Monday, July 31, 2017

Pan Mass Challenge

I'm asking, once again, for you to consider making a donation to cancer research.

As he has for many years, my brother is again riding in this year's Pan Mass Challenge, a bike ride through Massachusetts that raises money for cancer research at the Dana-Farber Cancer Institute in Boston. Over 37 years, the PMC has raised over $500 million for research.

Last year, riders raised $47 million, and a pretty good chunk of that went directly to research on blood cancer -- $3.1 million, or about 15% of the total raised.

My brother works hard all year to train for the ride. He has personally raised almost $60,000, and this will be his 10th year riding. I was just one of the inspirations for him to start riding; like many families, we've had our share of losses to cancer, including our mom. I'm proud of my brother and grateful to him for all of his hard work.

The PMC will take place this weekend, and if you are looking for a place to make a donation to cancer research (even a small donation), please consider supporting my brother. You can get to his donation page by clicking here, and then entering the EgiftID MM0386.

Thanks for considering it.

And have a good ride, Mike.

Thursday, July 27, 2017

Patient Distress Guidelines from NCCN

I've been thinking (and writing) a lot lately about the emotional effects of Follicular Lymphoma. I know I keep saying it, and you all already know it, but Follicular Lymphoma is as much an emotional disease as a physical one. Many of us show no symptoms, and need no treatment, for long periods. But that doesn't make our emotional needs any less important -- in fact, it might make them even more important.

I recently came across an article that followed up on the National Comprehensive Cancer Network (NCCN) national conference, which took place in March. Some participants were asked about "what's hot" in their fields, and one pointed to the NCCN's new Distress guidelines for patients (they were new in March, anyway).

This was the first I had heard of the Guidelines, and they actually look great. NCCN, which is made up of oncologists and the institutions they work for, has published guidelines of different types for oncologists for a long time. They have only recently started putting the same information into publications for patients. So while doctors and nurses and other cancer professionals had guidelines for helping patients in distress, there weren't any guidelines for the patients themselves.

And that's a problem.

There's no guarantee a doctor or nurse will read the distress guidelines, let along use them to help cancer patients. (Not sure how long the doctor guidelines have been out, but of all the doctors and nurses I have seen, no one has mentioned them to me before). And, as the head of counseling at one hospital pointed out in that article, “A lot of cancer patients want to be ‘good patients,’ which can mean they don’t want to be whiners or give providers a reason to pull back on treatment; therefore, they may under-report symptoms…. We depend on patients to speak up about their challenges, so we can help them.”

Amen to that.

The NCCN Guidelines for Patients: Distress is pretty good. It's about 40 pages long, and easy to read. It starts with a description of what distress is, and some common situations for cancer patients that cause distress -- things like getting a diagnosis, or finding a new symptom, or learning that a treatment stopped working. We're all different, and we may have other things that add to our distress.

It goes on to give some tools to help you measure how distressed you are, using the "Distress Thermometer." It also gives some advice about how to create a team of professionals to help you manage your distress. (Lots of cancer centers have this kind of service. I don't think they get used enough, given how many people I see online who are experiencing distress.)

The guidelines also provide some help with having a conversation about distress with your healthcare provider. I think this is especially important. I get the sense that lots of doctors assume that, if we are asymptomatic, we don't have much to worry about. It is important to have those conversations with your doctor.

The guide is definitely worth reading, even if you aren't feeling lots of distress at the moment. To be honest, I'm not feeling much, at least not about my Follicular Lymphoma. (Now, as a father of three kids, 20, a8, and 16, plus a crazy dog, I have lots of other things to be distressed about. But my FL? I'm good right now.)

Maybe the time to be aware of these resources is exactly when you don't need them. Look over the guidelines with a clear head, and be prepared for a time when they might come in handy. (Though, of course, I hope that time never comes for us.)

And if you are feeling distressed, then this is a great time to take a look. You might find a source of your distress that you hadn't realized was a problem. Or you might find some resources that you didn't know existed.

But most importantly, I commend the NCCN for putting the focus on patient emotions -- making us and our health providers more aware of what';s going on in our heads and hearts, not just our lymph nodes and bone marrow.

I wish you all peace of mind and body.

Sunday, July 23, 2017

Cancer, Stress, and Social Interaction

The journal Network Science published a fascinating article a couple of weeks ago called "Social Influence on 5-Year Survival in a Longitudinal Chemotherapy Ward Co-Presence Network." It isn't about Follicular Lymphoma, but I think it has some real implications for all cancer patients.

The researchers looked at records from 4691 cancer patients in the UK who received chemotherapy. From those records, they could tell when those patients were in a treatment room with other patients who were also receiving chemo.

They were also able to look at what happened to those patients. And this is the fascinating part -- they found that if someone was in a treatment room with another patient who survived for more than 5 years, then that patient would also be more likely to survive for 5 years. And, likewise, if they were getting chemo in a room with a patient who survived less than 5 years, then they were also more likely to survive for less than 5 years.

The researchers didn't study why this was the case, but they think it might have something to do with modeling behavior and stress. At times of greater stress (and getting chemo is certainly one of those times), having social interaction can be a way of reducing stress. Supporting one another might be a way of making a stressful situation less stressful, and helping one another's survival. Without that stress relief (say the researchers), stress hormones like adrenaline can build up and create problems (since adrenaline prepares you to fight or run away, and you can't really do either in a treatment room.)

I think back to my own time in a treatment room. I got Rituxan, a monoclonal antibody, not traditional chemotherapy. But it was a stressful time anyway. The treatment room at my oncologist's office was kind of large -- it probably held 20 chairs.. It was in a U shape, with a nurse's station in the middle, with glass walls so they could keep an eye on us. When we arrived at the room, it was clear that the nurses wanted to give us some privacy -- we were given chairs far away from one another. So I might be on one side of the "U," and two more patients might be on the other sides of it, and we might never even see one another, let alone interact with one another.

And, to be honest, I was OK with that. I was there for hours, and I mostly wanted to sleep, or read, or watch TV. I wasn't really up for small talk. I usually had my wife with me, though my mom came once, and my kids came to visit me once. I had opportunities for interaction if I wanted them, and I was lucky that my loved ones' schedules allowed them to be there with me.

But now I'm thinking about other people in that big room. It was almost 8 years ago, so I don't remember them. I think some of them had company. But I'm sure some of them didn't. Would they have wanted to talk? It really is a stressful place -- would they have been less stressed if we could have chatted for just a few minutes? Would just a silent nod have helped -- just a small sign that said, "This sucks for me, and I know if sucks for you, and I hope your day gets better when you get out of here." Just something that let someone know how they felt?

It brings up a larger issue -- the importance of social interaction for cancer patients, in general, especially interaction with other cancer patients. I hear lots of sad stories from cancer patients who lost friends, or whose family members fell out of touch after a diagnosis. I think people don't know what to say and do, so they say and do nothing. That has to do some damage, to your mind and spirit, if not your body.

That's what makes support groups so important, whether face-to-face or online. There is almost always someone there who has been through what you have been through, who has felt what you have felt, or who has wondered what you are wondering. It's a huge stress relief.

I've talked before about the support group I found online just days after I was diagnosed. I still check in every day (though I don't post very often anymore.) It was a huge help to me, especially early on. I got support and I learned a lot about Follicular Lymphoma. I learned I wasn't crazy for thinking what I was thinking. There are even more of those groups online now, thanks to Facebook and other social media. And, of course, lots of face-to-face groups to join. (And, of course, I like to think Lympho Bob plays a small role in that, too. I get emails from some of you, and I'm happy to talk about whatever you want to talk about.)

But the point is, interact -- talk to someone, especially someone who truly understands what you are going through. It's a great stress relief, and, apparently, good for your physical health, not just your mental health. I've said it before -- Follicular Lymphoma is an emotional disease as much as a physical one. And sometimes those two things are closer than we realize.

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.


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.