Dr. Tim Call telephoned me yesterday from Mayo Clinic to say that the initial diagnosis of CLL/SLL was, indeed, correct. He had been thinking that perhaps it might be "Mantle Cell Lymphoma," but further analysis of the biopsied nodes by pathologists at Mayo Clinic confirmed the original diagnosis.
Nancy is disappointed. She was thinking that the other, being more treatable, would be a better finding. But I am not. The reading I had been doing about Rituxin, as a treatment didn't thrill me. Contemplation of the side effects (nausea, chills, diarrhea) and the severely negative consequences of the treatment in a small percentage of recipients (rash, sores, death) was not a comfort to me.
Rituxin, also called Rituximab, is what is called a monoclonal antibody (anything with "mab" at the end of its name is a monoclonal antibody), and a substantial part of it is made from mouse cells. Consequently, many of the negative reactions that people have to it are a sort of rejection, much the same as a body rejecting a transplanted heart or the wrong kind of blood after a transfusion. The whole nine yards about Rituxin can be found at a wonderful Web site http://www.clltopics.org/, and type "rituximab" into the search box there.
Dr. Call was recommending a Rituximab treatment as a way to shrink the tissues in my throat that have been causing my sleep problems. But I think I will hold off as long as possible. I seem to have settled on a way to get sleep, largely by propping myself into a sitting position in bed. It definitely has helped, although it remains to be seen how long that strategy will work. It's conceivable that swelling will continue little by little until something must be done. If so, I'll address that problem when and if it happens. Dr. Call said there was no other pressing reason to try the Rituximab now except to gain relief for sleeping, so I think it's O.K. to do nothing for a while. Maybe I'll get lucky and never need to anything. Or I can consider surgery at that time, also, to carve away excess tissue---sort of a face lift, but inside where nobody would see it!
Meanwhile, losing ten pounds would probably remove some tissue, too!
# # #
Wednesday, May 28, 2008
Sunday, May 18, 2008
The News from Mayo Clinic
Well, I made the long-awaited trip to Mayo Clinic, at Rochester, Minnesota, with a few stops along the way with Matt to catch some ball games at Wrigley Field in Chicago, Miller Park outside Milwaukee, and The Hubert H. Humphrey Dome in Minneapolis (where the Red Sox looked more tired than I did).
Mayo Clinic (they don't call it THE Mayo Clinic, I noticed) is amazing. Picture a 15-story Las Vegas hotel, because it really is run a lot like a destination-resort sort of hotel (except no lodging), that offers state-of-the art medical services instead of gambling. Big lobby. Check-in counter just like a hotel. Then multiply that times three, because there are at least three buildings.
Down to business: I brought all my medical records and actual "glass slides" of the stuff other doctors had extracted from my body. More blood samples were taken. I met with Dr. Timothy Call, a quiet, congenial sort of fellow who is said to be one of the top experts on CLL/SLL in the world. As Nancy and I sat with him, he went through all my records. He spent an hour with us and asked me to come back the next afternoon to discuss it some more after the new blood samples were analyzed. He spent another hour with me then and lined me up to see an ear, nose, throat (ENT) specialist so we could have benefit of that perspective as to how all this relates or does not relate to my sleep probem.
The upshot of the ENT consultation was that my basic body-build gave me a narrow air passage, anyway (O.K., a skinny neck. He was being polite), and that I do have somewhat enlarged tonsils. My uvula is about twice normal in size, and there is some modest swelling of lymph tissue around the base of my tongue. Oh, and I do have a "deviated septum," (basically a crooked nostril from a baseball accident when I was about 12. Mom always said Louie Meade was a bad influence ... he was batting.) "But," the ENT guy said, "no single one of them is causing the problem. They are all contributing to it."
Options for fixing that? Surgery? Possible, but very painful for a week or two.
Focused radiation? Possible, but could screw up my saliva production.
CPAP machine? Possible, but hasn't worked yet and does not address the cause.
Do nothing? Possible, but unlikely to have things remain "as is;" meaning the problem is likely to continue to gradually grow worse.
Monoclonal antibodies? Possible, but it is a kind of chemotherapy that intentionally impairs one's immune system for a while and carries heightened risks of other infections, like pneumonia. But it would also shrink all the swollen lymph tissue in my body for some extended period. How long? A year? Two years? Seven years? That's been the range of other Rituxin recipients.
The final bit of news from Dr. Call was that he is thinking maybe the initial diagnosis of CLL / SLL is not quite correct. It may be something very slightly different, a kind of lymphoma that mimics CLL. His pathology lab is going to do one additional bit of analysis May 19 or 20 to give him some further clue.
The significance of this slight difference is not so slight. If it is this "other thing," he thinks it might be more treatable than a "standard" CLL.
I'm not sure how I feel about that. I had pretty much convinced myself that my condition "as is" was not treatable and unless it morphed into something else, I was not likely to have to go through chemotherapy and intentionally dismantle my immune system in the name of getting better.
Well, no sense thinking about it until I hear the news.
Time to pile up the pillows and take a slug of Nyquil. It's bed time.
Mayo Clinic (they don't call it THE Mayo Clinic, I noticed) is amazing. Picture a 15-story Las Vegas hotel, because it really is run a lot like a destination-resort sort of hotel (except no lodging), that offers state-of-the art medical services instead of gambling. Big lobby. Check-in counter just like a hotel. Then multiply that times three, because there are at least three buildings.
Down to business: I brought all my medical records and actual "glass slides" of the stuff other doctors had extracted from my body. More blood samples were taken. I met with Dr. Timothy Call, a quiet, congenial sort of fellow who is said to be one of the top experts on CLL/SLL in the world. As Nancy and I sat with him, he went through all my records. He spent an hour with us and asked me to come back the next afternoon to discuss it some more after the new blood samples were analyzed. He spent another hour with me then and lined me up to see an ear, nose, throat (ENT) specialist so we could have benefit of that perspective as to how all this relates or does not relate to my sleep probem.
The upshot of the ENT consultation was that my basic body-build gave me a narrow air passage, anyway (O.K., a skinny neck. He was being polite), and that I do have somewhat enlarged tonsils. My uvula is about twice normal in size, and there is some modest swelling of lymph tissue around the base of my tongue. Oh, and I do have a "deviated septum," (basically a crooked nostril from a baseball accident when I was about 12. Mom always said Louie Meade was a bad influence ... he was batting.) "But," the ENT guy said, "no single one of them is causing the problem. They are all contributing to it."
Options for fixing that? Surgery? Possible, but very painful for a week or two.
Focused radiation? Possible, but could screw up my saliva production.
CPAP machine? Possible, but hasn't worked yet and does not address the cause.
Do nothing? Possible, but unlikely to have things remain "as is;" meaning the problem is likely to continue to gradually grow worse.
Monoclonal antibodies? Possible, but it is a kind of chemotherapy that intentionally impairs one's immune system for a while and carries heightened risks of other infections, like pneumonia. But it would also shrink all the swollen lymph tissue in my body for some extended period. How long? A year? Two years? Seven years? That's been the range of other Rituxin recipients.
The final bit of news from Dr. Call was that he is thinking maybe the initial diagnosis of CLL / SLL is not quite correct. It may be something very slightly different, a kind of lymphoma that mimics CLL. His pathology lab is going to do one additional bit of analysis May 19 or 20 to give him some further clue.
The significance of this slight difference is not so slight. If it is this "other thing," he thinks it might be more treatable than a "standard" CLL.
I'm not sure how I feel about that. I had pretty much convinced myself that my condition "as is" was not treatable and unless it morphed into something else, I was not likely to have to go through chemotherapy and intentionally dismantle my immune system in the name of getting better.
Well, no sense thinking about it until I hear the news.
Time to pile up the pillows and take a slug of Nyquil. It's bed time.
Thursday, April 24, 2008
some encouraging news
Another month since I last wrote. More of that slow motion I described then.
It's fair to say, though, that some things have happened.
Another CT scan in March showed that the lymph nodes have not grown or proliferated since first diagnosed in December. That is definitely a good thing.
Analysis of a recent blood sample showed that a particular kind of chromosomal mutation had occurred and, contrary to what might seem preferable, is actually a good thing. I am over-simplifying, but it means my body reacted in a way to combat the problem. It's what Dr. Terry Hamblin, the CLL specialist in England, calls a "prognostic indicator," and in this case it just means the odds for more years are improved, but not at all guaranteed.
Another test---called a FISH test (flourescence in situ hybridization)---was to have been done on that sample, too, but was apparently either botched in the lab or "didn't behave normally," so they drew another blood sample and tried again. I haven't heard the results of that yet. Writing this reminds me to call and nag them.
I wrote a letter to Dr. Timothy Call, a leading CLL specialist at The Mayo Clinic, Rochester, Minnesota, to see if he could fit my case into his workload (for that "second opinion"). I thought I'd ask him directly before going through the hassle of getting approval from my insurance company, only to find out (perhaps) that he could not. A visit to him would be instead of going to The Dana Farber Institute in Boston.
Three or four days later, my cell phone rang. It was Dr. Call. He wanted to let me know he would take my case---no problem. He said if I could only be there for one day, he'd probably see me once in the morning and, if necessary, have some tests done and then see me again in late afternoon. If I could be flexible enough to hang around for a couple days, so as to be sure of a thorough evaluation, that might be even better.
Once again, I am amazed that a reknowned specialist would take the time to contact me directly (never have had doctors before that would do that).
So, May 13th is the date in Minnesota, just down the highway from Lake Wobegon.
To make the whole thing more fun, Matt and I will fly out on the Saturday before, going to Chicago. We'll catch a Cubs game, then drive to a Sunday game in Milwaukee, then drive to a Monday night game in Minneapolis (versus the Red Sox, no less). After the Twins-Sox game, we'll meet Nancy, who will have flown from Albany. Then Matt will fly back, Nancy will stay for two days of consultations with me and fly back Wednesday night. I'll hang around as long as necessary and then fly back to Albany. Slightly complex, but it ought to work!
Last bit of news: I went to a different sleep-specialist doctor who seems a bit sharper. He authorized a reduction in the air pressure of the CPAP machine, so I picked up another one from the "official vendor" authorized by my insurance company, tried it last night, and promptly pumped my stomach full of air again. Darn. I'll try it again tonight, but I expect the same miserable results.
So, that's the medical news for now!
It's fair to say, though, that some things have happened.
Another CT scan in March showed that the lymph nodes have not grown or proliferated since first diagnosed in December. That is definitely a good thing.
Analysis of a recent blood sample showed that a particular kind of chromosomal mutation had occurred and, contrary to what might seem preferable, is actually a good thing. I am over-simplifying, but it means my body reacted in a way to combat the problem. It's what Dr. Terry Hamblin, the CLL specialist in England, calls a "prognostic indicator," and in this case it just means the odds for more years are improved, but not at all guaranteed.
Another test---called a FISH test (flourescence in situ hybridization)---was to have been done on that sample, too, but was apparently either botched in the lab or "didn't behave normally," so they drew another blood sample and tried again. I haven't heard the results of that yet. Writing this reminds me to call and nag them.
I wrote a letter to Dr. Timothy Call, a leading CLL specialist at The Mayo Clinic, Rochester, Minnesota, to see if he could fit my case into his workload (for that "second opinion"). I thought I'd ask him directly before going through the hassle of getting approval from my insurance company, only to find out (perhaps) that he could not. A visit to him would be instead of going to The Dana Farber Institute in Boston.
Three or four days later, my cell phone rang. It was Dr. Call. He wanted to let me know he would take my case---no problem. He said if I could only be there for one day, he'd probably see me once in the morning and, if necessary, have some tests done and then see me again in late afternoon. If I could be flexible enough to hang around for a couple days, so as to be sure of a thorough evaluation, that might be even better.
Once again, I am amazed that a reknowned specialist would take the time to contact me directly (never have had doctors before that would do that).
So, May 13th is the date in Minnesota, just down the highway from Lake Wobegon.
To make the whole thing more fun, Matt and I will fly out on the Saturday before, going to Chicago. We'll catch a Cubs game, then drive to a Sunday game in Milwaukee, then drive to a Monday night game in Minneapolis (versus the Red Sox, no less). After the Twins-Sox game, we'll meet Nancy, who will have flown from Albany. Then Matt will fly back, Nancy will stay for two days of consultations with me and fly back Wednesday night. I'll hang around as long as necessary and then fly back to Albany. Slightly complex, but it ought to work!
Last bit of news: I went to a different sleep-specialist doctor who seems a bit sharper. He authorized a reduction in the air pressure of the CPAP machine, so I picked up another one from the "official vendor" authorized by my insurance company, tried it last night, and promptly pumped my stomach full of air again. Darn. I'll try it again tonight, but I expect the same miserable results.
So, that's the medical news for now!
Tuesday, March 18, 2008
Slow Motion
After a couple months of intense investigations, reading, appointments, etc., it seems as though things have gone into a slow-motion mode. Easy to be lulled into a sense of false normalcy.
Reality check: We got word today that college friend Art Gruhn died today of cancer.
I still haven't rescheduled the appointment at the Dana Farber Institure in Boston, and probably won't. More likely, when it comes time to schedule an appointment for a second opinion, it will be at the Mayo Clinic in Rochester, Minnesota. Two people whom I "met" through CLL Web sites and a List-serv say that there are doctors at the Mayo Clinic who specialize in what I have--CLL---whereas the doctors at The Dana Farber Institute are "merely" cancer specialists, but not specialists in the kind I have. If the insurance company is going to pay for only one second opinion, I had better get it from the best.
I won't even schedule it until I have the results from the newest batch of tests, the tests recommended by Dr. Terry Hamblin, the specialist in England who was kind enough to read my test results and recommend others. The ones he recommends are for "prognostic indicators" he did research on, largely looking for special chromosome mutations, and measurements of immunoglobulins... key to resistance to secondary infections.
My local oncologist, when I showed him the correspondence from Dr. Hamblin, said (basically), "Well, sure, O.K." Since they were drawing blood for other tests, anyway, it seemed like a simple enough thing.
It's been a week and still no call from the doctor to say, "Your test results are in." More slow motion. I'll be back in his office in two days, anyway, so I'll be patient until then.. Maybe that's why they call clients of doctors "patients."
Meanwhile, the sleep problem lingers. The new "auto CPAP" machine actually lets me inhale fully (what a concept!) but it also inflates my stomach (just too much pressure and I am not allowed to adjust it), so I have been trying it only each alternate night, letting my stomach recover for a two days before trying it again. The darn thing costs $266 a month to rent, a rip-off of the insurance company by the vendor if ever there was one. I think it's seen the end of its expensive trial run. I think I could make a better one with PVC pipe and a small fan with a dimmer switch. Meanwhile, Nyquil is the answer. Boom---out like a light, and a lot cheaper.
Reality check: We got word today that college friend Art Gruhn died today of cancer.
I still haven't rescheduled the appointment at the Dana Farber Institure in Boston, and probably won't. More likely, when it comes time to schedule an appointment for a second opinion, it will be at the Mayo Clinic in Rochester, Minnesota. Two people whom I "met" through CLL Web sites and a List-serv say that there are doctors at the Mayo Clinic who specialize in what I have--CLL---whereas the doctors at The Dana Farber Institute are "merely" cancer specialists, but not specialists in the kind I have. If the insurance company is going to pay for only one second opinion, I had better get it from the best.
I won't even schedule it until I have the results from the newest batch of tests, the tests recommended by Dr. Terry Hamblin, the specialist in England who was kind enough to read my test results and recommend others. The ones he recommends are for "prognostic indicators" he did research on, largely looking for special chromosome mutations, and measurements of immunoglobulins... key to resistance to secondary infections.
My local oncologist, when I showed him the correspondence from Dr. Hamblin, said (basically), "Well, sure, O.K." Since they were drawing blood for other tests, anyway, it seemed like a simple enough thing.
It's been a week and still no call from the doctor to say, "Your test results are in." More slow motion. I'll be back in his office in two days, anyway, so I'll be patient until then.. Maybe that's why they call clients of doctors "patients."
Meanwhile, the sleep problem lingers. The new "auto CPAP" machine actually lets me inhale fully (what a concept!) but it also inflates my stomach (just too much pressure and I am not allowed to adjust it), so I have been trying it only each alternate night, letting my stomach recover for a two days before trying it again. The darn thing costs $266 a month to rent, a rip-off of the insurance company by the vendor if ever there was one. I think it's seen the end of its expensive trial run. I think I could make a better one with PVC pipe and a small fan with a dimmer switch. Meanwhile, Nyquil is the answer. Boom---out like a light, and a lot cheaper.
Thursday, March 6, 2008
Pushing for more information
I keep reading that people in my position---diagnosed with CLL---have to be their own advocate, and aggressively so. I am beginning to see that this is true.
Days went by and I had not heard back from the Ear, Nose, Throat (ENT) doctor about the results of my most recent CT scan (the one he ordered at my behest) intended to see if the various glands and lymph nodes in my throat had grown any and were crowding up against my wind pipe or against the base of my tongue. So I called, and called again the next day. Finally I got a call back from a clerk (administrative aide?) at his office to say she was surprised I hadn't heard any results. Yup; me, too.
Today, the ENT doctor did call---thank you, very much---and said that there was no growth in my lymph nodes since December (approx. 60 days). That's pretty good news!
I have also had trouble getting a reply from my oncologist about arranging for the additional tests recommended by Dr. Hamblin, in England. His head nurse actually seemed rather annoyed that I had actually obtained advice from other sources, or that I had made a decision (in the absence of timely advice from her boss) on my own to postpone the appointment at the Dana Farber Institute.
"You did what???" she asked.
"What makes you think the Dana Farber Institute even needs those tests?" she sniped.
"I don't know. It just seems sort of logical that if one of the top CLL experts in the world thinks it would be advisable, then the folks at Dana Farber might benefit from the information in evaluating my case."
So, anyway, she dumped the job on me of finding out from my insurance company if it will pay for these tests.
I think I need to talk to her boss. I am inclined to think if he---the doctor---says the tests would be helpful, the insurance company would be a lot more inclined to say "yes" than if I ask.
Nobody said this would be easy.
Days went by and I had not heard back from the Ear, Nose, Throat (ENT) doctor about the results of my most recent CT scan (the one he ordered at my behest) intended to see if the various glands and lymph nodes in my throat had grown any and were crowding up against my wind pipe or against the base of my tongue. So I called, and called again the next day. Finally I got a call back from a clerk (administrative aide?) at his office to say she was surprised I hadn't heard any results. Yup; me, too.
Today, the ENT doctor did call---thank you, very much---and said that there was no growth in my lymph nodes since December (approx. 60 days). That's pretty good news!
I have also had trouble getting a reply from my oncologist about arranging for the additional tests recommended by Dr. Hamblin, in England. His head nurse actually seemed rather annoyed that I had actually obtained advice from other sources, or that I had made a decision (in the absence of timely advice from her boss) on my own to postpone the appointment at the Dana Farber Institute.
"You did what???" she asked.
"What makes you think the Dana Farber Institute even needs those tests?" she sniped.
"I don't know. It just seems sort of logical that if one of the top CLL experts in the world thinks it would be advisable, then the folks at Dana Farber might benefit from the information in evaluating my case."
So, anyway, she dumped the job on me of finding out from my insurance company if it will pay for these tests.
I think I need to talk to her boss. I am inclined to think if he---the doctor---says the tests would be helpful, the insurance company would be a lot more inclined to say "yes" than if I ask.
Nobody said this would be easy.
Thursday, February 28, 2008
Correction
A few entries back, when reporting on my bone marrow test results, I said the test did show lymphoma in the marrow. I said, "Stage 4."
That was an error. For other cancers, if this stuff is found in the bone marrow, yes, it is described at "stage 4." But for CLL (Chronic Lymphocytic Leukemia), being in the bone marrow does not constitute "stage 4."
These stages are established by the medical community as a way of establishing the degree of progress of the disease and as a guide to deciding what treatments are appropriate.
That was an error. For other cancers, if this stuff is found in the bone marrow, yes, it is described at "stage 4." But for CLL (Chronic Lymphocytic Leukemia), being in the bone marrow does not constitute "stage 4."
These stages are established by the medical community as a way of establishing the degree of progress of the disease and as a guide to deciding what treatments are appropriate.
Second opinions
I was scheduled to go to the Dana Farber Institute, Boston, Mass., on March 4th. The office staff of my local oncologist navigated the paperwork through the channels of my insurance company.
The appointment is with a Dr. Eric Jacobsen. I looked him up on the Internet. Seems to be a fairly recent addition to the staff. Has had some teaching duties at Harvard. His focus seems to be on stem cell transplants. Is CLL his specialty? Doesn't say. No reason to think so.
It was in the middle of my waiting for confirmation of this appointment that I learned of http://www.clltopics.org/. What I learned there set my tired brain working on this idea: If I were to list the top five CLL specialists in the world, who would be on the list? And if I do not know whom to put on that list, who would know?
I sent an e-mail to Chaya Venkat, the creator of the clltopics Web site. Within ten minutes I had a personal reply. Utterly amazing.
So, my plan (as of Thursday night, Feb. 28) is to cancel the Dana Farber appointment, have the tests done that Dr. Terry Hamblin suggests, and then take all that data with me to whatever CLL expert I settle on, somebody on that "top 5" list.
O.K., so maybe Al Gore didn't invent the Internet. But it sure is amazing.
# # #
The appointment is with a Dr. Eric Jacobsen. I looked him up on the Internet. Seems to be a fairly recent addition to the staff. Has had some teaching duties at Harvard. His focus seems to be on stem cell transplants. Is CLL his specialty? Doesn't say. No reason to think so.
It was in the middle of my waiting for confirmation of this appointment that I learned of http://www.clltopics.org/. What I learned there set my tired brain working on this idea: If I were to list the top five CLL specialists in the world, who would be on the list? And if I do not know whom to put on that list, who would know?
I sent an e-mail to Chaya Venkat, the creator of the clltopics Web site. Within ten minutes I had a personal reply. Utterly amazing.
So, my plan (as of Thursday night, Feb. 28) is to cancel the Dana Farber appointment, have the tests done that Dr. Terry Hamblin suggests, and then take all that data with me to whatever CLL expert I settle on, somebody on that "top 5" list.
O.K., so maybe Al Gore didn't invent the Internet. But it sure is amazing.
# # #
We report. You decide.
So much has happened since I last wrote anything for this blog, I hardly know where to start.
Some ups (relatively), some downs.
If I had to sum up what I have learned since my previous post, it would be by saying modern medicine has become like Fox News: "We report. You decide." And while I don't believe it for a minute as it relates to Fox, I DO believe it about modern day medical care.
Key West
Nancy and I had a nice three-night trip to Key West February 19-23. It was a trip we were scheduled to take last year during the same period, until we arrived at the airport ticket counter and were informed that our flight had been cancelled.
But this time we made it. Nancy had been fighting a low-grade flu or something, but gamely dragged herself through three flights to get there from here.
Going from six inches of snow to 81 degrees was pretty nice! We loved bicycling around the island and seeing all the beautiful old homes, listening to all the Jimmy Buffett wannabees in the dockside bars, and spending an afternoon on an 85-foot schooner. A visit to Ernest Hemingway’s home and to a tourist-trappy (but still very interesting) “butterfly zoo” (thousands flying all around you) rounded it out.
On third day, as we bicycled back to the guest-house apartment, I swallowed and actually yelped out loud because it hurt so much. Where did THAT come from? Nancy looked down my throat with a flashlight and said it looked like a recurrence of that Coxsackie virus: very red, white and red spots, and highly localized—just one specific spot.
Now it’s a week later, and it still hurts like holy heck. So, here is what will likely be a long string of decisions: do I go back to the doctor AGAIN? So he can tell me AGAIN it’s Coxsackie virus and there’s nothing to do but wait it out? Or is it the flu-bug that’s going around? Or both? Looks like “wait it out.”
Another CT Scan
Last week I went back for another CT scan of my neck. The idea is to see if the lymph nodes have grown any. Is it possible they have and are causing the sleep problem by crowding up against my wind pipe? The Ear, Nose, Throat doctor (oh, yeah, I saw him again, too, and after he fished a spaghetti-like scope down my nose to the base of my tongue) said, “I don’t see anything abnormal down there.” So maybe the lymph nodes are, indeed, causing it. I still don’t know. Haven’t got the new scan results back yet.
New sources of information
The Internet is an amazing thing. It truly is. I came across a Web site I had not discovered before: http://www.clltopics.org/. If anyone wants to learn the real cutting-edge, relevant facts about CLL, and read it in empathetic, yet clear language, this is it.
It is the creation of Dr. Chaya Venkat (PhD doctor of chemical engineering, I think) who seems to have been motivated by her husband’s being diagnosed with CLL. I have learned SO much from this Web site. It’s better than a doctor’s consultation, and I am not exaggerating. She’s a really good writer, and I say that as one who has made his living for much of his career as a writer and editor.
At http://www.clltopics.com/, I have also come across the name of Dr. Terry Hamblin, in the UK. Another amazing—truly amazing—person. He is probably one of the top six experts in the world on CLL. Until I have reason to think otherwise, I would rank him number one. And—get this—he answers e-mails.
I scanned all of my test results from my original lymph-node biopsies and bone marrow samples and e-mailed them to him. I sent them all two nights ago (Feb 26). The next morning at 9 a.m., from across the ocean, I had his reply. I couldn't belive it.
Here is what he wrote:
From what I can gather from your results, your cells are CD38 negative and ZAP-70 negative. This indicates a good prognosis - in our series more than 70% of patients with this result never require treatment and no-one has died of CLL in the first 25 years follow up.
It would still be worth getting IgVH mutations done (ZAP-70 is a surrogate, but is difficult to do properly and I have seen many false positives and false negatives). Also FISH to look for abnormalities of 11q and 17p is desirable.
As far as your throat is concerned, you can't do better than an ENT opinion.
Recurrent infections are always a problem with CLL and serum Igs is the first thing to do.
Terry Hamblin
I can’t believe this man, who devoted his career to research of CLL, and as of this month is now “retired,” would lend his expertise to people like me, people simply looking for insight and perspective of what the data really means. Basically, what it means is that certain critical “indicator chromosomes” that he has researched over the years are looking pretty good, but I ought to get certain other tests done (that my oncologist has not yet ordered).
Last, I found a daily—yes daily—“list serve” that offers news and shared experiences for and from “the CLL community.” Anyone can sign up for it. Plus I have found several very well-crafted blogs by other people who are in situations similar to mine, and they all share freely what they have learned.
I am so grateful.
# # #
Some ups (relatively), some downs.
If I had to sum up what I have learned since my previous post, it would be by saying modern medicine has become like Fox News: "We report. You decide." And while I don't believe it for a minute as it relates to Fox, I DO believe it about modern day medical care.
Key West
Nancy and I had a nice three-night trip to Key West February 19-23. It was a trip we were scheduled to take last year during the same period, until we arrived at the airport ticket counter and were informed that our flight had been cancelled.
But this time we made it. Nancy had been fighting a low-grade flu or something, but gamely dragged herself through three flights to get there from here.
Going from six inches of snow to 81 degrees was pretty nice! We loved bicycling around the island and seeing all the beautiful old homes, listening to all the Jimmy Buffett wannabees in the dockside bars, and spending an afternoon on an 85-foot schooner. A visit to Ernest Hemingway’s home and to a tourist-trappy (but still very interesting) “butterfly zoo” (thousands flying all around you) rounded it out.
On third day, as we bicycled back to the guest-house apartment, I swallowed and actually yelped out loud because it hurt so much. Where did THAT come from? Nancy looked down my throat with a flashlight and said it looked like a recurrence of that Coxsackie virus: very red, white and red spots, and highly localized—just one specific spot.
Now it’s a week later, and it still hurts like holy heck. So, here is what will likely be a long string of decisions: do I go back to the doctor AGAIN? So he can tell me AGAIN it’s Coxsackie virus and there’s nothing to do but wait it out? Or is it the flu-bug that’s going around? Or both? Looks like “wait it out.”
Another CT Scan
Last week I went back for another CT scan of my neck. The idea is to see if the lymph nodes have grown any. Is it possible they have and are causing the sleep problem by crowding up against my wind pipe? The Ear, Nose, Throat doctor (oh, yeah, I saw him again, too, and after he fished a spaghetti-like scope down my nose to the base of my tongue) said, “I don’t see anything abnormal down there.” So maybe the lymph nodes are, indeed, causing it. I still don’t know. Haven’t got the new scan results back yet.
New sources of information
The Internet is an amazing thing. It truly is. I came across a Web site I had not discovered before: http://www.clltopics.org/. If anyone wants to learn the real cutting-edge, relevant facts about CLL, and read it in empathetic, yet clear language, this is it.
It is the creation of Dr. Chaya Venkat (PhD doctor of chemical engineering, I think) who seems to have been motivated by her husband’s being diagnosed with CLL. I have learned SO much from this Web site. It’s better than a doctor’s consultation, and I am not exaggerating. She’s a really good writer, and I say that as one who has made his living for much of his career as a writer and editor.
At http://www.clltopics.com/, I have also come across the name of Dr. Terry Hamblin, in the UK. Another amazing—truly amazing—person. He is probably one of the top six experts in the world on CLL. Until I have reason to think otherwise, I would rank him number one. And—get this—he answers e-mails.
I scanned all of my test results from my original lymph-node biopsies and bone marrow samples and e-mailed them to him. I sent them all two nights ago (Feb 26). The next morning at 9 a.m., from across the ocean, I had his reply. I couldn't belive it.
Here is what he wrote:
From what I can gather from your results, your cells are CD38 negative and ZAP-70 negative. This indicates a good prognosis - in our series more than 70% of patients with this result never require treatment and no-one has died of CLL in the first 25 years follow up.
It would still be worth getting IgVH mutations done (ZAP-70 is a surrogate, but is difficult to do properly and I have seen many false positives and false negatives). Also FISH to look for abnormalities of 11q and 17p is desirable.
As far as your throat is concerned, you can't do better than an ENT opinion.
Recurrent infections are always a problem with CLL and serum Igs is the first thing to do.
Terry Hamblin
I can’t believe this man, who devoted his career to research of CLL, and as of this month is now “retired,” would lend his expertise to people like me, people simply looking for insight and perspective of what the data really means. Basically, what it means is that certain critical “indicator chromosomes” that he has researched over the years are looking pretty good, but I ought to get certain other tests done (that my oncologist has not yet ordered).
Last, I found a daily—yes daily—“list serve” that offers news and shared experiences for and from “the CLL community.” Anyone can sign up for it. Plus I have found several very well-crafted blogs by other people who are in situations similar to mine, and they all share freely what they have learned.
I am so grateful.
# # #
Thursday, February 7, 2008
Jeez, what next?
Had a sore throat the past few days. I assumed it was caused by blowing air down my throat with that darned BIPAP machine. Last night I looked into the mirror with a flashlight and looked down my throat. Yikes! Pretty ugly. Raw, red, with white spots, but only on one side of my throat.
"Looks like strep throat," Nancy said. "Better go to the doctor."
Can I get frequent flyer miles with all these doctor visits?
So I stopped there on my way to work. They took me right in. (Wow.)
"No. It's not strep throat," the doctor said. "It's Coxsackie Virus."
I knew Coxsackie, N.Y., was an ugly town, but I didn't think it capable of this.
Anyway, there's no treatment. No cure. Just ride it out and it goes away in 7 to 12 days.
It makes me wonder if working in a building with 50 or 60 home healthcare workers (St. Peter's Hospital Home Health Care occupies the first two floors) is a good idea. I never did think all these saints were to be relied upon.
Is this what a life with an impaired immune system looks like?
"Looks like strep throat," Nancy said. "Better go to the doctor."
Can I get frequent flyer miles with all these doctor visits?
So I stopped there on my way to work. They took me right in. (Wow.)
"No. It's not strep throat," the doctor said. "It's Coxsackie Virus."
I knew Coxsackie, N.Y., was an ugly town, but I didn't think it capable of this.
Anyway, there's no treatment. No cure. Just ride it out and it goes away in 7 to 12 days.
It makes me wonder if working in a building with 50 or 60 home healthcare workers (St. Peter's Hospital Home Health Care occupies the first two floors) is a good idea. I never did think all these saints were to be relied upon.
Is this what a life with an impaired immune system looks like?
What to do?
It's a bit weird to have an oncologist---a doctor who specializes in cancer treatment---ask you, "What do you want to do?"
But that's what happened yesterday.
The results of the bone marrow test came back positive: yes, the lymphoma is in there, too. No surprise to me. I fully expected it, given that I figure I have had this for many months, maybe a year or more, before it was officially diagnosed. I can look back at family snapshots from last July and see the enlarged lymph nodes right in the pictures.
So, this puts the lymphoma / leukemia officially at "stage 4," to borrow the vocabulary of the cancer specialists. But still, it's the slow growing type and comparative statistics say the "doing nothing" is as good as taking aggressive action.
The alternatives? (a) chemo therapy (with all its ugly side affects); (b) monoclonal antibodies (sort of a man-made white blood cell to boost your immunity (with or without the chemo; some successes with using it alone; possible allergy to it); r (c) focus on nutrition, exercise, and sleep.
I asked for a test for H. pylori. Might as well rule it out or see if it is there. They drew a blood sample for that on the spot.
I asked for a referral back to the ear, nose, throat specialist so as to address the nighttime gagging and sleep problem. There will be no adequate sleep until that gets fixed. (See yesterday's blog entry for discussion about that!)
The oncologist suggested we get a second opinion. He will try to arrange that at the Dana Farber Institute in Boston. He asked when I would want to go. I suggested any day during The Red Sox's opening home stand.
Guess I'll go study-up on monoclonal antibodies. Sounds like it might be a real possibiity with few or no negative implications.
But that's what happened yesterday.
The results of the bone marrow test came back positive: yes, the lymphoma is in there, too. No surprise to me. I fully expected it, given that I figure I have had this for many months, maybe a year or more, before it was officially diagnosed. I can look back at family snapshots from last July and see the enlarged lymph nodes right in the pictures.
So, this puts the lymphoma / leukemia officially at "stage 4," to borrow the vocabulary of the cancer specialists. But still, it's the slow growing type and comparative statistics say the "doing nothing" is as good as taking aggressive action.
The alternatives? (a) chemo therapy (with all its ugly side affects); (b) monoclonal antibodies (sort of a man-made white blood cell to boost your immunity (with or without the chemo; some successes with using it alone; possible allergy to it); r (c) focus on nutrition, exercise, and sleep.
I asked for a test for H. pylori. Might as well rule it out or see if it is there. They drew a blood sample for that on the spot.
I asked for a referral back to the ear, nose, throat specialist so as to address the nighttime gagging and sleep problem. There will be no adequate sleep until that gets fixed. (See yesterday's blog entry for discussion about that!)
The oncologist suggested we get a second opinion. He will try to arrange that at the Dana Farber Institute in Boston. He asked when I would want to go. I suggested any day during The Red Sox's opening home stand.
Guess I'll go study-up on monoclonal antibodies. Sounds like it might be a real possibiity with few or no negative implications.
Wednesday, February 6, 2008
Oh for some sleep
Everything I read about dealing with CLL / SLL (lymphoma) suggests that keeping one's immune system operating at peak efficiency is critical. That is a bit difficult when one cannot sleep.
This whole process (discovering lymphoma) began with my going to a doctor to seek help in fixing a sleep problem and while the lymphoma is bad news and important, for sure, it has also been something of a diversion from addressing and solving the sleep problem.
I had gone to a sleep clinic back in November, I think it was, and it was a disaster. I thought I was going to die if I didn't rip off that air-pump mask they put on me. (So, yes, I did rip it off after about three hours.)
The gizmo was called a BIPAP machine and it is supposed to be a bit more sophisticated than a CPAP machine. CPAP just blows a steady stream of air down your throat to inflate your pipes and prevent snoring and sleep apnea. A BIPAP blows in at one pressure and lets up for exhaling . . . in theory. My major problem at the sleep clinic was that it kept shutting off my air supply half way through my inhaling. I didn't appreciate that and the attendent seemed unconcerned.
Having also arrived at the opinion that the doctor who sent me there was a quack, I decided to try to solve the problem without the BIPAP machine (and so discovered swollen lymph nodes.) And the rest, as they say, is history.
But after more and more sleepless nights, I gave in last week and decided to force myself to adapt to the BIPAP machine. I tried it out for the first time this past Sunday night. It didn't go well (same problem with it shutting me off as I tried to inhale, even after adjusting it) and in the morning I noticed I had a bit of a stomach ache. I figured it was something I had eaten Sunday.
Monday night and Tuesday morning, same deal.
Tuesday night and Wednesday morning, same deal, but worse. But I learned something over night. Around 3:00 a.m. I began feeling a stomach ache again. I reached own and rubbed my stomach and discovered it had quite literally ballooned. That doggone machine was pumping air into my stomach! (And a lot of it was trying to get out the other end of me--nasty.)
So, once again I ripped off the mask.
It set me thinking. I have felt for a long time that acid reflux (acidic vapors rising up from my stomach and escaping into my windpipe) had caused my nighttime gagging and sleep apnea. After all, acid reflux happens when "the stopper" in one's esophagus doesn't close properly and lets the gases (sometimes fluids) back up the esophagus. Or a hole in it (a hiatal hernia) lets it leak through. Some heavy duty reading of on-line medical-journal articles today confirms that this, indeed, happens.
It struck me as logical that this same hole or poorly fitting "stopper" would allow the pumped air to go back the same way, through the defect, a kind of backwards confirmation, perhaps, of the underlying problem.
So, next week it's back to the ear, nose and throat specialist for a conversation about this. Maybe I'm crazy, but it all seems logical to me.
Is this what's going on? Is it fixable? (Supposed to be.)
Stay tuned.
This whole process (discovering lymphoma) began with my going to a doctor to seek help in fixing a sleep problem and while the lymphoma is bad news and important, for sure, it has also been something of a diversion from addressing and solving the sleep problem.
I had gone to a sleep clinic back in November, I think it was, and it was a disaster. I thought I was going to die if I didn't rip off that air-pump mask they put on me. (So, yes, I did rip it off after about three hours.)
The gizmo was called a BIPAP machine and it is supposed to be a bit more sophisticated than a CPAP machine. CPAP just blows a steady stream of air down your throat to inflate your pipes and prevent snoring and sleep apnea. A BIPAP blows in at one pressure and lets up for exhaling . . . in theory. My major problem at the sleep clinic was that it kept shutting off my air supply half way through my inhaling. I didn't appreciate that and the attendent seemed unconcerned.
Having also arrived at the opinion that the doctor who sent me there was a quack, I decided to try to solve the problem without the BIPAP machine (and so discovered swollen lymph nodes.) And the rest, as they say, is history.
But after more and more sleepless nights, I gave in last week and decided to force myself to adapt to the BIPAP machine. I tried it out for the first time this past Sunday night. It didn't go well (same problem with it shutting me off as I tried to inhale, even after adjusting it) and in the morning I noticed I had a bit of a stomach ache. I figured it was something I had eaten Sunday.
Monday night and Tuesday morning, same deal.
Tuesday night and Wednesday morning, same deal, but worse. But I learned something over night. Around 3:00 a.m. I began feeling a stomach ache again. I reached own and rubbed my stomach and discovered it had quite literally ballooned. That doggone machine was pumping air into my stomach! (And a lot of it was trying to get out the other end of me--nasty.)
So, once again I ripped off the mask.
It set me thinking. I have felt for a long time that acid reflux (acidic vapors rising up from my stomach and escaping into my windpipe) had caused my nighttime gagging and sleep apnea. After all, acid reflux happens when "the stopper" in one's esophagus doesn't close properly and lets the gases (sometimes fluids) back up the esophagus. Or a hole in it (a hiatal hernia) lets it leak through. Some heavy duty reading of on-line medical-journal articles today confirms that this, indeed, happens.
It struck me as logical that this same hole or poorly fitting "stopper" would allow the pumped air to go back the same way, through the defect, a kind of backwards confirmation, perhaps, of the underlying problem.
So, next week it's back to the ear, nose and throat specialist for a conversation about this. Maybe I'm crazy, but it all seems logical to me.
Is this what's going on? Is it fixable? (Supposed to be.)
Stay tuned.
Wednesday, January 23, 2008
Maybe it's a stretch, but ...
With all this reading I have been doing, I came across a fascinating tidbit: a microscopic organism---bacteria, really---called Helicobacter pylori. It was discovered in the early 1980s by an Australian medical researcher who established that it is the leading cause, maybe the only real cause, of ulcers (not stress).
It takes up residence in the lining of the stomach, in the mucosal tissue, and---surprise, surprise---it also causes lymphoma.
Before it gets that far it causes all manner of gastric distress, which I had a great deal of last summer and early fall: bloating, gas, diarrhea . . . all sorts of fun. I thought it was just a new phase of my lactose intolerance, which I have had for years. But maybe---just maybe---there is a connection.
It kind of makes sense. Helicobacter pylori gets into humans from fecal material, contaminated water (we draw our water here at Duane Lake from the lake, a veritable pool of goose poop, although we have a $5,000 water treatment system in the basement). And---get this---the medical literature says there is a suspected association with sheep. Could 20 years of having sheep be a possible source of this lymphoma? It sounds like a stretch.
Anyway, Dr. Schlossberg, my oncologist, was kind enough not to laugh when I shared all this with him and said it would be worth it to test me for H. pylori. The intriguing thing is that the H. pylori often can be eradicated and, when done, the lymphoma often (not always) recedes pretty quickly thereafter.
Aside from all that?
I was feeling pretty good last week. I got to the gym four times, slept pretty well. Then, this past weekend, I began having problems sleeping again and seem to have caught myself a cold. It is interesting how one's mind begins to run when you catch your first cold after being told you have an impaired immune system. Something like "Oh, crap," or words to that effect.
I also had quite a few "itchy sessions" during those bad-sleep nights: all part of the package called Chronic Lymphocytic Lymphoma. I'm not going to dwell on it, but there it is.
This morning I had my first bone marrow "extraction." It wasn't anywhere near as bad as I thought it might be. It was less painful than a dentist drilling. I should know in a week or so whether the lymphoma / leukemia has gotten into the bone marrow. The doctor said, even if it has, it doesn't mean they'd do anything.
More wait and see.
Tired as heck. Time for a nap.
It takes up residence in the lining of the stomach, in the mucosal tissue, and---surprise, surprise---it also causes lymphoma.
Before it gets that far it causes all manner of gastric distress, which I had a great deal of last summer and early fall: bloating, gas, diarrhea . . . all sorts of fun. I thought it was just a new phase of my lactose intolerance, which I have had for years. But maybe---just maybe---there is a connection.
It kind of makes sense. Helicobacter pylori gets into humans from fecal material, contaminated water (we draw our water here at Duane Lake from the lake, a veritable pool of goose poop, although we have a $5,000 water treatment system in the basement). And---get this---the medical literature says there is a suspected association with sheep. Could 20 years of having sheep be a possible source of this lymphoma? It sounds like a stretch.
Anyway, Dr. Schlossberg, my oncologist, was kind enough not to laugh when I shared all this with him and said it would be worth it to test me for H. pylori. The intriguing thing is that the H. pylori often can be eradicated and, when done, the lymphoma often (not always) recedes pretty quickly thereafter.
Aside from all that?
I was feeling pretty good last week. I got to the gym four times, slept pretty well. Then, this past weekend, I began having problems sleeping again and seem to have caught myself a cold. It is interesting how one's mind begins to run when you catch your first cold after being told you have an impaired immune system. Something like "Oh, crap," or words to that effect.
I also had quite a few "itchy sessions" during those bad-sleep nights: all part of the package called Chronic Lymphocytic Lymphoma. I'm not going to dwell on it, but there it is.
This morning I had my first bone marrow "extraction." It wasn't anywhere near as bad as I thought it might be. It was less painful than a dentist drilling. I should know in a week or so whether the lymphoma / leukemia has gotten into the bone marrow. The doctor said, even if it has, it doesn't mean they'd do anything.
More wait and see.
Tired as heck. Time for a nap.
Sunday, January 13, 2008
It's all about the immune system
I remember the day well. Back in early September I was working outdoors, building a porch onto the end of the house. It was a hot, sweaty day and as I was cutting some rafters for the roof, I felt a bee sting about half way up the left side of my back, right through my T-shirt. Zap. Except it wasn't quite a bee sting. It was as though the bee didn't quite finish the job. That was four months ago, and I can still feel it. It still pricks at me a couple times a day. Sometimes it itches. Sometimes it aches a bit.
It wasn't a bee sting, at all. It was shingles.
Shingles? Yeah, chicken pox for senior citizens. Herpes zoster.
How do I know?
Because I also had a rash develop in three places on my face. At first I thought it was an inflammation from rubbing pressure-treated sawdust into my skin as I wiped the sweat away. But as the days went by, it didn't go away, and it seemed to be spreading. So, off I went to the computer to look it up: Don't delay in getting medical attention, it said.
And at the emergency room, the diagnosis was, sure enough, shingles.
Then came the lymphoma diagnosis; then the enlarged tonsils diagnosis (even if four days later another doctor couldn't see it).
All three things can and do result from an impaired immune system. Who knows where that came from?
Jeff sent me a copy of a medical advisory sheet Anne's uncle, Sean, received several years ago in Ireland when he was diagnosed with the same thing. It warns CLL (chronic lymphocytic leukemia) patients to watch out for shingles. It all sort-of fits.
So, the more I read and the more I piece together the puzzle, it seems to come down to really taking care of my immune system through adequate sleep, better-than-good nutrition, and exercise.
After that, it's pot luck!
It wasn't a bee sting, at all. It was shingles.
Shingles? Yeah, chicken pox for senior citizens. Herpes zoster.
How do I know?
Because I also had a rash develop in three places on my face. At first I thought it was an inflammation from rubbing pressure-treated sawdust into my skin as I wiped the sweat away. But as the days went by, it didn't go away, and it seemed to be spreading. So, off I went to the computer to look it up: Don't delay in getting medical attention, it said.
And at the emergency room, the diagnosis was, sure enough, shingles.
Then came the lymphoma diagnosis; then the enlarged tonsils diagnosis (even if four days later another doctor couldn't see it).
All three things can and do result from an impaired immune system. Who knows where that came from?
Jeff sent me a copy of a medical advisory sheet Anne's uncle, Sean, received several years ago in Ireland when he was diagnosed with the same thing. It warns CLL (chronic lymphocytic leukemia) patients to watch out for shingles. It all sort-of fits.
So, the more I read and the more I piece together the puzzle, it seems to come down to really taking care of my immune system through adequate sleep, better-than-good nutrition, and exercise.
After that, it's pot luck!
Monday, January 7, 2008
A bit of a puzzle
Today I went to see Dr. Reyes, my "primary care provider," to borrow the vocabulary of the health insurance industry. It seemed like a logical thing to do.
After all, a few days ago Dr. Olds (radiologist) had told me she thought my night time gagging was not a result of the two swollen lymph nodes just above my Adam's apple, but rather a result of enlarged tonsils. And, she said, neither radiation nor surgical removal was a good idea (for now). Funny that she saw enlarged tonsils, but the ear, nose, throat specialist, Dr. Lee, had not, back in late December, just after the biopsy surgery.
Swell. So what do I do about reducing the size of the tonsils so I can actually breathe while sleeping (a novel idea, no)?
So this past weekend I spent a bit of time reading about tonsilitis and tonsilectomies. Come to find out, tonsils are lymph nodes, just big ones with their own name. I never knew that. Plus, tonsilitis can cause enlarged [other] lymph nodes.
One Web site said: "Infected tonsils are a result of a reduced immune system, not the cause of it," or words to that effect. And, elsewhere, there is a common connection between infected tonsils and inner ear infections/problems. Interesting. I have had a gradually worsening inner ear itch for more than a year, but hadn't paid a heck of a lot of attention to it. I had bigger fish to fry than that, I thought.
So, then, what to do about it all?
Off I went to Dr. Reyes to see if maybe he might prescribe a blast of antibiotics to clear up the tonsilitis.
"I'm not impressed with your tonsils," he said, meaning they didn't look particularly enlarged to him.
"Huh? Dr. Olds said they were, and that was only four days ago. And I'm spitting up bits of tissue when I gargle with Listerine at night, plus the inner ear thing is bothering me even more lately. Is it possible that the tube they shoved down my throat for the biopsy surgery scraped my tonsils, but they healed a bit since Dr. Olds saw them four days ago?"
"Maybe," says Dr. Reyes. "But I don't think a prescription of antibiotics is in order now."
O.K., I guess. If you say so.
So what the heck am I gagging on at night?
And since the prescription by all the doctors, for both chronic lymphoma and tonsilitis (if there is that), is to do nothing, it looks like the only course of action available to me is "nutrition, exercise, sleep (still a problem there), and boost the immune system."
More reading to do. Lots more. Time to Google "boost immune system" and try to separate fact from quackery.
Time for bed.
After all, a few days ago Dr. Olds (radiologist) had told me she thought my night time gagging was not a result of the two swollen lymph nodes just above my Adam's apple, but rather a result of enlarged tonsils. And, she said, neither radiation nor surgical removal was a good idea (for now). Funny that she saw enlarged tonsils, but the ear, nose, throat specialist, Dr. Lee, had not, back in late December, just after the biopsy surgery.
Swell. So what do I do about reducing the size of the tonsils so I can actually breathe while sleeping (a novel idea, no)?
So this past weekend I spent a bit of time reading about tonsilitis and tonsilectomies. Come to find out, tonsils are lymph nodes, just big ones with their own name. I never knew that. Plus, tonsilitis can cause enlarged [other] lymph nodes.
One Web site said: "Infected tonsils are a result of a reduced immune system, not the cause of it," or words to that effect. And, elsewhere, there is a common connection between infected tonsils and inner ear infections/problems. Interesting. I have had a gradually worsening inner ear itch for more than a year, but hadn't paid a heck of a lot of attention to it. I had bigger fish to fry than that, I thought.
So, then, what to do about it all?
Off I went to Dr. Reyes to see if maybe he might prescribe a blast of antibiotics to clear up the tonsilitis.
"I'm not impressed with your tonsils," he said, meaning they didn't look particularly enlarged to him.
"Huh? Dr. Olds said they were, and that was only four days ago. And I'm spitting up bits of tissue when I gargle with Listerine at night, plus the inner ear thing is bothering me even more lately. Is it possible that the tube they shoved down my throat for the biopsy surgery scraped my tonsils, but they healed a bit since Dr. Olds saw them four days ago?"
"Maybe," says Dr. Reyes. "But I don't think a prescription of antibiotics is in order now."
O.K., I guess. If you say so.
So what the heck am I gagging on at night?
And since the prescription by all the doctors, for both chronic lymphoma and tonsilitis (if there is that), is to do nothing, it looks like the only course of action available to me is "nutrition, exercise, sleep (still a problem there), and boost the immune system."
More reading to do. Lots more. Time to Google "boost immune system" and try to separate fact from quackery.
Time for bed.
Thursday, January 3, 2008
No radiation treatment prescribed
I had an appointment today with a radiologist, Dr. Olds. I have to say I was pretty impressed with her thoroughness and unhurried approach.
She examined me pretty thoroughly and said--basically--that she sees no compelling reason to employ radiation treatment to shrink any lymph nodes. She does not think the two enlarged lymph nodes just above my Adam's apple are the cause of my windpipe problems when trying to sleep.
She said--surprise, surprise--that she thinks the real cause is enlarged tonsils!
O.K., then, what are the options for fixing that? Remove them? She telephoned Dr. Lee (right then and there), the ear, nose, throat surgeon who removed the two lymph nodes for biopsy, and the two of them concluded that removal of the tonsils was probably not a good idea.
"Could the tonsils be getting enlarged as a part of the lymphoma?" I asked.
She said it was unlikely, but the only way to know for certain was to do a partial removal for biopsy and if you were going to that much work, you might as well completely remove them, which they had already concluded was not a good idea. Apparently tonsils are not commonly removed nowadays, even in kids, and it is an especially bad idea in adults.
I need to do more reading about that.
So what does that leave for "fixing" the sleep problem? Maybe "more of same," which, lately, has been a pre-bedtime routine of benadryl, Listerine gargling, menthol cough drops, and breathing strips across the nose (to open up a deviated septum from an old broken-nose baseball injury). OR get one of those CPAP air pumps that the sleep clinic prescribed (but almost killed me) and try to get used to it.
Lots to think about.
How ironic: my sleep problem had nothing whatever to do with the lymphoma, apparently. The lymphoma just happened to get discovered along the way.
She examined me pretty thoroughly and said--basically--that she sees no compelling reason to employ radiation treatment to shrink any lymph nodes. She does not think the two enlarged lymph nodes just above my Adam's apple are the cause of my windpipe problems when trying to sleep.
She said--surprise, surprise--that she thinks the real cause is enlarged tonsils!
O.K., then, what are the options for fixing that? Remove them? She telephoned Dr. Lee (right then and there), the ear, nose, throat surgeon who removed the two lymph nodes for biopsy, and the two of them concluded that removal of the tonsils was probably not a good idea.
"Could the tonsils be getting enlarged as a part of the lymphoma?" I asked.
She said it was unlikely, but the only way to know for certain was to do a partial removal for biopsy and if you were going to that much work, you might as well completely remove them, which they had already concluded was not a good idea. Apparently tonsils are not commonly removed nowadays, even in kids, and it is an especially bad idea in adults.
I need to do more reading about that.
So what does that leave for "fixing" the sleep problem? Maybe "more of same," which, lately, has been a pre-bedtime routine of benadryl, Listerine gargling, menthol cough drops, and breathing strips across the nose (to open up a deviated septum from an old broken-nose baseball injury). OR get one of those CPAP air pumps that the sleep clinic prescribed (but almost killed me) and try to get used to it.
Lots to think about.
How ironic: my sleep problem had nothing whatever to do with the lymphoma, apparently. The lymphoma just happened to get discovered along the way.
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