A quickie for the end of the month:
The National Institute for Health and Care Excellence in the UK has approved R-Squared for some patients with Follicular Lymphoma.
R-Squared is the common name for the combination of Rituxan and Revlimid (also known as Lenalidomide). Patients must have already been treated, and the treatment stopped working. It was approved in the U.S.A. last year for that group of patients.
As I have written about before, R-Squared is one of those treatments that has gotten lymphoma specialists very excited for many years. In a direct comparison with traditional chemo, R-Squared was just as effective, with different (not necessarily fewer or worse) side effects. It's the first real alternative to chemotherapy approved in the US or the UK for Follicular Lymphoma.
I confess that I don't know the approval system in the UK (or any other country) as I do in the U.S.A., so I can't say for sure which areas are covered by NICE (just England? The whole UK?). Another article about the approval says that it will benefit 900 patients, which doesn't seem like a lot to me (but, again, I'm used to bigger numbers in my larger company).
But if that's the case, then it's actually very cool that the hard work of the approval process was completed even if it's going to help a relatively small number of people. I'm all for anything that helps any number of Follicular Lymphoma.
More good news. I'm happy to be able to share it.
Friday, February 28, 2020
Monday, February 24, 2020
Tazemetostat: Priority Review
Last week, the FDA granted Priority Review for Tazemetostat for relapsed or refractory Follicular Lymphoma.
This could be god news for us -- another potential arrow in the quiver.
Let's break it all down.
Tazemetostat is an EZH2 inhibitor. Like all inhibitors (and there are lots of them these days for lots of different types of cancer), Tazemetostat's job is to inhibit, or stop something from happening. In this case, it inhibits EZH2, which is an enzyme that is controlled by the EZH2 gene. Basically, EZH2 is part of a process that allows cells to grow. When EZH2 does its job too well, the cell keeps growing. This is, of course, the definition of cancer -- cells that won't stop growing. By inhibiting or stopping EZH2 from doing its job so well, Tazemetostat can keep cancer cells in check.
Problems with EZH2 affect several different cancer, including Follicular Lymphoma.
The FDA application is for patients with relapsed or refractory FL -- basically, their last treatment stopped working, or didn't work at all. The approval would cover patients who have had at least 2 other treatments.
Tazemetostat had already received Fast-Track designation from the FDA a few years ago. I can't find anything in a quick search that says why it has been over 2 years with no action, but reports about the current Priority Review say that updates phase 2 trial results reviewed by an independent committee have been a factor. The trial involved 45 patients with EZH2 mutations, and another 54 with wild-type EZH2. The results showed that the treatment was well-tolerated.
[I'm also having trouble finding information about the difference between EZH2 and wild-type EZH2. I'm pretty sure wild-type isn't nearly as interesting as I have been building it up to be in my mind. I'm desperate for a little excitement in the Follicular Lymphoma Community.]
The last piece of the announcement is that the FDA granted Priority Review. This means that it will move the review process faster along than usual. They plan to have a ruling by mid-June of this year.
The company that makes Tazemetostat is also conducting a trial that combines Tazemetostat with R-Squared (Rituxan and Revlimid). These "triplets" are becoming more common, from what I can tell. They attack the cancer cells in three different ways, and so provide up to 3 times the effectiveness. Of course, they also provide up to 3 times the side effects, so that has to be balanced in there, too. Not much sense in having an effective treatment that creates more problems that it fixes.
I'll be sure to keep an eye out for more news about Tazemetostat and Follicular Lymphoma, in whatever form it is being studied. I'm al for another option for us.
This could be god news for us -- another potential arrow in the quiver.
Let's break it all down.
Tazemetostat is an EZH2 inhibitor. Like all inhibitors (and there are lots of them these days for lots of different types of cancer), Tazemetostat's job is to inhibit, or stop something from happening. In this case, it inhibits EZH2, which is an enzyme that is controlled by the EZH2 gene. Basically, EZH2 is part of a process that allows cells to grow. When EZH2 does its job too well, the cell keeps growing. This is, of course, the definition of cancer -- cells that won't stop growing. By inhibiting or stopping EZH2 from doing its job so well, Tazemetostat can keep cancer cells in check.
Problems with EZH2 affect several different cancer, including Follicular Lymphoma.
The FDA application is for patients with relapsed or refractory FL -- basically, their last treatment stopped working, or didn't work at all. The approval would cover patients who have had at least 2 other treatments.
Tazemetostat had already received Fast-Track designation from the FDA a few years ago. I can't find anything in a quick search that says why it has been over 2 years with no action, but reports about the current Priority Review say that updates phase 2 trial results reviewed by an independent committee have been a factor. The trial involved 45 patients with EZH2 mutations, and another 54 with wild-type EZH2. The results showed that the treatment was well-tolerated.
[I'm also having trouble finding information about the difference between EZH2 and wild-type EZH2. I'm pretty sure wild-type isn't nearly as interesting as I have been building it up to be in my mind. I'm desperate for a little excitement in the Follicular Lymphoma Community.]
The last piece of the announcement is that the FDA granted Priority Review. This means that it will move the review process faster along than usual. They plan to have a ruling by mid-June of this year.
The company that makes Tazemetostat is also conducting a trial that combines Tazemetostat with R-Squared (Rituxan and Revlimid). These "triplets" are becoming more common, from what I can tell. They attack the cancer cells in three different ways, and so provide up to 3 times the effectiveness. Of course, they also provide up to 3 times the side effects, so that has to be balanced in there, too. Not much sense in having an effective treatment that creates more problems that it fixes.
I'll be sure to keep an eye out for more news about Tazemetostat and Follicular Lymphoma, in whatever form it is being studied. I'm al for another option for us.
Wednesday, February 19, 2020
Choosing Not To Fear
As many of you know, in addition to writing this blog, I also write for some other sites. This includes writing for Blood-Cancer.com, where I am a Community Advocate.
I'm fond of this site. It has a nice collection of advocates and writers, who deal with a variety of blood cancers (different leukemia and myeloma types, as well as lymphoma types). Even though not everyone is a Follicular Lymphoma patient, the site offers lots of good advice no matter where you are with your cancer experience.
I had a piece published this week on the site, called "Choosing Not To Fear." I actually submitted it to the site at the end of October, and they've just now published it. (That's not a complaint -- it tells you how many great writers and advocates they have contributing to the site. The waiting room is crowded, if you know what I mean -- and I'm sure you do.)
I hadn't thought about the piece in a while, so it was kind of fun to read it again after a few months. I have to say, I'm proud of this one. My wife pointed out to me that some of what I've been writing lately has been a little negative (the 12 Year Diagnosiversary blog post, in particular).
I can see that. It's funny -- things are going fairly well for me, in terms of my health. I'm 10 years post-treatment. My last oncology appointment (also described in a post that was a little on the negative side) went just fine.
Maybe with things going so well, I have the luxury of being annoyed by little things? Maye those things wouldn't have gotten to me so much if I was in need of a "Don't Sweat The Small Stuff" attitude?
So maybe my slightly-more-negative-than-usual attitude is actually a good thing?
Whatever the case, it was nice to go back a few months and read something on the more positive side.
The Blood-Cancer.com piece is about Blue-Footed Boobies, Sally Lightfoot Crabs, and other fearless creatures of the Galapagos Islands. Here are some pictures:
And, more importantly, it's about what we do the fear we have. I don't think we can ever avoid the fear -- we can't really choose to do something that we have no control over. But we do have lots of choice about how we handle that fear.
So take a look at the piece and think about about what you do with the fear you might feel.
I try to channel it into learning more about my disease, doing what I can to help others deal with it, and plan on living a very long life.
(And, occasionally, to be a little more negative than I should be. But I think we've agreed -- that's a good thing, right?)
I'm fond of this site. It has a nice collection of advocates and writers, who deal with a variety of blood cancers (different leukemia and myeloma types, as well as lymphoma types). Even though not everyone is a Follicular Lymphoma patient, the site offers lots of good advice no matter where you are with your cancer experience.
I had a piece published this week on the site, called "Choosing Not To Fear." I actually submitted it to the site at the end of October, and they've just now published it. (That's not a complaint -- it tells you how many great writers and advocates they have contributing to the site. The waiting room is crowded, if you know what I mean -- and I'm sure you do.)
I hadn't thought about the piece in a while, so it was kind of fun to read it again after a few months. I have to say, I'm proud of this one. My wife pointed out to me that some of what I've been writing lately has been a little negative (the 12 Year Diagnosiversary blog post, in particular).
I can see that. It's funny -- things are going fairly well for me, in terms of my health. I'm 10 years post-treatment. My last oncology appointment (also described in a post that was a little on the negative side) went just fine.
Maybe with things going so well, I have the luxury of being annoyed by little things? Maye those things wouldn't have gotten to me so much if I was in need of a "Don't Sweat The Small Stuff" attitude?
So maybe my slightly-more-negative-than-usual attitude is actually a good thing?
Whatever the case, it was nice to go back a few months and read something on the more positive side.
The Blood-Cancer.com piece is about Blue-Footed Boobies, Sally Lightfoot Crabs, and other fearless creatures of the Galapagos Islands. Here are some pictures:
And, more importantly, it's about what we do the fear we have. I don't think we can ever avoid the fear -- we can't really choose to do something that we have no control over. But we do have lots of choice about how we handle that fear.
So take a look at the piece and think about about what you do with the fear you might feel.
I try to channel it into learning more about my disease, doing what I can to help others deal with it, and plan on living a very long life.
(And, occasionally, to be a little more negative than I should be. But I think we've agreed -- that's a good thing, right?)
Friday, February 14, 2020
CancerCast: Big Pharma
My last post, with the link to a radio show episode, was so popular that I'm giving you something else to listen to: a cancer podcast episode.
The podcast is called CancerCast, and it is produced by Weill Cornell Medicine, a medical school in New York City. In this episode, the host, Lymphoma Rock Star Dr. John Leonard, speaks about The Business of Cancer Drug Development. His guest is Dr. David Schenkein, a lymphoma specialist who now works for a couple of companies that make cancer treatments. The link includes the podcast itself and a written transcript.
He speaks about the process that a cancer drug goes to, from how scientists get ideas about what to try, up to getting approved by the FDA or other regulatory bodies. It's an interesting 30 minutes.
If you're like me, you probably have a kind of love/hate relationship with the pharmaceutical industry. Particularly in the United States, we hear lots of stories about drug makers who charge large amounts of money, sometimes increasing the prices of drugs for no reason other than to increase profits. (One very well-known example happened last year, with huge, random price increase for a medication that is very important to someone I love. It made me very, very angry.)
That's the "hate" part.
On the other hand, I've been alive for the last 10 years because of Rituxan. So I can't be too mad about that. There's definitely some "love" there.
As Dr. Schenkein explains, cancer treatments are so expensive because they do take up to 10 years to go from an idea to a pharmacy shelf. There's a lot of work there, and that work costs money. And, as he also explains, about 1 out of every 20 drugs that begin the process actually makes it al the way to approval. So 5% of treatments pay for the development of the other 95%, since they never make any money to cover their costs.
Dr. Schenkein also blames a few bad people in the industry for its bad reputation. Most do not want to put profits over patients, but do have a responsibility to employees and investors to make a profit. And, he says, many people working in the industry have a personal connection to the disease they are dealing with -- maybe a family member or friend who is affected by it. (I know that this is sometimes true. I've met people who work on diseases that affect people they love.) Not all of them, but some.
Part of the solution, he thinks, might come from the health insurance industry, taking on more of the cost so the patient doesn't have to. (Which might be true, though that also conveniently puts the price burden on someone other than the drug makers.) There is a lot that needs to be done in the healthcare field in the U.S. to make thing more affordable for patients, and I'm not smart enough to tell you what that is, but I've been saying that for about 8 years now. It would be great if someone came up with a solution.
One very positive thing: he thinks we're on the verge of an explosion in new treatments, with some of them curing some diseases. (He didn't mention Follicular Lymphoma, or any other disease, in particular.) As you may know from reading this blog, I always love to hear the excitement in the voices of experts when they talk about future treatments. It gives me hope. Maybe that excitement comes because the expert sees the profits that might be made, but I'll put that aside and just enjoy the idea that science might be catching up with cancer sometime soon.
I can't say that the podcast really changed my mind -- still some love, still some hate -- but it did provide some information and insight that I didn't have before.
For me, that matters a lot. Information is power, and the more we know as patients, the better off we are.
The podcast is called CancerCast, and it is produced by Weill Cornell Medicine, a medical school in New York City. In this episode, the host, Lymphoma Rock Star Dr. John Leonard, speaks about The Business of Cancer Drug Development. His guest is Dr. David Schenkein, a lymphoma specialist who now works for a couple of companies that make cancer treatments. The link includes the podcast itself and a written transcript.
He speaks about the process that a cancer drug goes to, from how scientists get ideas about what to try, up to getting approved by the FDA or other regulatory bodies. It's an interesting 30 minutes.
If you're like me, you probably have a kind of love/hate relationship with the pharmaceutical industry. Particularly in the United States, we hear lots of stories about drug makers who charge large amounts of money, sometimes increasing the prices of drugs for no reason other than to increase profits. (One very well-known example happened last year, with huge, random price increase for a medication that is very important to someone I love. It made me very, very angry.)
That's the "hate" part.
On the other hand, I've been alive for the last 10 years because of Rituxan. So I can't be too mad about that. There's definitely some "love" there.
As Dr. Schenkein explains, cancer treatments are so expensive because they do take up to 10 years to go from an idea to a pharmacy shelf. There's a lot of work there, and that work costs money. And, as he also explains, about 1 out of every 20 drugs that begin the process actually makes it al the way to approval. So 5% of treatments pay for the development of the other 95%, since they never make any money to cover their costs.
Dr. Schenkein also blames a few bad people in the industry for its bad reputation. Most do not want to put profits over patients, but do have a responsibility to employees and investors to make a profit. And, he says, many people working in the industry have a personal connection to the disease they are dealing with -- maybe a family member or friend who is affected by it. (I know that this is sometimes true. I've met people who work on diseases that affect people they love.) Not all of them, but some.
Part of the solution, he thinks, might come from the health insurance industry, taking on more of the cost so the patient doesn't have to. (Which might be true, though that also conveniently puts the price burden on someone other than the drug makers.) There is a lot that needs to be done in the healthcare field in the U.S. to make thing more affordable for patients, and I'm not smart enough to tell you what that is, but I've been saying that for about 8 years now. It would be great if someone came up with a solution.
One very positive thing: he thinks we're on the verge of an explosion in new treatments, with some of them curing some diseases. (He didn't mention Follicular Lymphoma, or any other disease, in particular.) As you may know from reading this blog, I always love to hear the excitement in the voices of experts when they talk about future treatments. It gives me hope. Maybe that excitement comes because the expert sees the profits that might be made, but I'll put that aside and just enjoy the idea that science might be catching up with cancer sometime soon.
I can't say that the podcast really changed my mind -- still some love, still some hate -- but it did provide some information and insight that I didn't have before.
For me, that matters a lot. Information is power, and the more we know as patients, the better off we are.
Sunday, February 9, 2020
Integrative Medicine and Cancer
I want to share a link to a program from Yale Cancer Answers. I've shared some before. Yale Cancer Answers is a local radio program that gets put up online after it has been broadcast, and it focuses on a different cancer-related topic every week. It's sponsored by Yale University's cancer hospital, and features a cancer expert who works at Yale in some capacity.
A lot of times, the topics are very specific -- too specific for me to be very interested in. But sometimes they are more general, and interesting for any cancer patient or caregiver.
The show from a couple of weeks ago had one of those more general topics -- Integrative Medicine.
The episode can be found here, if you want to listen to it, and here if you want to just read the transcript.
The Yale expert being interviewed is Dr. Gary Soffer, who is Assistant Professor of Clinical Pediatrics at Yale School of Medicine, but who also spends some time with patients practicing Integrative Medicine, especially cancer patients.
So what is Integrative Medicine? It's also sometimes called Complimentary Medicine, and includes things like yoga, massage, supplements, acupuncture, and meditation.
More importantly, I want to stress from the start what it s NOT -- it is NOT "alternative medicine." There's a really important difference between the two. Alternative medicine might include some of the practices that I list above, but are considered an alternative or replacement to traditional cancer therapy. You're relying on supplements and meditation to cure or control cancer. I think it's a huge mistake, and a Yale study (mentioned in this Yale Cancer Answers episode) shows that patients who use alternative medicine tend to die sooner that those who use Integrative or Complimentary medicine.
Integrative or Complimentary Medicine, on the other hand, is used with traditional cancer treatments (like chemotherapy or immunotherapy). It is integrated into a treatment plan, or used to compliment traditional treatments, rather than act as an alternative to them. Yoga might help with pain management, or supplements might help with some side effects, or meditation might help with emotional health. But they are used with traditional treatments, not instead of them.
I'm all for Integrative Medicine because it does not interfere with conventional therapies, and because, when done properly, it is evidence-based -- research that uses a rigorous scientific method, like a clinical trial (and not based on stories of individual patients), and whose results have been reported widely in peer-reviewed journals (and not just on the website of a treatment center). If someone mentions a treatment option that seems to good to be true, and it's accompanied by "It works! They've done studies!" then I want to know who "they" were and where exactly I can see those studies. Otherwise, I'll stick with what I read in medical journals.
I found a lot of what Dr. Soffer had to say to be pretty interesting. He thinks there is a lot more Integrative Medicine happening than patients let on. Patients might be too embarrassed to tell their doctor about, say, a supplement they might be taking. A lot of times, the doctor's response is to say, "I don't now anything about that, so stop taking it." But an Integrative Medicine program like Dr. Soffer's allows the patient to speak with someone who is open to hearing about what they are trying, and who can offer evidence-based advice. Sometimes, a yoga class might be perfect, but other times, it might take a physical toll on the body that wouldn't be good. Sometimes a supplement might be a great idea, but other times, it might actually interfere with the chemo being given.
The important thing is, the Integrative practice is being shared with someone who has some expertise, who can give some advice about the good and bad that comes with the practice.
And, again, let me stress -- these are practices that work with traditional treatments, not in place of them.
It's an interesting show. Give it a listen, or read (or translate) the transcript.
A lot of times, the topics are very specific -- too specific for me to be very interested in. But sometimes they are more general, and interesting for any cancer patient or caregiver.
The show from a couple of weeks ago had one of those more general topics -- Integrative Medicine.
The episode can be found here, if you want to listen to it, and here if you want to just read the transcript.
The Yale expert being interviewed is Dr. Gary Soffer, who is Assistant Professor of Clinical Pediatrics at Yale School of Medicine, but who also spends some time with patients practicing Integrative Medicine, especially cancer patients.
So what is Integrative Medicine? It's also sometimes called Complimentary Medicine, and includes things like yoga, massage, supplements, acupuncture, and meditation.
More importantly, I want to stress from the start what it s NOT -- it is NOT "alternative medicine." There's a really important difference between the two. Alternative medicine might include some of the practices that I list above, but are considered an alternative or replacement to traditional cancer therapy. You're relying on supplements and meditation to cure or control cancer. I think it's a huge mistake, and a Yale study (mentioned in this Yale Cancer Answers episode) shows that patients who use alternative medicine tend to die sooner that those who use Integrative or Complimentary medicine.
Integrative or Complimentary Medicine, on the other hand, is used with traditional cancer treatments (like chemotherapy or immunotherapy). It is integrated into a treatment plan, or used to compliment traditional treatments, rather than act as an alternative to them. Yoga might help with pain management, or supplements might help with some side effects, or meditation might help with emotional health. But they are used with traditional treatments, not instead of them.
I'm all for Integrative Medicine because it does not interfere with conventional therapies, and because, when done properly, it is evidence-based -- research that uses a rigorous scientific method, like a clinical trial (and not based on stories of individual patients), and whose results have been reported widely in peer-reviewed journals (and not just on the website of a treatment center). If someone mentions a treatment option that seems to good to be true, and it's accompanied by "It works! They've done studies!" then I want to know who "they" were and where exactly I can see those studies. Otherwise, I'll stick with what I read in medical journals.
I found a lot of what Dr. Soffer had to say to be pretty interesting. He thinks there is a lot more Integrative Medicine happening than patients let on. Patients might be too embarrassed to tell their doctor about, say, a supplement they might be taking. A lot of times, the doctor's response is to say, "I don't now anything about that, so stop taking it." But an Integrative Medicine program like Dr. Soffer's allows the patient to speak with someone who is open to hearing about what they are trying, and who can offer evidence-based advice. Sometimes, a yoga class might be perfect, but other times, it might take a physical toll on the body that wouldn't be good. Sometimes a supplement might be a great idea, but other times, it might actually interfere with the chemo being given.
The important thing is, the Integrative practice is being shared with someone who has some expertise, who can give some advice about the good and bad that comes with the practice.
And, again, let me stress -- these are practices that work with traditional treatments, not in place of them.
It's an interesting show. Give it a listen, or read (or translate) the transcript.
Tuesday, February 4, 2020
Oncologist Appointment
I had an oncologist appointment this morning. Let's get to the point -- everything still looks good.
Certainly not the most fun I've had at an appointment. I left a little annoyed.
I was supposed to have this appointment in early December. It would have been 6 months then, so it was about 8 months since my last one. Interestingly, it happened on World Cancer Day. I expected something special at the appointment. As I said on Twitter in the morning, I was hoping I'd get flowers and a cake:
Since most of you have been to an oncologist before, you can probably guess what happened. No flowers and no cake. In fact, after my last appointment, the office encouraged me to some early for a blood test. Of course, when I got to the blood draw station, they didn't have my paperwork. And when they called up the doctor's office, there was no one there who could give the authorization for it. So they sent me up to the doctor.
When I got there, the receptionist was waiting for me. As she checked me in, a nurse said to me, "Don't wander away." The receptionist said, "Looks like you're getting the royal treatment. Going in right away. It's the least we can do." I said I's been through worse things than not getting a blood test, but I appreciated the "royal treatment."
Of course, I didn't get the royal treatment at all. (And if I did get it, it was more William and Meghan than anything.)
I sat in the exam room for almost a full hour. I did my best to keep myself entertained. Back to Twitter:
I was annoyed. I knew I was feeling fine, no symptoms, no problems. I was going to be waiting a long time for a really fast appointment.
And that's what happened.
Dr. H was very apologetic when he came in. He was obviously in a rush, reading my digital file after he came in, instead of beforehand. Which was fine. At one point, he apologized for not remembering something about me.
"That's OK," I said. "I'm not very memorable. I like it that way."
He laughed. "Yes. It's good to not be memorable in a cancer hospital."
I relaxed a little. He asked if it was me who canceled the December appointment, or him. I said it was him, and he apologized again. I said I assumed he was at ASH. "You now what ASH is?" he said, surprised. I told him I read a lot. (I never let oncologists know how much I know.)
He talked a little bit about ASH. His assessment was that things were "incremental" this year -- no big news, just lots of little places where we are making progress.
He also said that, one thing he learned about Follicular Lymphoma this year was that we still don't know how to predict who will need treatment immediately, and who, like me, an watch and wait and then respond for 10 years to just Rituxan. And, unfortunately, there is no way to tell what my future will be, either.
But they'rw working on it, which is good. More big clinical trials are necessary, he thinks. With 1000 patients, maybe we can find some genetic markers that tell us which treatments will work. (So consider a clinical trial if you ever need treatment again -- though I hope you don't need it.)
A quick physical exam and a "You're doing great" and we were done.
He told me, again, that I could see him in a year if I wanted to. I told him 6 months was great. I'd miss him otherwise.
And then he told me to go do the blood work. No results from that yet. I assume it will be fine.
In all, about 3 hours out of my day, for a 10 minute conversation.
But I can't complain too much. It was another boring, not very memorable visit.
Just the way I like them.
Certainly not the most fun I've had at an appointment. I left a little annoyed.
I was supposed to have this appointment in early December. It would have been 6 months then, so it was about 8 months since my last one. Interestingly, it happened on World Cancer Day. I expected something special at the appointment. As I said on Twitter in the morning, I was hoping I'd get flowers and a cake:
Since most of you have been to an oncologist before, you can probably guess what happened. No flowers and no cake. In fact, after my last appointment, the office encouraged me to some early for a blood test. Of course, when I got to the blood draw station, they didn't have my paperwork. And when they called up the doctor's office, there was no one there who could give the authorization for it. So they sent me up to the doctor.
When I got there, the receptionist was waiting for me. As she checked me in, a nurse said to me, "Don't wander away." The receptionist said, "Looks like you're getting the royal treatment. Going in right away. It's the least we can do." I said I's been through worse things than not getting a blood test, but I appreciated the "royal treatment."
Of course, I didn't get the royal treatment at all. (And if I did get it, it was more William and Meghan than anything.)
I sat in the exam room for almost a full hour. I did my best to keep myself entertained. Back to Twitter:
I was annoyed. I knew I was feeling fine, no symptoms, no problems. I was going to be waiting a long time for a really fast appointment.
And that's what happened.
Dr. H was very apologetic when he came in. He was obviously in a rush, reading my digital file after he came in, instead of beforehand. Which was fine. At one point, he apologized for not remembering something about me.
"That's OK," I said. "I'm not very memorable. I like it that way."
He laughed. "Yes. It's good to not be memorable in a cancer hospital."
I relaxed a little. He asked if it was me who canceled the December appointment, or him. I said it was him, and he apologized again. I said I assumed he was at ASH. "You now what ASH is?" he said, surprised. I told him I read a lot. (I never let oncologists know how much I know.)
He talked a little bit about ASH. His assessment was that things were "incremental" this year -- no big news, just lots of little places where we are making progress.
He also said that, one thing he learned about Follicular Lymphoma this year was that we still don't know how to predict who will need treatment immediately, and who, like me, an watch and wait and then respond for 10 years to just Rituxan. And, unfortunately, there is no way to tell what my future will be, either.
But they'rw working on it, which is good. More big clinical trials are necessary, he thinks. With 1000 patients, maybe we can find some genetic markers that tell us which treatments will work. (So consider a clinical trial if you ever need treatment again -- though I hope you don't need it.)
A quick physical exam and a "You're doing great" and we were done.
He told me, again, that I could see him in a year if I wanted to. I told him 6 months was great. I'd miss him otherwise.
And then he told me to go do the blood work. No results from that yet. I assume it will be fine.
In all, about 3 hours out of my day, for a 10 minute conversation.
But I can't complain too much. It was another boring, not very memorable visit.
Just the way I like them.
Sunday, February 2, 2020
Lymphoma Survey
I'm encouraging all of you to take this year's Lymphoma Coalition Global Patient Survey on Lymphomas and CLL. It's available in 19 different languages, and should take about 15-30 minutes.
A small amount of time to possibly provide some big help.
The survey is sponsored by the Lymphoma Coalition. This is an organization made up of 81 different lymphoma-related organizations from 52 different countries. Their goal is to work together to increase awareness of lymphoma research, patient support (the coalition sponsors World Lymphoma Awareness Day every September), and problems. Some of those problems exist in separate countries, but a lot of them exist worldwide, so having a group that brings them all together helps all of us. they are especially interested in equity -- making sure everyone, no matter where you live, has the same access to information and to treatments as everyone else.
That's where the annual survey comes in.
By getting information from people all around the world, the coalition is able to make some comparisons, and highlight where we all need to do a better job of awareness and access.
The survey can be taken by anyone over 18, lymphoma patients or their caregivers. All responses are confidential, without your name attached to them, and all are important. More information is available on the first page of the survey.
It took me about 15 minutes to do the survey. I was asked questions about issues like treatment, side effects, and other experiences related to the disease. Not really difficult questions, and nothing I haven't thought about before.
The last survey they did was in 2018, and about 6600 lymphoma patients and caregivers took it. The Coalition prepared separate reports for any country that had more than 100 people respond. You can read the reports here.
Thanks for taking some time to do the survey.
A small amount of time to possibly provide some big help.
The survey is sponsored by the Lymphoma Coalition. This is an organization made up of 81 different lymphoma-related organizations from 52 different countries. Their goal is to work together to increase awareness of lymphoma research, patient support (the coalition sponsors World Lymphoma Awareness Day every September), and problems. Some of those problems exist in separate countries, but a lot of them exist worldwide, so having a group that brings them all together helps all of us. they are especially interested in equity -- making sure everyone, no matter where you live, has the same access to information and to treatments as everyone else.
That's where the annual survey comes in.
By getting information from people all around the world, the coalition is able to make some comparisons, and highlight where we all need to do a better job of awareness and access.
The survey can be taken by anyone over 18, lymphoma patients or their caregivers. All responses are confidential, without your name attached to them, and all are important. More information is available on the first page of the survey.
It took me about 15 minutes to do the survey. I was asked questions about issues like treatment, side effects, and other experiences related to the disease. Not really difficult questions, and nothing I haven't thought about before.
The last survey they did was in 2018, and about 6600 lymphoma patients and caregivers took it. The Coalition prepared separate reports for any country that had more than 100 people respond. You can read the reports here.
Thanks for taking some time to do the survey.
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