Saturday, February 10, 2018

An update (all good), some reflection (humbling) and some "how to read your labs" stuff

Hi there everybody! I'm sorry that I've been off the face of the earth here for some time. I think you can chalk it up to a lack of interesting news to report. I continue -- as far as I know -- in stringent complete remission including a resolved MRI, which is as good as it gets. I am scheduled to return to Mt. Sinai in May to undergo standard-issue follow-up testing. My local oncologist is retiring in April, so I will need to find a new person here to follow me more closely. I do have concerns that Dr. Barlogie may retire in the next few years and I have to consider carefully where to go for follow-up. That will be the subject of a future post, perhaps, as part of an overall reflection on the fate of Total Therapy in a post Bart world. :)

So that's the news on me.

I'm humbled because in January of this year, not one but two of my dearest friends were diagnosed out of nowhere with dire conditions. Both otherwise healthy, both relatively young (52, 53), both watch what they eat, neither smokes, both are fit. One of them had a headache out of nowhere that wouldn't go away and three days later learned it is a stage 4 glioblastoma multiforme (terminal brain cancer); the other who was literally helping me with the first friend two weeks ago lost feeling in her left arm and went for a PET and they found she has stage 4 fully metastasized lung cancer which has involved almost every body in her body, her kidney, her liver, and her brain (that was the losing feeling part). She appears to be VERY fortunate that she falls into a category of 4-7% of patients with small cell lung cancer that have a particular type of genetic mutation that responds to a just-approved FDA drug. It will at least buy her time...for a moment there it looked like she might have just a matter of a few weeks.

The message here, for Myeloma sufferers, is that as horrible as our condition is, it is not a death sentence. It is a challenge, and some of us will be unfortunate and have adverse characteristics to our disease, but most will be able to manage the disease for several years even with conservative treatment that isn't pursue with cure in mind, and with the pace of progress, in several years there will likely be more cures. It's a terrible condition, to be sure...but it's not stage 4 brain cancer and it's not stage 4 metastasized lung cancer.

So 1. as bad off as we have it, it could be worse, and 2. hug your loved ones. Life is precious and every day is a gift.

Here endeth the dime-store philosophy.

I have been chatting with a number of newly diagnosed patients recently, and just this morning a friend pinged me out of the blue since he just learned that a close friend of his had been diagnosed. That person (as we all do / did) has a steep learning curve, and as I was going to explain to her how to look at her labs, I thought I might as well do it here, since it might be of service to others, and since it gives me an excuse to update my blog.

So here goes. I'm rusty, so if people out there want to correct me if I screw up, I won't be offended. :)

Our immune system contains a spectrum of protein in the blood and bone marrow, called immunoglobulins, that help identify and respond to enemies of the body (viruses, bacteria, fungi, etc.). These proteins are measured in the blood.

Myeloma is a disease that occurs when one cell in this spectrum of proteins malfunctions, and begins to replicate out of control, eventually crowding out the healthy purposeful parts of our immune system and indeed our blood supply. It also has the impact of destroying bone tissue, both by interfering with certain processes of normal bone regeneration and by setting up shop in the marrow and establishing tumors that eat the bone tissue.

Myeloma is many different kinds of disease, based both on what part of this spectrum of proteins contains the malfunction, which part of the individual protein has gone wrong, and then the nature of the genetic mutation that triggers the problem. The last of these is the most complex and most indicative of how well existing treatments respond to the disease. Let's break this down as best we can.

The spectrum of immunoglobulins are sorted by various names...alpha, beta, gamma, delta, etc.  So the first designation of Myeloma is according to this system. IgG, for example, indicates that the malfunctioning protein is in the gamma region of that spectrum. It's the largest piece of immunoglobulin spectrum and is the most common form of the disease. I had IgG myeloma, for one.

Next, the disease is described according to what part of the protein is corrupted. An antibody molecule can be considered to look like a Y. The trunk of the Y is called the "heavy chain" part of that molecule. Each of the little stems from the Y are the "light chains" of the molecule. One is called lambda, the other is kappa. When cels go through a normal lifecycle, they die and vanish from the blood. However cancerous cells will not go completely away -- there will be a growing residue of light chains observable in the blood (and the urine) that correspond to the nature of the cancer and what part of the molecule it effects. So the second designation of the disease is either lambda or kappa depending on what part is effective. I had IgG Lambda. Lambda is slightly more common than Kappa, but the designation has no bearing on prognosis.

Lastly, and most importantly, the disease is described through an analysis of the genetic structure of the cancerous cells. The process of analyzing this is called cytogenetics and it is incredibly complex, and I will leave it for another post. But the real determinant of how aggressive or treatment-resistant a person's Myeloma might be is found in the genetic code of the cancerous cells.

Okay, so how does a newly diagnosed patient recognize what's going on in bloodwork and where the Myeloma can be tracked, as well as its impact on the body?

The primer for that...will be in the next post, probably this evening. :)

14 comments:

  1. Nick, I am going to make an appointment with Dr. Barlogie (or Dr Anderson in Boston.) I've had Mgus for a number of years but things might be progressing. Do you think Dr. Barlogie is the best? Have you found someone else if he retires? Thanks a lot.

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  2. Nick, great to hear you are doing well! I check back often for updates. I would be very interested in talking to you RE: Dr. Barlogie. My local Onc is leaving the area and it also got me thinking about needing to consider my post-Bart care as well.

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  3. Nick, great to find your posting. Have not checked for a few months. My beloved specialist also retired as did my local oncologist. I would be very interested to hear what research and choices you have made; especially since we are both in SoCal and went out of state for treatment. You to Bariloge and me to Tricot.

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  4. Nick, wonderful article & very nicely explained. A member of our family is recently diagnosed with kappa type myeloma & is receiving treatment under Dr. Morgan at UAMS. Hope he also goes into remission. Please keep enriching our knowledge.

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  5. My wife has been a patient of Dr. Morgan at UAMS; in fact we were told she was his “first” patient at the Myeloma Institute in 2015. Today we received a letter from Dr. van Rhee at the Institute saying Dr. Morgan was going to focus on research and was not currently seeing patients at UAMS. This prompted some research online where we discovered his medical license in Arkansas had not been renewed since June 8, 2018. VERY disappointed that it has taken the Myeloma Institute until September 1 to inform us she didn’t have her doctor any more.

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  6. ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM MYELOMA
    Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from myeloma. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her myeloma and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from myeloma. and now she very mush okay without any side effects whatsoever, If you have myeloma , you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

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  7. Love the myeloma 101 lesson. Thanks for posting!

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  9. I am Shelley from Los Angeles,California, I want to testify on how i got cured from myeloma, I have suffered from myeloma since the year 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the pain until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including myeloma , at first i doubted if it we be able to cure me , but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from myeloma just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from myeloma you can contact him through his email on drwilliams098675@gmail.com for help.

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  10. Nick, would really love an update to close out 2018. Hope you continue to do well.

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  11. ALL THANKS TO DR WILLIAMS
    I was diagnosed of myeloma in 2011, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor , who prepare herbal medicine to cure different kind of diseases including myeloma , when i contacted this herbal doctor via his email, he sent me the myeloma herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed by Dr Williams i was totally cured from this disease within 1 months of usage. any body with similar problem can Contact this great herbal doctor via his email drwilliams098675@gmail.com for advice and for his product,and thanks to you admin for such an informative blog.

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  12. I found out that I had multiple myeloma when I was 35 years old. I was always tried and just could not get enough energy to do much of anything. When I fell and could not walk for more than a month is when my family found out something was wrong. During this time, I almost lost my life because my kidney was shutting down, and I still could not walk. My husband then took me to another hospital where they found out that I had MM. After already going through one bone marrow transplant, 17 treatments of radiation, a blood transfusion, and chemo. We have been dealing with this for four years with minimal side affects. I have to find a new treatment. I searched the internet every day, Reading and Bookmarking blogs, following comments of people with (MM) and blogs they shared. My breakthrough came the day I read a testimony about someone who was cured from multiple myeloma through HERBAL Medication. I read another multiple myeloma patient testimony being cured through the doctor’s herbal medication. During my research, his name popped up a couple times. I contacted the doctor Fabian and used the medication. My multiple myeloma became a story after 6 months of use the medicine and with his supervision. I'm cured, I did not die. I am here, I have my family always by my side. So much to live for. Trust in a cure. Contact him at whatsApp +1 (936) 242-0157 or dr.fabienconstantin@yahoo.com

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  13. As a sign of gratitude for how my wife was saved from myeloma, i decided to reach out to those still suffering from this.
    My wife suffered myeloma in the year 2016 and it was really tough and heartbreaking for me because she was my all and the symptoms were terrible, she always complain of bone pain, and she always have difficulty falling asleep . we tried various therapies prescribed by our neurologist but none could cure her. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and they left the contact of this doctor who had the cure to myeloma . I never imagined myeloma has a natural cure not until i contacted him and he assured me my wife will be fine. I got the herbal medication he recommended and my wife used it and in one months time she was fully okay even up till this moment she is so full of life. myeloma has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks admin for such an informative blog.

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