It's Blood Cancer Christmas Time again!
OK, that's a little sick, but when I see that the abstracts for the annual conference for the American Society of Hematology are available, I feel like a little kid on Christmas morning. The ASH conference is where some of the more cutting-edge research on blood cancers is presented every year. It's not necessarily research that can be put into practice immediately. In fact, it's more likely to be the first time that promising research gets presented to other experts in the field. But it's also at a stage where researchers are excited about sharing it with the world. So even if it isn't a big ol' stuffed Teddy Bear under the Cancer Christmas Tree, it's certainly a letter to Santa with all of the things we hope we'll get this year.
You can find the abstracts related to Follicular Lymphoma here. There are 191 of them, which is more than last year.
I've only done a quick scan of them, but it looks like maybe a few new focused treatments are being tested, there's some further testing of some established treatments, and a few surprises here and there. My plan is to look at and comment on some of these over the next few weeks -- the ones that excite me most.
I'll say it now, and say it again as I review things -- a lot of the stuff presented at ASH is in very early stages. It's stuff to keep an eye on for the (hopefully near) future, not necessarily stuff to ask your oncologist about when the subject of your next treatment comes up. But we can be hopeful,and excited about it anyway.
Stay tuned.
Wednesday, November 12, 2014
Monday, November 10, 2014
1000
This is my 1000th post to Lympho Bob.
I've seen it coming for a couple of months, and I've kind of had it in the back of my mind that I should do something special for it. I thought maybe it could match up with Thanksgiving, but the timing wasn't right. Would have been nice to be thankful in the 1000th post.
But, really, I am thankful, and I don't need a federal holiday to do it.
I'm thankful to all of you who read and comment and encourage me to keep writing.
If you've been reading for a while, or if you read some of the posts from the beginning, you know why I started this blog. Like so many of you, when I was diagnosed, I had no idea what I was dealing with. I heard CANCER and assumed the worst. Even for a few months, I still didn't quite grasp what an indolent cancer was, and why watching-and-waiting made sense, and what it all meant.
When I started, the blog became a way of letting people know what was happening. My wife and I know from experience, when someone we know and care about is sick, sometimes we're in a position to say, "How is it going? How are you feeling?" But we also know that sometimes, there are people that you care about, but that you aren't close enough to that you can call anytime and ask how they're doing.
So we decided that I would start this blog. It would be a way for people to know what was going on without wondering, "Is it OK if I call?" or hearing something from someone else who might have heard something about how I was doing and not getting the whole story. Basically, the blog would be a place for people to keep up without having to ask.
And it worked that way for a while. Friends and family visited regularly, and checked in on me, and made comments. And after a while, my doctor visits weren't so frequent, and I ran out of things to say about my lymphoma. And fewer of my friends and family read and commented.
Eventually, it became clear that I probably wasn't going to die any time soon, at least not from my indolent Follicular Lymphoma.
And eventually, my family and friends found other ways to gather together online. Which was fine. I was happy for the reason.
And every now and then, I'd get a comment from someone with Follicular Lymphoma who had somehow found the blog and who appreciated what they read. That was always nice.
And one time, someone who ran social media for a cancer drug company (I don't remember which one) started posting links to my posts on the company Facebook page and Twitter feed. That was pretty cool.
And then, somehow, more people found the blog. And I started to hear from more and more Follicular Lymphoma patients that they enjoyed reading what I'd written. And that was very cool.
Writers love to be read, and when I write on this blog, I always have readers in mind. But in the end, I write this for myself. If all of you went away (not that I want you to), I'd still keep writing. The blog gives me incentive to keep learning about my disease and what's being done to make it go away. I won't stop doing that -- I'll always be a Cancer Nerd. And every now and then, the blog is a place to express a frustration, or work through an idea. I won't stop doing that, either.
I don't know if I could have ever imagined, when I was first diagnosed, that the blog would last as long as it has, or that it would become what it has become. But I'm glad it has.
So I thank you all for reading. I promise I will continue to do my best to write about things that matter to Follicular Lymphoma patients, and I will do it as clearly and accurately as I can.
Expect another thousand posts -- at least.
I've seen it coming for a couple of months, and I've kind of had it in the back of my mind that I should do something special for it. I thought maybe it could match up with Thanksgiving, but the timing wasn't right. Would have been nice to be thankful in the 1000th post.
But, really, I am thankful, and I don't need a federal holiday to do it.
I'm thankful to all of you who read and comment and encourage me to keep writing.
If you've been reading for a while, or if you read some of the posts from the beginning, you know why I started this blog. Like so many of you, when I was diagnosed, I had no idea what I was dealing with. I heard CANCER and assumed the worst. Even for a few months, I still didn't quite grasp what an indolent cancer was, and why watching-and-waiting made sense, and what it all meant.
When I started, the blog became a way of letting people know what was happening. My wife and I know from experience, when someone we know and care about is sick, sometimes we're in a position to say, "How is it going? How are you feeling?" But we also know that sometimes, there are people that you care about, but that you aren't close enough to that you can call anytime and ask how they're doing.
So we decided that I would start this blog. It would be a way for people to know what was going on without wondering, "Is it OK if I call?" or hearing something from someone else who might have heard something about how I was doing and not getting the whole story. Basically, the blog would be a place for people to keep up without having to ask.
And it worked that way for a while. Friends and family visited regularly, and checked in on me, and made comments. And after a while, my doctor visits weren't so frequent, and I ran out of things to say about my lymphoma. And fewer of my friends and family read and commented.
Eventually, it became clear that I probably wasn't going to die any time soon, at least not from my indolent Follicular Lymphoma.
And eventually, my family and friends found other ways to gather together online. Which was fine. I was happy for the reason.
And every now and then, I'd get a comment from someone with Follicular Lymphoma who had somehow found the blog and who appreciated what they read. That was always nice.
And one time, someone who ran social media for a cancer drug company (I don't remember which one) started posting links to my posts on the company Facebook page and Twitter feed. That was pretty cool.
And then, somehow, more people found the blog. And I started to hear from more and more Follicular Lymphoma patients that they enjoyed reading what I'd written. And that was very cool.
Writers love to be read, and when I write on this blog, I always have readers in mind. But in the end, I write this for myself. If all of you went away (not that I want you to), I'd still keep writing. The blog gives me incentive to keep learning about my disease and what's being done to make it go away. I won't stop doing that -- I'll always be a Cancer Nerd. And every now and then, the blog is a place to express a frustration, or work through an idea. I won't stop doing that, either.
I don't know if I could have ever imagined, when I was first diagnosed, that the blog would last as long as it has, or that it would become what it has become. But I'm glad it has.
So I thank you all for reading. I promise I will continue to do my best to write about things that matter to Follicular Lymphoma patients, and I will do it as clearly and accurately as I can.
Expect another thousand posts -- at least.
Thursday, November 6, 2014
Vaccines for Follicular Lymphoma
I've been swamped lately, folks. It's one of those busy times of the year at work, and I took on a project that is taking way more time than I expected. Not to mention my oldest is applying to colleges now, and that's taking time and energy from all of us. I haven't even had time to respond to your comments, let alone write full posts. Ugh.
So here's a quickie so you know I'm still around:
A fast video from Targeted Oncology. Dr. Joshua Brody, Director of the Lymphoma Immunotherapy Program at Mt. Sinai Hospital, gives a quick take on Vaccines for Follicular Lymphoma. He points out that previous attempts at vaccines haven't been successful because they have targeted one Idiotype. Newer attempts take a more "holistic" approach, and target any antigens related to cancer cells.
The video is only about a minute long, but it gets at the pint that we shouldn't give up on vaccines -- they may be an important part of immunotherapy for us. (As I have mentioned before, the lymphoma specialist I saw soon after I was diagnosed was very excited about vaccines, and so they have always fascinated me.)
If you want to read a little more about Dr. Brody's work, check out another piece from Targeted Oncology, describing the results of a Phase I/II trial run by Dr. Brody, involving another immunotherapy treatment. To be honest, I read it but didn't look into it, so I while I get the overall idea of the approach, I don't know much about the parts.
But it's something else to be hopeful about.
(I'll get to those comments soon, I hope.....)
So here's a quickie so you know I'm still around:
A fast video from Targeted Oncology. Dr. Joshua Brody, Director of the Lymphoma Immunotherapy Program at Mt. Sinai Hospital, gives a quick take on Vaccines for Follicular Lymphoma. He points out that previous attempts at vaccines haven't been successful because they have targeted one Idiotype. Newer attempts take a more "holistic" approach, and target any antigens related to cancer cells.
The video is only about a minute long, but it gets at the pint that we shouldn't give up on vaccines -- they may be an important part of immunotherapy for us. (As I have mentioned before, the lymphoma specialist I saw soon after I was diagnosed was very excited about vaccines, and so they have always fascinated me.)
If you want to read a little more about Dr. Brody's work, check out another piece from Targeted Oncology, describing the results of a Phase I/II trial run by Dr. Brody, involving another immunotherapy treatment. To be honest, I read it but didn't look into it, so I while I get the overall idea of the approach, I don't know much about the parts.
But it's something else to be hopeful about.
(I'll get to those comments soon, I hope.....)
Saturday, November 1, 2014
The "Fab Five" for Lymphoma
A few weeks ago, Medscape featured a video discussing some highlights from the 2014 Congress of the European Society for Medical Oncology (ESMO) in Madrid. The speaker is Dr. Martin Dreyling, professor of medicine at the University of Munich Hospital in Germany, and his focus is on recent developments in lymphoma.
The link will bring you to the video (it's about 12 minutes long) and a transcript (if you'd rather read his comments than watch).
In the video, Dr. Dreyling discusses the "Fab Five" (playing on the nickname for The Beatles, who were very popular in Germany before they came to the U.S.). But Dr. Dreyling is referring to the five compounds that are offering possible ways of avoiding chemotherapy for lymphoma patients (the unofficial theme of the ESMO conference). The Fab Five are: Bortezomib (Velcade), Ibrutinib, Idelalisib, Lenalidomide (Revlimid), and Temsirolimus (another kinase inhibitor, used for kidney cancer, now being tested for Mantle Cell Lymphoma). The Fabs, he says, "will help us."
Dr. Dreyling focuses on developments related to several specific lymphomas, including Follicular Lymphoma.He calls this section "Defying the Status Quo," by which he means moving beyond the current preferred approach in Europe, which is chemotherapy + Rituxan. Research shows that Follicular Lymphoma is sensitive to "targeted therapy," rather than the shotgun approach of chemotherapy. Idelalisib, for example, has been very effective (with over 50% response rates) for patients who have had chemo + Rituxan, but for whom that combination no longer works.
As an example of an approach that is used as a first-line treatment, he points to the RELEVANCE study, which involves Rituxan + Revlimid (R + R). The combination seems to work better than the two treatments given separately, and the RELEVANCE study involves over 1000 patients, very large even for a phase III trial. The response has been very good, and we'll know soon if it is as good, over time, as chemo + Rituxan.
The challenge for the next few years, as he sees it, will be to determine which of the Fabe Five compounds (and others like them) are working, but also what kind of markers will be found that will help identify which treatments will work best with which patients, and which will work best for all patients.
So while this wasn't a review of a lot of particular studies, I did find it valuable to see what is going on in Europe. I think they are dealing with a lot of the same challenges that we are dealing with in the U.S., and having some of the same successes.
And it's always fun to watch a lymphoma expert express optimism fore the future.
Tuesday, October 28, 2014
Ixazomib (Another Inhibitor)
The Blood Cancer Journal recently published the results of a phase I clinical study on Ixazomib, a proteasome inhibitor. It showed some promise for use on Follicular Lymphoma.
The article compares Ixazomib to Bortezomib (also known as Velcade), which was the first proteasome inhibitor to get approval. (It was approved for Mantle Cell Lymphoma, though some clinical trials for Follicular Lymphoma have looked good.) Bortezomib/Velcade works by blocking proteasomes, which help keeps cells healthy by getting rid of older and messed-up proteins. Protease inhibitors block that process in cancer cells, so all of those messed up proteins pile up in the cell and cause it to die.
Ixazomib will work in a similar way, though it has a different structure than Bortezomib/Velcade, which the developers hope will result in greater effectiveness and fewer side effects.
The phase I trial was meant to test whether or not it would work on certain types of lymphomas, to measure side effects, and to determine what the ideal dose would be. Of the 26 patients who went through the trial, 11 had Follicular Lymphoma, and 4 of them had a response. This is good enough to move on to a phase II trial.
The usual warnings apply here:
Phase I is very early. There will be a lot of time between now and when (and if) this gets approval, and clinical trial volunteers will be needed. It will also face the hurdle of needing to show it is better than what we have now, with Velcade. A response from 4 out of 11 FL patients is good, though not overwhelmingly good. We've seen a few monoclonal antibodies try to outperform Rituxan, and so far no one has hit on the magic formula that will do that. Will the same thing happen with some of these attempts to improve various inhibitors?
We shall see.
The article compares Ixazomib to Bortezomib (also known as Velcade), which was the first proteasome inhibitor to get approval. (It was approved for Mantle Cell Lymphoma, though some clinical trials for Follicular Lymphoma have looked good.) Bortezomib/Velcade works by blocking proteasomes, which help keeps cells healthy by getting rid of older and messed-up proteins. Protease inhibitors block that process in cancer cells, so all of those messed up proteins pile up in the cell and cause it to die.
Ixazomib will work in a similar way, though it has a different structure than Bortezomib/Velcade, which the developers hope will result in greater effectiveness and fewer side effects.
The phase I trial was meant to test whether or not it would work on certain types of lymphomas, to measure side effects, and to determine what the ideal dose would be. Of the 26 patients who went through the trial, 11 had Follicular Lymphoma, and 4 of them had a response. This is good enough to move on to a phase II trial.
The usual warnings apply here:
Phase I is very early. There will be a lot of time between now and when (and if) this gets approval, and clinical trial volunteers will be needed. It will also face the hurdle of needing to show it is better than what we have now, with Velcade. A response from 4 out of 11 FL patients is good, though not overwhelmingly good. We've seen a few monoclonal antibodies try to outperform Rituxan, and so far no one has hit on the magic formula that will do that. Will the same thing happen with some of these attempts to improve various inhibitors?
We shall see.
Sunday, October 26, 2014
Treatments for Follicular Lymphoma
You ask for it, you get it. That's how things work here at Lympho Bob. Satisfaction guaranteed or your money back.
A couple of weeks ago, an anonymous commenter asked:
Thank you for your blog! It has been really informative and helpful. I was diagnosed a month ago and reading your blogs has provided much insight into the medical and emotional aspects of this disease. I was wondering if you would consider doing an outline of the current treatment options available at this time. There is a lot of information out there and it can get confusing in terms of what the current options are. Thanks again!
So here's some of what he has to say, with my commentary:
A couple of weeks ago, an anonymous commenter asked:
Thank you for your blog! It has been really informative and helpful. I was diagnosed a month ago and reading your blogs has provided much insight into the medical and emotional aspects of this disease. I was wondering if you would consider doing an outline of the current treatment options available at this time. There is a lot of information out there and it can get confusing in terms of what the current options are. Thanks again!
My response was to list a few, with the warning that I'd surely miss something, and to check the "Treatments" section at Lymphomation.org for more detail. I still think that's pretty good advice, but I also came across a piece in The Pharmaceutical Journal a couple of days ago that lays out current treatments for a few different types of lymphoma, including Follicular Lymphoma. It seems like the kind of list that the reader above was looking for.
But here are some warnings about the list:
First, it was published in a
journal that is put out by the Royal Pharmaceutical Society. It refers to
treatments that have been approved in the United Kingdom, not necessarily the
United States. I think everything discussed here is also available in the US,
but there may be some small differences in dosage, or in stage of treatment
(frontline or refractory -- that is, some treatments are approved for patients
as the first treatment they will have, while others are approved for patients
who have already had certain types of treatments that stopped working).
Second, the author of the article
gives his opinions about some of the treatments, and while he is objective
about a lot of it, and gives links to specific articles in medical journals, he
also throws some opinions in there, directly and indirectly. Goodness knows I
don't have any objection to opinions, since I throw so many out there myself.
But I think some commentary on some of what he says is necessary.
Third, it sounds to me like the
person who wrote the comment above does not have an aggressive form of
Follicular Lymphoma. A month in, and still considering treatment options? The
oncologist must feel like there is some time to decide. I was in the same
situation, and that colors the way I look at this article. Aggressive forms of
Follicular Lymphoma require different decisions.
So here's some of what he has to say, with my commentary:
- “Common Chemotherapy Schedule for non-Hodgkin Lymphoma”
The author provides a nice chart
with the treatment schedules for four different types of traditional
chemotherapy with Rituxan. I’m not going to pretend to know if those are the
same dosage schedules for the US. Honestly, I have no idea. But it is important
to note that all four (R-CHOP, R-CVP, FCR, and R-Bendamustine) are available in
the US, and are still used. In fact, the
commenter left the comment on a post I wrote about these chemos. So I don’t
need to get more into my feelings about them, other than to say, I think they’re
on their way out, especially the first three, and that’s a good thing. They
still have a place in Follicular Lymphoma, but I think if an oncologist suggested
one of them as a first treatment, I’d have a conversation about why, and why
other options aren’t being considered.
- “R-bendamustine is increasingly being used as the combination schedule of choice.”
And if an oncologist is in favor of
chemotherapy, R-Bendamustine would probably be the best choice of those four
mentioned. The author acknowledges this, discussing how R-B has results as
least as good as R-CHOP, but with less toxicity and fewer side effects. He also
points out that Fludarabine (in the FCR combo) is no longer recommended in the
latest European treatment guidelines, since it “has been found to increase
rates of haematological toxicity” (which I think means it might give you a
secondary cancer).
- Follicular lymphoma often presents asymptomatically and does not always require immediate treatment. Treatment is usually reserved until the patient becomes symptomatic, which occurs a median of 2.5 years after diagnosis, but can be more than 10 years.
I think this is more or less true, though I would quibble over "treatment is usually reserved until the patient becomes symptomatic." That's describing watching-and-waiting, and I don't think it's accurate to say that W & W is the "usual" strategy. I think it's just the opposite, with maybe a quarter of patients holding off on treatment. Whether or not to begin treatment immediately, let alone which treatment to try, is still a big controversy in Follicular Lymphoma, at least in the US. I think that matters. Watching and waiting is a big decision, one that involves emotional and not just physical factors. It's a false impression to imply that most patients watch and wait until they show symptoms.
- "Treatment with rituximab at diagnosis is currently being evaluated in clinical trials and, although it has yet to demonstrate an overall survival benefit, it does appear to improve progression-free survival rates."
And this is about all he has to say about Rituxan. I think it plays a much larger role in first-line or initial treatments for patients in the US, whether or not they have symptoms. It's an option, and a very valid option, for someone who is considering a first treatment. It's also such an important part of Follicular Lymphoma treatment (it's part of all of those chemotherapy options without ever being discussed) that maybe it's easy to take for granted and overlook. It should be overlooked.
- "Patients who present with limited disease can be treated with radiotherapy alone, which may cure the lymphoma."
Here, he's talking about stage 1 or stage 2 disease, something very limited and isolated, that can be treated with radiation, the way some solid cancer are treated. The problem is, only about 15% of Follicular Lymphoma patients are diagnosed at this early stage, since they are often without symptoms.
And this is where I might talk about RIT -- RadioImmunoTherapy. Liquid cancers like FL, with that stage 1 exception, can't be treated with traditional radiation, since blood cells have a tendency to not keep still (since they are moving through the blood). RIT tracks down those cancer cells and brings a dose of radiation directly to them. It's a treatment that works for a lot of people, and for a lot of reasons is not used as much as it should be. This article is just further evidence that RIT is ignored.
- "It is unclear whether ASCT should be used in preference to rituximab
maintenance therapy in follicular lymphoma. Younger, fitter patients may
be considered for an allogeneic stem cell transplant using reduced
intensity conditioning, as this is the only potentially curative option
for this form of non-Hodgkin lymphoma."
And finally, he discusses Stem Cell
Transplants. And again, this could use more space than it receives here. He
refers to Allo Stem Cell Transplants, but there are also Auto SCTs, and both
types are used for different purposes.
The article also includes some
"future treatment options," including Ibrutinib and Idelalisib. There
are even more than that, of course.
I don't think this is a bad
article. It's not really meant as a definitive guide for patients, so it would
unfair to criticize it for not being one. But I also think it's important to
read carefully.
I'll give the same advice as
before: for more information, Lymphomation.org
is a good place to go. Lots of other websites give some basic infiormation about
the different types, but, like this article here, you end up getting only part
of a story.
The best place to go for
information is your oncologist. He or she is the one who knows you and your
situation best.
Friday, October 24, 2014
Dr. Sharman on Lenalidomide for Indolent Lymphoma
Dr. Jeff Sharman has another excellent blog post that is of interest to Follicular Lymphoma patients. This one looks at the combination of Lenalidomide and Rituxan for Indolent Lymphoma, including Follicular Lymphoma.
The inspiration for the post was a study from The Lancet Oncology that described the results of a phase II clinical trial for that combination. I haven't had a chance to read it yet, but we can let Dr. Sharman do that work for us. I highly recommend his post.
Dr. Sharman does an excellent job of explaining Immunotherapy, and how this particular combination serves to jump start the body's natural immune reaction to fight cancer.
As he describes it, B cells (one of three types of immune system cells) are able to put the other two types (T cells and NK cells) to sleep, in something called "psuedo-exhaustion." While they sleep, the B cells do their work. (Follicular Lymphoma is, of course, a type of B cell cancer.)
Lenalidomide basically reverses the psuedo-exhaustion, and wakes up those other two immune cells. Combine Lenalidomide with Rituxan, which seeks out B cells, and you have a (literally) killer combination that works very well.
How well? When you combine the two, you get an overall response rate of over 90%, which is comparable to Rituxan + chemotherapy. However, the Complete Response rate for the combo is about 87%. Compare that to Rituxan + chemo, which has a CR of about 35%.
Dr. Sharman concludes with some information about clinical trials for Lenalidomidefor Follicular Lymphoma. When you read the bog post, be sure to check out those links as well.
Another great post from Dr. Sharman.
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