Yesterday morning Gretchen and I fought miserable weather and rush-hour traffic conditions driving to the Farber for my scheduled infusion of iron dextran. The total procedure took over 5 hours, so we had the pleasure of hitting the afternoon traffic on our way home as well. Fortunately, I had no side effects or allergic reactions and the procedure went smoothly. Hopefully, this will solve my persistent anemia without the need for any more iron pills. We'll see. I head back to the Farber again on Monday for my monthly checkup and Zometa infusion. Mary McKenney didn't want me to get the iron dextran and Zometa on the same day, necessitating the two trips.
I keep getting comments on my blog post from August 28, 2012 entitled "Myeloma-Lyme Connection? I Say Yes!" I suspected that the reason for this is that people searching for any connection between Lyme Disease and MM must come across that particular post. To check that, I Googled "multiple myeloma lyme connection". Guess what the number 1 Google result is. Yup, that's the one! I don't know how it got there (I sure didn't pay Google to push it up the list), but I'm glad because it keeps attracting comments. I try to respond to these comments, so the result is a continued dialog between me and other Lyme/MM sufferers. I got another thoughtful comment the other day from a woman whose 15-year old daughter was seriously ill with Lyme Disease and had MGUS as well. After extensive treatment for the Lyme, the MGUS disappeared. Hmmmm.
I followed up with the Multiple Myeloma Research Foundation (MMRF) as I said I would in my last post. I talked to an RN Millicent and suggested that they should change their list of general health categories to include Lyme Disease and other autoimmune disorders. While she was polite, I detected a distinct lack of enthusiasm for my suggestions. She said she would follow up, but I don't expect to hear back any time soon. My next step is to start sending emails in the hope of getting some positive response. I'll let you know what happens.
While at the Farber yesterday, I read an article in their newsletter about a novel compound the prevents MM from metastasizing into the bones. Myeloma cells originate in the bone marrow, get into the blood stream, and eventually return to the bones, where they can form numerous lesions. A substance called stromal cell-derived factor-1 (SDF-1) is a protein that attracts myeloma cells. Mice with advanced MM had sharply higher levels of SDF-1 in the sites in their bones where metastasis had occurred. Farber researchers, headed by Dr. Irene Ghobrial, are testing a substance called olaptesed pegol that binds tightly and specifically to SDF-1. Lab experiments with mice have shown that olaptesed pegol alters the bone marrow, rendering it uninviting to myeloma cells, leading to prolonged survival. It is now being tested in a clinical trial with MM patients, with more trials to come. Great! I'll keep an eye out for results from these trials.
Friday, October 24, 2014
Wednesday, October 15, 2014
More on Lyme
I just got a recent email from a woman who titled her email "Lyme m spike". She had found a elevated m spike in her urine and wanted to talk to me. She said she has not felt well for many years. Does that sound familiar to those of you in the chronic Lyme community? Anyway, she hasn't talked to me yet, probably out of fear. She emailed me to say she was afraid to call me because she wasn't sure if she had MM and didn't want me to scare her any further. I wrote back to her that she might have a precursor condition, and she should find out her status as soon as possible. Sadly, I have not heard back from her. Many people, faced with a possible bad diagnosis, put their heads in the sand and refuse to deal with it. I hope to hear from her and I hope she follows up on her initial test results.
This email has triggered me to go back to revisit my long-felt connection between Lyme disease and MM. I belong to the Multiple Myeloma Research Foundation (MMRF,) which has enrolled a large number of MM patients to find some correlation between MM and prior medical problems. I have listed my profile with them. However, the list of medical problems identified in the list they provided for general medical conditions is pretty much useless. Under their category of General Health, they offer only 13 options. Of these, only 3 have had any positive response from MM sufferers: high blood pressure (31%), osteoporosis (15%), and diabetes (7%). Everything else was zero! 41% of the respondents listed "Other". I think the MMRF has missed the boat with this.
Let's just talk about the "Other". There is a lot of indication that autoimmune disease may be correlated with MM, as I have blogged about earlier. Today I emailed MMRF to expand their general health categories to include Lyme disease, along with some other autoimmune disorders, such as Lupis, etc. Furthermore, I would like the MMRF to fund some studies to investigate these links. I plan to follow up with this and hope to get more information that can be shared among the MM community looking for common links.
At the very least, I would like to see some protocols put in place to do early screening of blood protein levels for those patients presenting with Lyme disease or other autoimmune diseases. Early diagnosis would provide tremendous long-term benefits to those who have MM. I was lucky to have a PCP who noticed my elevated protein levels early and referred me to a hematologist before it got out of hand. Too many MM patients present with advanced symptoms, such as broken bones or kidney problems, when early screening would have helped to give early treatment and a better prognosis.
I'll let your know how the MMRF responds to my suggestions.
This email has triggered me to go back to revisit my long-felt connection between Lyme disease and MM. I belong to the Multiple Myeloma Research Foundation (MMRF,) which has enrolled a large number of MM patients to find some correlation between MM and prior medical problems. I have listed my profile with them. However, the list of medical problems identified in the list they provided for general medical conditions is pretty much useless. Under their category of General Health, they offer only 13 options. Of these, only 3 have had any positive response from MM sufferers: high blood pressure (31%), osteoporosis (15%), and diabetes (7%). Everything else was zero! 41% of the respondents listed "Other". I think the MMRF has missed the boat with this.
Let's just talk about the "Other". There is a lot of indication that autoimmune disease may be correlated with MM, as I have blogged about earlier. Today I emailed MMRF to expand their general health categories to include Lyme disease, along with some other autoimmune disorders, such as Lupis, etc. Furthermore, I would like the MMRF to fund some studies to investigate these links. I plan to follow up with this and hope to get more information that can be shared among the MM community looking for common links.
At the very least, I would like to see some protocols put in place to do early screening of blood protein levels for those patients presenting with Lyme disease or other autoimmune diseases. Early diagnosis would provide tremendous long-term benefits to those who have MM. I was lucky to have a PCP who noticed my elevated protein levels early and referred me to a hematologist before it got out of hand. Too many MM patients present with advanced symptoms, such as broken bones or kidney problems, when early screening would have helped to give early treatment and a better prognosis.
I'll let your know how the MMRF responds to my suggestions.
Thursday, October 2, 2014
Summer's End
In my last post, I said I was going to get an IV injection of Dextran iron at the Farber on Sept. 30. I'm sorry but I lied. I didn't do it. After making the appointment, I started thinking, "What am I doing?". This visit to the Farber would be the first time in over two years that I wouldn't need an IV, since I wasn't getting the Zometa this month. Yay! So why would I sign up for getting an IV that day? Furthermore, I wasn't scheduled to come in until 10:30, so I wouldn't have been able to start my Dextran until 12:30, a 5-6 hour procedure. Duh! I must have had a real brain fart when I signed up for that. So I decided to cancel that and reschedule.
As for my visit, all is good with my MM! The pathology results from last month showed that both my blood (SPEP) and urine (UPEP) test results showed no M-spike and no monoclonal protein. So I'm still good. However, my red blood cell counts weren't so stellar. My RBC dropped from 4.6 to 4.2, still in the normal range. However, my HCT dropped from 39.4 to 37.7, below the normal range. Also, my Hgb dropped from 12.9 to 12.6, also below the normal range. The upshot of all of this is despite all the iron pills I've been wrestling with over the last 9 months, I'm still slightly anemic. Jeesh! What is it with this?
I have to wonder if I am losing blood somehow. As far as I can recall, I haven't had any traumatic accidents involving significant blood loss. I still have all my limbs. Could it be from my colon? I had a colonoscopy in April 2013 which was clear, showing no polyps. So I should be good there, right? Hmmm. I have scheduled an annual (or is it a bi- or tri-annual) physical in a couple of weeks. I think I will bring subject this up with my PCP. Maybe this planned infusion of Dextran will solve the problem, but if I am slowly losing blood by some mechanism, that might only be a temporary solution. We'll see.
I've been kind of busy the last couple of weeks. Last weekend, Jeff and I went to the farm in New York. We had a great time cooking out, playing some golf, riding the ATV, and socializing with the neighbors. Then on Monday, Jeff and I went on a charter deep-sea fishing trip out of Gloucester, MA, organized by my good friend Paul Pakos. That was fun. I'm the only one on the boat who actually caught a rock! I also caught a pile of seaweed and a stick. I did catch one small pollock though. Between us, we caught enough pollock and red fish for us all to have a couple of meals from the catch. Yum! This Sunday, I plan to go sailing on Buzzard's Bay with another good friend, Lew, for 2 or 3 days. We may go to Vineyard Haven on Martha's Vineyard. I have to say that being retired doesn't suck.
The house-hunting is still going slowly. We've seen a couple of potential properties come on the market, but nothing has floated our boat yet. Tomorrow, we will visit one of the houses where we left a flyer who might be interested in selling, but we're not getting our hopes up. We'll see.
Fall is upon us. The trees are turning color and the leaves are starting to fall. There's a chill in the air now. Brrr! Now is the time to fertilize the lawn for the last time and get the boat out of the water for the winter. It's sad to see this wonderful summer come to an end. Sigh.
As for my visit, all is good with my MM! The pathology results from last month showed that both my blood (SPEP) and urine (UPEP) test results showed no M-spike and no monoclonal protein. So I'm still good. However, my red blood cell counts weren't so stellar. My RBC dropped from 4.6 to 4.2, still in the normal range. However, my HCT dropped from 39.4 to 37.7, below the normal range. Also, my Hgb dropped from 12.9 to 12.6, also below the normal range. The upshot of all of this is despite all the iron pills I've been wrestling with over the last 9 months, I'm still slightly anemic. Jeesh! What is it with this?
I have to wonder if I am losing blood somehow. As far as I can recall, I haven't had any traumatic accidents involving significant blood loss. I still have all my limbs. Could it be from my colon? I had a colonoscopy in April 2013 which was clear, showing no polyps. So I should be good there, right? Hmmm. I have scheduled an annual (or is it a bi- or tri-annual) physical in a couple of weeks. I think I will bring subject this up with my PCP. Maybe this planned infusion of Dextran will solve the problem, but if I am slowly losing blood by some mechanism, that might only be a temporary solution. We'll see.
I've been kind of busy the last couple of weeks. Last weekend, Jeff and I went to the farm in New York. We had a great time cooking out, playing some golf, riding the ATV, and socializing with the neighbors. Then on Monday, Jeff and I went on a charter deep-sea fishing trip out of Gloucester, MA, organized by my good friend Paul Pakos. That was fun. I'm the only one on the boat who actually caught a rock! I also caught a pile of seaweed and a stick. I did catch one small pollock though. Between us, we caught enough pollock and red fish for us all to have a couple of meals from the catch. Yum! This Sunday, I plan to go sailing on Buzzard's Bay with another good friend, Lew, for 2 or 3 days. We may go to Vineyard Haven on Martha's Vineyard. I have to say that being retired doesn't suck.
The house-hunting is still going slowly. We've seen a couple of potential properties come on the market, but nothing has floated our boat yet. Tomorrow, we will visit one of the houses where we left a flyer who might be interested in selling, but we're not getting our hopes up. We'll see.
Fall is upon us. The trees are turning color and the leaves are starting to fall. There's a chill in the air now. Brrr! Now is the time to fertilize the lawn for the last time and get the boat out of the water for the winter. It's sad to see this wonderful summer come to an end. Sigh.
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