I have received a couple of interesting emails lately regarding the connection between MM and autoimmune diseases, including Lyme Disease. One writer, Kate, has IGA Lambda MM with the t(4;14) translocation, as I have. While she says she does not have Lyme, she suffers from a variety of symptoms that her doctors say are autoimmune related. (I wonder if she might actually have a case of undiagnosed Lyme. Since the tests are so unreliable, there may be no way to know for sure.) Her oncologist acknowledges an association between autoimmune disorders and MM, but the MM experts don't know what the relationship is yet. She has also read that IGA MM patients have higher rates of both autoimmune diseases and t(4;14) translocations than other types. Interesting. This just adds more fuel to the fire about this type of connection, as far as I'm concerned.
Today I received a fascinating comment on one of my earlier posts about Lyme Disease. Dee has been treated for Lyme Disease several times, but she feels she had undiagnosed Lyme before that. She continues to have the usual range of symptoms indicating chronic Lyme. Fortunately, she is seeing a Lyme-literate doctor.
This year, she was diagnosed with an extremely rare disease: necrobiotic xanthogranuloma (NXG). Only about 125 cases a year are reported for this disease, and most of the literature is from Europe, primarily by those in the Lyme Disease community. However, NXG has been found to have a very high correlation with MM. She went to an oncologist and found she had elevated monoclonal protein. After a bone marrow biopsy (BMB), she was found to have Smoldering Myeloma (SM), and they also found Lyme bacteria Borrelia burgdorferi (Bb) spirochetes in her bone marrow! Wow!
This seems to establish a potential triad between Lyme Disease, NXG, and Multiple Myeloma. In fact, I found a paper establishing this 3-way link: http://www.medscape.com/viewarticle/721924_5. In a retrospective study, 80% of NXG patients showed monoclonal gammopathies. Furthermore, the paper states, "NXG biopsies suggested the presence of Borrelia spirochetes in six of seven samples, implicating spirochetes as a potential trigger for NXG".
Right now, my head hurts trying to assimilate all this information. While NXG is very rare, this reveals one probable pathway between Lyme Disease and myeloma, showing that the Lyme Bb instigates the NXG, which in turn instigates the monoclonal gammopathy. This implies cause and effect, not merely correlation. Bb is an extremely complicated and resourceful bacterium. It has many deleterious effects on the human body (as I myself have discovered), but I remain convinced that one of the more pernicious effects is that Lyme Disease is a potential trigger for monoclonal gammopathies, including MGUS, SM, and MM. I'm sure I will be blogging about this more as I gather more information on this topic.
Tomorrow I am headed up to the family farm in Champlain, NY for a relaxing weekend with my son, Jeff, and good friend, Bobby. Since we don't have good wireless connections there, I may miss a good blog talk radio show tomorrow night at 6:00 featuring Dr. Paul Richardson. Here is the link: http://www.blogtalkradio.com/dr-paul-richardson-discusses-myeloma. The topic is To Transplant or Not To Transplant: Thats the Question. Fellow blogger Pat Killingsworth is one of the panelists. I already know Paul's view on this, as we have discussed it at length. However, it is a hot topic of conversation these days in the MM community. Several clinical trials are underway to help answer this question (including the one I am on), so it will be interesting to see if there are any new developments on this topic. If I miss it, I hope someone will fill me in on it, or I can view it later.
Wednesday, October 23, 2013
Wednesday, October 16, 2013
DVT Risk
One of the side effects of my Revlimid treatment is the risk of a deep vein thrombosis (DVT), which is a blood clot which usually forms in the legs. Such a clot could break loose and travel to the lungs, causing a pulmonary embolism. That would not be a good thing. My friend, Bobby, had one of these a few years ago, and it was pretty serious. Fortunately, he is now fine. I have been taking a full dose of aspirin every day since being on Rev to minimize the chance of a DVT. Every month during my physical exam at the Farber, they check to see if there is any pain or tenderness in my lower legs, which might indicate a potential DVT.
Today in the shower, I noticed that my right lower leg was very sensitive to the touch about 8 inches above the ankle. Hmmm. I didn't notice any swelling, warmth, or redness, so I wasn't too concerned. However, I plan to monitor this very closely.
I went online to see what was published about this, and I found this recent article in the Myeloma Beacon addressing this issue: blood-clots-multiple-myeloma-thalidomide-revlimid/. The bottom line is that aspirin has been found not to be that effective in preventing blood clots for these patients. About 7% of patients who take aspirin on long-term Revlimid therapy still develop blood clots, about the same percentage as those who don't take any blood thinners. However, those taking heparin or Coumadin fared much better. Hmmm. If this gets any worse, I will definitely call Mary at the Farber for advice. Stay tuned.
Today I had a followup visit for my knee. Fortunately, the cortisone shot for the osteoarthritis (OA) is still working, so it feels pretty good. I played 9 holes of golf yesterday walking with my pull cart and had no issues with the knee at all. I told Frank, the physician's assistant, that I felt about 85% back to normal (not 85% better, as I rambled on about in a previous blog post). He was pleased, and said most people get about 4-6 months improvement from the cortisone. The next question is what to do when it wears off. Another cortisone shot is the most obvious next step, especially if this one lasts a long time. At some point though, that may not work any more.
One alternative would be knee replacement surgery (gulp!). I have no intention of going in that direction. Just look at the surgery scars in the picture. Fuggetaboutit! I don't plan on entering any iron-man triathlons, so just getting around without much pain will work just fine for me.
The next step would be injections of hyaluronic acid, which can provide up to 6 months or more of pain relief for OA. This is sometimes referred to as "motor oil" for the knee, as it replaces the lost joint fluid causing the pain from OA. This typically requires 3 weekly injections to lubricate the knee joint. My doctor uses a brand called Orthovisc. Our good friend, Marilyn, has a similar knee problem to mine, and she has had two injections of a similar brand, Synvisc, over the past four years with great results. As of now, however, my knee feels OK, so I'll just keep that option in my back pocket.
I have been remiss in setting up a physical therapy (PT) appointment to help rehabilitate my knee, so today I made an appointment for early November. I hope to go to a couple of sessions to find out what exercises will help the most, and then perhaps continue them at home or at the gym. We'll see.
Today in the shower, I noticed that my right lower leg was very sensitive to the touch about 8 inches above the ankle. Hmmm. I didn't notice any swelling, warmth, or redness, so I wasn't too concerned. However, I plan to monitor this very closely.
I went online to see what was published about this, and I found this recent article in the Myeloma Beacon addressing this issue: blood-clots-multiple-myeloma-thalidomide-revlimid/. The bottom line is that aspirin has been found not to be that effective in preventing blood clots for these patients. About 7% of patients who take aspirin on long-term Revlimid therapy still develop blood clots, about the same percentage as those who don't take any blood thinners. However, those taking heparin or Coumadin fared much better. Hmmm. If this gets any worse, I will definitely call Mary at the Farber for advice. Stay tuned.
Today I had a followup visit for my knee. Fortunately, the cortisone shot for the osteoarthritis (OA) is still working, so it feels pretty good. I played 9 holes of golf yesterday walking with my pull cart and had no issues with the knee at all. I told Frank, the physician's assistant, that I felt about 85% back to normal (not 85% better, as I rambled on about in a previous blog post). He was pleased, and said most people get about 4-6 months improvement from the cortisone. The next question is what to do when it wears off. Another cortisone shot is the most obvious next step, especially if this one lasts a long time. At some point though, that may not work any more.
One alternative would be knee replacement surgery (gulp!). I have no intention of going in that direction. Just look at the surgery scars in the picture. Fuggetaboutit! I don't plan on entering any iron-man triathlons, so just getting around without much pain will work just fine for me.The next step would be injections of hyaluronic acid, which can provide up to 6 months or more of pain relief for OA. This is sometimes referred to as "motor oil" for the knee, as it replaces the lost joint fluid causing the pain from OA. This typically requires 3 weekly injections to lubricate the knee joint. My doctor uses a brand called Orthovisc. Our good friend, Marilyn, has a similar knee problem to mine, and she has had two injections of a similar brand, Synvisc, over the past four years with great results. As of now, however, my knee feels OK, so I'll just keep that option in my back pocket.
I have been remiss in setting up a physical therapy (PT) appointment to help rehabilitate my knee, so today I made an appointment for early November. I hope to go to a couple of sessions to find out what exercises will help the most, and then perhaps continue them at home or at the gym. We'll see.
Monday, October 7, 2013
Farber, Knee, and LLS
After several weeks of relative quietude on the blogging front, I have more topics to cover today. This morning I had my monthly Farber appointment. I hadn't bothered to look at the schedule in detail--I just knew I had to be there at 10:15. When I got there and finally checked the appointments, I found there was good news and bad news. The good news was that I was scheduled to meet with Dr. Richardson! The bad news was that I was scheduled to meet with Dr. Richardson! The good part was that I haven't seen him since May, and I was delighted to have the opportunity to talk to him again directly about my situation. The bad part was that I knew it was going to be a long day.
While I was waiting, I met with Muriel. My numbers this month were great! The pathology results from last month confirmed no monoclonal gammopathy again, meaning I'm still in remission. The bilirubin, which I was concerned about last month, dropped from 1.7 to 1.0, back in the normal range. Muriel said that a number of patients on Rev maintenance have had similar random jumps in bilirubin with no apparent cause. While a high bilirubin can be indicative of liver problems, none of my other liver indicators are out of line, so it may just be a spurious side effect of the Revlimid. (Phew! I'll drink to that.) My neutrophil count continues to be great at 2.45, well into the normal range, despite the fact that I am taking Rev every day. Almost everything else was in the normal range. The only negatives were my HCT and Hgb counts, which have both dropped somewhat, which means my anemia is not getting any better. That may explain why I still need 9-10 hours of sleep every night, and I still often nap during the day. You know what? It's a small price to pay for how good I've been feeling.
By the way, my knee still feels great! I totally forgot to bring in the CDs with my Xrays and MRIs. Damn! Anyway, Muriel said that it was no big deal, because it won't affect any of my treatments at the Farber. They just want them for complete records, so hopefully, I'll remember to bring them next time. (Siri, remind me!) However, she did strongly suggest that I take advantage of the PT prescription I got from the ortho doc. It can only help, and after the cortisone wears off, it would be good to have built up some of the surrounding muscle. I can't say I disagree, so maybe I'll try it out for a session or two, and maybe I can continue to do the appropriate exercises at the gym on my own.
I'm glad I brought my computer and Kindle, so I was able to surf the Net and read while waiting for Dr. Richardson. He finally arrived at 1:50, two hours and 50 minutes behind schedule. I was thinking that might have set a new record for promptness, but not so. I checked my records, but in May he was only two hours and 40 minutes behind. It was definitely worth the wait though, as it always is.
After his examination, Dr. Richardson's overall assessment is that I am doing great! He also thinks that I am looking really good. It's nice to hear these words from him, because in the past he has been very blunt when he thinks otherwise. I left the meeting with him feeling super! Have I ever mentioned that I am really grateful that he is my doctor?
While waiting for Richardson, I perused the DFCI internal publication, "Inside the Institute", which had an interesting article about a $6 million grant from the Leukemia and Lymphoma Society (LLS) to Dr. Irene Ghobrial, one of Richardson's colleagues, to study the biology of clonal evolution of MM to help develop drugs to prevent the progress of the malignancies. The objective is to help find ways to prevent the progression of precursor conditions (such as MGUS and Smoldering Myeloma) to full blown MM, by finding why MM cells attack the bone marrow and what factors instigate the clonal mutations causing the malignancies. If such an approach could successfully stymie progression from precursor MM to active MM, perhaps the same approach could also help prevent those in remission from relapsing. I don't know, but it occurs to me that it would be a reasonable possibility. I'm excited by this research direction, and from all I have read so far about this, I feel that in addition to the powerful new drugs becoming available, treating clonal mutation abnormalities at the molecular level will eventually lead to individualized treatment regimens and potentially a cure for MM.
I brought this subject up with Dr. Richardson, and he acknowledged that the entire Farber team is involved in this research, and it is a very promising endeavor. Let's just hope!
While I was waiting, I met with Muriel. My numbers this month were great! The pathology results from last month confirmed no monoclonal gammopathy again, meaning I'm still in remission. The bilirubin, which I was concerned about last month, dropped from 1.7 to 1.0, back in the normal range. Muriel said that a number of patients on Rev maintenance have had similar random jumps in bilirubin with no apparent cause. While a high bilirubin can be indicative of liver problems, none of my other liver indicators are out of line, so it may just be a spurious side effect of the Revlimid. (Phew! I'll drink to that.) My neutrophil count continues to be great at 2.45, well into the normal range, despite the fact that I am taking Rev every day. Almost everything else was in the normal range. The only negatives were my HCT and Hgb counts, which have both dropped somewhat, which means my anemia is not getting any better. That may explain why I still need 9-10 hours of sleep every night, and I still often nap during the day. You know what? It's a small price to pay for how good I've been feeling.
By the way, my knee still feels great! I totally forgot to bring in the CDs with my Xrays and MRIs. Damn! Anyway, Muriel said that it was no big deal, because it won't affect any of my treatments at the Farber. They just want them for complete records, so hopefully, I'll remember to bring them next time. (Siri, remind me!) However, she did strongly suggest that I take advantage of the PT prescription I got from the ortho doc. It can only help, and after the cortisone wears off, it would be good to have built up some of the surrounding muscle. I can't say I disagree, so maybe I'll try it out for a session or two, and maybe I can continue to do the appropriate exercises at the gym on my own.
I'm glad I brought my computer and Kindle, so I was able to surf the Net and read while waiting for Dr. Richardson. He finally arrived at 1:50, two hours and 50 minutes behind schedule. I was thinking that might have set a new record for promptness, but not so. I checked my records, but in May he was only two hours and 40 minutes behind. It was definitely worth the wait though, as it always is.
After his examination, Dr. Richardson's overall assessment is that I am doing great! He also thinks that I am looking really good. It's nice to hear these words from him, because in the past he has been very blunt when he thinks otherwise. I left the meeting with him feeling super! Have I ever mentioned that I am really grateful that he is my doctor?
While waiting for Richardson, I perused the DFCI internal publication, "Inside the Institute", which had an interesting article about a $6 million grant from the Leukemia and Lymphoma Society (LLS) to Dr. Irene Ghobrial, one of Richardson's colleagues, to study the biology of clonal evolution of MM to help develop drugs to prevent the progress of the malignancies. The objective is to help find ways to prevent the progression of precursor conditions (such as MGUS and Smoldering Myeloma) to full blown MM, by finding why MM cells attack the bone marrow and what factors instigate the clonal mutations causing the malignancies. If such an approach could successfully stymie progression from precursor MM to active MM, perhaps the same approach could also help prevent those in remission from relapsing. I don't know, but it occurs to me that it would be a reasonable possibility. I'm excited by this research direction, and from all I have read so far about this, I feel that in addition to the powerful new drugs becoming available, treating clonal mutation abnormalities at the molecular level will eventually lead to individualized treatment regimens and potentially a cure for MM.
I brought this subject up with Dr. Richardson, and he acknowledged that the entire Farber team is involved in this research, and it is a very promising endeavor. Let's just hope!
Tuesday, October 1, 2013
Overdue Update
One of my loyal readers emailed me yesterday saying she misses seeing frequent updates to my blog, which was a nice way of telling me to get off my lazy ass and start writing. Guilty as charged! I don't why I took this little vacation. It's not that I'm so busy that I can't fit writing this blog into my crammed schedule of meetings and social events. As a matter of fact, as I look over my calendar, it is nearly blank, sad to say. No, just a little laziness and procrastination. Over the years, I have elevated the process of procrastinating to a fine art, sometimes to my chagrin. In any case, I'm back.
When we last left the saga of my thrilling adventures, I had just left the orthopedic doctor's office with a shot of cortisone in my right knee. Wow! That's pretty good stuff. My knee immediately felt better, and it still does. I can now walk and negotiate stairs with minimal pain. I even walked a 9-hole golf course a few days ago with no discernible aftereffects. It's still not perfect, but it's "100% better", as they say.
Now that I think of it, I'm not sure what 100% better is supposed to mean. Better than what? For example, if I started out only 5% good and got 100% better, I would still only be 10% good, right? Conversely, if I started out 90% good, I'd only have to get better by 11.1% to be perfect again. Maybe I just have an odd way of looking at things. Anyway, I digress.
By the way, a cortisone shot in the knee is no walk in the park. However, on a relative scale, it sure beats the shit out a bone marrow biopsy. I'm not sure how long this cortisone shot will last. The physicians assistant said it could last anywhere from 3 weeks to 3 years. Typically, I guess 6 months would be a reasonable expectation. After that, I don't know what might come next. In the mean time, I'll try not to do anything too strenuous with it.
I'm feeling really good, although I still sleep more than I used to. I've pretty much adjusted to that. Yesterday I got my flu shot and next Monday, I go back to the Farber for another monthly checkup and Zometa infusion. That will begin the 15th month of my clinical trial maintenance therapy with the 5 mg of Revlimid daily. If I can stay in remission for another 22 months, then I can go off the Rev completely, and maybe the Zometa as well. I'm looking forward to that. I'm very upbeat about how everything has gone so far. In fact, as a testament to my optimism, I just took the plunge and renewed my AARP membership for another 5 years!
The writing seminar at the Farber has started up again for the fall. Unfortunately, I missed the September workshop because of my knee appointment. I hope to be able to attend the October one on the 28th. I could use a shot in the arm to bolster my inspiration to keep writing..
When we last left the saga of my thrilling adventures, I had just left the orthopedic doctor's office with a shot of cortisone in my right knee. Wow! That's pretty good stuff. My knee immediately felt better, and it still does. I can now walk and negotiate stairs with minimal pain. I even walked a 9-hole golf course a few days ago with no discernible aftereffects. It's still not perfect, but it's "100% better", as they say.
Now that I think of it, I'm not sure what 100% better is supposed to mean. Better than what? For example, if I started out only 5% good and got 100% better, I would still only be 10% good, right? Conversely, if I started out 90% good, I'd only have to get better by 11.1% to be perfect again. Maybe I just have an odd way of looking at things. Anyway, I digress.
By the way, a cortisone shot in the knee is no walk in the park. However, on a relative scale, it sure beats the shit out a bone marrow biopsy. I'm not sure how long this cortisone shot will last. The physicians assistant said it could last anywhere from 3 weeks to 3 years. Typically, I guess 6 months would be a reasonable expectation. After that, I don't know what might come next. In the mean time, I'll try not to do anything too strenuous with it.
I'm feeling really good, although I still sleep more than I used to. I've pretty much adjusted to that. Yesterday I got my flu shot and next Monday, I go back to the Farber for another monthly checkup and Zometa infusion. That will begin the 15th month of my clinical trial maintenance therapy with the 5 mg of Revlimid daily. If I can stay in remission for another 22 months, then I can go off the Rev completely, and maybe the Zometa as well. I'm looking forward to that. I'm very upbeat about how everything has gone so far. In fact, as a testament to my optimism, I just took the plunge and renewed my AARP membership for another 5 years!
The writing seminar at the Farber has started up again for the fall. Unfortunately, I missed the September workshop because of my knee appointment. I hope to be able to attend the October one on the 28th. I could use a shot in the arm to bolster my inspiration to keep writing..
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