…pretty patiently I might say.
As the end of the second month passes since my stem cell harvest happened in NYC, I am feeling pretty good. And no I have not called to bug the office asking when my first treatment will happen!
Can you believe it? I can't. But it makes sense to be patient on this one. So I am.
Not being so patient with regards to some other things, but for this particular item, I am.
I have found out that the last technical hurdle lobbed up by the FDA has been cleared, so the trial can proceed as planned. Which means that at least one other person will receive their cells this month and another next. And that is the end of the information I know.
My guess is that Tisch MS Center is being hush hush as they do not want to have any information leak out before they are ready to reveal results in a year or so. I bet once participants get treated, they sign a gag order. The one person I 'know' who has already received his cells - the journalist Richard Cohen - has not really said a word on his blog about his condition since his cells were re-injected this past Spring.
Hopefully though, this trial will be like reality shows where what happens gets revealed prior to broadcast. If only Reality Steve had an 'in' with Dr. Sadiq or Richard Cohen and could publish some spoilers every once in a while.
In the mean time, I get to obsess over other things (such as reading The Goldfinch in four days or getting nervous about C starting Kindergarten) and play 'hector projector,' thinking of all sorts of crazy scenarios that might emerge over the coming months. I also get to be diligent about keeping as fit as possible, and as healthy as possible.
So far so good.
Tuesday, July 22, 2014
Friday, June 13, 2014
Serendipity
The key project designer/architect of Seattle's Central Library was in town last month talking about what went into the design of the now iconic structure. The usual suspects of addressing needs of all constituents, usefulness, budget, purpose, etc all came up..but then in answer to a question essentially asking what about the purpose of the actual book is in the 21st century, Josh brought up 'the need to ensure serendipity' in finding a book.
Serendipity. It is a great word and concept and though I have not used it in awhile, I think it is time to use it again.
It is true that so much about the experience in a library - at least when I go with my son - is about browsing through the shelves to see what we can discover. To see which covers will captivate his imagination and which words he will acknowledge now knowing how to read. To see what will pass the test to make it to the check out pile. We can even manipulate the serendipitous-ness a bit by looking in the online catalog to discover ALL of the holdings on a certain topic. And then place holds on the ones that pass the title test.
Serendipity is also very much at work in the real world as to why things happen or why certain people contract conditions. Of course environmental conditions are not all serendipitous. If you smoke a couple packs of cigarettes a day, you will most likely get lung cancer. Your choice, your probable outcome.
At this point in the MS world, cause and effect is pretty much defined by serendipity. If you live above or below certain longitude lines, and don't get to sunnier climates enough, you have a greater chance of developing MS. If you then experience a major physical trauma, your chances increase. Bottom line is that they just do not know for sure why MS starts revealing itself in its targets.
The serendipity of how aggressive and progressive my MS path has been is maddening. Heart stopping at times. Ultimately the only things that will make the anger go away is by controlling the few things that I can: diet (I am gluten and dairy free and 95% fully plant based), body work and exercise. Thankfully a background in team sports has led to being pretty disciplined in these areas. Though every once in awhile, a margarita is the perfect medicine!
Pushing to be part of Sadiq's Phase 1 stem trial is most likely part of this control thing I got going on. Drugs do not do well in my body. Each one I have tried has made my symptoms worse. Double blind, placebo trials may be good to placate the FDA, but those are not the trials that will help me. Sorry drug companies. You had your chance and you blew it. So step away from the chalupa!
It is the trial guaranteeing a treatment with the fewest side effects and minimal time away from home that will help me AND help the medical research field. For the mom to a 5.5 year old and wife to an active, outdoorsy guy, that is music to my ears. I know the treatment may not work, but there are a lot of other trials going on out there involving stem cells, and there are heartening outcomes! I am hoping that serendipity has gotten its wiggles out enough already in my life and that the other positives outcomes around the world portend well for me and how the addition of extra stem cells cells will improve my symptoms.
The down side to being a participant in the trial is all the waiting……I am really not good at that.
Serendipity. It is a great word and concept and though I have not used it in awhile, I think it is time to use it again.
It is true that so much about the experience in a library - at least when I go with my son - is about browsing through the shelves to see what we can discover. To see which covers will captivate his imagination and which words he will acknowledge now knowing how to read. To see what will pass the test to make it to the check out pile. We can even manipulate the serendipitous-ness a bit by looking in the online catalog to discover ALL of the holdings on a certain topic. And then place holds on the ones that pass the title test.
Serendipity is also very much at work in the real world as to why things happen or why certain people contract conditions. Of course environmental conditions are not all serendipitous. If you smoke a couple packs of cigarettes a day, you will most likely get lung cancer. Your choice, your probable outcome.
At this point in the MS world, cause and effect is pretty much defined by serendipity. If you live above or below certain longitude lines, and don't get to sunnier climates enough, you have a greater chance of developing MS. If you then experience a major physical trauma, your chances increase. Bottom line is that they just do not know for sure why MS starts revealing itself in its targets.
The serendipity of how aggressive and progressive my MS path has been is maddening. Heart stopping at times. Ultimately the only things that will make the anger go away is by controlling the few things that I can: diet (I am gluten and dairy free and 95% fully plant based), body work and exercise. Thankfully a background in team sports has led to being pretty disciplined in these areas. Though every once in awhile, a margarita is the perfect medicine!
Pushing to be part of Sadiq's Phase 1 stem trial is most likely part of this control thing I got going on. Drugs do not do well in my body. Each one I have tried has made my symptoms worse. Double blind, placebo trials may be good to placate the FDA, but those are not the trials that will help me. Sorry drug companies. You had your chance and you blew it. So step away from the chalupa!
It is the trial guaranteeing a treatment with the fewest side effects and minimal time away from home that will help me AND help the medical research field. For the mom to a 5.5 year old and wife to an active, outdoorsy guy, that is music to my ears. I know the treatment may not work, but there are a lot of other trials going on out there involving stem cells, and there are heartening outcomes! I am hoping that serendipity has gotten its wiggles out enough already in my life and that the other positives outcomes around the world portend well for me and how the addition of extra stem cells cells will improve my symptoms.
The down side to being a participant in the trial is all the waiting……I am really not good at that.
Thursday, June 5, 2014
The Wait - Part 1
So the marrow has been harvested. Now what?
We wait. Again. For an unknown amount of time. Could be three months. Could be six months. Could be longer. We wait for a phone call from 'the scheduler.' Or perhaps the call might even come from my neurologist himself.
We are waiting for two things: final FDA approval for the trial to proceed and 10,000,000 mesenchymal stem cells to have been produced from my harvested marrow, providing enough cells for re-injection. Oh and I then have to wait for my turn in line.
Finding out about the additional FDA hurdle was a bit of a surprise. I thought that the approval had no strings attached. I should have known better. The FDA is the FDA and inherently has many other interests and concerns. But it is what it is, and I am confident that Dr. Sadiq and his team will address any outstanding questions as expeditiously as possible. They have come this far - they are not going to be stopped now.
10,000,000 mesenchymal stem cells. 10,000,000 sounds like a big number. In many cases it is - dollars, people, years, and in some cases, a large number, but not overwhelming. Considering how many cells are in the human body, and how many different types of cells there are, [ see this Smithsonian article for further context], 10,000,000 mesenchymal stem cells doesn't seem like a lot.
Assuming the FDA is satisfied with how trial patient #1 is doing after receiving his cells, I will be summoned back to NYC for the first 'dose' of 10,000,000 of my own mesenchymal stem cells. They will be given back intrathecally - meaning via a spinal tap so that these cells can be inserted directly into my spinal fluid. And then we wait some more to see what happens.
The ultimate goal - and what Dr. Sadiq is trying to prove - is that autologous stem cells inserted into one's spinal fluid - can fix damage brought on by MS.
There are plenty of others in the same shoes. By our calculations, there will be around 200 people with PPMS who have had their marrow harvested by Dr. Sara; whose cells have been grown under the watchful eyes of Dr. Harris; and in whose successful treatment Dr. Sadiq is so heavily invested. It is humbling to be part of this trial.
And so this phase of waiting begins.
#########
Here is a link to Dr. Sadiq and his Tisch MS Research Center of NY.
For those who want a bit more explanation as to what was entailed in the aspiration, what has happened to my marrow sample, and where the cells are being incubated, watch these videos made by trial patient #1, Richard Cohen and his wife, tv personality, Meredith Vieira:
Cell harvest: http://richardmcohen.com/the-great-stem-cell-caper-2/
We wait. Again. For an unknown amount of time. Could be three months. Could be six months. Could be longer. We wait for a phone call from 'the scheduler.' Or perhaps the call might even come from my neurologist himself.
We are waiting for two things: final FDA approval for the trial to proceed and 10,000,000 mesenchymal stem cells to have been produced from my harvested marrow, providing enough cells for re-injection. Oh and I then have to wait for my turn in line.
Finding out about the additional FDA hurdle was a bit of a surprise. I thought that the approval had no strings attached. I should have known better. The FDA is the FDA and inherently has many other interests and concerns. But it is what it is, and I am confident that Dr. Sadiq and his team will address any outstanding questions as expeditiously as possible. They have come this far - they are not going to be stopped now.
10,000,000 mesenchymal stem cells. 10,000,000 sounds like a big number. In many cases it is - dollars, people, years, and in some cases, a large number, but not overwhelming. Considering how many cells are in the human body, and how many different types of cells there are, [ see this Smithsonian article for further context], 10,000,000 mesenchymal stem cells doesn't seem like a lot.
Assuming the FDA is satisfied with how trial patient #1 is doing after receiving his cells, I will be summoned back to NYC for the first 'dose' of 10,000,000 of my own mesenchymal stem cells. They will be given back intrathecally - meaning via a spinal tap so that these cells can be inserted directly into my spinal fluid. And then we wait some more to see what happens.
The ultimate goal - and what Dr. Sadiq is trying to prove - is that autologous stem cells inserted into one's spinal fluid - can fix damage brought on by MS.
There are plenty of others in the same shoes. By our calculations, there will be around 200 people with PPMS who have had their marrow harvested by Dr. Sara; whose cells have been grown under the watchful eyes of Dr. Harris; and in whose successful treatment Dr. Sadiq is so heavily invested. It is humbling to be part of this trial.
And so this phase of waiting begins.
#########
Here is a link to Dr. Sadiq and his Tisch MS Research Center of NY.
For those who want a bit more explanation as to what was entailed in the aspiration, what has happened to my marrow sample, and where the cells are being incubated, watch these videos made by trial patient #1, Richard Cohen and his wife, tv personality, Meredith Vieira:
Cell harvest: http://richardmcohen.com/the-great-stem-cell-caper-2/
Cell incubation: http://richardmcohen.com/the-great-stem-cell-caper-part-two/
Cell re-insertion: http://richardmcohen.com/beginnings/
Aspiration
There are lots of questions to ask and perhaps the first might be about the significance of 10,000,000. Before I go there, I need to explain a couple of other things. For instance, what am I talking about and why? That might be a good start. But I don't really want to go there. I kind of just want to just jump in. And elaborate along the way.
Feel free to ask questions.
My goal is to be as clear and as factual about the stem cell therapy trial in which I am about to be a participant, and the effects of this therapy. Not to go into too much history. That might be boring. I don't need to go through a lot of it again, so why should a reader? We will see where it all goes.
Back to the title of this post - Aspiration.
After months (really over two years) of waiting, on Friday May 30, I had approximately 20 ccs of bone marrow aspirated from my sternum. In basic descriptive terms, a hematologist/oncologist inserted a corkscrew-like tool into my chest, about 6" below the adam's apple, and sucked out the marrow.
After seeing a video of another trial participant's procedure and hearing the doctors explain what would happen, I expected a more painful, longer procedure. The reality was that the most uncomfortable part was the prick of the needle placing anesthetic in the area, and that the time lapsed from walking into the office to walking out of the office was 45,' tops. No pain and efficiency. Gotta love working with Doctors who know what they are doing in their own clinics, and not with residents in hospitals. I hate hospitals.
Almost one week later, there is a tiny scab and a wee bit of bruising that remains at the site. Initial soreness, achey-ness that I compared to a massive bee sting on my chest was gone after three days. No side effects other than those resulting from traveling back and forth to the east coast, not exercising regularly for two weeks, and discomfort from the aforementioned ruptured ear drum.
I also have a mark on my arm from the site where they drew 40 vials of blood the day prior to aspiration.
That's it.
Seriously.
The only thing I did differently before and after the procedure was to eat bone broths the week before and days after to give my normally vegan diet an extra nutrient boost. And drink coconut water to rehydrate and have shooters of aloe vera juice to nourish the stem cells.
Honestly, the worst part of all this was the emotional trudging experienced while waiting for the day of aspiration. And more slogging is to come while waiting for the next steps to happen. Yippee. As most of you already know, I am not a very patient person. So all this waiting is BRUTAL.
Good thing I have some pretty darn cute, loving boys to support me on a daily basis, and some awesome friends and family members riding shot gun when they can. I am extremely thankful for that.
Feel free to ask questions.
My goal is to be as clear and as factual about the stem cell therapy trial in which I am about to be a participant, and the effects of this therapy. Not to go into too much history. That might be boring. I don't need to go through a lot of it again, so why should a reader? We will see where it all goes.
Back to the title of this post - Aspiration.
After months (really over two years) of waiting, on Friday May 30, I had approximately 20 ccs of bone marrow aspirated from my sternum. In basic descriptive terms, a hematologist/oncologist inserted a corkscrew-like tool into my chest, about 6" below the adam's apple, and sucked out the marrow.
After seeing a video of another trial participant's procedure and hearing the doctors explain what would happen, I expected a more painful, longer procedure. The reality was that the most uncomfortable part was the prick of the needle placing anesthetic in the area, and that the time lapsed from walking into the office to walking out of the office was 45,' tops. No pain and efficiency. Gotta love working with Doctors who know what they are doing in their own clinics, and not with residents in hospitals. I hate hospitals.
Almost one week later, there is a tiny scab and a wee bit of bruising that remains at the site. Initial soreness, achey-ness that I compared to a massive bee sting on my chest was gone after three days. No side effects other than those resulting from traveling back and forth to the east coast, not exercising regularly for two weeks, and discomfort from the aforementioned ruptured ear drum.
I also have a mark on my arm from the site where they drew 40 vials of blood the day prior to aspiration.
That's it.
Seriously.
The only thing I did differently before and after the procedure was to eat bone broths the week before and days after to give my normally vegan diet an extra nutrient boost. And drink coconut water to rehydrate and have shooters of aloe vera juice to nourish the stem cells.
Honestly, the worst part of all this was the emotional trudging experienced while waiting for the day of aspiration. And more slogging is to come while waiting for the next steps to happen. Yippee. As most of you already know, I am not a very patient person. So all this waiting is BRUTAL.
Good thing I have some pretty darn cute, loving boys to support me on a daily basis, and some awesome friends and family members riding shot gun when they can. I am extremely thankful for that.
First Words
Sitting down with a cup of tea and writing has been a long time coming.
There have been plenty kicks in the pants, though what finally pushed me over the edge this morning was finding out that I ruptured my ear drum somehow and I didn't even know it. Well, I knew something wasn't right, I just didn't know how serious it might be. I have been so focused on Charlie's health the past couple weeks, guess I forgot about me.
Thus the decision to 'rest' a bit this morning, after taking my first dose of antibiotics, and embrace Dani Shapiro's words from 'Still Writing - The Perils and Pleasures of a Creative Life,' and sit and write. Something. Anything. Just write. With a cuppa green tea.
Not to worry, I will not write just anything. The blogs I follow often leave me annoyed with the amount of stuff that is spewing out. TMI. I have also been intimidated by blogs written by others with MS in terms of the amount of information about the disease and possible treatments presented. That's not what I feel I need to share with those friends and family members asking questions. And then there was that blog by the chef who replicated many of Julia Child's recipes. Zany, interesting, and ultimately a movie! Fun!
So where would what I have to say fit in the blogoshere? Do I really want to be in there? Hmmm.
However, I have been asked to share what is happening with my health and I need to find an expeditious way to share the facts. Just the facts ma'am. But also have a bit of cathartic fun. As well as chronicle a bit of the journey so that if one day, Charlie starts asking a lot of questions about his mom, there will be a practical source upon which he can practice his new reading skills. And gather a bit more information for himself.
OK then.
Here we go.
There have been plenty kicks in the pants, though what finally pushed me over the edge this morning was finding out that I ruptured my ear drum somehow and I didn't even know it. Well, I knew something wasn't right, I just didn't know how serious it might be. I have been so focused on Charlie's health the past couple weeks, guess I forgot about me.
Thus the decision to 'rest' a bit this morning, after taking my first dose of antibiotics, and embrace Dani Shapiro's words from 'Still Writing - The Perils and Pleasures of a Creative Life,' and sit and write. Something. Anything. Just write. With a cuppa green tea.
Not to worry, I will not write just anything. The blogs I follow often leave me annoyed with the amount of stuff that is spewing out. TMI. I have also been intimidated by blogs written by others with MS in terms of the amount of information about the disease and possible treatments presented. That's not what I feel I need to share with those friends and family members asking questions. And then there was that blog by the chef who replicated many of Julia Child's recipes. Zany, interesting, and ultimately a movie! Fun!
So where would what I have to say fit in the blogoshere? Do I really want to be in there? Hmmm.
However, I have been asked to share what is happening with my health and I need to find an expeditious way to share the facts. Just the facts ma'am. But also have a bit of cathartic fun. As well as chronicle a bit of the journey so that if one day, Charlie starts asking a lot of questions about his mom, there will be a practical source upon which he can practice his new reading skills. And gather a bit more information for himself.
OK then.
Here we go.
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