Building the Team: A Brief Journey to NYC (part one)
It's not because I'm all fancy and stuff (because I'm totally not), but I had an opportunity to meet with a doctor in NYC this past week. The visit was a long-short appointment and I got a lot of good and interesting information. The added benefit of my assignment to this doctor is that he is also the director of the Multiple Myeloma programme at Mount Sinai Hospital. I think that's important because some of the information imparted upon me could be called into question because it could be considered rather controversial to some folks.
I was told by my cousin, who works in marketing for the hospital's OB/GYN centre, that she told several colleagues about my appointment and they only had amazing things to say about my new doctor. I've since looked up additional information on him and I do believe that I was indeed lucky to be placed in his care.
There was a ton of information coming at my head as the doctor processed the data in my file. He called out to the nurse practitioner for some paper and he feverishly made notations to me about my condition and questioning some decisions that were made back home. I answered his questions as best I could and corrected his interpretation of the timeline over the last three years.
After he did that, he made some recommendations on changing my treatment regimen and the drugs prescribed. After doing so, he asked me for Dr. V's phone number. He called and left a message. Dr. V called about 5 minutes later, after finishing up with his 11:30 patient. Dr. J quickly got him up to speed and made his recommendations. Dr. V seemed very receptive of this information and the changes, so we'll see how my appointment with him goes this afternoon.
Kyrpolis, Darzalex, and two other meds whose names I cannot recall at the moment. It's possible that I will be saying goodbye to Revlimid and Velcade in the near future! Stay tuned...
Also ordered was a fresh bone marrow biopsy because everybody knows how enjoyable those are! This time, however, Dr. J has asked that they also examine a particular marker that is causing my "boutique version" of Myeloma so difficult to treat and manage. With this new information, my regimen may change even further, but that is fine by me if that gives me an upper hand on this mess.
One of things we discussed was the CAR-T cell therapy that is currently in trials. Firstly, he addressed the fact that I will likely never qualify for a trial because I am asecretory and they need to be able to track the data. We kind of expected that, so that was not news. Secondly, (and this is the part that may raise some eyebrows) is that Dr. J said to me that the CAR-T cell therapy appears to be panning out as a "failure" in that it is not holding promise to be the cure or long-term remission maker for those of us with Multiple Myeloma. This was startling to me as I'm sure it will be to you, but there it is from someone on the inside of the research facility for Celgene's study.
Now... Dr. J said a few things to that I've heard many times before, but perhaps in not such direct language. Yes, it's true that I am far more ill than I present. I've known this for--oh, as long as it's been since Dr. K handed me over to Dr. V back in early 2015. Dr. J just met me and he doesn't know me, and while this is clinically accurate, I do believe that my mental, emotional and spiritual conditions elevate my ability to function far better than my clinical/physical condition would otherwise dictate. He will eventually come to know the force of nature that is me.
Right! So I will be making a follow up appointment to see him again--hopefully on 1 October, a date that coincides with my office being closed and allowing me to not have to spend a vacation day on this. Good planning. Let's see if I can manage!
After the appointment wrapped up, I proceeded to walk about Manhattan, racking up a whopping 11.16 miles. Most of those miles were logged between noon and 5pm! The other two were tacked on when we ventured out for dinner that evening. And as I do, I strive to overachieve and will continue to do so. This is how I was built and so it shall be!
There was a ton of information coming at my head as the doctor processed the data in my file. He called out to the nurse practitioner for some paper and he feverishly made notations to me about my condition and questioning some decisions that were made back home. I answered his questions as best I could and corrected his interpretation of the timeline over the last three years.
After he did that, he made some recommendations on changing my treatment regimen and the drugs prescribed. After doing so, he asked me for Dr. V's phone number. He called and left a message. Dr. V called about 5 minutes later, after finishing up with his 11:30 patient. Dr. J quickly got him up to speed and made his recommendations. Dr. V seemed very receptive of this information and the changes, so we'll see how my appointment with him goes this afternoon.
Kyrpolis, Darzalex, and two other meds whose names I cannot recall at the moment. It's possible that I will be saying goodbye to Revlimid and Velcade in the near future! Stay tuned...
Also ordered was a fresh bone marrow biopsy because everybody knows how enjoyable those are! This time, however, Dr. J has asked that they also examine a particular marker that is causing my "boutique version" of Myeloma so difficult to treat and manage. With this new information, my regimen may change even further, but that is fine by me if that gives me an upper hand on this mess.
One of things we discussed was the CAR-T cell therapy that is currently in trials. Firstly, he addressed the fact that I will likely never qualify for a trial because I am asecretory and they need to be able to track the data. We kind of expected that, so that was not news. Secondly, (and this is the part that may raise some eyebrows) is that Dr. J said to me that the CAR-T cell therapy appears to be panning out as a "failure" in that it is not holding promise to be the cure or long-term remission maker for those of us with Multiple Myeloma. This was startling to me as I'm sure it will be to you, but there it is from someone on the inside of the research facility for Celgene's study.
Now... Dr. J said a few things to that I've heard many times before, but perhaps in not such direct language. Yes, it's true that I am far more ill than I present. I've known this for--oh, as long as it's been since Dr. K handed me over to Dr. V back in early 2015. Dr. J just met me and he doesn't know me, and while this is clinically accurate, I do believe that my mental, emotional and spiritual conditions elevate my ability to function far better than my clinical/physical condition would otherwise dictate. He will eventually come to know the force of nature that is me.
Right! So I will be making a follow up appointment to see him again--hopefully on 1 October, a date that coincides with my office being closed and allowing me to not have to spend a vacation day on this. Good planning. Let's see if I can manage!
After the appointment wrapped up, I proceeded to walk about Manhattan, racking up a whopping 11.16 miles. Most of those miles were logged between noon and 5pm! The other two were tacked on when we ventured out for dinner that evening. And as I do, I strive to overachieve and will continue to do so. This is how I was built and so it shall be!
To be continued...
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
ReplyDeleteThat is TREMENDOUS!!!!!!! Thank you for sharing this information, Sally. XOXO
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