Pan-Mass Challenge

Once again, my brother Mike will be riding next week in the Pan Mass Challenge to raise money for cancer research.

And once again, I'm asking you to consider making a donation.

The Pan-Mass Challenge is a bike riding event where riders cover a good part of the state of Massachusetts over one or two days. Nice folks like us give donations. The money raised goes to support cancer research at the Dana Farber Cancer Institute in Boston. That includes research in blood cancers like Follicular Lymphoma.

Mike has been doing the PMC for a while now -- this is his 11th year. He has personally raised over $65,000 for cancer research. For this I am most proud of him, and most grateful.

You can read more about the PMC, and Mike's ride, below.

Please consider making a donation to his ride -- even a small one.

Thanks.

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This year on August 4^th, I will be joining over 5,000 cyclists riding for my 11^th year in the Pan Mass Challenge to raise research funds for the Dana Farber Cancer Institute in Boston. 

As many of you may know from sponsoring me in the past, this cause is especially personal to me as I have had several immediate family members and close friends that have been diagnosed and treated successfully for many different types of cancers.  Some,  like my brother Bob, have been beneficiaries of the breakthrough research that has been conducted at the DFMC. 

Since 1980, the PMC has raised almost  $600 million for cancer research and treatment at Dana-Farber. The majority of this impressive total is considered unrestricted support -- critical, flexible funding that can be directed where and when it is needed most. As the PMC generates nearly half of the Jimmy Fund's annual revenue, every rider supports the efforts of more than 3,000 DFCI faculty and staff members as they make countless advances that have become the standard of cancer care and research. 

I’m asking you to join me in the fight against cancer by sponsoring me in my ride with the 2018 Pan Mass Challenge.  The doctors and researchers at the Dana Farber Cancer Institute in Boston are making tremendous progress in finding a cure for this terrible disease, but we need to continue to fund the fight and bring this to an end. 

The easiest way to donate is to give on-line.  The PMC site is a secure site. 

To give on-line, you can go to the following link to my personal fundraising site: 

http://www.pmc.org/profile/ MM0386

Many thanks,

Mike

Oncologist Appointment

I had an oncologist appointment yesterday. Lots to talk about, but let's get the important stuff out of the way -- everything looks good. I'm still stable and healthy.

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I met with Dr. Y for the first time. More on him in a minute.

My blood work looked normal, he said. He asked how I was feeling, and of course, I said I was fine. No strange infections or unusual illnesses.

He felt my nodes, and didn't find anything strange. I told him about a node that had popped up a few months ago, near my left hip, which has always been my "trouble spot." I had noticed it in March or so, and I tried not to worry about it. I figured as long as no other nodes were popping up, and as long as the node wasn't causing any swelling in my leg (like the one that led me to needing Rituxan 8 years ago), I wasn't going to worry.

The node had actually started shrinking a couple of weeks ago, so I wasn't expecting him to be concerned, and he wasn't.

All in all, it was a short visit, and a happy one -- just the kind I like.

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Now, on to Dr. Y.

As many of you know, I've been having trouble finding an oncologist. My first oncologist, Dr. R, was wonderful. He ended up leaving my state to teach in a medical school a few years ago. I was assigned to Dr. K, who was awful (didn't listen to me, talked to me like I was a child, insisted on a PET scan but could not give me a reason why I needed it). He retired after I had seen him a couple of times.

I was assigned to Dr. V, who was wonderful. He is a Lymphoma specialist, and very excited about what's happening in the world of FL. Unfortunately, after a year, he left for a dream job at a major research hospital.

So I was assigned to Dr. Y. As I wrote about a month ago, I had hoped to see a Lymphoma specialist again, but I had a tough, frustrating time getting an appointment (click the link if you want the details -- I won't get into them here). I was given an appointment with Dr. Y, which I took just so I could be done with the process of making an appointment.

Dr. Y is a general oncologist, not a Lymphoma specialist, which is the kind of doctor I really wanted to see. Many of you readers encouraged me to cancel my appointment with Dr. Y and see a specialist instead, and that was what I had planned to do.

And then life got in the way. I never made another appointment, and I totally forgot about the appointment with Dr. Y. Late Friday night, I had a message from the hospital reminding me that I had an appointment on Monday, and by then it was too late to cancel. I wanted to get the check up, and I wasn't sure how long it would take to see a specialist. Just going was easier.

It's a funny thing to be able to forget about cancer so much that you forget an oncologist appointment. I know I'm very lucky to be in that situation.

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Dr. Y is very nice. It turns out that he is also the oncologist for a friend of mine who has Multiple Myeloma, another blood cancer. My friend is very fond of Dr. Y.

So here's the kicker -- Dr. Y told me he knew about me because he had seen the notes from Dr. R, Dr. K, and Dr. V. He said, "We've been kind of passing you around a lot. I'm sorry about that.....Unfortunately, we going to have to do it again. I'm retiring in 2 months."

Uuuuuuuuuugggggghhhhhhhhhhh..............

So I'll be looking for another oncologist -- my fifth one in five years.

I'm starting to think it's me that's driving them away. I swear, I'm not a difficult patient. Ask anyone who knows me -- I'm a sweetheart.

Dr. Y said the practice has made an offer to someone to replace him, and that everyone there is very excited about her coming aboard. Like Dr. Y, she's an oncology generalist.

But I think now is the time to really make the switch to aspecialist. It will mean a less convenient location, but I'd rather have someone who knows what's going on in the world of Lymphoma. My only problem is inertia -- things go well, and I put the appointment out of my mind, and then it's too late to find someone else.

If one of you could remind me in a month or two to call for an appointment with a new spcialist, that would be great.

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One more comment, though. Dr. Y is retiring because he just can't take all of the paperwork anymore. Not "paper" work, but digital work -- the electronic records and such. He says he stays at work until 7pm every night, has dinner, and then gets back to the paperwork.

Dr. R left clinical practice to go teach to avoid all of that, and Dr. K hinted that it contributed to his retirement as well.

Electronic records and such are supposed to be helpful, but I hear of so many patients who say they only see their doctor's back as she types on the keyboard, and I hear from so many doctors who say they don't get to spend enough time with patients because (like Dr. Y) they have so much digital work to do.

Something's going to have to give. Not sure what.

Rituxan and Transformation (Part 2)

As I wrote in my last post, there have been two recent medial journal articles that have looked at the effect of Rituxan Maintenance on Follicular Lymphoma transformation. The one I looked at last time suggested that taking Rituxan as part of a first treatment might reduce the risk of transformation.

The second study was published in Blood Advances, and is called "Up-Front Rituximab Maintenance Improves Outcome in Patients with Follicular Lymphoma: A Collaborative Nordic Study."

 The study looked at more than just transformation. It looked at the effects of Maintenance on Overall Survival and Progression Free Survival as well.  Researchers looked at two groups of patients. The first included 733 patients from Denmark who had R + chemo. About half of them went on to receive R Maintenance. The group who had Maintenance showed an improvement in 5 year Overall Survival (89%, versus 81% who did not have Maintenance). There was also an improvement in 5 year PFS (72%, versus 60% who did not have Maintenance).

The researchers then looked at a similar group of patients from Finland (190 of them) to see if the results were the same. In this smaller group, the 5 year Overall Survival was about the same (89% versus 81%), as was PFS (70% versus 57%).

The difference in OS should be important. One of the real challenges for FL researchers has been finding a treatment that improves Survival for us. This one (R-chemo followed by R Maintenance) seems to do that, but the researchers aren't ready to get overly excited about that (which I appreciate). They say, after discussing the results from a bunch of other studies, "In conclusion, the role of MR as part of the first-line standard of care strategy in treatment requiring FL is still debated. The present study adds to the existing data by showing that, in 2 independent cohorts of FL patients, the use of MR leads to an improvement of not only PFS, but also OS."

They're not claiming that the debate is over (as some researchers do), just that they are adding more to it.  They acknowledge that there are a bunch of other factors that may have contributed to the results they got (such as which type of chemo they go in the R-chemo they first received -- CHOP patients did better then CVP, and there weren't enough Bendamustine patients to really show anything).

Now, as far as Transformation goes, the researchers found in the larger Danish group that Maintenance did seem to have an effect on Transformation. Of the 733 patients in that group, 60 transformed (about 8%). There may have been a benefit for patients who received Maintenance (that is, they were a little less likely to transform), though that might have been influenced by the chemo they took. However, the smaller Finnish group did not show any benefit -- the risk of Transformation was the same whether they had Maintenance or not.

The lessons here?

Well, first off, let me remind everyone that I am a patient, not a doctor, so what I say can only come from that perspective.

What I get out of all of this is this -- there's still no magic formula. I'd love to read something that says, "Yes, absolutely, have this treatment and chances are very good that your life will be longer." Unfortunately, that's not what we have here, from either study.

But that's not to say there's nothing good from either one. There's actually lots of good news, if you look at it with a wide-angle lens.

It seems that, overall, Transformation  numbers are better than what I've seen in the past. The risk is certainly still there, and it's still something that a little piece if me fears (even 10 years after diagnosis), but maybe Rituxan has played a role over the last 20 years in making that risk a little smaller.

I also think that Maintenance remains an important tool in the toolkit. Maybe not for everyone, but maybe for some of us, and certainly something that is worth discussing with a doctor. The Blood Advances study looked at efficacy only -- how much Maintenance helped with Survival and Progression. It didn't look at Toxicity at all -- what kind of side effects people had, and how they effected Quality of Life. That's certainly something to include in a conversation with an oncologist -- Maintenance might improve Survival or time between treatments, but what is the cost?

So, overall, the two studies give me things to be hopeful about, but they weren't likely to change everything I thought I knew about FL -- and they didn't. As the researchers from this study said, the information adds more to the discussion.

That's a good thing. No answers, but more information t help us make decisions. I'm OK with that.

Rituxan and Transformation (Part 1)

I've seen two studies in the last couple of weeks that look at the role that Rituxan might play in preventing Transformation in Follicular Lymphoma. They both present some possible good news, though, like most research on FL, they also show how complicated all of this is for us.

Transformation, of course, is one of the biggest fears of FL patients. When the disease transforms, that nice, slow-growing disease turns into an aggressive, faster-growing disease. Survival rates for transformed FL are lower than for "regular" FL. 

The first of the two recent studies was published a couple of weeks ago in The Lancet Haematology, called "Rituximab and the Risk of Transformation of Follicular Lymphoma: A Retrospective Pooled Analysis."

A retrospective pooled analysis means that the researchers didn't start a new study themselves. Instead, they looked back at a bunch studies that other people did and examined how many patients transformed and what kinds of treatments they had.

They looked at 10,001 patients' records (a pretty big group). The patients had been diagnosed between 1997 (when Rituxan was first given to FL patients) and 2013. Of that 10,001 patients, 8,116 were able to be included in the study, and 509 of them transformed.

The rate of transformation over 10 years was 5.2% for patients who received Rituxan, and 8.7% for those who did not.

For those who received Rituxan, it broke down further -- a rate of 5.9% for patients who receievd only Rituxan for their first treatment, and 3.6% who had Rituxan as part of their first treatment and also as part of Maintenance.

Of those 509 patients who transformed, 287 died during the study, with a 10 year survival after transformation of 32% (that number was the same whether the patient had Maintenance or not).

Overall, those numbers are good. As the researchers say, "These findings support the need to inform patients using rituximab nowadays that the risk of transformation is lower than it was before the introduction of rituxumab."

Interestingly, these numbers are even better than when they were presented at a conference last year.

Hard to argue with the researchers' conclusion. The numbers for transformation rates have always been very high -- I've seen them as high as 50%. In other words, whether we transform is a coin flip.

But that's old news. More and more studies of transformation give lower numbers. The ones I have seen in the last couple of years mostly have been in the teens. 

I also find it interesting that the conclusion says that patients should be told that the risk of transformation is lower now than it has been since before the introduction of Rituxan. It seems like that is meant to be an encouragement to use Rituxan. But that's kind of strange -- almost every treatment these days includes Rituxan. It seems like a capital-t Truth that Rituxan is part of everyone's plan. We are far more likely to get Immunochemotherapy (R + something) than just chemotherapy.

But as I thought about it more, I realized that lots of newer treatments are being tested as single-agents, not combined with other things. Of course, they are also tested (and often found to be more effective) with other agents as combos (R-squared is more effective than just Revlimid).

And that also made me think about other issues, like whether Rituxan biosimilars (cheaper, "generic" versions of Rituxan) would be as effective, or if Obinutuzumab or other monoclonal antibodies would also have the same effect on transformation.

So much to think about.

For now, though, I will take the good news that risk of transformation does seem to be getting lower. Whether or how those other complexities  play out will be something to watch for in the years to come. (This study looked back at patients from 20 years ago, so I wouldn't expect anything about single agents or others MABs any time soon.....)

The other recent study on transformation looked at Rituxan Maintenance and its effects. More on that next time.

It's OK to Have a Bad Day

I'm generally a positive person. I definitely have more good days than bad days.

But bad days happen for all of us.
 I'm sure you've had the same experience that I have -- people telling you to how important it is to stay positive. For me, it's usually not a problem to take that advice.
The problem comes when we feel like we're letting other people down when we have those bad days.

I wrote another piece for Blood-Cancer.com called "It's OK to Have a Bad Day."

One more thing -- I've been paying a lot more attention to mental health these days. We all should. A bad day is OK, but it's important to recognize when a bad day is something more, and it's time to find some help.

Read more in the Blood-Cancer.com piece. I hope you like it.

Vote for My Blog

I am pleased to announce that, once again this year, I have been nominated for two WEGO Health Awards.

The awards are given in 16 categories, and are meant to recognize "exceptional patient advocates, influencers and experts who make a difference in the lives of patients and caregivers." Last year, I was nominated for Best in Show: Blog and Best Kept Secret.

This year, I am nominated for Best in Show: Blog (again) and Patient Leader Hero. (You can read descriptions of all the awards here.)

The awards are now in the "Endorsement" phase, and this is when you can vote for me.

After the nominations are made, anyone can "endorse" (vote for) any of the nominees they would like. You can endorse more than one nominee in a category, and you can endorse any nominee in multiple categories, but you can only endorse once. Endorsements close on August 17.

In each category, the top 3 vote-getters (those with the most endorsements) become finalists for that category. A panel of judges will look at the rest of the nominees and choose two more to go into the finals. A separate panel of judges will then pick a winner for each category from those 5 finalists.

You can endorse me by clicking on one or both of the badges below. (They also appear to the right, where they will stay until August 17.) You will be asked to enter an email address and a name (to make sure you are only voting for each nominee one time).

Now, it's a big contest, so there are a couple of hundred people nominated in each category -- lots of competition. I wasn't a finalist last year, and that was just fine. It really was very cool just to be nominated. I've met a bunch of the other nominees, and they do some really amazing work for their communities. I'm pleased to be even nominated in the same awards contest with them.

That said, as cool as it was to be nominated, it would be even cooler to be a finalist -- I'm not going to lie.

So consider given me an endorsement or two.

And thank you for being such great readers.

Keto Diet and Lymphoma Treatment

Fascinating news last week: a clinical trial will start soon that will examine the effect of diet on a specific lymphoma treatment.

Two things worth paying attention to here.

First, the study itself: Lymphoma patients will be given Copanlisib (also known as Aliqopa), a PI3K inhibitor. (Copanlisib is approved for relapsed Follicular Lymphoma, though I don't know which types of Lymphoma will be involved in the study.) PI3Ks work by effecting how a cell (like a cancer cell) takes in glucose, the sugar that a cancer cell needs to grow. Interrupt the food supply, and you mess with the cancer's survival.

However, researchers have known for a long time that the body's natural reaction, creating insulin, can mess with the effectiveness of the PI3K inhibitor. So, this study will look at whether or not a ketogenic diet will increase the effectiveness of the inhibitor. A Keto diet (as it is known) involves eating high percentages of fat and low percentages of carbohydrates (which can raise blood glucose levels). So a keto diet, taken while a patient is on the PI3K inhibitor, might help make it more effective. A study on mice shows that this is a possibility.


That in itself is pretty fascinating to me.

But there's a second thing that's worth paying attention to.

I saw this posted on a couple of different places online, and the immediate reaction to it from some lymphoma patients was to announce that they were going to start following the keto diet.

Slow down.

The research is not about whether the keto diet will help your cancer. It's about whether the diet will help make a specific type of cancer treatment more effective.

In fact, following the diet could do the opposite, and harm you. From another article on this research: The researchers say "they would discourage patients from putting themselves on diets after reading about the latest findings. There is no evidence that the ketogenic diet, for instance, would be helpful on its own – in fact, for leukaemia it appeared to accelerate the disease’s progress."

Let's make that really clear: for one type of blood cancer, the keto diet doesn't help, it actually make the cancer become more aggressive.

It's so important to read carefully.

I've been dealing with FL for over 10 years, so I get the impulse to look for easy answers -- eat this, not that, and your deadly disease will go away.

And I get the impulse to believe it when you heard that a friend of a friend did just that -- ate the goji berries, did yoga every day, bounced on a trampoline, visualized the tumors getting smaller, whatever -- but without rigorous studies of those things, under controlled conditions, none of it means anything. [And those are all things that people advised me to do to cure my cancer.]

I'm not saying diet or exercise isn't important, or that the keto diet doesn't work (I have a friend who is diabetic who swears by it). I am saying that until I get some legitimate scientific answers, I'm not going to entrust my life with it.

And this study is part of a larger series of studies that will focus on "rethinking human diets for cancer." That's great -- we need strong, evidence-based studies that will give us a real sense of how elements of our diets might effect us as patients.

I look forward to seeing how this trial plays out -- it looks like it will start up in October. I'll post any new info I see. I'm all for supporting clinical trials for Lymphoma, but even more, I'm all for supporting trials that might help us slow down and think more carefully about things like diet that might hurt us as much as we wish they could help us.

A New Way To Think About Cancer

I want to pass along a link to you -- an article called "Time for a New Cancer Paradigm," by Terrilyn McCormick.

Terrilyn is a Follicular Lymphoma patient and a writer. Her piece talks about the reactions people usually have when they find out she has cancer -- some give the horror stories, others give the hopeful stories. But Terrilyn, like many of us, are somewhere in the middle -- living with cancer but not needing treatment, looking at it like a chronic disease that may never go away completely, but which we can live with.

If you know people who can't quite deal with that, I suggest you post a link to Terrilyn's article on your Facebook page or send it in an email to your contacts. It might help explain your strange reality to people who don't quite get it, and give them something to think about.

Watching and Waiting: What I've Learned

Sometimes I forget that new readers come along all the time, and they haven't heard my story. I don't like to repeat myself too much, but I do try to write about some of those experiences, especially my early experiences, when I can.

One thing I haven't written about in a while is Watching and Waiting -- the decision to hold off on treatment until it is physically necessary. I watched and waited for two years (to the day) after I was diagnosed. Some nodes in my left hip got large and they made my leg swell up. I had six rounds of Rituxan, and I haven't needed treatment since (in over 8 years).

Those two years of watching and waiting weren't always easy. I remember, right after I was diagnosed, while we were still doing all of the tests, seeing something online about watching and waiting. I think I read the first paragraph and didn't bother with the rest -- who in their right mind would get a cancer diagnosis and then not do anything about it?

Well, me, I guess. And probably lots of you. It's not an easy decision to make, and it takes a while to be at peace with it. For me, it was worth it. I was able to hold off on treatment, and I have lots of options available to me when I need them -- including a bunch of new ones that weren't around when I was first diagnosed. My Quality of Life has remained good for all of that time. I'm happy I amde the decision I did.

But, as I said, it's not an easy decision.

I just wrote a piece for Blood-Cancer.come called "6 Things I Have Learned About Watchful Waiting," and I invite you to take a look. It focuses on the kinds of emotional juggling that watch-and-waiters have to do while they are observing their disease and considering their options.

The decision is hard, and what comes after it can be even harder. Of the things I learned, the one about talking might be most important. It's not something you can really do alone. For me, talking to loved ones helped, but joining an support group helped most. It was great to hear from people who had been through the process.

So if you're watching and waiting, or you've just been diagnosed, and you're considering the decision, I wish you lots of luck, and a peaceful mind.

Remember it helps to talk. And I'm happy to listen.