up and back in recovery I was surprised to see that I had probably been out for only 30-40 minutes. No residual discomfort as yet but there is hydrocodone awaiting that eventuality. I was ravenous upon arriving home and made myself my usual french omelette with cheese, a fresh garden tomato and NM green chilies, accompanied by an Einstein's Everything bagel and a couple kinds of fruit.. It don't get no better. I report this detail, because it will probably be an interesting contrast with my forthcoming interest/disinterest in food after a few chemo sessions. A little r&r today, else what's retirement for?
Sunday, September 25, 2011
And the Side Effects Are...?
I get a good meal tonight and can drink fluids until midnight, then nothing before surgery. I mentioned my achalasia to the admitting RN at the pre-consult--not wanting to be without fluids for 18 or 20 hours if they scheduled me late in the day, tomorrow. She asked for an early time, et voila, I have to be at the Surgery Center at 6:30 a.m. I think blast off is 7:15 a.m. but there can be delays for emergencies and things, so they say to come prepared. Boy, am I prepared. My wife and daughter laid an IPOD Nano (8 gbs) on me for my bd and Lisa recorded a bunch of my CDs. While she claims that she went randomly, everything I see on there is worth revisiting. Then my sis-in-law gets me a pair of Skull Candy phones. (This is a Utah Co. gone big in earphones.) Those, a New Yorker and a good novel (see Wolf Hall by Hilary Mantel Winner of the Mann-Booker prize--the life of Thos Cromwell) and I can be there forever.
Tomorrow we are one week from Chemo....Time to elaborate a bit on effects and side effects.
1. Allopecia - a definite effect. I will lose all my hair. Going to take the bull by the horns here and next Thursday get buzzed--but not shaved--to approximate the final condition. Everyone says hair loss will start by the second cycle. This gives me a slight bit of additional control. I will lose my hair my own way! (Yes, on this very site, there will eventually be pix.)
2. Survivors have told me there can be mouth sores. Maybe changes in toothpaste are in store.
3. Tiredness - a definite effect. Maybe a pipe dream, but I am going to see if I can continue walking daily (?). Supposedly better outcomes if one stays in some sort of physical condition.
And, I'm also thinking about getting back to the dumbbells to see if it is possible to at least maintain some muscle tone. However, at this point I have no clue whether this can happen.
4. Nausea - quite a few friends, nameless of course, have suggested one search a source for some medical mary jane. From what can be gathered it is a very successful way to stimulate appetite (oh yeah!) as well as prevent nausea. The THC pills are apparently no where near as effective as a toke. (Jan read that cancer patients often die from malnutrition!)
In the article on R-CHOP with Velcade (note this is the correct spelling), the abstract says that they were able to manage "toxicity" and they note several potential side effects of this drug (another source is VELCADE: Questions to ask your doctor):
5. Neutropenia - low levels of a particular type white blood cell (infection fighters)--raised chance of infection; but also leukopenia (lower white blood cells in general)
6. Thrombocytopenia - low levels of platelets (blood clotters)--a chance of bleeding internally
7. Neuropathy - loss of feeling in the extremities (peripheral neuropathy)
8 Gastrointestinal problems - nausea, vomiting, diarrhea, constipation (oh shit)
9. Low blood pressure - since I am on a half a lisonopril daily for high blood pressure, I'd better ask about that. Interaction possibilities.
10. Heart problems - the stuff can worsen arythmias
11. Lung disorders - some have been fatal; report any shortness of breath (just typing this makes me short of breath).
12. Neuralgia - nerve pain
13. Pyrexia - high temperatures
OMG! as the Tweeters say. We are in for a long ride. More after surgery when I am capable.
Tomorrow we are one week from Chemo....Time to elaborate a bit on effects and side effects.
1. Allopecia - a definite effect. I will lose all my hair. Going to take the bull by the horns here and next Thursday get buzzed--but not shaved--to approximate the final condition. Everyone says hair loss will start by the second cycle. This gives me a slight bit of additional control. I will lose my hair my own way! (Yes, on this very site, there will eventually be pix.)
2. Survivors have told me there can be mouth sores. Maybe changes in toothpaste are in store.
3. Tiredness - a definite effect. Maybe a pipe dream, but I am going to see if I can continue walking daily (?). Supposedly better outcomes if one stays in some sort of physical condition.
And, I'm also thinking about getting back to the dumbbells to see if it is possible to at least maintain some muscle tone. However, at this point I have no clue whether this can happen.
4. Nausea - quite a few friends, nameless of course, have suggested one search a source for some medical mary jane. From what can be gathered it is a very successful way to stimulate appetite (oh yeah!) as well as prevent nausea. The THC pills are apparently no where near as effective as a toke. (Jan read that cancer patients often die from malnutrition!)
In the article on R-CHOP with Velcade (note this is the correct spelling), the abstract says that they were able to manage "toxicity" and they note several potential side effects of this drug (another source is VELCADE: Questions to ask your doctor):
5. Neutropenia - low levels of a particular type white blood cell (infection fighters)--raised chance of infection; but also leukopenia (lower white blood cells in general)
6. Thrombocytopenia - low levels of platelets (blood clotters)--a chance of bleeding internally
7. Neuropathy - loss of feeling in the extremities (peripheral neuropathy)
8 Gastrointestinal problems - nausea, vomiting, diarrhea, constipation (oh shit)
9. Low blood pressure - since I am on a half a lisonopril daily for high blood pressure, I'd better ask about that. Interaction possibilities.
10. Heart problems - the stuff can worsen arythmias
11. Lung disorders - some have been fatal; report any shortness of breath (just typing this makes me short of breath).
12. Neuralgia - nerve pain
13. Pyrexia - high temperatures
OMG! as the Tweeters say. We are in for a long ride. More after surgery when I am capable.
Friday, September 23, 2011
The Fun Continues...for Awhile.
This has been one of the fine weeks of my life. It started with an extended visit to Lake Powell with two sets of old friends. The first several days I spent on a houseboat owned by a former student, now colleague and dear friend. Four of us fished from our boats in the Bullfrog area for a couple days and had good success with smallmouth and an occasional largemouth bass. The food was excellent: from steaks a la bernaise with asparagus to Usher's ring bologna with sauerkraut to Grayson's bolognese ragu. (Jan also contributed 4 portions of Bon Ton's bread pudding with whiskey sauce for Grayson's dinner.) Then I met my usual fishing partner, who picked up my boat (with me waiting in it!) at a convenient highway junction and we fished the Hite area for the first time in 10 years. That was a sublime experience because it was absent the usual pleasure boaters. Fishing was a little tougher here because so much new ground is covered with water the fish have a lot of territory to hang out in. Highlight: just as we were quitting on the last day and the last hour, 100 yards from the take out, the striped bass began to attack the threadfin shad on the surface. This is known locally as a "boil". During their frenzy these bass will strike almost any shad like lure every time. It gives one a new appreciation for the feelings of our Indian natives to this country when they paired the repeating rifle with buffalo hunting. In a word, it is orgasmic. These fish were up and down fast and I got one, the last fish of the trip--a great memory since timing is everything on boils and I hadn't experienced one for a few years.
Lisa arrives tonight for the weekend and we will celebrate our two birthdays with some champagne in a couple hours and a wonderful dinner prepared by Jan (Rio Grande pork). Then tomorrow evening we go to a gourmet dinner served to people who won a bid for it during a local fund raiser of which we were a part. The purveyor is a local Cordon-Bleu chef who ran his own restaurant for years and is now a successful artisan baker.
Monday morning at 6:30 a.m. I present myself to the Surgical Center at the Budge Clinic for the placement of a port. This is a convenient device that will sit under the skin between the left delt and the clavicle. It is about the size of a half dozen quarters stacked. From it, a tube (a couple mms?) extends all the way to the superior vena cava, into which it will be placed. The port itself has three little pimples on it permitting the administrating nurses to locate it before each infusion. Problems with putting foreign objects into the body are clots, so I suspect I will be put on some sort of blood thinning regimen but that I don't yet know. The procedure will take about an hour with a break for pictures to make sure the tube has ended up in the correct location.
I am still thinking that I might feel good enough to play at the first Kicks rehearsal on Tuesday next, but must ask the surgeon whether blowing my horn will have any impact on the port. I expect not.
Counting down about 10 more days to chemo.
Lisa arrives tonight for the weekend and we will celebrate our two birthdays with some champagne in a couple hours and a wonderful dinner prepared by Jan (Rio Grande pork). Then tomorrow evening we go to a gourmet dinner served to people who won a bid for it during a local fund raiser of which we were a part. The purveyor is a local Cordon-Bleu chef who ran his own restaurant for years and is now a successful artisan baker.
Monday morning at 6:30 a.m. I present myself to the Surgical Center at the Budge Clinic for the placement of a port. This is a convenient device that will sit under the skin between the left delt and the clavicle. It is about the size of a half dozen quarters stacked. From it, a tube (a couple mms?) extends all the way to the superior vena cava, into which it will be placed. The port itself has three little pimples on it permitting the administrating nurses to locate it before each infusion. Problems with putting foreign objects into the body are clots, so I suspect I will be put on some sort of blood thinning regimen but that I don't yet know. The procedure will take about an hour with a break for pictures to make sure the tube has ended up in the correct location.
I am still thinking that I might feel good enough to play at the first Kicks rehearsal on Tuesday next, but must ask the surgeon whether blowing my horn will have any impact on the port. I expect not.
Counting down about 10 more days to chemo.
Tuesday, September 13, 2011
September 13, 2011
Pretty much packed and ready to boogie outta here. Just shopping for victuals tomorrow as my sojourn will take place first on a houseboat out of Halls Crossing Marina on Lake Powell. At this time I don't know where, if anywhere, our destination on the lake will be. Hopefully up-lake (NE) because that is where the good fishing has been. I have to prepare one evening meal. It will be spaghetti with my home-made (last week!) bolognese sauce and a lettuce-wedge salad for four. After spending several days on the houseboat I will meet my usual fishing partner at the turnoff to Lake Powell (Bullfrog) and he will hook up my boat and we will spend another several days at the far NE end of the lake (Hite). Since we will be staying in the so called family units at Hite--actually double-wide trailers--we will be cooking there as well. What we eat will be determined by shopping tomorrow.
All that aside, I had a nice return call from AbJ today. Seems we may be getting on a first-name basis, which is the way I like to be treated. I had a couple specific questions for him. Should I get a flu shot? Answer yes, but not necessary to do so before chemo starts. The R-CHOP is apparently focused enough that it will not kill the antibodies eventually produced by the shot. I also wanted to find out a bit more about what to expect about chemo. This is where the news isn't so good. By agreement we will commence the chemotherapy on Monday Oct. 3. This permits me to have a birthday celebration with my daughter--mine is
Sept. 25, hers is Sept. 27 as was her maternal grandmother's. And 21 years ago this Sept. 27 her sister died (was killed!) in an automobile accident. So the last week of Sept. is a huge family time. It also permits me to get in the first fall rehearsal (Sept. 27) (and more) for the Jazz Kicks Band. Our fearless leader, Larry Smith, has spent all summer dredging up Horace Silver tunes from the university's band library for us to play and has come up with some of his own arrangements as well. I don't know what kind of physical shape I will be in come concert time (usually first week of Dec.) but I am going to play it like I will be there. Apparently there is some solo work for me, heightening interest. Horace Silver wrote some real post bop classics as will as some dynamite funk tunes, so it will a blast to play that music and the band will roar.
Now the not so-good stuff: first chemo session will be all of six hours! And the effects are delayed. Another good friend who has suffered through this same ordeal hipped me to the long infusion times and this latter event as well. Apparently the bod doesn't know right away that it is being poisoned, so the effects of the infusion are often not felt for about 48 hours, and then one of the side effects can be nausea and vomiting as well as the tiredness. On the bright side, that will mean that I definitely will be able to make the Oct 4 rehearsal of the band as well. Fun will be taken where possible! However, the Valcade administration is faster, as are subsequent R-CHOP administrations, maybe only 90 minutes or so. What I forgot to ask was whether we do CAT scans to determine progress after 3 cycles or not.
Well, off to catch the wily striped bass, the wilier small-mouthed bass, the even wilier large mouthed bass, and the most wily walleye pike. Back at this stand in a week or so.
All that aside, I had a nice return call from AbJ today. Seems we may be getting on a first-name basis, which is the way I like to be treated. I had a couple specific questions for him. Should I get a flu shot? Answer yes, but not necessary to do so before chemo starts. The R-CHOP is apparently focused enough that it will not kill the antibodies eventually produced by the shot. I also wanted to find out a bit more about what to expect about chemo. This is where the news isn't so good. By agreement we will commence the chemotherapy on Monday Oct. 3. This permits me to have a birthday celebration with my daughter--mine is
Sept. 25, hers is Sept. 27 as was her maternal grandmother's. And 21 years ago this Sept. 27 her sister died (was killed!) in an automobile accident. So the last week of Sept. is a huge family time. It also permits me to get in the first fall rehearsal (Sept. 27) (and more) for the Jazz Kicks Band. Our fearless leader, Larry Smith, has spent all summer dredging up Horace Silver tunes from the university's band library for us to play and has come up with some of his own arrangements as well. I don't know what kind of physical shape I will be in come concert time (usually first week of Dec.) but I am going to play it like I will be there. Apparently there is some solo work for me, heightening interest. Horace Silver wrote some real post bop classics as will as some dynamite funk tunes, so it will a blast to play that music and the band will roar.
Now the not so-good stuff: first chemo session will be all of six hours! And the effects are delayed. Another good friend who has suffered through this same ordeal hipped me to the long infusion times and this latter event as well. Apparently the bod doesn't know right away that it is being poisoned, so the effects of the infusion are often not felt for about 48 hours, and then one of the side effects can be nausea and vomiting as well as the tiredness. On the bright side, that will mean that I definitely will be able to make the Oct 4 rehearsal of the band as well. Fun will be taken where possible! However, the Valcade administration is faster, as are subsequent R-CHOP administrations, maybe only 90 minutes or so. What I forgot to ask was whether we do CAT scans to determine progress after 3 cycles or not.
Well, off to catch the wily striped bass, the wilier small-mouthed bass, the even wilier large mouthed bass, and the most wily walleye pike. Back at this stand in a week or so.
Monday, September 12, 2011
September 12, 2011
Every day, denial lessens. Today I had a pre-portal placement surgical consult. Seems that in order to get the poisons effectively into one's bod, it is necessary to place a port. This is a little high-tech plastic device, no bigger than 0.5" in circumference, that will sit under my skin, under my clavicle. It has three little plastic pimples on it, so that the onc nurses can feel where it is so that when they drive in a needle subcutaneously they are in the right locale. It has about a foot of tubing that ends up in the superior vena cava. The surgeon can't immediately see where he has put the tubing so we will have to go for a picture and adjust as necessary. The surgeon, Bart Weiss, and I are old acquaintances and the gallows humor flows from our lips. He did a prior inguinal hernia for me and we met under interesting circumstances probably more than 30 years ago. It was for a promo video about Cache Valley to be used for tourist purposes. They were interviewing movers and shakers and he and his wife were invited. Jan and I went but I think were there under false pretenses, since we weren't moving or shaking anything. Anyhow, some invitee didn't show up, so we were interviewed, too. We had nice things to say about living here and they must have been true because the Weiss's and the Osborne's are all still here. Anyway, the surgery is scheduled for September 26 and will take about an hour or so. Probably same kind of anesthesia as the colonoscopy--which they don't call a general anesthesia, I am not sure why--which is consciousness deadening. I don't see how that differentiates it. I ask Bart how long before chemo should the port be placed and he laughs and says, maybe 10 minutes. Possible difficulties: he has had 3 collapsed lungs in over 30 years of doing these since some lungs can get up under the clavicle but not to worry, he can fix that too! I ask about trumpet players lungs and he laughs. And then the usual about foreign bodies and the possibility of throwing a clot. I have to repeat blood panels already done since they must be done less than 2 weeks before surgery but escape another ECG. What a savings!
The Celebrate America gig concluded on Saturday evening and the band had a good night. I have decided I will start unloading my motley collection of trumpets, but I have something devious in mind. Sunday was a good day of decompression from the gig and today even more so. I am looking forward to getting out of here Wednesday and getting a line in the water.
The Celebrate America gig concluded on Saturday evening and the band had a good night. I have decided I will start unloading my motley collection of trumpets, but I have something devious in mind. Sunday was a good day of decompression from the gig and today even more so. I am looking forward to getting out of here Wednesday and getting a line in the water.
Friday, September 9, 2011
September 9, 2011
Each day I learn a bit more. Apparently what awaits me during chemo depends upon me being heart healthy. Thus, today was ECG day. The ECG tech was positive: a little normal leakage around the three major valves he looked at. He said he had to look pretty hard to discover it in each case. This probably means that chemo will proceed with R-CHOP and Velcade (more below). I thank my numerous friends who wanted to play handball, tennis, cross-country ski and hike and my wife who is provoking me to walk every morning.
As I was leaving Cardiology and heading back through Imaging to my car I came across JMcR, one of my jam group buddies. Ah, small town living. Nothing is secret. He was gowned and being wheeled for tests. Not good to see. McR is a former Boston policeman with many miles on his legs. He has rediscovered his childhood love for playing the clarinet and for singing. He has a marvelous tenor voice--almost sweet. He presented with pneumonia (informed the jam group via email) but in looking for causes today he mentioned hepatitis. We were in an area in which construction was occurring so it was hard for us to communicate, but I was struck by the fact that he was muddled and couldn't find the words for what was wrong with him. Perhaps he was confused because we were outside all of our normal contexts. We have seen some of this during our jams, but the wine flows and it is easy to toss this off since we are all of an age in this group. I really hope he comes out of this well. He seems to have had continuing problems this past year and I worry about him.
Last night was pretty successful. As is usually the case we all work out what little things we are missing in the show as we go along, so that the band sounded good. Conductor mistakes were limited as were cast errors. (The prior evening one singer--forgetting the late insertion of a repeat--came into her song 8 bars too early!) And the band finally is appropriately mixed and fed back to. We can actually hear our colleagues who are way across the stage from us. The sheer length of the show (90 minutes) restricts the amount of dance music we have to do. So I managed to get through it all even getting off a couple rides, one on Corner Pocket and the other on Tuxedo Junction. Fun time. But the exertion is such that I am light-headed when I get home from the adrenalin. Cooling it out today to get through tonight.
Okay time for nuts and bolts:
1. R-CHOP or CHOP-R is a common chemotherapy for B-cell lymphomas. It consists of:
R = Rituximab = an antibody against a specific protein found on the surface of B cells. It destroys both normal and malignant B cells; C = Cyclophosamide = a DNA altering agent; H = Hydroxydaunorubicin = also a DNA alterer; O = Oncovin which prevents cells from duplicating; P = Prednisone = a pretty commonly used steroid.
2. Velcade = Bortezomib = a proteasome inhibitor (?)
I am to get this stuff on a 21-day cycle called CHOP-21:
Day 1 = R-CHOP + Velcade
Day 4 = Velcade
Day 21 = get ready to do it again tomorrow
There are to be 6 cycles of this 21-day regimen, which, if it all starts at the beginning of October, means involvement until mid-January 2012. There goes my neighborhood! I read that usually another CAT scan is run after 3 cycles to determine progress. Immediately I want to know if AbJ does this, and if there are no further clinical signs the remainder of the treatment is aborted. Wouldn't that be nice? I won't count on it. However this is likely to screw up the future in the following ways: Will I be able to make all the Jazz Kicks rehearsals in the fall plus the Dec concert? Will I be able to help my wife and daughter as the latter gets surgery in late Nov? And will we be able to get out of Dodge to Phoenix for some weeks in the winter? I guess it will be per usual: one day at a time.
As I was leaving Cardiology and heading back through Imaging to my car I came across JMcR, one of my jam group buddies. Ah, small town living. Nothing is secret. He was gowned and being wheeled for tests. Not good to see. McR is a former Boston policeman with many miles on his legs. He has rediscovered his childhood love for playing the clarinet and for singing. He has a marvelous tenor voice--almost sweet. He presented with pneumonia (informed the jam group via email) but in looking for causes today he mentioned hepatitis. We were in an area in which construction was occurring so it was hard for us to communicate, but I was struck by the fact that he was muddled and couldn't find the words for what was wrong with him. Perhaps he was confused because we were outside all of our normal contexts. We have seen some of this during our jams, but the wine flows and it is easy to toss this off since we are all of an age in this group. I really hope he comes out of this well. He seems to have had continuing problems this past year and I worry about him.
Last night was pretty successful. As is usually the case we all work out what little things we are missing in the show as we go along, so that the band sounded good. Conductor mistakes were limited as were cast errors. (The prior evening one singer--forgetting the late insertion of a repeat--came into her song 8 bars too early!) And the band finally is appropriately mixed and fed back to. We can actually hear our colleagues who are way across the stage from us. The sheer length of the show (90 minutes) restricts the amount of dance music we have to do. So I managed to get through it all even getting off a couple rides, one on Corner Pocket and the other on Tuxedo Junction. Fun time. But the exertion is such that I am light-headed when I get home from the adrenalin. Cooling it out today to get through tonight.
Okay time for nuts and bolts:
1. R-CHOP or CHOP-R is a common chemotherapy for B-cell lymphomas. It consists of:
R = Rituximab = an antibody against a specific protein found on the surface of B cells. It destroys both normal and malignant B cells; C = Cyclophosamide = a DNA altering agent; H = Hydroxydaunorubicin = also a DNA alterer; O = Oncovin which prevents cells from duplicating; P = Prednisone = a pretty commonly used steroid.
2. Velcade = Bortezomib = a proteasome inhibitor (?)
I am to get this stuff on a 21-day cycle called CHOP-21:
Day 1 = R-CHOP + Velcade
Day 4 = Velcade
Day 21 = get ready to do it again tomorrow
There are to be 6 cycles of this 21-day regimen, which, if it all starts at the beginning of October, means involvement until mid-January 2012. There goes my neighborhood! I read that usually another CAT scan is run after 3 cycles to determine progress. Immediately I want to know if AbJ does this, and if there are no further clinical signs the remainder of the treatment is aborted. Wouldn't that be nice? I won't count on it. However this is likely to screw up the future in the following ways: Will I be able to make all the Jazz Kicks rehearsals in the fall plus the Dec concert? Will I be able to help my wife and daughter as the latter gets surgery in late Nov? And will we be able to get out of Dodge to Phoenix for some weeks in the winter? I guess it will be per usual: one day at a time.
Thursday, September 8, 2011
September 8, 2011
Reality begins to set in. Consultation today with Ali ben Jacob (AbJ) my onc doc in re my bone marrow stick.
Actually, I have had a fabulous several days. My hard practicing regime this summer appears to be paying off. I am getting through the show, and last night, we did one dance set, in addition. The damn show is about 95 minutes. That's a lot of blowing. But my chops appear to be holding, and there is that nightly thrill when the audience goes crazy after we nail Sing, Sing, Sing. Of course, I am juiced when I get home, so going to bed relatively early is problematic. Last night it was midnight. Tonight, which will contain the show and two sets of dancing, sets the scene for the rest of the week. Apparently the show is sold out through Saturday evening. So: still a-symptomatic and life quality is good. However, that is likely to change, and fairly soon.
To review: we are dealing with Mantle Cell Lymphoma (MCL) a rare, non-Hodgkins type lymphoma (NHL), which has in its sneaky little way invaded my intestine and my bone marrow, just slightly in the latter case. "Just slightly" means that of the cells sampled in my bone marrow, less than 5% are Mantle cells. "Just slightly" so happens to qualify me as a Stage IV--the highest (worst)--cancer patient. Not good. This means chemotherapy soon.
Before that, a couple other events have to happen. First, I must undergo an electro-cardiogram (ECG) to determine heart function. Ali ben Jacob has in mind a treatment, one side effect of which is cardio-toxic. So, they'd like one to be heart healthy to tolerate said treatment. Said treatment can cause cardiomyopathy, from which, I believe, my youngest brother may have expired, but then he was obese (300+ lbs), a non-exerciser, and a perennial dope smoker. Second, I must have a port placed in my upper chest so that they can more effectively drip the poisons into my bod. The former happens tomorrow, the latter--a preliminary consultation--is next week, but they will not place the port until I return from catching a lot of striped bass at Lake Powell next week. So probable port placement last week of Sept and probable treatment start the first of Oct.
Now, as to treatment. AbJ is going to follow a set of protocols that seem promising, published by a clinical trials group at Cornell (Ruan et al. J Clin Oncol., 2011, 29(6), 690). To reiterate: MCL has been identified perhaps as recently as 10-15 years ago. It is a 6% fraction of all NHLs. AbJ says only a few hundred cases are identified each year, nationally. (Jan says she knew from the beginning how rare I was.) Therefore, there are no agreed upon protocols. In fact, the field is split on treatment: very aggressive (kill the immune system totally-without, if possible, killing the patient--and replace stem cells to start over). One of AbJ's diagnosed patients apparently opted for this at Huntsman Cancer Center which is where he went for a second opinion and eventual treatment. Outcome is unknown in this case. Or, treat more as indolent. The Cornell group has opted for a more middle road. Treat as indolent but add a kicker. So I am going to get something called R-CHOP with the kicker being something called Bortezomib (Valcade). (More on all of this for those who care (me!) later as I try to digest what I've learned so far.)
I will get six 21-day cycles: R-CHOP with Valcade on Day 1; Valcade on Day 4; and 17 days to get better until repeating this. There goes the fall and part of the winter. I ask how sick will I be. He says, you will lose your hair. I say it's mostly all gone anyway. Other than that, they will make me feel bad, but perhaps not nauseous (there are pills for that). The really bad side effects we'll save for later.
A couple other answers to questions I asked:
1. I am a-symptomatic now; untreated, how long until symptoms? Ans: 3 months (Symptoms are night sweats, fever, and weight loss.) Better to wait until symptoms appear? No!
2. What course? Well, it is a disease of remission and relapse, repeated remission and relapse.
3. Average time from remission to relapse? No data. Probably depends on the individual and the initial presentation.
Enough for now: I have a bunch to read up on: the poisons; the treatment; what the fish at Lake Powell want; how much gin to take, etc.
Actually, I have had a fabulous several days. My hard practicing regime this summer appears to be paying off. I am getting through the show, and last night, we did one dance set, in addition. The damn show is about 95 minutes. That's a lot of blowing. But my chops appear to be holding, and there is that nightly thrill when the audience goes crazy after we nail Sing, Sing, Sing. Of course, I am juiced when I get home, so going to bed relatively early is problematic. Last night it was midnight. Tonight, which will contain the show and two sets of dancing, sets the scene for the rest of the week. Apparently the show is sold out through Saturday evening. So: still a-symptomatic and life quality is good. However, that is likely to change, and fairly soon.
To review: we are dealing with Mantle Cell Lymphoma (MCL) a rare, non-Hodgkins type lymphoma (NHL), which has in its sneaky little way invaded my intestine and my bone marrow, just slightly in the latter case. "Just slightly" means that of the cells sampled in my bone marrow, less than 5% are Mantle cells. "Just slightly" so happens to qualify me as a Stage IV--the highest (worst)--cancer patient. Not good. This means chemotherapy soon.
Before that, a couple other events have to happen. First, I must undergo an electro-cardiogram (ECG) to determine heart function. Ali ben Jacob has in mind a treatment, one side effect of which is cardio-toxic. So, they'd like one to be heart healthy to tolerate said treatment. Said treatment can cause cardiomyopathy, from which, I believe, my youngest brother may have expired, but then he was obese (300+ lbs), a non-exerciser, and a perennial dope smoker. Second, I must have a port placed in my upper chest so that they can more effectively drip the poisons into my bod. The former happens tomorrow, the latter--a preliminary consultation--is next week, but they will not place the port until I return from catching a lot of striped bass at Lake Powell next week. So probable port placement last week of Sept and probable treatment start the first of Oct.
Now, as to treatment. AbJ is going to follow a set of protocols that seem promising, published by a clinical trials group at Cornell (Ruan et al. J Clin Oncol., 2011, 29(6), 690). To reiterate: MCL has been identified perhaps as recently as 10-15 years ago. It is a 6% fraction of all NHLs. AbJ says only a few hundred cases are identified each year, nationally. (Jan says she knew from the beginning how rare I was.) Therefore, there are no agreed upon protocols. In fact, the field is split on treatment: very aggressive (kill the immune system totally-without, if possible, killing the patient--and replace stem cells to start over). One of AbJ's diagnosed patients apparently opted for this at Huntsman Cancer Center which is where he went for a second opinion and eventual treatment. Outcome is unknown in this case. Or, treat more as indolent. The Cornell group has opted for a more middle road. Treat as indolent but add a kicker. So I am going to get something called R-CHOP with the kicker being something called Bortezomib (Valcade). (More on all of this for those who care (me!) later as I try to digest what I've learned so far.)
I will get six 21-day cycles: R-CHOP with Valcade on Day 1; Valcade on Day 4; and 17 days to get better until repeating this. There goes the fall and part of the winter. I ask how sick will I be. He says, you will lose your hair. I say it's mostly all gone anyway. Other than that, they will make me feel bad, but perhaps not nauseous (there are pills for that). The really bad side effects we'll save for later.
A couple other answers to questions I asked:
1. I am a-symptomatic now; untreated, how long until symptoms? Ans: 3 months (Symptoms are night sweats, fever, and weight loss.) Better to wait until symptoms appear? No!
2. What course? Well, it is a disease of remission and relapse, repeated remission and relapse.
3. Average time from remission to relapse? No data. Probably depends on the individual and the initial presentation.
Enough for now: I have a bunch to read up on: the poisons; the treatment; what the fish at Lake Powell want; how much gin to take, etc.
Saturday, September 3, 2011
September 3, 2011 (later)
Oh me of little faith. The path report for the bone marrow stick is on my health web site. Why should I have worried about that? The news is mixed. One assay shows everything normal, a second that MCL cells are present, but at less than 5%. This may be the lower limit of this test so one wonders about false positives (hope again springing). Anyway, given the validity of this assay I must assume that my marrow is being compromised as I type this. Stay tuned.
September 3, 2011
Full rehearsal of the Celebrate America show last night. I am always impressed by the number of good, young dancers and singers who give their whole summer to rehearsing a major endeavor like this. Invariably they are so grateful that now they can hear a live band roar behind them rather than just the rehearsal piano that they’ve had all summer. Their joie de vive is infectious. Some of the music is kicking our butts however, with a 3-hour rehearsal this afternoon we’ll sort out the rough bits. When I get home I am too wired to sleep, so I read for a half hour. This morning my chops are all swollen. I may have to medicate and maybe ice a little before today’s rehearsal.
Our section leader’s wife has just entered the system in a larger way than me. Headaches and other symptoms led to the location of a mass behind her nose. The surgery couldn’t get all of the tumor since it apparently involved the pituitary gland, so she will have to undergo focused radiation treatment in addition. Poor lady. There is always someone worse off than yourself. The fact that I am symptom free is astonishing to me. With the absence of abnormal readings on the LDH assay I once again hold out hope that we have spotted this thing at the absolute beginning and that it can be beaten because of that. But I am ready if the marrow shows up bad. Still waiting on that report. It hasn’t shown up on my health site. AbJ not forwarding everything to Mike Stones???
Recent contact with two friends both with different cancer diagnoses and both presenting initially at Stage IV. Both are alive and well and leading relatively normal lives. Not to say they haven’t had rough spells of treatment, but it is nice to see that they are upbeat and pretty healthy.
Our section leader’s wife has just entered the system in a larger way than me. Headaches and other symptoms led to the location of a mass behind her nose. The surgery couldn’t get all of the tumor since it apparently involved the pituitary gland, so she will have to undergo focused radiation treatment in addition. Poor lady. There is always someone worse off than yourself. The fact that I am symptom free is astonishing to me. With the absence of abnormal readings on the LDH assay I once again hold out hope that we have spotted this thing at the absolute beginning and that it can be beaten because of that. But I am ready if the marrow shows up bad. Still waiting on that report. It hasn’t shown up on my health site. AbJ not forwarding everything to Mike Stones???
Recent contact with two friends both with different cancer diagnoses and both presenting initially at Stage IV. Both are alive and well and leading relatively normal lives. Not to say they haven’t had rough spells of treatment, but it is nice to see that they are upbeat and pretty healthy.
September 1, 2011
My parents were wed on this day in 1936 and two years and a few days later there I was. Time to review the Wiki page on MCL and see what I am repressing.
1. It is rare, we’ve established that.
2. 5-yr survival rate is 50% (generally) and 70% (early stage). The latter is hopeful. Insofar as I remember my grandfathers all lived to their mid-to-late 70s. Right now, I’ll bargain for that.
3. Diagnosis: frequent involvement of GI tract (that’s me) and marrow (uh oh: don’t yet know if that’s me).
3. Prognosis is problematic since most individuals present with late stage MCL (perhaps not me). Accordingly, staging is not too informative since malignant B cells can travel freely thru the lymphatic system. This means that most cases start with a III or IV stage diagnosis. Not good.
4. There are a variety of cell types that they scrutinize that may relate to survivability. Ergo the most recent blood draw.
a. Blastic or blastoid. These babies aren’t good. They are big cancer cells and tend to indicate aggressiveness
b. low Ki-67 (?) Relates to higher survival rates
c. LDH (?) Which is released because of tumor build up or cell breakdown. Pretty sure that AbJ mentioned this as a part of the new assay. (Yep and my results are normal!)
d. As yet there is no agreed upon treatment. Very bad news. I worry about docs flying by the seats of their pants.
Enough. I cannot process any more at this time.
1. It is rare, we’ve established that.
2. 5-yr survival rate is 50% (generally) and 70% (early stage). The latter is hopeful. Insofar as I remember my grandfathers all lived to their mid-to-late 70s. Right now, I’ll bargain for that.
3. Diagnosis: frequent involvement of GI tract (that’s me) and marrow (uh oh: don’t yet know if that’s me).
3. Prognosis is problematic since most individuals present with late stage MCL (perhaps not me). Accordingly, staging is not too informative since malignant B cells can travel freely thru the lymphatic system. This means that most cases start with a III or IV stage diagnosis. Not good.
4. There are a variety of cell types that they scrutinize that may relate to survivability. Ergo the most recent blood draw.
a. Blastic or blastoid. These babies aren’t good. They are big cancer cells and tend to indicate aggressiveness
b. low Ki-67 (?) Relates to higher survival rates
c. LDH (?) Which is released because of tumor build up or cell breakdown. Pretty sure that AbJ mentioned this as a part of the new assay. (Yep and my results are normal!)
d. As yet there is no agreed upon treatment. Very bad news. I worry about docs flying by the seats of their pants.
Enough. I cannot process any more at this time.
August 31, 2011
My first (and last?) bone marrow draw. Nasty little procedure. When AbJ drills into my pelvis on my lower back the numbing of the lydocaine initial sticks is not sufficient, but then it probably cannot be. The initial aspiration is one of those unique–and not pleasant–little sensations of something happening inside your body that you have never felt before, like when Bob Stephenson removed the abdominal shunt after my prostatectomy. Then the second drill to gain some actual marrow tissue. It is all over pretty quickly and I am sweaty from guarding against the pain.
During the procedure I ask–redirecting my head away from what he is up to–about the SLC assays. Yes, they are in. What cell is it? It is a Mantle cell. So I have Mantle Cell lymphona (MCL). I ask about aggressive/non aggressive, etc. He says it is a hybrid, some characteristics of each. My head immediately wants to know which of which. Apparently it is quite rare, only 6% of NHL. A little black cloud enters the environment.
Wicki has a good (?) page on MCL. Only 15,000 cases in the USA. Fairly new. Uh oh. They don’t yet know what they are doing? Well, apparently they do. The survival data are not so good. This is at least in part because it is often not identified early. 3-5 years is the median. Most recent cases the median is 6 years. Therapy is often chemo, chemo combined with radiology, and stem cell. Stem cell? Sounds like last resort stuff. The page says that since MCL is so little known its carriers often opt for experimental trials.
One decent ray: AbJ has 3 living (!) MCL patients in his practice. I joke about maybe the valley heading toward a cancer cluster. Gallows humor. Treatment for this one is likely to be more extreme than I had hoped.
They draw more blood. What? I say too many sticks. But this is a new panel. Now they need to identify what cells are present in the blood that relate to MCL. There are some MCL cells that are very aggressive and they want to find out the numbers of those things. Still staging. The possibility exists also of a future PET scan, if the insurance gurus approve. PET is used in MCL cases because it is a better locator than CAT. We have a travelling (Trailer) lab that visits the valley every couple weeks and will be back Sept. 12.
But for now on with life for a few days. I think we get together with AbJ to discuss the assay results and the results of the bone marrow the first of next week. Until then life can go back to a semblance of normal. Jan and I go out to lunch. Yea.
During the procedure I ask–redirecting my head away from what he is up to–about the SLC assays. Yes, they are in. What cell is it? It is a Mantle cell. So I have Mantle Cell lymphona (MCL). I ask about aggressive/non aggressive, etc. He says it is a hybrid, some characteristics of each. My head immediately wants to know which of which. Apparently it is quite rare, only 6% of NHL. A little black cloud enters the environment.
Wicki has a good (?) page on MCL. Only 15,000 cases in the USA. Fairly new. Uh oh. They don’t yet know what they are doing? Well, apparently they do. The survival data are not so good. This is at least in part because it is often not identified early. 3-5 years is the median. Most recent cases the median is 6 years. Therapy is often chemo, chemo combined with radiology, and stem cell. Stem cell? Sounds like last resort stuff. The page says that since MCL is so little known its carriers often opt for experimental trials.
One decent ray: AbJ has 3 living (!) MCL patients in his practice. I joke about maybe the valley heading toward a cancer cluster. Gallows humor. Treatment for this one is likely to be more extreme than I had hoped.
They draw more blood. What? I say too many sticks. But this is a new panel. Now they need to identify what cells are present in the blood that relate to MCL. There are some MCL cells that are very aggressive and they want to find out the numbers of those things. Still staging. The possibility exists also of a future PET scan, if the insurance gurus approve. PET is used in MCL cases because it is a better locator than CAT. We have a travelling (Trailer) lab that visits the valley every couple weeks and will be back Sept. 12.
But for now on with life for a few days. I think we get together with AbJ to discuss the assay results and the results of the bone marrow the first of next week. Until then life can go back to a semblance of normal. Jan and I go out to lunch. Yea.
August 30, 2011
My second CAT scan. No prep! Everything normal north of the abdomen. Yea! Of course, there is the usual old age bs–some calcification of coronary arteries but the aortas look good. If I can beat the big C maybe I have a few years left.
August 29, 2011
Great weekend. Lisa up by Friday eve and we did Callaway’s for spaghetti and meatballs and a glass of stout. Appetite is roaringly good. And the old GI comes back on line after all that fasting–damn that colonoscopy prep!–and the barium shakes. Saturday, Mike Stones calls. He is obviously in the office reading reports and sees that I have entered the health system in a big way. He is so empathic. Of course, we have a 30-year relationship. (He has had his finger in my ass, more than any other living being.) Today we meet with the oncology doc. Mike has said that they will “stage” me now. What this means is that they will focus on where in the body the cancer lies (and importantly where it doesn’t) to determine where I am on their 4 point scale. So the Monday meet and greet. Ali ben Jacob, the onc doc, is an interesting character. Kind of hard to read, but soon we are laughing in his office. He is upbeat about a NHL diagnosis. We agree to return Wed for a bone marrow stick. Tuesday is another CAT scan. Still no data from the assays being completed in SLC at the molecular level. AbJ wants to identify precisely what kind of abnormal NHL cell we are looking at. Treatment depends on this identification.
August 26, 2011
Second prep in a row. Half a barium shake at 10 p.m. the night before, and three more halves starting at 4 a.m. I remember these things from when I was diagnosed with achalasia. The taste (banana) and consistency today is much improved. Still not my idea of a great drink. All is tempered by the fact that I was able to eat a real meal last night. That damn colonoscopy prep.
You gotta love a small town. When we arrive in the emergency/imaging area of the hospital (7 a.m.) there is almost no one there! Beautiful! Again with the IDs and the Medicard and Medigap cards, and the info sheet. What waste there is in this system! The tech is momentarily delayed with an emergency case. I am thinking, “....some poor devil.” Then I am on the gurney and they shoot in the ink. Interesting validation of warm in the throat and then warm all over as they prepped me about this. Just as quickly we are gone and home.
I am able to read the CAT scan report as it is sent to our GP, Mike Stones, on my personal health web site later that afternoon. Except for the validation of the mass in the cecum the lower abdomen is normal. Great to read that all the organs are “unremarkable”. Tech asked me on the table this morning, “You had a prostatectomy?” I say, “Yeah, 8 years ago. You can see its absence?” He says, “I can see the sutures. Those guys have a particular way of closing up.”
So this is a good day. Looks like the buggered up cells are confined somewhat. No organs involved. Let’s hear it for that. Also NHL appears to be quite treatable.
You gotta love a small town. When we arrive in the emergency/imaging area of the hospital (7 a.m.) there is almost no one there! Beautiful! Again with the IDs and the Medicard and Medigap cards, and the info sheet. What waste there is in this system! The tech is momentarily delayed with an emergency case. I am thinking, “....some poor devil.” Then I am on the gurney and they shoot in the ink. Interesting validation of warm in the throat and then warm all over as they prepped me about this. Just as quickly we are gone and home.
I am able to read the CAT scan report as it is sent to our GP, Mike Stones, on my personal health web site later that afternoon. Except for the validation of the mass in the cecum the lower abdomen is normal. Great to read that all the organs are “unremarkable”. Tech asked me on the table this morning, “You had a prostatectomy?” I say, “Yeah, 8 years ago. You can see its absence?” He says, “I can see the sutures. Those guys have a particular way of closing up.”
So this is a good day. Looks like the buggered up cells are confined somewhat. No organs involved. Let’s hear it for that. Also NHL appears to be quite treatable.
August 25, 2011
Prepped for a couple days for a routine colonoscopy this morning at 7:30 a.m. By 9:30, my life had changed and would change again and again in the next week. The prep for this procedure, as everyone knows who has had one, is worse than the procedure itself. My exam was expected–by me–to be routine since it was scheduled almost at the max interval between these tests which is 5 years, if you are over 60, and since this was maybe my third one since 60. Mine was scheduled after 4 years because of several polyps excised in the prior exam. Good thinking doc!
In the groggy aftermath of the wake up the doctor informed me that he had located a mass in the cecum on the ileocecal valve. This valve prevents backwash from the large intestine (i.e., feces) into the small intestine. The cecum is the pouch between the large and small intestines, and is also home to the appendix. The mass was 5 cm or a little less than 2 inches. He cut a strip from it for assay purposes. He also didn’t like a sort of bumpy texture he saw in the rest of the colon. Those initial assays came back with lymphoma written all over them.
We got together that afternoon for a discussion in which the local pathologist confirmed his findings: non Hodgkins lymphoma (NHL). I quickly got on the web to confirm several points in the discussion. NHL seems to be of two general kinds: aggressive (high grade) or indolent (low grade). Each has pluses and minuses. The former can apparently be attacked successfully and gotten rid of totally. But the attack must be swift and sure because left unchecked it is quickly fatal. The latter can be suppressed and lived with, with less intensive treatment but is often not easily totally eradicated, being more of a chronic nature. Each, they said, was survivable. There are many, many kinds of NHL.
I felt pretty good. We were going to get this thing.
In the groggy aftermath of the wake up the doctor informed me that he had located a mass in the cecum on the ileocecal valve. This valve prevents backwash from the large intestine (i.e., feces) into the small intestine. The cecum is the pouch between the large and small intestines, and is also home to the appendix. The mass was 5 cm or a little less than 2 inches. He cut a strip from it for assay purposes. He also didn’t like a sort of bumpy texture he saw in the rest of the colon. Those initial assays came back with lymphoma written all over them.
We got together that afternoon for a discussion in which the local pathologist confirmed his findings: non Hodgkins lymphoma (NHL). I quickly got on the web to confirm several points in the discussion. NHL seems to be of two general kinds: aggressive (high grade) or indolent (low grade). Each has pluses and minuses. The former can apparently be attacked successfully and gotten rid of totally. But the attack must be swift and sure because left unchecked it is quickly fatal. The latter can be suppressed and lived with, with less intensive treatment but is often not easily totally eradicated, being more of a chronic nature. Each, they said, was survivable. There are many, many kinds of NHL.
I felt pretty good. We were going to get this thing.
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