Started by Jamie Reno (@jamiereno) · Oct 1, 2013

The Lymphoma Cancer Drug That Saved My Life Should Be Saved

My favorite college journalism teacher once told me I should never start a story with the tired cliché, “It was a dark and stormy night.“ Well, sorry professor, but I’m about to break that writing commandment. Why? Because it really was a dark and stormy night in the fall of 1996, when I nervously sat in my oncologist’s office as he gave me the dire diagnosis: "Jamie, you have stage IV follicular non-Hodgkin's lymphoma."

Cancer?! I could not believe what I was hearing.

A few days later, while still in shock and denial, I reluctantly began a chemotherapy regimen called CHOP, with which I am sure many of you are familiar. It made me really sick but put me in remission for about two years. When the lymphoma recurred in early 1999, my doctor wanted me to do chemo again. My response? "Thanks, doc, but no thanks."

lymphoma warriorInstead, I told him I had made the decision to enroll in a phase three clinical trial of a then-experimental treatment called radio-immunotherapy, also known as RIT. The drug, Bexxar, which has long since been approved by the Food and Drug Administration (two RIT drugs have, actually: Bexxar and Zevalin), was virtually unknown at the time.

Even my oncologist was only vaguely familiar with it.

But I had done my homework. I'd learned that the percentage of complete responses among lymphoma patients who had taken RIT in trials was higher than with chemo, the remissions were evidently longer, and the side effects were relatively minor.

It was still a risk, but I was willing to take it.

I’m glad I did. I have not been treated for my cancer since, though last fall, after 13 years of remission, we did discover enlarged lymph nodes in my abdomen and I am now in “watch and wait.” Bottom line? Radio-immunotherapy saved my life.

Since that trial, RIT has been the subject of considerable controversy. Publications ranging from Newsweek, my longtime employer, to the New York Times have reported that RIT has not been utilized as much as it should by lymphoma patients for reasons that have nothing to do with its efficacy.

There are all sorts of reasons for this, ranging from inequitable Medicare reimbursements and other money issues to unfounded fears among patients and even some doctors that this treatment is dangerous and problematic because of its radiation component.

But there is frankly no justifiable reason why Bexxar, the drug that saved my life and the lives of so many others, is now being discontinued by GlaxoSmithKline (GSK).

As I was the first to report on my national news blog The Reno Dispatch back in August, GSK has announced that it will stop producing and selling Bexxar in February 2014.

A spokesperson for GSK told me the decision to discontinue Bexxar involved a "thoughtful and careful evaluation of patient needs and the clinical use of the therapy…. There are other treatment options available for patients with relapsed non-Hodgkin’s lymphoma."

But those other options are not as good.

Bexxar and Zevalin, which is thankfully not being abandoned  by its manufacturer, Spectrum Pharmaceuticals, are clearly the best option for many men and women who have follicular, the most common type of non-Hodgkin’s lymphoma, which is the seventh most common cancer in the United States.

GSK told me that its “commitment to the oncology community will continue through our efforts to develop and deliver other therapies to help address the unmet needs of patients living with cancer."

Really? I don’t see how a company that is committed to cancer patients dumps this amazing drug. The way I see it, GSK never properly marketed or promoted Bexxar- and now it’s about to go away for good. It's a mystery and a tragedy that a cancer treatment that works so well and has such minimal side effects could not be saved.

Bexxar blog Cancer GlaxoSmithKline Jamie Reno Lymphoma Radio-Immunotherapy RIT zevalin

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Christina Laurin (@claurin) · Oct 1, 2013 · #

Hey Jamie, great piece. Thank you for keeping RIT on the radar, we need people with real life treatment experience to keep sharing factual information so that viable alternatives are not lost in the shuffle or hidden behind a business agenda.

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Jamie Reno (@jamiereno) · Oct 1, 2013 · #

Thanks for the kind words, Christina. Please keep reading!

Moshaddek (@moshaddek) · Oct 1, 2013 · #

I salute your endeavor soldier! You journey is the light house for us. You bypassed your oncologist's suggestion and you rocked and are still giving us forward thinking to fight cancer-THANKS. Let's make our collective effort to get Bexxer continued.

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Jamie Reno (@jamiereno) · Oct 1, 2013 · #

Thank you. I'm all ears, How can we save this drug?

shirley (@shirleylarry) · Oct 3, 2013 · #

Did you have Berxxar treatment? Where was your lymphoma? How long ago. Mine was in lymphnodes, had Bexxar in Feb. 2013
How do we save the drug?

Jamie Reno (@jamiereno) · Oct 3, 2013 · #

Hi Shirley, I did Bexxar in 1999 when I had my first recurrence. I had stage IV follicular NHL. It was in my nasal phaynx, among other places, and I had symptoms. How are you doing now? Did the Bexxar work for you? Best way to save this drug is demand that your oncologist tell his or her patients about it and to contact GlaxoSmithKline directly and urge them not to get rid of it! The number is:
888-825-5249

shirley (@shirleylarry) · Oct 4, 2013 · #

I had stage 3 NHL follicular small b-cell in many lymphnodes throughout my body. Treatment in Feb 2013. I'm doing fine, hardly any side effects. I am in a clinical trial at U of M in Michigan. This was my first time treatment, that's what the trial was for, first time users. Keep me posted.
Dr. told me average time for reoccurance is 8 yr. with Bexxar treatment. That sounds good. to me. Lets try to save this drug.

shirley (@shirleylarry) · Oct 4, 2013 · #

I just contacted the drug company. They asked for all my blood counts before and after treatment, any side effects much info on me. But in the end still said that after Feb. 2014 will no longer be making it. Only hope is if another company will market it or a gerneric take it over. Reason was given to me, not enough Dr. suggesting it. Dr. can make more money by giving chemo treatments is the bottom line. Political..... don't care about the patient....

cmom29 (@cmom29) · Oct 5, 2013 · #

Hi, Shirley,

I, also, had stage 3 follicular b cell NHL in 2011 and was treated with a combo of Treanda and Rituxan, followed by maintenance Rituxan for a year, then gamma globulin for 6 months since I was getting multiple skin infections. (I also have no spleen). Never had any side effects, but i'd like to know there's something else available if/when it comes back.
Carol

Dee (@djgoller) · Oct 6, 2013 · #

I am newly dx with NHL. Forgive my intrusion, but what type of skin infections? How do you know what to watch for? 

cmom29 (@cmom29) · Oct 6, 2013 · #

Please don't worry. The fact that I have no spleen just makes me more susceptible to infections. I don't think they're a typical side effect of the NHL treatment. I first had an infection in my nasal cavity, followed by several eye infections, and a staph infection on my abdomen and one on my finger. The skin infections on my abdomen started with redness, sensitivity and hot to the touch. The one on my finger began suddenly with redness that became dark quickly and was extremely painful. Each of those was cut and drained and treated with antibiotics. The eye and nose infections were also treated with topical and oral antibiotics. My oncologist started me on the gamma globulin infusions (1 a month for 6 months) to boost my immune system. He didn't want me to continue to be prescribed antibiotics; we all know they should be saved for anything really serious. I haven't had any infections since my last infusion of gammag. 2 months ago.
I'm sure you don't have to worry about this. I'm feeling great and am in complete remission from the NHL.

Chuck Scott (@thrumyeyes2004) · Oct 1, 2013 · #

I agree wholeheartedly. Big Pharma has a responsibility to the public they serve and that has made them among the most profitable industries in the world. A drug that has such a positive impact should not be allowed to become an "orphan" drug that is solely driven by profit motive. Corporations bear some responsibility to the society that consumes their products.

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Jamie Reno (@jamiereno) · Oct 1, 2013 · #

Well said, Chuck.

Jan Waters (@janwsyc) · Oct 1, 2013 · #

Jamie, you are so right on! In my opinion the drug companies don't want to do the work to convince the oncologists to prescribe RIT. That is run clinical trials that show clearly that RIT is the superior treatment for a lot of NHL patients. Trying to educate the public has not worked because the public wants to do what their doctors say to do and doctors are not prescribing RIT. How sad for patients clearly the victims because they aren't getting a potentially excellent treatment. Like you, I went out on my own to get a second opinion and was treated with Zevalin in 2004. Thank goodness my ongologist listened to me and got me the treatment I wanted. No recurrence so far. The previous chemo treatments were wearing me out. RIT gave me life and I'll celebrate my 71 birthday in november. I wish we could get your article to all follicular NHL patients. Still kicking!! Jan Waters

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Jamie Reno (@jamiereno) · Oct 1, 2013 · #

You are awesome, Jan. Thankfully, Zevalin is still available, for now. But you have to wonder how long Spectrum will keep backing that drug.

John Vaughn (@john_vaughn) · Oct 1, 2013 · #

Jamie - great report! I am continually confused by the pharmaceutical industry. Now, with the nation's healthcare changes, it's hard to understand why these pharmaceutical companies and HMO's make the decisions that they do. I feel, sadly, that decisions are made for money and profit, rather than for the moral right reasons of caring for those in need. I am glad to know that you and hopefully more people will advocate for the life-saving cancer drugs, Bexxar and Zevalin.

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Denise Itzkowitz (@deniseitzkowitz) · Oct 1, 2013 · #

Thanks Jamie for raising awareness of this. It is shameful that this drug is being discontinued. I had planned on RIT for possible relapse. This is a terrible example of money greed and ignorance vs saving human lives.

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Jamie Reno (@jamiereno) · Oct 1, 2013 · #

Thanks Denise.

Jamie Reno (@jamiereno) · Oct 1, 2013 · #

Thanks for reading, Denise. I agree, it is beyond frustrating. This drug saves lives.

Bob Saar (@bob_saar) · Oct 1, 2013 · #

I've read Jamie's writing for over a decade, especially his stories and features from the perspective of a lymphoma soldier, and the best weapon he's ever told me about, through his stories and e-mails and telephone calls, is Bexxar. Jamie is an expert; listen to him.

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Jamie Reno (@jamiereno) · Oct 1, 2013 · #

Thank you Bob.

Jackie Harbin Worthy (@jackiehworthy) · Oct 2, 2013 · #

So now what? Who can represent this drug? I'm a sideline cheerleader as our son is currently in remission with FL. However, RIT/Bexxar is always in the back of my mind as ... "someday, maybe.” I see the ASH Conference is to be in December (http://hematology.org/Meetings/Annual-Meeting/?utm_source=CalendarListings&utm_medium=Web&utm_campaign=55thASHAnnualMeeting ). Is there someone of influence and who can speak at this conference?

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Jamie Reno (@jamiereno) · Oct 2, 2013 · #

Good question, Jackie. Unfortunately, GSK seems resolute about scrapping Bexxar. I don;t think they can be swayed. My hope was that someone in Congress would step in, but I don't think there is any real legal recourse that will save this drug. I am doing what I can to raise awareness.

Jackie Harbin Worthy (@jackiehworthy) · Oct 2, 2013 · #

How very sad. Thanks for your reply.

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Jan Waters (@janwsyc) · Oct 2, 2013 · #

If you get in touch with Spectrum Pharmaceuticals you might find someone to talk to regarding this matter. Spectrum has been trying for years to sell Zevalin (that is the drug I had and am still am remission 9 years out). But they have been marketing to consumers and I just think not that many consumers are going to go searching for their own answers like Jamie and I did. Jan Waters

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charles (@charles) · Oct 4, 2013 · #

See my comments about Zevalin pasted from below: Great article and commentary. I thought i would point out that there are 2 RIT drugs; Bexar and Zevalin. Zevalin is still widely available in the US and is probably the "better" of the 2 drugs. As an oncologist i would also like people to understand that the real reason RIT is not as widely used as it probably should be is because of the way the government regulates the drug which makes it easier for doctors to give their patients alternatives, many of which are more expensive and less convenient. RIT is a great option for patients but unfortunately patients need to be aware of the drug and empowered to ask their physician for it!

charles (@charles) · Oct 4, 2013 · #

Jackie; Zevalin is another RIT drug and here is a link to most research studies that have been published; http://news.cancerconnect.com/index.php?s=zevalin
Hunter

Jackie Harbin Worthy (@jackiehworthy) · Oct 4, 2013 · #

Thank you Charles, for taking your time to reply to this conversation. It is most helpful.
j

J. Stryker Meyer (@stryker) · Oct 2, 2013 · #

Jamie,
Thank you for an insightful story as viewed by a cancer survivor.
Good work.

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da2218 (@da2218) · Oct 2, 2013 · #

shouldnt we try to petition congress? There has to be something we can do to be heard?

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Jan Waters (@janwsyc) · Oct 2, 2013 · #

many of us did petition the medicare department when they threatened to reimburse only 50% of treatment with RIT back in the early 2000's. We got many names to sign and a senator from Michigan to support us and we got it changed!! It was work and Karl the moderator of lymphomation.org and Betsy de Parry put hours of work in on this issue. But we got it changed. Karl is upset that Bexxar is being discontinued. People who make these decisions don't have patients in mind or they'd be out there trying to find a way to sell their wonderful drug!! Jan

Jamie Reno (@jamiereno) · Oct 2, 2013 · #

The petition route has been taken before by proponents of Bexxa: http://www.thepetitionsite.com/1/bexxar/

http://mycancerjourneys.blogspot.com/2010/11/make-bexxar-accessible-petition-update.html

But I would certainly sign and publicize a new one.

da2218 (@da2218) · Oct 2, 2013 · #

My dr is Dr Andre Goy, he is a Renowned international doctor and
researcher. I will speak to his office about this as well as the new
patient advocate at Hackensack University medical center. Her name is Mrs.
Parker she's a cancer survivor and the huge fundraiser and now a patient
Advocator for new and current patients.

--
Warm Regards,
Denise Albanese
Business Development
Cost Reduction Solutions
Main Office- 973-887-8124
Cell Number -973-464-2428
Denise@costreductionsolutions.com

Jamie Reno (@jamiereno) · Oct 2, 2013 · #

Thanks Denise, nice of you to get in touch. You will speak to him about what, specifically? Bexxar?

da2218 (@da2218) · Oct 2, 2013 · #

Yes, I will actually pdf your recent post and send to Dr. Goy's office as
well as the new patient advocate at Hackensack.

I will also ask Dr. Goy if he feels that there is a newer better drug out
there and if he has the same concerns regarding Bexxar.

Warm Regards,
Denise Albanese
Business Development
Cost Reduction Solutions
Main Office- 973-887-8124
Cell Number -973-464-2428
Denise@costreductionsolutions.com

Jamie Reno (@jamiereno) · Oct 2, 2013 · #

Thanks. I am up on all the latest treatments for lymphoma, from the kinase inhibitors to Revlimid to viral-based therapies and much more. Nothing to date has been more effective than RIT, but many of the new meds are very promising. Your doctor may or may not be aware of all of these latest treatments. Sadly, oncologists have not championed RIT. Patients need to TELL their docs about this treatment, not ask them about it.

Jamie Reno (@jamiereno) · Oct 2, 2013 · #

Thanks Jan. You may recall that I, too, was a big part of this fight. I wrote many stories about Bexxar and RIT, in Newsweek and elsewhere, and wrote three books with RIT themes, including the one that includes you: http://hopebeginsinthedark.com/. But from the beginning it was an uphill battle to save Bexxar. We were all sadly clinging to a greased rope.

Jan Waters (@janwsyc) · Oct 2, 2013 · #

This person is right!! My doctor didn't tell me a out RIT. I told him!! Jan

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Jan Waters (@janwsyc) · Oct 2, 2013 · #

Everybody get Jamie's books. They are great with many stories of hope. Jan

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Jamie Reno (@jamiereno) · Oct 2, 2013 · #

Bexxar, that is. :)

charles (@charles) · Oct 2, 2013 · #

Great article and commentary. I thought i would point out that there are 2 RIT drugs; Bexar and Zevalin. Zevalin is still widely available in the US and is probably the "better" of the 2 drugs. As an oncologist i would also like people to understand that the real reason RIT is not as widely used as it probably should be is because of the way the government regulates the drug which makes it easier for doctors to give their patients alternatives, many of which are more expensive and less convenient. RIT is a great option for patients but unfortunately patients need to be aware of the drug and empowered to ask their physician for it!
C

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Jamie Reno (@jamiereno) · Oct 2, 2013 · #

Thanks Charles!

Loretta (@loretta310) · Oct 2, 2013 · #

I have fNHL, Stage IV, Grade I. I was treated with Rituxan as monotherapy and achieved a complete response to therapy. For the past four years, I have been telling my oncologist that I want to have RIT as my next therapy. He finally agreed and said he had someone at the Cleveland Clinic he would send me to when the time came.

Now, at my last office visit, he said there was a recent study that proved Treanda/Rituxan had better results than RIT. Has anyone heard of this study? I told him that I would rather have a one week treatment versus six months of chemotherapy and I still insisted on RIT (now Zevalin) to which he agreed.

Jamie, what can we do as a group or individually to assure that Zevalin won't have the same demise as Bexxar?

Loretta

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Jamie Reno (@jamiereno) · Oct 2, 2013 · #

Loretta, obviously I am not a doctor. But I do know that there have been studies in which Treanda and Rituxan have compared very favorably with chemo and Rituxan. There are also studies of Zevalin used after an initial induction therapy that significantly improved progression-free survival. I am a big fan of both Zevalin and Bexxar. Several studies have shown that RIT produces the highest percentage of complete remissions as well as the longest periods of remission. I had 13 years remission from Bexxar. The key is to get as much information as you can from your doctor, and to consult with as many others as you can, including others who have been treated, and perhaps other oncologists, if possible. Information is power. As for Zevalin suffering the same fate as Bexxar, I hope that will not happen. The best thing we can do as patients is tell our doctors we want these treatment options. It all comes down to the patients. We have to let our voices be heard.

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Jan Waters (@janwsyc) · Oct 2, 2013 · #

Everyone write to Spectrum. As far as I know they are not canceling the drug but it is not selling well because doctors aren't prescribing it. I had the drug in 2004 at Ohio State University Cancer center. I had to ask for it. I went to Michigan to get a second opinion and that doctor said I'd be a good candidate for it. I'd had three precious treatments, I've been in remission since 2004. Jan

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charles (@charles) · Oct 4, 2013 · #

I am not aware of a study that directly compares Treanda/Rituxan to Zevalin which is the only commercaily available RIT. I will do some research and see what i can learn. I do know that Zevalin only takes 10 days to deliver and should be significanly less costly than prolonged treatment with Treanda and Rituxan. I will see what i can learn
C

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