Honestly, I don't understand SL-401 treatment that well, but I know it has worked at least a couple times for those with no other hope. It's a promising new treatment.
Now Stemline Therapeutics has announced a study of SL-401 for BPDCN (Blastic Plasmacytoid Dendritic Cell Neoplasm) and AML (Acute Myeloid Leukemia) patients. The announcement is here:
http://www.marketwatch.com/story/stemline-therapeutics-announces-opening-of-sl-401-corporate-ind-and-start-of-clinical-trials-in-bpdcn-and-aml-2014-07-28
You might want to ask your doctor about it if your treatment is failing, if you have relapsed, or if you are not eligible for a bone marrow transplant.
Showing posts with label bpdcn. Show all posts
Showing posts with label bpdcn. Show all posts
Sunday, August 24, 2014
Sunday, February 16, 2014
Exercise: We Can Do This!
The 30-degree weather seems to have moved on. It feels like a warm, summer day, but the high 50's temperatures today are actually just average for February in west Tennessee.
I was so excited for the sun and warm weather, but it's been so long since I've seen the sun, I forgot what it's like for me. I can't let it shine on my eyes, and I have to wear sunblock all the time and stay in the shade as much as possible.
Doctors tell me "as much as possible." I agree, "as much as possible." I have a sneaking suspicion we don't mean exactly the same thing by that phrase.
So today I felt recovered enough to go to the gym. I am thrilled and give thanks to God because while I hoped to recover from pneumonia in a couple weeks or a little more, it seemed hard to believe that was possible for a beat-up, almost-old guy like me.
Possible.
I was very disappointed to find out my lower legs are still the same. I was fantasizing that because my feet felt so good, and so not swollen, while I was mostly laying down that it would translate into some full recovery of blood flow to the lower legs.
Nope.
I got on a treadmill, and I walked a half-mile at a 20-min/mi pace. I figured that was enough warmup, and I broke into a very slow jog (4.5 MPH on the treadmill). I had no problem with my breathing, but my heart rate jumped up to 144 after one minute.
I had to quit at one minute of jogging. The bottom of my feet were hot like someone was holding a candle under them, and my calves were beelining towards a good charlie horse.
Still, 30 days ago I was trying to find the oxygen and energy to roll over for the doctor. The roll was agonizing, and I was so miserable I was barely conscious. Today, I was on a treadmill! I ran a minute, and I walked a mile!
Small goals for a guy who ran 31 miles in 7.5 hours just 7 years ago. I was dream of 135 miles across death valley back then and hoping to do longer ultramarathons to work up to "The Badwater."
I put in a little weightlifting, including some 60-lb. lat pulldowns across from a guy who looked like he bought his biceps from a butcher shop and who was yanking his 250-lb. body up and down on the pullup bar. I thought, "Don Knotts would try to do something really impressive here and look like an idiot. That would probable be more fun than sitting here hoping he doesn't notice my tiny weights going up and down on the pole."
One good thing about the pneumonia. My oncologist saw me on Thursday, and now he was as concerned about unbridling my baby immune system so it can be strong enough to dodge the next pneumonia as he is about my recurring skin GVH. After six months, they let me go down 2.5 mg (about 17%) on the Prednisone.
Here's to a slightly less stimulated appetite and less muscle-eating steroids.
Yeah, we transplant survivors get steroids that cause weakness, not muscle growth.
This sounds like complaining, doesn't it?
I'm updating my friends, and hopefully, I'm encouraging other leukemia/cancer patients/survivors.
I'm not really complaining. I am incredible fortunate. I am in comparable shape to a lot of 52-year-olds that haven't been through what I've been through. I can work. I can easily spend 10 hours a day doing things, often more, without having to lay down. That's not amazing two-years post-transplant, but it is better than normal.
I have the best caretaker possible. My wife is wonderful, and she not only never accuses me of being lazy or useless, she even gets mad at me when I accuse myself of either.
I have great friends, and I can't even mention them here because if I mention one, I will leave at least 20 or 30 close friends out and many more good friends out.
I do not, and I have not at any point felt sorry for myself. I did pout one particularly bad day in November of 2012 (yeah, so bad I remember the month) and just cry out to God, "Please stop hurting me." I was exhausted, had an ingrown toenail that was throbbing, a painful blood clot in my right calf, and I had been forced to work because of a problem that arose. While working, and in a lot of pain, I scalded my hand with steam.
I may have been guilty of feeling sorry for myself at that moment.
Otherwise, it would be embarrasing to feel sorry for myself. I have been to slums in India, Kenya, and Ethiopia. I have been to small, poverty-stricken villages in Africa and Myanmar. Let's not stop there; I have talked to homeless people in California and west Tennessee. It's worse in Tennessee because it's colder and wetter.
I have not suffered, at least not much.
To Fellow BPDCN Patients or Survivors
Final comment, for those newly diagnosed with BPDCN. I love the fact that so many of you contact me. I love dispensing hope, and even my hope grows as I hear about the successes of others. There's a 65-year-old man in Kentucky being treated with glowing results so far. I just passed the two-year mark post-transplant without relapse, and many others have done so over the last five years.
I got to refer one man to my own oncologist at Vanderbilt, where some of the leading leukemia research is done, and I got to refer another lady to an organization that helps cancer patients find help for their needs. My oncologist is helping with the treatment of the man long-distance, and the organization (UCAAN) was able to help the lady with her particular need.
So excited. And for you healthy folk, don't forget that you can BE THE MATCH and save a life ... like mine. Or maybe even like that guy in Kentucky, who still needs to find a marrow donor. Within a week, you could be on the list they're looking through for him. Ages 18-60 are eligible, and it's free and painless to sign up. If you actually become a donor (less than 1% chance), you're going to be pretty sore for a week, but it is not dangerous.
Well worth it to save a life.
I was so excited for the sun and warm weather, but it's been so long since I've seen the sun, I forgot what it's like for me. I can't let it shine on my eyes, and I have to wear sunblock all the time and stay in the shade as much as possible.
Doctors tell me "as much as possible." I agree, "as much as possible." I have a sneaking suspicion we don't mean exactly the same thing by that phrase.
So today I felt recovered enough to go to the gym. I am thrilled and give thanks to God because while I hoped to recover from pneumonia in a couple weeks or a little more, it seemed hard to believe that was possible for a beat-up, almost-old guy like me.
Possible.
I was very disappointed to find out my lower legs are still the same. I was fantasizing that because my feet felt so good, and so not swollen, while I was mostly laying down that it would translate into some full recovery of blood flow to the lower legs.
Nope.
I got on a treadmill, and I walked a half-mile at a 20-min/mi pace. I figured that was enough warmup, and I broke into a very slow jog (4.5 MPH on the treadmill). I had no problem with my breathing, but my heart rate jumped up to 144 after one minute.
I had to quit at one minute of jogging. The bottom of my feet were hot like someone was holding a candle under them, and my calves were beelining towards a good charlie horse.
Still, 30 days ago I was trying to find the oxygen and energy to roll over for the doctor. The roll was agonizing, and I was so miserable I was barely conscious. Today, I was on a treadmill! I ran a minute, and I walked a mile!
Small goals for a guy who ran 31 miles in 7.5 hours just 7 years ago. I was dream of 135 miles across death valley back then and hoping to do longer ultramarathons to work up to "The Badwater."
I put in a little weightlifting, including some 60-lb. lat pulldowns across from a guy who looked like he bought his biceps from a butcher shop and who was yanking his 250-lb. body up and down on the pullup bar. I thought, "Don Knotts would try to do something really impressive here and look like an idiot. That would probable be more fun than sitting here hoping he doesn't notice my tiny weights going up and down on the pole."
One good thing about the pneumonia. My oncologist saw me on Thursday, and now he was as concerned about unbridling my baby immune system so it can be strong enough to dodge the next pneumonia as he is about my recurring skin GVH. After six months, they let me go down 2.5 mg (about 17%) on the Prednisone.
Here's to a slightly less stimulated appetite and less muscle-eating steroids.
Yeah, we transplant survivors get steroids that cause weakness, not muscle growth.
This sounds like complaining, doesn't it?
I'm updating my friends, and hopefully, I'm encouraging other leukemia/cancer patients/survivors.
I'm not really complaining. I am incredible fortunate. I am in comparable shape to a lot of 52-year-olds that haven't been through what I've been through. I can work. I can easily spend 10 hours a day doing things, often more, without having to lay down. That's not amazing two-years post-transplant, but it is better than normal.
I have the best caretaker possible. My wife is wonderful, and she not only never accuses me of being lazy or useless, she even gets mad at me when I accuse myself of either.
I have great friends, and I can't even mention them here because if I mention one, I will leave at least 20 or 30 close friends out and many more good friends out.
I do not, and I have not at any point felt sorry for myself. I did pout one particularly bad day in November of 2012 (yeah, so bad I remember the month) and just cry out to God, "Please stop hurting me." I was exhausted, had an ingrown toenail that was throbbing, a painful blood clot in my right calf, and I had been forced to work because of a problem that arose. While working, and in a lot of pain, I scalded my hand with steam.
I may have been guilty of feeling sorry for myself at that moment.
Otherwise, it would be embarrasing to feel sorry for myself. I have been to slums in India, Kenya, and Ethiopia. I have been to small, poverty-stricken villages in Africa and Myanmar. Let's not stop there; I have talked to homeless people in California and west Tennessee. It's worse in Tennessee because it's colder and wetter.
I have not suffered, at least not much.
To Fellow BPDCN Patients or Survivors
Final comment, for those newly diagnosed with BPDCN. I love the fact that so many of you contact me. I love dispensing hope, and even my hope grows as I hear about the successes of others. There's a 65-year-old man in Kentucky being treated with glowing results so far. I just passed the two-year mark post-transplant without relapse, and many others have done so over the last five years.
I got to refer one man to my own oncologist at Vanderbilt, where some of the leading leukemia research is done, and I got to refer another lady to an organization that helps cancer patients find help for their needs. My oncologist is helping with the treatment of the man long-distance, and the organization (UCAAN) was able to help the lady with her particular need.
So excited. And for you healthy folk, don't forget that you can BE THE MATCH and save a life ... like mine. Or maybe even like that guy in Kentucky, who still needs to find a marrow donor. Within a week, you could be on the list they're looking through for him. Ages 18-60 are eligible, and it's free and painless to sign up. If you actually become a donor (less than 1% chance), you're going to be pretty sore for a week, but it is not dangerous.
Well worth it to save a life.
Wednesday, May 8, 2013
Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Study
I learned from an email that Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) is also called Plasmacytoid Dendritic Cell Leukemia (PDCL). It's been called a lot of things in the past, including Blastic Natural Killer Cell Lymphoma, which is a pretty cool name for a very "uncool" disease.
Anyway, I wanted to summarize a study published about 6 months ago, on November 30, 2012. It was published online at that time, then published in Blood Journal on Jan. 8, 2013. You can read the whole study on that link.
Thank you to Michael Oldtree for posting the link on rareshare.org for other BPDCN patients.
Basically, Damien Roos-Weil et al analyzed 34 BPDCN patients who had received stem cell/bone marrow transplants from a sibling or unrelated donor.
Here's the results, short and simple:
*A full-strength preparatory regimen, by the study standards, was at least 8 Gy of radiation and at least 10 mg/kg of bisulfan or 150 mg/m2 of melphalan. Anyone who gets a bone marrow/stem cell transplant is told whether they are receiving full-strength (myeloablative) or reduced intensity (non-myeloablative) conditioning.
The encouraging thing in this study is that BPDCN, that used to be known as having a 0% survival rate may possible have a 50% survival rate, if the patient is healthy enough to withstand a myeloablative marrow transplant.
The discouraging thing is reading that none of the patients they looked at who received reduced-intensity conditioning survived. They all died of relapse or complications. The sample-size for the reduced-intensity patients was very small (10, I think).
The study calls for more research on the ability of the new immune system (a new immune system is one product of a marrow transplant) to destroy any leftover leukemia and prevent relapse. This is called Graft-vs.-Leukemia, and they would study this by examining relapse rates for patients who received non-myeloablative conditioning. They would also study the relapse rates for all transplant recipients based on how much Graft-vs.-Host they experienced.
Graft-vs.-Host means that the new immune system is attacking the patient's body, which happens pretty often because the immune system and the patient's body have different DNA. (Yeah, the DNA of my blood is different than the DNA of my skin.) GVH is a bad thing in one sense, but it's also a good thing in most types of leukemia. An immune system that is aggressive like that is more likely to find and destroy any leftover leukemia cells that managed to survive the chemo and (sometimes) radiation used to prepare the patient for transplant. Thus, the relapse rate among leukemia patients in general is lower for patients that experience a small amount of GVH. A large amount of GVH is life-threatening, and dying is no good way to prevent relapse!
This study is saying, however, that they don't have evidence that Graft-vs.-Leukemia is effective in BPDCN patients, though they don't have a big enough sample size to confirm ineffectiveness. And that is a question we really need to answer! There is no sense putting patients through non-myeloablative transplants if they are not going to be effective. Of course, how are we going to find out if we don't try. Usually, non-myeloablative transplants are only used on older or weaker patients who might be killed by full-intensity regimens.
One final note: I'm not actually a BPDCN patient. I was diagnosed with BPDCN by a lab in California. The lab at Vanderbilt Cancer Center, however, was not willing to confirm the diagnosis. They could not come up with an alternative, either. They ended up calling my leukemia "undifferentiated," which means, in my case, they really didn't know what it was. They treated it like they would BPDCN, which means that I got a chemotherapy designed for Acute Myeloid Leukemia (AML) and a fully myeloablative marrow transplant was required as soon as I got into remission. Waiting any longer than 6 to 9 months would have just about guaranteed a drug-resistant relapse that would prove fatal. (Due to complications, we had to wait 6 months, and everyone was in a hurry at that point.)
Anyway, I wanted to summarize a study published about 6 months ago, on November 30, 2012. It was published online at that time, then published in Blood Journal on Jan. 8, 2013. You can read the whole study on that link.
Thank you to Michael Oldtree for posting the link on rareshare.org for other BPDCN patients.
Basically, Damien Roos-Weil et al analyzed 34 BPDCN patients who had received stem cell/bone marrow transplants from a sibling or unrelated donor.
The blood cells. The cell that stopped maturing, then multiplied uncontrollably, determines the type of leukemia. Notice the difference between Myeloid and Lymphoid cells, which makes the difference between Myeloid and Lymphoid Leukemias. The Plasmacytoid Dendritic Cell is a myeloid cell, which may be why BPDCN is treated like AML.
Here's the results, short and simple:
- This was an analysis of treatment results, not a study where the researchers treated the patients themselves.
- Ages were between 10 and 70 years old.
- They separated the patients into two groups, those under 42 and those over 42.
- There was no significant difference in survival rates between the older and younger group.
- The sample size was only 34 people. The disease is quite rare, and there have only been about 200 cases ever.
- The disease-free survival rate at 28 months was 50% for those that received a full-strength preparatory regimen.*
- All of those who received a reduced intensity preparatory regimen died of complications or relapse.*
*A full-strength preparatory regimen, by the study standards, was at least 8 Gy of radiation and at least 10 mg/kg of bisulfan or 150 mg/m2 of melphalan. Anyone who gets a bone marrow/stem cell transplant is told whether they are receiving full-strength (myeloablative) or reduced intensity (non-myeloablative) conditioning.
Discussion of Results
The encouraging thing in this study is that BPDCN, that used to be known as having a 0% survival rate may possible have a 50% survival rate, if the patient is healthy enough to withstand a myeloablative marrow transplant.
The discouraging thing is reading that none of the patients they looked at who received reduced-intensity conditioning survived. They all died of relapse or complications. The sample-size for the reduced-intensity patients was very small (10, I think).
The study calls for more research on the ability of the new immune system (a new immune system is one product of a marrow transplant) to destroy any leftover leukemia and prevent relapse. This is called Graft-vs.-Leukemia, and they would study this by examining relapse rates for patients who received non-myeloablative conditioning. They would also study the relapse rates for all transplant recipients based on how much Graft-vs.-Host they experienced.
Graft-vs.-Host means that the new immune system is attacking the patient's body, which happens pretty often because the immune system and the patient's body have different DNA. (Yeah, the DNA of my blood is different than the DNA of my skin.) GVH is a bad thing in one sense, but it's also a good thing in most types of leukemia. An immune system that is aggressive like that is more likely to find and destroy any leftover leukemia cells that managed to survive the chemo and (sometimes) radiation used to prepare the patient for transplant. Thus, the relapse rate among leukemia patients in general is lower for patients that experience a small amount of GVH. A large amount of GVH is life-threatening, and dying is no good way to prevent relapse!
This study is saying, however, that they don't have evidence that Graft-vs.-Leukemia is effective in BPDCN patients, though they don't have a big enough sample size to confirm ineffectiveness. And that is a question we really need to answer! There is no sense putting patients through non-myeloablative transplants if they are not going to be effective. Of course, how are we going to find out if we don't try. Usually, non-myeloablative transplants are only used on older or weaker patients who might be killed by full-intensity regimens.
One final note: I'm not actually a BPDCN patient. I was diagnosed with BPDCN by a lab in California. The lab at Vanderbilt Cancer Center, however, was not willing to confirm the diagnosis. They could not come up with an alternative, either. They ended up calling my leukemia "undifferentiated," which means, in my case, they really didn't know what it was. They treated it like they would BPDCN, which means that I got a chemotherapy designed for Acute Myeloid Leukemia (AML) and a fully myeloablative marrow transplant was required as soon as I got into remission. Waiting any longer than 6 to 9 months would have just about guaranteed a drug-resistant relapse that would prove fatal. (Due to complications, we had to wait 6 months, and everyone was in a hurry at that point.)
Thursday, July 7, 2011
July 7: Getting You Up to Date
Okay, so the diagnosis is Blastic Plasmacytoid Dendritic Cell Neoplasm.
Yeah, I've been practicing on and off for 48 hours, and I still can't say it fast, even though I now know what all those words mean.
So, I'll give you the details, and in the next post I'll tell you about my experience with going home and googling Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN).
BPDCN is a very rare and aggressive lymphoma (I think that's what I'm reading) which usually will turn into a particularly aggressive form of Acute Myeloid Leukemia (AML). There's probably been less than 500 diagnosed cases, though I can't find any certain number.
The outlook for BPDCN was particularly grim until the last five years or so, with pretty much everyone dying within the first two years and a median survival time of 13 months. (Whoo whee! Wow!) BUT ...
The problem was that they were treating it like other leukemias. If you obtain remission with chemotherapy with other leukemias, you wait and see if the remission will last. If it doesn't, then you do chemo again, obtain a second remission, then do a bone marrow or stem cell transplant.
Not with BPDCN. With BPDCN, the first remission never lasts—in fact, it never lasts longer than 3 months—and you don't get a second remission. The patient dies, and he/she dies pretty quickly.
So now they know that with BPDCN you obtain remission with chemo (an intensive chemo designed for AML), the chances of which they refer to as "excellent," and then you do the bone marrow transplant.
Then ...
Then they don't know. It's been too recent, and there's been too few cases, so they really don't know what happens after that.
I know of several cases that are currently in remission after bone marrow or stem cell transplant. One's at 18 months (currently) and one was at 26 months when the medical report was written (I think in January). Both patients were doing fine, still in remission.
One older patient (over 67) made it 57 months (almost 5 years), and it doesn't appear from the medical paper that the person died of the BPDCN, but it's hard to tell from the abstract that I am able to read on Pubmed.
So, technically speaking, that's my situation. I have a pretty good shot with chemo and bone marrow (or stem cell) transplant, assuming we can find a donor, and then I become part of the medical testing to see how long BPDCN patients last.
Okay, now some practical info...
Concerning being a bone marrow donor:
I'll post more info on how to offer to be a donor as I have it. The doctor says I should type my brothers and sister first. My children are not much better hope than the average citizen.
Giving bone marrow doesn't mean giving all the marrow in your body. They pull a little bit from your hip, just like they did the bone marrow biopsy on me, and then they inject it right into my bloodstream (after they've made sure to destroy all my bone marrow through chemo). The bone marrow, having stem cells in it, then proliferates on its own, replacing bone marrow, blood, and everything.
Really, it's a pretty amazing process.
If you want to find out more about offering to be a bone marrow donor before I do, try marrow.org. I will, too, but it will be a couple days before I post anything.
I've had a lot of offers from people to have their bone marrow checked for a match. It's really wonderful of everyone to be so kind. I am happy to report that giving bone marrow's not that bad. It's very weird, having a needle poking around inside your hip bone. I've never felt anything like it, but it wasn't bad, and I was only barely sore the next day, though another donor once said she felt like she'd been kicked by a mule afterward.
Concerning certainty of diagnosis:
The pathology lab in California settled on Blasti Plasmacytoid Dendritic Cell Neoplasm as an official diagnosis, but the doctors at Vanderbilt want to verify it. They are looking at my cells under a microscope from both the bone marrow biopsy and my blood. They have not given the BPDCN their blessing yet, though I think it's likely they will. It's also likely that even if they don't, I still have something rare. I just didn't match any of the more common stuff.
Also, I've seen pictures of bumps exactly like the bumps on my back on the internet from other BPDCN patients. Further, to have lesions (the bumps) as your first symptom, followed rapidly by leukemia symptoms, is the norm for BPDCN. On the other hand, they make the diagnosis on exact chromosome abnormalities on particular blood cells (in this case plasmacytoid dendritic cells, which help identify pathogens in the blood), so that's what they're verifying.
Okay, now I'm going to go write another post about the harrowing experience I had the day I was told I have Blastic Plasmacytoid Dendritic Cell Neoplasm.
Yeah, I've been practicing on and off for 48 hours, and I still can't say it fast, even though I now know what all those words mean.
So, I'll give you the details, and in the next post I'll tell you about my experience with going home and googling Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN).
BPDCN is a very rare and aggressive lymphoma (I think that's what I'm reading) which usually will turn into a particularly aggressive form of Acute Myeloid Leukemia (AML). There's probably been less than 500 diagnosed cases, though I can't find any certain number.
The outlook for BPDCN was particularly grim until the last five years or so, with pretty much everyone dying within the first two years and a median survival time of 13 months. (Whoo whee! Wow!) BUT ...
The problem was that they were treating it like other leukemias. If you obtain remission with chemotherapy with other leukemias, you wait and see if the remission will last. If it doesn't, then you do chemo again, obtain a second remission, then do a bone marrow or stem cell transplant.
Not with BPDCN. With BPDCN, the first remission never lasts—in fact, it never lasts longer than 3 months—and you don't get a second remission. The patient dies, and he/she dies pretty quickly.
So now they know that with BPDCN you obtain remission with chemo (an intensive chemo designed for AML), the chances of which they refer to as "excellent," and then you do the bone marrow transplant.
Then ...
Then they don't know. It's been too recent, and there's been too few cases, so they really don't know what happens after that.
I know of several cases that are currently in remission after bone marrow or stem cell transplant. One's at 18 months (currently) and one was at 26 months when the medical report was written (I think in January). Both patients were doing fine, still in remission.
One older patient (over 67) made it 57 months (almost 5 years), and it doesn't appear from the medical paper that the person died of the BPDCN, but it's hard to tell from the abstract that I am able to read on Pubmed.
So, technically speaking, that's my situation. I have a pretty good shot with chemo and bone marrow (or stem cell) transplant, assuming we can find a donor, and then I become part of the medical testing to see how long BPDCN patients last.
Okay, now some practical info...
Concerning being a bone marrow donor:
I'll post more info on how to offer to be a donor as I have it. The doctor says I should type my brothers and sister first. My children are not much better hope than the average citizen.
Giving bone marrow doesn't mean giving all the marrow in your body. They pull a little bit from your hip, just like they did the bone marrow biopsy on me, and then they inject it right into my bloodstream (after they've made sure to destroy all my bone marrow through chemo). The bone marrow, having stem cells in it, then proliferates on its own, replacing bone marrow, blood, and everything.
Really, it's a pretty amazing process.
If you want to find out more about offering to be a bone marrow donor before I do, try marrow.org. I will, too, but it will be a couple days before I post anything.
I've had a lot of offers from people to have their bone marrow checked for a match. It's really wonderful of everyone to be so kind. I am happy to report that giving bone marrow's not that bad. It's very weird, having a needle poking around inside your hip bone. I've never felt anything like it, but it wasn't bad, and I was only barely sore the next day, though another donor once said she felt like she'd been kicked by a mule afterward.
Concerning certainty of diagnosis:
The pathology lab in California settled on Blasti Plasmacytoid Dendritic Cell Neoplasm as an official diagnosis, but the doctors at Vanderbilt want to verify it. They are looking at my cells under a microscope from both the bone marrow biopsy and my blood. They have not given the BPDCN their blessing yet, though I think it's likely they will. It's also likely that even if they don't, I still have something rare. I just didn't match any of the more common stuff.
Also, I've seen pictures of bumps exactly like the bumps on my back on the internet from other BPDCN patients. Further, to have lesions (the bumps) as your first symptom, followed rapidly by leukemia symptoms, is the norm for BPDCN. On the other hand, they make the diagnosis on exact chromosome abnormalities on particular blood cells (in this case plasmacytoid dendritic cells, which help identify pathogens in the blood), so that's what they're verifying.
Okay, now I'm going to go write another post about the harrowing experience I had the day I was told I have Blastic Plasmacytoid Dendritic Cell Neoplasm.
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