Thursday, July 20, 2017

I Don't Care About What Caused My Cancer

As some of you may remember, this past spring I went to a conference for online health advocates. It was a good experience for me -- I had never thought of myself as an "advocate," and using that word made me rethink a lot of what I do.

So I've been more active on Twitter (follow me at @Lymphomaniac), and I have contributed more to the Facebook groups that I belong to that are dedicated to lymphoma. I'd love to do something with video, but that's a lot of work (and I don't know if I have the face for video....).

The other thing I said I would try to do was write more, and publish in places other than Lympho Bob. As far as advocacy goes, it would be nice to try to reach a larger audience.

Well, yesterday, I started that journey. A site called The Mighty published one of my pieces as one of their Featured Stories. The Mighty publishes articles written by patients, caregivers, doctors, and others, who live with cancer, chronic illnesses, mental health issues, and other conditions.

My piece is called "I Don't Care About What Caused My Cancer," and I invite you to click on the link and read it (and share it with anyone else that you think might like it). It touches on some familiar themes -- the emotional side of being a Follicular Lymphoma, not dwelling on the past, and living with hope. I enjoyed writing it, and I hope you enjoy reading it.

I'm hoping to keep finding places to share my writing and reach more people. I'll let you know when I do. (But the blog will always be my first Lymphoma Love....)

Thanks again for reading.

Monday, July 17, 2017

Doctor Who and Cancer

It' s been a busy week. Little time for reading and writing about cancer.

But I did catch the news yesterday that there will be a new lead on Doctor Who.

If you aren't a fan, Doctor Who is a British science fiction TV series that started over 50 years ago. The main character, The Doctor, can travel through space and time, and so goes around the universe saving people (and non-people) whenever there is trouble. (That's not a great description, but I think it's as accurate as you can get in one sentence.)

When the series started in the 1960's, the lead actor got sick and had to quit. The show was popular, so the people in charge decided that the character would have a unique feature -- instead of dying, he would regenerate, coming back to life as a completely different person (or, at least, different looking, since he was still The Doctor, with the same past -- or future, since he can travel through time). It was a smart move, since it allowed different actors to play the same role. It's a big reason why it's been on TV for more than 50 years.

The big deal about the new Doctor is that, for the first time, the character will be played by a woman, Jodie Whittaker. There has been talk for a few years about this possibility, and a lot of people were (and are) upset about it. The Doctor has always been a man. But, since the character can regenerate into any person, there is no reason why (other than tradition) he can't take the form of a woman.

Now, I generally avoid controversial topics, and among Doctor Who fans, this is about as controversial as it gets. But I'm going to come out and say (for those of you who are fans of the show, and who care) that I am in favor of the new female Doctor.

And for those of you who aren't fans of the show, you may want to care anyway.

You don't need to read Lympho Bob for too long to understand that I am forward-thinking. By that, I mean that I look forward to the future. The past is done. The present is important. But the future is where the real fun is. You know I get excited about pre-clinical trial research -- treatments that might not be available for another 10 years. That's fun to me.

And that's what Doctor Who is all about -- what comes next. Not just because The Doctor can jump ahead to the future, but because he (or she) can become someone completely new. He (or she) can regenerate.

One of the questions that has always fascinated me as a cancer patient has been, If cancer changes us, then who do we become? Do we really change? Does all of us change? Or just part of us? And is it change for the good? And how much of that change to we control?

I do think part of us changes, though probably not all of us. And I do think we can control that change, or at least a lot of it. And if we want it to be a good change, then we can make it that way. And because, for many of us, Follicular Lymphoma is a disease that will stay with us for a long, long time, we have that much more time to think about the changes we want to see.

So I'm all in favor of the new, female Doctor. She represents the kind of change -- and hope -- that I have come to look forward to as a cancer patient.

(Did I mention that The Doctor is all about Hope? The new Doctor even mentioned that when it was announced that she would play the role: "It's more than an honour to play the Doctor. It means remembering everyone I used to be, while stepping forward to embrace everything the Doctor stands for: hope. I can't wait." She gets it.)

So I can understand the fans of the show who don't like the change. But I also know that, as a cancer patient, change is unavoidable, and very often good. And even if we can't control the things that change, about us or the world or about the things we love, we can certainly control the way we react to it all.

And as often as I can, I choose excitement, anticipation -- and hope and regeneration.

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And thanks, once more, to all of you who voted for me for the WEGO Health Awards. You're the best. The voting will go on until September. I will keep you updated.

Tuesday, July 11, 2017

Vote for Best Blog

I am pleased to announce that the Lympho Bob has been nominated for two awards from WEGO Health.

WEGO Health is a company that matches patient advocates with health care businesses and organizations, helping to make sure that patient voices are heard. For six years, they have also sponsored awards for health advocates.

I have been nominated for Best in Show: Blog and Best Kept Secret. There are 16 awards, and dozens  of really excellent nominees. It's very cool to be nominated. As I've said before, I'd keep writing the blog even if I was the only one who read it, but a little recognition is nice, too.

The awards are now in the Endorsement phase, which means people can vote to endorse the nominees for the awards. If you are so inclined, you give me your endorsement by clicking here.

And here's a bonus -- you'll get to see my picture and learn my real name (which isn't Lympho Bob, or Bob Talisker -- my email address isn't my name, it's my favorite scotch).

You can only vote for each nominee one time, so they will ask you for an email address, to ensure you have only voted once. If that's a turn off, no problem. Your being a loyal reader is good enough for me.

Once again, thanks for all your support. More good stuff coming soon.


Saturday, July 8, 2017

Rituxan Biosimilars for Follicular Lymphoma

There has been a bunch of news about biosimilars for Rituxan in the last month or so. Again, this is kind of old news, but it's worth mentioning because it affects so many people -- there is biosimilar news for Europe and the U.S.

First, some background.

When treatments like Rituxan are approved, they come with a time limit. No one else is allowed to sell something similar for a set period of time. This is fair -- the company that developed the treatment spend many years and a lot of money working on the treatment in the laboratory, then through clinical trials, and then regulatory processes. That period of time gives the company exclusive rights to the treatment, letting them make up those costs and earn a profit.

After that period of time, other companies are allowed to develop copies that are probably cheaper. (They are cheaper because the company that developed them also has to market them and get people to want them. Companies that make the copies don't need to pay for marketing and advertising.)

Those copies can take different forms. Most of us are familiar with generics. You get a headache, you can buy Tylenol or another brand-name painkiller. Or, for a little less, you can buy acetaminophen, a generic version. Generics are fairly easy to create. They follow a chemical formula. Mix up the elements the same way (a little carbon, some hydrogen, whatever), and you'll get the same thing every time.

[In school, I did really well in biology, and really NOT well in chemistry. You probably suspected that.]

Biosimilars are different than generics. Generics are about chemistry, with atoms that will always behave the same way, and give a predictable result. Biosimilars are about biology -- living things -- and they don't always behave the way we would like them to. So creating a biosimilar is harder. It needs to behave the same way, go after the same protein on the surface of the cancer cell (CD20), stay in the body for the same length of time, spread around the body in the same way, be as safe, and be as effective for a long time. That's a lot for a copy to do.

And yet, some companies have managed to create biosimilars for Rituxan, and they seem to be working.

About a week ago, the FDA (in the U.S.) accepted an application for CT-P10, a biosimilar for Rituxan. The decision for this will probably come in early 2018. (It's trade name will be Truxima, and the FDA request is based on some really good trial results presented at the International Conference on Malignant Lymphoma in Switzerland last month.)

About 3 weeks ago, the European Commission approved a biosimilar for Rituxan (known as MabThera in Europe). The biosimilar is called Rixathon.

Acellbia, another Rituxan biosimilar, will probably be approved next month in India. It is already approved in Bolivia and Honduras under the name USMAL.

Patients and doctors will have the option to go with Rituxan (and I'm sure many will), or with the biosimilar. Insurance companies and healthcare systems that pay for the treatment might be more enthusiastic about the less expensive alternative.

The important thing, to me as a patient, is that we have options. If, for example, an insurer is able to lifetime cost cap, then a cheaper treatment with similar safety and results is obviously a very good thing, especially for a disease like Follicular Lymphoma that might require many different treatments over time.

And this is probably a good time to say Thank You to Rituxan. you've given me seven and half good years without treatment, and probably extended the survival of thousands of Follicular Lymphoma patients. We certainly owe you that much.



Wednesday, July 5, 2017

Rituxan Injections for Follicular Lymphoma

This news is a few weeks old now, but it's worth mentioning in case anyone missed it: The FDA has approved subcutaneous injections for Rituxan.

That means you may not need an IV infusion to get Rituxan anymore. You can get a shot under the skin instead.

(Barbara mentioned this in a comment a couple of weeks ago, and when I first wrote about this possible approval a couple of weeks ago, Popplepot commented about his experience with it. More on that below.)

The new treatment has a slightly different formula, so it's going by a different name -- Rituxan Hycela. It will include the same stuff that is in the IV version of Rituxan, plus Hyaluronidase, an enzyme that helps thin out something called Hyaluronan, a substance that surrounds the cells. The Hyaluronidase will make it easier for the Rituxan to get where it needs to go.

The biggest advantage of Rituxan Hycela will be the time it take to administer. A shot under the skin will take minutes, while the IV (as many of us know) can take hours. This is an excellent Quality of Life improvement -- we can get out of the doctor's office that much quicker.

When I wrote about this a few months ago, I called it "a shot in the arm" for Rituxan. (For those of you unfamiliar with the expression, it means a boost or an encouragement.) But I got that wrong -- Rituxan Hycela won't be given in the arm.

I'll let Popplepot describe how he received it, in a comment he left on that post that I linked above (it's been approved in the EU since 2014):

Hi Bob, I had sub cut half way through my ritux only treatment, it is administered by a tummy injection, I often joked with the nurses that I removed my six pack for a 24 pack so they had a fatter tummy to inject. It is a fantastic advance in and out in 15 minutes pretty painless sits under the skin like a gel for a day or so, I could make a smiley face by drawing with my finger on the injection site that would last for 15 mins or so lol, a bit strange you may think but I always try to bring humour to my diagnosis, especially in front of my very much loved family, i think when I smile and laugh they smile and laugh inside that Dad/ Husband/son is coping, privately it's hard but I won't let it be hard on them through me. Hope this makes sense 😉 

I replied that I thought his smiley face was disgusting and hilarious, and I wished I had this when my kids were small.

(Thank you again, Popplepot, for the information, and for having a great sense of humor about all of this. It's a way of looking at things that I absolutely agree with.)

(And thanks again, Barbara, for alerting me about the news a couple of weeks ago.)

The Rituxan Hycela shot can only be given to patients who have had one full dose of IV Rituxan. This makes sense -- the slower infusion will allow doctors and nurses to see if the patient had an allergic reaction. This will give them more time to deal with it. Once they know how to deal with it, the faster injection can be used.

So it won't be a complete replacement for IV Rituxan, but it could replace most of the time-consuming IVs that a patient gets. I have also see the injection as saving money, since the patient will spend less time being observed by a health professional. However, I haven't seen any breakdown of lower costs.

Hyaluronan
HyaluronanH
hyaluronidaseHyaluronidase

Thursday, June 29, 2017

Two Excellent R-Squared Studies for Follicular Lymphoma

It seems to me that the combination treatment that has gotten the most excitement from researchers in the last 5 years has been R-squared -- Rituxan + Revlimid (also known as Lenalidomide). Even when research results seem kind of mediocre to me, researchers comment on how great R-Squared is.

And now there are a couple more reasons for them to be excited. Both came from research that was presented this month at the 2017 International Conference on Malignant Lymphoma in Luagano, Switzerland.

The first study looked at R-Squared in Follicular Lymphoma patients who had not had any previous treatments. Results were excellent, with 95% of the 66 patients getting a response, and 72% of them getting a Complete Response. More importantly, The 5 year Progression Free Survival rate was 70%.

Seems like something that worth getting excited about.

The other study looked at a different population -- FL patients who had been heavily treated, with some of the 160 Follicular Lymphoma patients in the study having already received up to 9 previous treatments.
2017 International Conference on Malignant Lymphoma210

For this study, patients received R-Squared, and were then given maintenance of either straight Rituxan, or more R-Squared.

Results were, again, very strong, especially since this group was either double refractory to immunochemotherapy (both Rituxan and traditional chemo had stopped working), or had "high risk" FL, or had relapsed early (within 2 years after diagnosis and first treatment).

Of the 50 FL patients who were double refractory, the Overall Response was 45%, with a 21% Complete Response rate. The 1 year PFS for this group was 65%.

Of the 52 FL patients who relapsed early, the Overall Response was 47%, also with a 21% Complete Response rate. The 1 year PFS for this group was 49%.

Of the 60 FL patients who were considered High Risk, the Overall Response was 66%, and the 1 year PFS for this group was 70%.

This second study was a phase III clinical trial, which means it could be ready for FDA approval soon.

It is worth noting that, for all the excitement R-Square creates, it has not been approved yet by the FDA for any Follicular Lymphoma patients. there have been concerns about Lenalidomide/Revlimid's toxicity for a while. In this second study, there were several side effects, including several types of low white blood cell counts that could lead to higher risk of infection, fever, and blood clots. 

But overall, these studies seem to add to the happy feelings that lymphoma researchers have about the combination.  Another arrow in the quiver -- perhaps soon.

[Note: I usually give links to the conference abstracts for something like this, but I'm having trouble accessing them, so you're getting links to reports about them instead.]
The 1-year progression-free survival (PFS) rate was 70% with rituximab and lenalidomide. In the double refractory and early relapse groups, the 1-year PFS rates were 65% and 49%, respectively. In the early relapse group, the 1-year PFS was similar in those who received frontline rituximab/chemotherapy (n = 39; 52%) and those received a non-rituximab chemotherapy regimen (n = 13; 44%). In high-risk patients, the 1-year PFS rate was 70%.


The 1-year progression-free survival (PFS) rate was 70% with rituximab and lenalidomide. In the double refractory and early relapse groups, the 1-year PFS rates were 65% and 49%, respectively. In the early relapse group, the 1-year PFS was similar in those who received frontline rituximab/chemotherapy (n = 39; 52%) and those received a non-rituximab chemotherapy regimen (n = 13; 44%). In high-risk patients, the 1-year PFS rate was 70%

Friday, June 23, 2017

CAR-T Videos

There's a whole lot of really good stuff coming out of three important meetings for blood cancer specialists this month. I've already written a lot about presentations at ASCO, and there are also two great meetings happening in Europe.

Unfortunately, I'm in the middle of dealing with a small flood in my basement, and I haven't been able to read and write as much as I'd like, so I'm going to give you a couple of videos instead.

I'm seeing lots of very excited oncologists talk about all of this on Twitter, and I have to say, the thing that is generating the most excitement is CAR-T. Early results are excellent, and updated results are still very strong.

The first video is a long one (about 17 minutes), and features Prof. Stephen Schuster, a lead researcher on CAR-T. He explains in a lot of detail how CAR-T works, if you're looking for a fairly easy-to-understand summary.  The link comes from the blog CAR-T and Follicular Non-Hodgkin's Lymphoma, which features updated links to research and commentary about CAR-T. It's put together by Ben, an FL patient who had great success with CAR-T, and Will, whose wife also has had success with the treatment. Both of them are regular commenters here. If you're looking for an excellent source of information about CAR-T and FL, that's the place to go.

The second video present some of the same information as Dr. Schuster's, but in much shorter form. It features Dr. Jeremy Slade Abramson, who has done some research on CAR-T as well.

It's easy to see whay lymphoma researchers are so excited about this treatment.

Enjoy. I'll get back to some more of the good news about Follicular Lymphoma soon.

Sunday, June 18, 2017

Good News for Transformation in FL?

We barely get to catch our breath from ASCO, and we now we have the International Conference on Malignant Lymphoma in Lugano, Switzerland. Lots of good stuff coming out of there for Follicular Lymphoma.

One of those presentations is called "The Risk of Trasformation of Follicular Lymphoma "Transformed" by Rituximab: The ARISTOTLE Study Promoted by the European Lymphoma Institute."

As the title suggests, this very large study showed a much smaller risk of Transformation than previous studies, and it gives the credit to Rituxan (Rituximab/Mabthera).

I assume most of you know what "Transformation" is, since it always seems to be tucked away in our minds somewhere, ready to jump out and scare us when we have a fever or notice a new bump somewhere. But here's a reminder anyway. Follicular Lymphoma is, as a specialist told me long ago, a "genetically unstable" disease. If we are lucky, it take an indolent course, growing slowly and not interfering too much in our lives. But sometimes, it transforms -- it turns into a different kind of cancer, one that is more aggressive. (It usually turns into Diffuse Large B Cell Lymphoma, but it can become other types, too.)

Transformed FL needs to be caught and treated early -- better results come that way. There have been some improvements in the last few years in treating Transformed FL, but it's still a scary idea for most of us. And what makes it scarier is that it seems so common, if you believe the numbers. I have seen some statistics that say up to 50% of FL patients will transform. I've also seen some that say 35%, 30% or 20%. Different studies seem to give us different figures. The good news is that in the 9 years I've been paying attention, the numbers have been trending down. The most recent I have seen say that somewhere between 15% and 20% of FL patients will transform.

That's what makes this study so remarkable. The numbers are sliced up in different ways, but they all show that rate of transformation is under 10%.

This was a retrospective study -- it looks back at patients who were diagnosed with FL between 1997 and 2013. It looked at 7342 patients -- a VERY large number. It defined transformation as the first event after initial therapy; transformation had to be the first reason the patient needed a second treatment. The median time to transformation was 19 months.

Here are the numbers:
The 5 year risk of transformation was 5.5%.
The 10 year risk was 7.2%.

For patients who had Rituxan as part of their treatment, the 10 year risk was 6.2%. For those who didn't have Rituxan, it was 9%.

Breaking it down a little more, for those who did have Rituxan, the 10 year risk was 6% if they only had Rituxan as part of their initial treatment. It was 3.8% if they also had Rituxan Maintenance.

Those are darn good numbers all around, whatever the treatment was. All under 10%, which is a whole lot better than what we've seen, We should be happy about this -- and maybe just a little less worried as patients.

HOWEVER.....

You'll notice the question mark in my title. I do think it's good news, but as a patient, I still have some questions.

One of the things that the researchers point out in the abstract is that the statistics for transformation are hard to pin down because they are really hard to compare to one another. As they say, "the incidence of HT have wavered over the past several decades, due to the adoption of different diagnostic methods, definition of transformation, duration of follow-up, and type of treatment." In other words, the studies are different enough from one another that it's hard to say that the numbers from transformation are getting better because the studies might now be comparing the same things.

In this study, for example, transformation is defined as only the first event after initial therapy. As I read it, that means anyone who watched and waited, and then transformed before they were treated, would not be included here. And anyone who had a second treatment, and then transformed, would also not be included here. So if we're looking for an overall picture of how many transform, then this might not be accurate.

Another important issue that I have seen mentioned in discussing this study -- there is not any connection yet to clinical practice. In other words, don't think that Rituxan Maintenance will keep you from transforming. The researchers don't make that conclusion; they make the broader point that Rituxan (in whatever form) seems to have a positive effect on transformation.

So follow their lead. Worry just a little less about transforming. It might not really be 3.8% or 6%, but it's got to be a lot closer to them than to 50%. And that's pretty nice.

Wednesday, June 14, 2017

ASCO: R-B vs R-CHOP

One more from ASCO: a long-term follow-up of a study of Bendamustine + Rituxan vs. CHOP + Rituxan for indolent NHL patients. The B-R patients did better in almost all measures.

(Let's be clear here -- this study looks at indolent NHL, so Follicular Lymphoma is included, but the results aren't just about FL, and the abstract doesn't separate them out.)

The really important part of this study (known as the StiL NHL 1 Study) is that it compares the two treatments over 9 years. The researchers reported on the results of this study at the 5 year mark, and now they are showing updated results, with estimates for 10 years.

One important point -- the Overall Survival rate for both treatments is just about the same, at least by statistical measures. The estimated 10 year survival for the B-R group was 71%, and for CHOP is was 66%. A small difference, but not a statistical difference. Taking one over the other won't result in (statistically) living longer.

But for other measures, Bendamustine came out on top.


The median Time to Next Treatment (TTNT) was 56 months (almost 5 years) for the CHOP group, but the median hadn't yet been reached for the Bendamustine group. (The median is the number right in the middle -- half are more and half are less. So less half of the patients in the Bendamustine group had received a second treatment.)

The Bendamustine patients also had fewer second-line treatments (which makes sense, given the TTNT) -- 32%, while 51% of CHOP patients received a second treatment.

As for side effects, one measure is secondary malignancies -- how many patients developed a new cancer. Bendamustine does a little better there, too -- 36 patients, while 39 CHOP patients developed secondary malignancies.

For me (and my non-expert opinion), it seems like R-Bendamustine is a very good choice. (It really didn't take an expert to see that.) It's great to see long-term results that back up the short-term results.

But at the same time, it's important to remember that R-CHOP absolutely has a place in our treatment plan. My oncologist had planned to save CHOP in case of transformation, and that's still the way I think of it, given the fairly indolent course that my Follicular Lymphoma has taken. I know lots of folks who have had CHOP as a first-line treatment, and that's great, too. The point is, it's a still an excellent tool for us all.

It makes me wonder what long-term results will look like for some other exciting treatments, too.

I'm looking forward to seeing those.

Saturday, June 10, 2017

ASCO: The Emotional Psychology of Cancer

As I said in the last post, there were some non-Follicular Lymphoma sessions at ASCO that I thought were really interesting. At least three talked about studies that looked at ways to reduce cancer patients' fears.

I said it last time, and I'll keep saying it -- Follicular Lymphoma is as much an emotional disease as a physical disease. Emotions play a huge role in an cancer type, for any cancer patient. But Follicular Lymphoma can be just a little different. For a lot of us, we don't have any physical symptoms. All we have are the emotional ones. Like fear that we are missing the physical ones. Worry that our watching and waiting is making things worse. Even guilt that we might not be dealing with a cancer that is as bad as some others. There's a lot going on in our heads and our hearts, and it's easy for doctors and others to assume that a lack of physical symptoms means there's a lack of emotional ones, too.

There were (at least) three sessions that looked at cancer patients' emotional psychology, and used rigorous scientific study to find ways to reduce their negative emotions.

The first looked at The Conquer Fear study. Conquer Fear is the name of a program that tried to teach cancer patients to reduce their Fear of Recurrence -- fear that their cancer would come back. It use techniques like attention training and detached mindfulness to get patients to be less afraid of their cancer coming back. The study had some patients use the Conquer Fear methods and others use relaxation techniques. The Conquer Fear patients had less anxiety about recurrence.

A second presentation described the CALM study. In this study, cancer patients had individual sessions over 3-6 months that had them explore things like communication with their health care providers, changes in themselves and their relationships, their sense of meaning and purpose, and their sense of mortality.This study, too, had a control group, but this one didn't get any emotional training. The CALM intervention patients showed less fear and greater ability to adapt.

A third presentation discussed something called STREAM, a web-based stress management tool for patients who were newly diagnosed. Patients would write online about their stress and receive feedback (also online) from a psychologist. Again, the group getting the intervention was compared to a group that did not get it. And again, those getting the intervention showed more positive ways of dealing with their cancer.

I don't think it matters which of the three studies did the best job. They all did different things, with slightly different groups of cancer patients.

The important thing is that they were all successful, and they all taught a similar lesson -- finding a way to work with your negative emotions is so very important for cancer patients. And that's true at whatever stage of this journey we are on.

And it's especially important for those of us with Follicular Lymphoma. We are told that, for most of us, our disease is incurable. That has to add a whole different layer of anxiety for us -- it certainly does for me.

I've told my story many times, but I'll give you a short version. When I was diagnosed, things were a whirlwind for a week or two. When they finally slowed down, I went into a deep, dark place. I was worried about my wife and small children. I'd break into tears every half hour or so. And I kept it all inside. When I finally started talking to my wife, things got better. And when I found a support group online, and could share with people who knew what I was going through, it got better still.

Recognize the emotional part of our disease. Find ways to deal with those symptoms, just as you would find ways to deal with the physical ones.

And if no one else seems to understand, feel free to write to me. I'm happy to listen.

Wednesday, June 7, 2017

ASCO: Symptom Monitoring

Well, ASCO is over now, which means pharma companies, universities, and other folks will be sending out press releases to  brag about their big successes at the conference. (And some of them are big success -- some really great news about prostate cancer that I'm seeing online.)

Unfortunately, there were no big blockbuster presentations about Follicular Lymphoma this year. Certainly some good news -- which I have been writing about, and will write a little more about soon. But nothing that has people outside of the Lymphoma community getting all crazy about.

But there were a few sessions that I have seen get discussed online that seem like they could have some implications for Follicular Lymphoma patients, and I want to share my thoughts about them.

The first one has to do with symptoms monitoring.

In this study, patients with advanced cancers were given access to an online program that would let them report any new symptoms. They were asked to report once a week, though they could report things sooner than that if they had problems. Nurses would check the program and provide advice to the patient, sometimes offering an intervention that would help if it was a normal, expected symptom, and sometimes having the patient report to the office as soon as possible, if the symptom seemed abnormal, or a potential sign of the cancer getting worse.

The study involved 776 patients at Sloan Kettering in New York. Researchers found that patients who used this online system extended their survival by about 6 months. That's longer than some actual treatments are found to help. Patients were also able to stay on a treatment for longer than they might have been, because nurses were better aware of their side effects and could help them deal with them more quickly.

The lead researcher on the study appeared in a video at ASCO to explain more about the how it worked.

I can't help thinking about how this would affect Follicular Lymphoma patients.

Many of us are able to watch and wait before we need treatment. Many more able to do the same after treatment. A key part of watching and waiting is looking for symptoms. And for many of us who have an indolent form of FL, growing slowly, we can go a while between oncologists' visits -- 3 months, 6 months, up to a year. If we are in the mindset that things don't need to be reported because we are months away from a visit, we might be more willing to overlook things.

That situation I described is where I am at right now, almost 10 years out since my diagnosis. But I can think of a couple of other situations where a tool like this might be helpful, with some variations.

For patients who are actively going through treatment, reporting side effects would be great, as was mentioned in the study. But also reporting other symptoms, like new swollen nodes, would help alert doctors that treatment needed to change to something more aggressive. (I like to think patients would do that even without an online tool, but I also know patients can sometimes be a little hesitant to "bother" a doctor, and maybe the tool would give them permission to do so.)

The other way this could be helpful would be with fairly new patients. I think back to when I was first diagnosed, and began watching and waiting. Every little bump, every bruise, every ache -- I thought all of it was a sign that my symptoms were getting worse. None of them really were. (I remembering cutting a vacation short because of a sharp pain in my upper leg. I panicked my entire family for what was really just a running injury.) I could see patients in the early stages after diagnosis using that tool and getting reassurance that they were OK.

But that would require something extra from the doctor's office -- some real understanding of the psychology of Follicular Lymphoma patients, which I believe is just a little different from other cancer patients. I've said it lots of times here, and I'll say it again -- Follicular Lymphoma is an emotional disease as much as a physical disease, and doctors need to recognize that.

So if someone newly diagnosed with Follicular Lymphoma, and on watch and wait, was to use this tool, I would hope that the nurses and doctors checking on it would be extra patient with us. They would need to understand that people who hold off on treatment are doubling up on their worries, and act accordingly -- calming our fears and taking our concerns seriously.

(The great majority of oncology nurses and doctors that I have met would do this. But I could see some offices not suing it because of the "extra work" it might bring on. And it would be worth emphasizing those emotional issues in any training that they might receive.)

It would be great if this tool became available for all cancer patients. But even if it doesn't, there's a lesson we can all learn:

Talk to your doctors. Tell them what's going on. 80% of symptoms are found by patients. Not doctors, not blood tests, not scans. But the patients themselves. Even if you don't have a cool online program to help, talk to your doctor.

(Not that I needed to remind any of you about that......)

Sunday, June 4, 2017

National Cancer Survivors Day



Happy National Cancer Survivors Day!

In the U.S., today we celebrate cancer survivors -- and that mans anyone who has ever heard the words "You have cancer," and is still around today.

On my diagnosiversary every year in January, I always like to do something a little special -- skip work and go to a movie with my wife, take a long walk, bake a cake. And my wife, every year, tells me that it's a little strange to celebrate the day. And every year, I remind her that we're not celebrating the day I was diagnosed, we're celebrating every day since then.

And that's what Cancer Survivors Day is all about. It's a celebration of life.

And for me, that means 3,429 days worth celebrating.

Enjoy the day. Celebrate life.