The answer is yes, if Congress doesn’t act quickly. In a tale that defies belief, Bexxar and Zevalin have become mired in an governmental accounting error that will result in their no longer being available unless Congress fixes the error before January 1. And if they don’t? Some of the 500,000 lymphoma patients in the United States will surely die.
As most of you know, these drugs have yielded response rates as high as 95% even for patients who have failed other types of treatments. And with some patients in complete remission for many years, even after nothing else worked, some doctors are even beginning to whisper the word “cure.”
For all Washington’s talk of its commitment to curing cancer, you’d think these drugs would be hailed as the miracles they are. Wrong.
Each year, the Centers for Medicaid and Medicare Services (CMS) tells hospitals and doctors how much they’ll be paid for drugs, services and procedures. CMS decided that payments for Bexxar and Zevalin, in 2008, will be cut to about half of what hospitals have to pay for them. With a shortfall that hospitals can’t possibly absorb, the drugs simply can’t be offered to patients.
Why on earth would a federal agency do this? From the day these drugs were approved in 2002 and 2003, they didn’t fit neatly into any CMS category. Rather than creating a new category for a new class of therapy, CMS forced them into existing ones, much like trying to force a square peg into a round hole. The flawed accounting methodology has worsened each year until it finally doomed these drugs to their own deaths. Even more unbelievable is that the agency’s report admits to basing its decision on flawed data!
So where does this leave people who need the drugs? It leaves a 19-year-old woman begging for her future. A 37-year-old father pleading to watch his two boys grow up. An active 67-year-old grandmother, who has no other options, facing death. And it leaves angry families calling this blunder “bureaucratic genocide.”
Physicians and organizations representing them have weighed in, too. Dr. Richard Wahl of Johns Hopkins says, “The prospect of their (Bexxar and Zevalin) not being available due to CMS is criminal.” And patients with other forms of cancer are wondering if this could happen to drugs that could possibly save their lives.
Time is short, but Congress can fix this horrible mistake. If they don’t, their fellow Americans will surely pay dearly…with their lives. And the 10.5 million cancer survivors plus their families will surely remember that when they go to the polls.
If you haven’t already, I urge you to write and call your representatives as soon as possible! Let them know this ruling simply cannot stand.
Betsy
Saturday, November 24, 2007
Thursday, August 23, 2007
Zevalin Is Sold
As many of you know, Biogen Idec has been attempting to sell Zevalin. Last week, Cell Therapeutics Inc. (CTI) announced that it has purchased the drug.
CTI is a small company which has no approved products to date. However, it is developing a drug called Pixantrone which, from what I have read, can be substituted for the drug in CHOP and ESHAPE which can cause heart damage. Apparently the company felt that Zevalin would be an additional lymphoma drug in its portfolio, and certainly one that it can begin selling immediately.
I doubt the purchase will have any affect on patients whatsoever.
What will affect patients is the reimbursement problems that both Zevalin and Bexxar face. Several of you have responded to the past two entries regarding that issue, and I want to thank those of you who have joined the fight to save these drugs. Indeed, there is strength in numbers - so if you haven’t yet sent your comments to CMS, please consider taking the time to do so. This is one instance in which your voice really does count.
Betsy
CTI is a small company which has no approved products to date. However, it is developing a drug called Pixantrone which, from what I have read, can be substituted for the drug in CHOP and ESHAPE which can cause heart damage. Apparently the company felt that Zevalin would be an additional lymphoma drug in its portfolio, and certainly one that it can begin selling immediately.
I doubt the purchase will have any affect on patients whatsoever.
What will affect patients is the reimbursement problems that both Zevalin and Bexxar face. Several of you have responded to the past two entries regarding that issue, and I want to thank those of you who have joined the fight to save these drugs. Indeed, there is strength in numbers - so if you haven’t yet sent your comments to CMS, please consider taking the time to do so. This is one instance in which your voice really does count.
Betsy
Monday, August 20, 2007
Your Voice Counts!
In my last entry, I explained that CMS (Center for Medicare and Medicaid Services) is proposing to cut reimbursement for Bexxar and Zevalin by approximately half and that, if approved, this would have dire consequences for lymphoma patients. I think we all agree that we simply cannot afford to lose this or any other valuable treatment option, and we need to let CMS know that the proposed change is unacceptable. Here’s how you can help:
CMS invites public comments, but the comment period will end September 14. Following is the letter I posted last week which you may change to fit your own situation. Instructions for posting comments follows the letter.
RE: CMS-1392-P
Comments regarding proposed changes to diagnostic and therapeutic
radiopharmaceuticals
Gentlemen:
I am writing to vehemently protest the proposed changes in reimbursement for I-131 tositumomab, commonly known as Bexxar, and Y90 ibritumomab, commonly known as Zevalin. These two drugs belong to a class of medicine known as radioimmunotherapy (RIT). Although the drugs are given as a single treatment, the proposed reimbursement separates their components for payment under both diagnostic and therapeutic radiopharmaceuticals. The total amount of reimbursement for all components of the treatment amounts to approximately one half their cost, leaving hospitals unreimbursed for the remaining cost. This will have dire consequences for patients, for it will effectively deny them access to these drugs.
Five years ago, I was rescued by RIT after all else failed, and so from a very personal standpoint, I know how effective it is. But more important than my personal experience, scientific studies consistently show that RIT is the most effective single agent available for the treatment of some forms of lymphoma. It has few side effects, and because it is given in a period of only one week, patients are able to return to work almost immediately. Traditional treatments such as chemotherapy and transplants require much longer treatment periods and cause significantly more side effects which add to both the cost of treatment and the reduction in patient productivity. Worse, these traditional treatments are known to be less effective than RIT.
If the proposed reimbursement change is adopted, hospitals will not subsidize this treatment and patients will no longer have access to it. In fact, if it is approved, the change will effectively sound the death knoll for this important and effective treatment. This begs several questions: How can the war on cancer ever be won if newer and better FDA-approved treatments are allowed to disappear because the system of reimbursement fails to recognize their value to human life? How many millions of dollars will have been wasted on their development? And how many patients will die?
It is highly doubtful that I would be alive today had RIT not become available in the nick of time. All patients deserve the same chance of a successful outcome, but they will not have that chance if the proposed change is adopted. And so it is that I urge you – in fact, I beg you – to consider patients first and to deny the proposed changes in reimbursement to these drugs. Thank you for your consideration.
Sincerely,
Betsy de Parry
Ann Arbor, Michigan
To post your comment, go to: http://www.accessdata.fda.gov/scripts/oc/dockets/comments/commentdocket.cfm?AGENCY=CMS On the left, click on CMS-1392-P and then click "Go" on the right. That will take you to a page where you will fill out your name and category (which is individual). Then click continue and that will take you to a page where you must select the "issue area." Scroll down and you will see a choice of "Payment for Diagnostic Radiopharmaceuticals" or "Payment of Therapeutic Pharmaceuticals." (Now we have a problem - CMS has divided payment for RIT into both of these categories, but because the therapeutic dose is the greater amount, I clicked that but referred to this problem in the letter above.) Once you have chosen the issue area, it will take you to the next page where you can post comments.
There is strength in numbers and so I urge you to join this grassroots effort. And if you need additional information, please don’t hesitate to contact me.
Many thanks,
Betsy
CMS invites public comments, but the comment period will end September 14. Following is the letter I posted last week which you may change to fit your own situation. Instructions for posting comments follows the letter.
RE: CMS-1392-P
Comments regarding proposed changes to diagnostic and therapeutic
radiopharmaceuticals
Gentlemen:
I am writing to vehemently protest the proposed changes in reimbursement for I-131 tositumomab, commonly known as Bexxar, and Y90 ibritumomab, commonly known as Zevalin. These two drugs belong to a class of medicine known as radioimmunotherapy (RIT). Although the drugs are given as a single treatment, the proposed reimbursement separates their components for payment under both diagnostic and therapeutic radiopharmaceuticals. The total amount of reimbursement for all components of the treatment amounts to approximately one half their cost, leaving hospitals unreimbursed for the remaining cost. This will have dire consequences for patients, for it will effectively deny them access to these drugs.
Five years ago, I was rescued by RIT after all else failed, and so from a very personal standpoint, I know how effective it is. But more important than my personal experience, scientific studies consistently show that RIT is the most effective single agent available for the treatment of some forms of lymphoma. It has few side effects, and because it is given in a period of only one week, patients are able to return to work almost immediately. Traditional treatments such as chemotherapy and transplants require much longer treatment periods and cause significantly more side effects which add to both the cost of treatment and the reduction in patient productivity. Worse, these traditional treatments are known to be less effective than RIT.
If the proposed reimbursement change is adopted, hospitals will not subsidize this treatment and patients will no longer have access to it. In fact, if it is approved, the change will effectively sound the death knoll for this important and effective treatment. This begs several questions: How can the war on cancer ever be won if newer and better FDA-approved treatments are allowed to disappear because the system of reimbursement fails to recognize their value to human life? How many millions of dollars will have been wasted on their development? And how many patients will die?
It is highly doubtful that I would be alive today had RIT not become available in the nick of time. All patients deserve the same chance of a successful outcome, but they will not have that chance if the proposed change is adopted. And so it is that I urge you – in fact, I beg you – to consider patients first and to deny the proposed changes in reimbursement to these drugs. Thank you for your consideration.
Sincerely,
Betsy de Parry
Ann Arbor, Michigan
To post your comment, go to: http://www.accessdata.fda.gov/scripts/oc/dockets/comments/commentdocket.cfm?AGENCY=CMS On the left, click on CMS-1392-P and then click "Go" on the right. That will take you to a page where you will fill out your name and category (which is individual). Then click continue and that will take you to a page where you must select the "issue area." Scroll down and you will see a choice of "Payment for Diagnostic Radiopharmaceuticals" or "Payment of Therapeutic Pharmaceuticals." (Now we have a problem - CMS has divided payment for RIT into both of these categories, but because the therapeutic dose is the greater amount, I clicked that but referred to this problem in the letter above.) Once you have chosen the issue area, it will take you to the next page where you can post comments.
There is strength in numbers and so I urge you to join this grassroots effort. And if you need additional information, please don’t hesitate to contact me.
Many thanks,
Betsy
Thursday, August 16, 2007
A HUGE Problem for RIT
Much has been written recently about the underutilization of the two radioimmunotherapy drugs, Bexxar and Zevalin. As if they haven’t faced enough hurdles, they now face the biggest hurdle of all. Medicare is proposing that the reimbursement for Bexxar be cut by more than half. Zevalin faces the same problem, although I have exact numbers for only Bexxar. If this proposed change is adopted, it will sound the death knoll for these drugs once and for all. If ever this treatment needed help, it is now. What follows is an explanation of the problem and how you can help.
Each year, the Center for Medicare and Medicaid Services (CMS), revises its reimbursement schedule. For next year, it is proposing to reimburse Bexxar in the amount of $13,156.51. The total cost of Bexxar is $26,780 plus a $3000 compounding fee for a total of $29,780. This means that hospitals would have to subsidize the remaining $16,623.49 after reimbursement. Zevalin faces the same shortfall.
Here's the reality. Hospitals will not subsidize their Medicare patients which will effectively deny Bexxar (as well as Zevalin) to these patients. And hospitals will not offer drugs to privately insured patients unless Medicare patients have access to the same drugs. This means that Bexxar and Zevalin will effectively be denied to everyone. If this proposed change occurs, it is the end of these drugs - as well as the promising future of radioimmunotherapy, at least until our government decides to catch up to advances in medicine. It means that lymphoma patients will not have access to these important drugs!
This is one time when many voices are needed and that yours can make a difference. CMS is inviting public comments on these proposed changes until September 14 and I certainly plan to protest them. I hope that each of you will join me. We cannot allow these effective treatments to disappear.
I am currently drafting a letter to CMS and will post it in the next day or two with information about where you can send your comments.
In the meantime, if anyone wants more details, please email me and I will send you a complete breakdown of the proposed changes and the link to the CMS document.
This news is devastating to RIT but more importantly, devastating to lymphoma patients. If the proposed change takes effect, none of us may be able to get these drugs if we need them. Please stay tuned for more information and a draft of my letter that you can modify for submission to CMS.
Betsy
Each year, the Center for Medicare and Medicaid Services (CMS), revises its reimbursement schedule. For next year, it is proposing to reimburse Bexxar in the amount of $13,156.51. The total cost of Bexxar is $26,780 plus a $3000 compounding fee for a total of $29,780. This means that hospitals would have to subsidize the remaining $16,623.49 after reimbursement. Zevalin faces the same shortfall.
Here's the reality. Hospitals will not subsidize their Medicare patients which will effectively deny Bexxar (as well as Zevalin) to these patients. And hospitals will not offer drugs to privately insured patients unless Medicare patients have access to the same drugs. This means that Bexxar and Zevalin will effectively be denied to everyone. If this proposed change occurs, it is the end of these drugs - as well as the promising future of radioimmunotherapy, at least until our government decides to catch up to advances in medicine. It means that lymphoma patients will not have access to these important drugs!
This is one time when many voices are needed and that yours can make a difference. CMS is inviting public comments on these proposed changes until September 14 and I certainly plan to protest them. I hope that each of you will join me. We cannot allow these effective treatments to disappear.
I am currently drafting a letter to CMS and will post it in the next day or two with information about where you can send your comments.
In the meantime, if anyone wants more details, please email me and I will send you a complete breakdown of the proposed changes and the link to the CMS document.
This news is devastating to RIT but more importantly, devastating to lymphoma patients. If the proposed change takes effect, none of us may be able to get these drugs if we need them. Please stay tuned for more information and a draft of my letter that you can modify for submission to CMS.
Betsy
Monday, August 13, 2007
Complementary and Alternative Medicine
Many people have asked if I believe that alternative medicine can cure lymphoma. Some use the term “alternative” while others use “complementary.” The terms actually mean different things. Alternative medicine replaces standard treatments while complementary medicine is exactly that: it complements standard treatments.
I am skeptical about alternative medicine. With little or no scientific proof that it works, I would personally prefer to undergo treatments that have been studied and proven.
Complementary medicine is a different story. It can include everything from herbs to guided imagery, and I believe that integrating some of these practices with standard treatments can certainly be helpful. In fact, many institutions are now recognizing the value of complementary medicine, but I do think we have to be careful.
A couple of years ago, a woman undergoing chemotherapy came to our support group which is specifically for lymphoma patients and is moderated by a nurse practitioner who specializes in lymphoma and who is very open to complementary therapies. The patient was using an herbal cleanser to rid her body of the poisons she was sure that chemo was leaving behind. I can’t remember now what the woman was using, but our moderator knew exactly what it was and told her to stop immediately because it was diluting the effectiveness of the chemo.
There is an obvious lesson here. Unwittingly, we may take something that could potentially diminish the very results we are trying to achieve with our mainstream treatments, so if we’re going to use complementary therapies, we should discuss them with our oncologists. That would be the safest way to use complementary therapies most effectively.
There are some good links to various complementary and alternative medicine sites at:
http://www.lymphomation.org/wwlife.htm
Happy Monday!
Betsy
I am skeptical about alternative medicine. With little or no scientific proof that it works, I would personally prefer to undergo treatments that have been studied and proven.
Complementary medicine is a different story. It can include everything from herbs to guided imagery, and I believe that integrating some of these practices with standard treatments can certainly be helpful. In fact, many institutions are now recognizing the value of complementary medicine, but I do think we have to be careful.
A couple of years ago, a woman undergoing chemotherapy came to our support group which is specifically for lymphoma patients and is moderated by a nurse practitioner who specializes in lymphoma and who is very open to complementary therapies. The patient was using an herbal cleanser to rid her body of the poisons she was sure that chemo was leaving behind. I can’t remember now what the woman was using, but our moderator knew exactly what it was and told her to stop immediately because it was diluting the effectiveness of the chemo.
There is an obvious lesson here. Unwittingly, we may take something that could potentially diminish the very results we are trying to achieve with our mainstream treatments, so if we’re going to use complementary therapies, we should discuss them with our oncologists. That would be the safest way to use complementary therapies most effectively.
There are some good links to various complementary and alternative medicine sites at:
http://www.lymphomation.org/wwlife.htm
Happy Monday!
Betsy
Wednesday, August 8, 2007
Thinking of You!
This week is flying by all too fast. I'm here in West Palm Beach taking care of my grandkids who are 6 and 8, We've had lots of laughs and lots of hugs - and every minute is a joy! I am so grateful to be alive to share these moments and I owe it all to a new treatment - radioimmunotherapy - which became available in the nick of time and to a doctor who didn't hestitate to use it.
I haven't had a minute to myself to compose even a reasonably coherent entry but I promise to get back to business by next Monday.
In the meantime, the Lymphoma Research Foundation (LRF) is another good resource to learn more about lymphoma. I just received an email today that they have posted my story on their site. For those of you who have been following this blog and the previous one, you will have heard it all before. But for anyone who's new, the link is:
I hope all of you are having a good week. I keep you all close in my heart.
Betsy
Saturday, August 4, 2007
The Coming Week
As those of you who read the old blog know, my entries were made on Monday and Thursday, and I intend to keep that schedule, but I'm getting used to the way entries are made on this new site and I can't yet figure out how to post an entry and publish it later. Technology and I are not good friends!
Since I'm going out of town early tomorrow morning, I'm writing now in case I can't make an entry on Monday. I may have figured out how to email an entry but in case you don't hear from me on Wednesday or Thursday, it's because I'm just too technically challenged to post an entry - not because I've forgotten about you! So don't give up - if I don't write during the week, for sure I'll be back with you next Sunday.
So where am I going? To Florida to keep my grandkids for a week! I can hardly wait! And I can't help but think back to this time five years ago when I was relapsing during treatment for the second time and wondering if I would see them start kindgarten. I've done a lot more than that! The older one is headed into 3rd grade and the younger one will start 1st. My week will be filled with swimming and games and laughter and love. And I am enormously thankful to be here to experience every minute of it. It is doubtful I would be stepping on a plane in the morning had my doctor not recommended RIT, and just think what I'd be missing! Boy, am I grateful!!!!
Every single patient deserves the same chance I had - and I will continue to spread that message as far and wide as I possibly can.
So to each of you, I hope you will have a good week. I thank those of you who have followed me to the new site and welcome others. And rest assured that no matter where I go or what I'm doing, I take each and every one of you along in my heart.
Betsy
Since I'm going out of town early tomorrow morning, I'm writing now in case I can't make an entry on Monday. I may have figured out how to email an entry but in case you don't hear from me on Wednesday or Thursday, it's because I'm just too technically challenged to post an entry - not because I've forgotten about you! So don't give up - if I don't write during the week, for sure I'll be back with you next Sunday.
So where am I going? To Florida to keep my grandkids for a week! I can hardly wait! And I can't help but think back to this time five years ago when I was relapsing during treatment for the second time and wondering if I would see them start kindgarten. I've done a lot more than that! The older one is headed into 3rd grade and the younger one will start 1st. My week will be filled with swimming and games and laughter and love. And I am enormously thankful to be here to experience every minute of it. It is doubtful I would be stepping on a plane in the morning had my doctor not recommended RIT, and just think what I'd be missing! Boy, am I grateful!!!!
Every single patient deserves the same chance I had - and I will continue to spread that message as far and wide as I possibly can.
So to each of you, I hope you will have a good week. I thank those of you who have followed me to the new site and welcome others. And rest assured that no matter where I go or what I'm doing, I take each and every one of you along in my heart.
Betsy
Thursday, August 2, 2007
Finding Accurate Information
When I was first diagnosed back in 2002, I did what everyone does. First I panicked. Then I got busy trying to learn everything I could about lymphoma. There wasn’t as much information on the web as there is now, but there was still enough to make my head spin, and I couldn’t help but wonder what was accurate and what wasn’t. What applied to me and what didn’t? And how was I to know the difference?
Truth is, we’re all desperate to find answers, but we need to separate the snake oil from the truth. I came to the conclusion that accurate information could only be found on sites that provided evidence-based medicine, meaning that the information was based on studies and trials rather than opinion. Much as I wanted to find an “easy” answer to my dilemma, and much as I wanted to avoid chemotherapy, I suspected that that drinking 8 gallons of carrot juice a day would do little more than give me an orange tint. And no, I’m certainly not against complementary therapies. I just wanted to know that whatever path I chose had been scientifically proven to work.
I also found some sites that required me to pay for information, and I wondered who was profiting from my illness – and why. There are too many reputable agencies which provide free information, such as The American Cancer Society and The Lymphoma Research Foundation.
I did stumble onto a site which I have followed for some time now and which is, in my humble opinion, the best “one stop shop” for information about lymphoma. It’s at www.lymphomation.org and it’s run by a group called Patients Against Lymphoma. It was started several years ago by a gentleman named Karl Schwartz whose wife had lymphoma and is now doing well. Karl and the others have devoted their lives to gathering and sharing information which is evidence-based. The site doesn’t attempt to “play doctor” by recommending one thing or another, but it does provide up to date information on clinical trials, new treatments, etc. I’ve found it to be a trustworthy site for accurate information.
I’ve always believed that knowledge empowers us, but it’s even more important to have the right knowledge. In this day of information overload, we all need to be careful about whose advice we follow.
Betsy
Truth is, we’re all desperate to find answers, but we need to separate the snake oil from the truth. I came to the conclusion that accurate information could only be found on sites that provided evidence-based medicine, meaning that the information was based on studies and trials rather than opinion. Much as I wanted to find an “easy” answer to my dilemma, and much as I wanted to avoid chemotherapy, I suspected that that drinking 8 gallons of carrot juice a day would do little more than give me an orange tint. And no, I’m certainly not against complementary therapies. I just wanted to know that whatever path I chose had been scientifically proven to work.
I also found some sites that required me to pay for information, and I wondered who was profiting from my illness – and why. There are too many reputable agencies which provide free information, such as The American Cancer Society and The Lymphoma Research Foundation.
I did stumble onto a site which I have followed for some time now and which is, in my humble opinion, the best “one stop shop” for information about lymphoma. It’s at www.lymphomation.org and it’s run by a group called Patients Against Lymphoma. It was started several years ago by a gentleman named Karl Schwartz whose wife had lymphoma and is now doing well. Karl and the others have devoted their lives to gathering and sharing information which is evidence-based. The site doesn’t attempt to “play doctor” by recommending one thing or another, but it does provide up to date information on clinical trials, new treatments, etc. I’ve found it to be a trustworthy site for accurate information.
I’ve always believed that knowledge empowers us, but it’s even more important to have the right knowledge. In this day of information overload, we all need to be careful about whose advice we follow.
Betsy
Monday, July 30, 2007
You're The Reason!
I've often been asked - by people who never had cancer - why I continue to "let" lymphoma remain a big part of my life. Today I'll explain why.
In my last entry, I mentioned that RIT rescued me in the nick of time, after all else failed, and that I was treated by Dr. Mark Kaminski, who developed Bexxar, one of the two RIT drugs. There is a tremendous level of comfort when you are being treated by one of the leading lymphoma experts, and as I have often said, and will always believe, I was incredibly lucky to be at the right place at the right time.
After my book was published and I began to hear from other patients, I slowly began to realize that not everyone is so lucky. Coincidentally, just yesterday, The New York Times published an excellent article entitled "Cancer Patients, Lost in A Maze of Uneven Care," and it's definitely worth reading. Here's the link:
http://www.nytimes.com/2007/07/29/health/29Cancer.html?th&emc=th
As I heard from more and more lymphoma patients, I also began to wonder why so few were offered RIT as an option. Mort and I wrote extensively about this issue in our previous blog, and the New York Times published an excellent article about it just two weeks ago.
While I heard from many patients who continued to undergo lengthy and sometimes invasive procedures without knowing that they may have other options, I also knew that there is a large and growing group of people like me who are living normal, healthy lives because we were the beneficiaries of new and better treatments and because we have doctors who employ the most advanced treatments medical science has to offer. All patients, present and future, deserve the same chance that we have, and it is for them that my commitment to raising awareness of lymphoma and its treatment options have only increased with time.
And so you are the reason I will always "let" lymphoma be a part of my life. I would not have chosen to have disease, but connecting with so many of you has been gratifying and humbling, and you continually provide strength and inspiration and the fuel for my commitment. In turn, I hope that in some small way you find some support and encouragement as well as practical suggestions.
Happy Monday to all!
Betsy
In my last entry, I mentioned that RIT rescued me in the nick of time, after all else failed, and that I was treated by Dr. Mark Kaminski, who developed Bexxar, one of the two RIT drugs. There is a tremendous level of comfort when you are being treated by one of the leading lymphoma experts, and as I have often said, and will always believe, I was incredibly lucky to be at the right place at the right time.
After my book was published and I began to hear from other patients, I slowly began to realize that not everyone is so lucky. Coincidentally, just yesterday, The New York Times published an excellent article entitled "Cancer Patients, Lost in A Maze of Uneven Care," and it's definitely worth reading. Here's the link:
http://www.nytimes.com/2007/07/29/health/29Cancer.html?th&emc=th
As I heard from more and more lymphoma patients, I also began to wonder why so few were offered RIT as an option. Mort and I wrote extensively about this issue in our previous blog, and the New York Times published an excellent article about it just two weeks ago.
While I heard from many patients who continued to undergo lengthy and sometimes invasive procedures without knowing that they may have other options, I also knew that there is a large and growing group of people like me who are living normal, healthy lives because we were the beneficiaries of new and better treatments and because we have doctors who employ the most advanced treatments medical science has to offer. All patients, present and future, deserve the same chance that we have, and it is for them that my commitment to raising awareness of lymphoma and its treatment options have only increased with time.
And so you are the reason I will always "let" lymphoma be a part of my life. I would not have chosen to have disease, but connecting with so many of you has been gratifying and humbling, and you continually provide strength and inspiration and the fuel for my commitment. In turn, I hope that in some small way you find some support and encouragement as well as practical suggestions.
Happy Monday to all!
Betsy
Thursday, July 26, 2007
A Little History
To give you all a little background, I was diagnosed with follicular lymphoma, Stage IV, in January 2002. Like everyone else who hears the word "cancer," my husband Alex and I were shocked and stunned. In the split second that it took for a doctor to utter the words, "You have lymphoma," life as we knew it ceased. Cancer plunged us headlong into unfamiliar territory without a compass or a map, much less the time to get our bearings. It cast us into a world of language we often didn't understand, compelled us to trust my life to total strangers, and forced us to make choices without our fully understanding the consequences. I've often had more time to find the perfect pair of shoes to match an outfit!
Fortunately, we live in Ann Arbor and happened to land at the University of Michigan in the hands of one of the top lymphoma experts in the world, Dr. Mark Kaminski, the developer of Bexxar, but we didn't know who he was at the time. Much later we would realize that I was incredibly lucky to be at the right place at the right time.
But back then, Bexxar and Zevalin, the two radioimmunotherapy drugs, were both under FDA review. At the time, I would learn that there was no cure for my type of lymphoma. Chemotherapy generally slowed the disease but it always came back. Remission periods varied from patient to patient, but each subsequent relapse would require stronger drugs until eventually no options remained. That wasn't exactly the future I had envisioned.
I started out in a clinical trial in which I would take 8 rounds of CVP followed by a vaccine six months later if I stayed in remission that long. I quickly failed that trial. After two rounds of CVP, it was clear my disease was not responding. R-CHOP came next, but after five of the planned eight rounds, my disease came roaring back.
But chemo did a lot of things it was expected to do. It deprived me of my hair, helped me to forget what day it was, gave me various infections, pneumonia, tumor lysis syndrome, complete exhaustion, and a couple of spontaneous vacations in Hotel Hell, otherwise known as the hospital. On the bright, it bought what I needed most - time.
For eight long months, I'd been fighting the battle, and lymphoma was clearly winning. Bexxar was still under FDA review, but Zevalin had received approval and Dr. Kaminski wasted no time making the arrangements for me to get it.
Early on September 11, 2002, Alex and I headed to the hospital for what we hoped would save my life. As we drove and listened to the news on the radio, the contrast couldn't have been greater. It was the first anniversary of 9/11, and I couldn't help but think that any one of the people who had died that horrible day would probably have traded with me for that extra year, even if it meant they had to have lymphoma.
Zevalin worked. Six weeks after the treatment, my scans showed no evidence of disease, and there has been no sign since of the ugly beast that tried to claim my life. It's been nearly five years since RIT rescued me after all else failed, and my life has taken a direction I never dreamed that it would. I wrote a book, co-wrote the blog with Mort, now write this one, and have become very vocal that cancer patients deserve to know all their options, including RIT.
Will write more about that on Monday. For now, I hope all of you have a wonderful weekend!
Betsy
Fortunately, we live in Ann Arbor and happened to land at the University of Michigan in the hands of one of the top lymphoma experts in the world, Dr. Mark Kaminski, the developer of Bexxar, but we didn't know who he was at the time. Much later we would realize that I was incredibly lucky to be at the right place at the right time.
But back then, Bexxar and Zevalin, the two radioimmunotherapy drugs, were both under FDA review. At the time, I would learn that there was no cure for my type of lymphoma. Chemotherapy generally slowed the disease but it always came back. Remission periods varied from patient to patient, but each subsequent relapse would require stronger drugs until eventually no options remained. That wasn't exactly the future I had envisioned.
I started out in a clinical trial in which I would take 8 rounds of CVP followed by a vaccine six months later if I stayed in remission that long. I quickly failed that trial. After two rounds of CVP, it was clear my disease was not responding. R-CHOP came next, but after five of the planned eight rounds, my disease came roaring back.
But chemo did a lot of things it was expected to do. It deprived me of my hair, helped me to forget what day it was, gave me various infections, pneumonia, tumor lysis syndrome, complete exhaustion, and a couple of spontaneous vacations in Hotel Hell, otherwise known as the hospital. On the bright, it bought what I needed most - time.
For eight long months, I'd been fighting the battle, and lymphoma was clearly winning. Bexxar was still under FDA review, but Zevalin had received approval and Dr. Kaminski wasted no time making the arrangements for me to get it.
Early on September 11, 2002, Alex and I headed to the hospital for what we hoped would save my life. As we drove and listened to the news on the radio, the contrast couldn't have been greater. It was the first anniversary of 9/11, and I couldn't help but think that any one of the people who had died that horrible day would probably have traded with me for that extra year, even if it meant they had to have lymphoma.
Zevalin worked. Six weeks after the treatment, my scans showed no evidence of disease, and there has been no sign since of the ugly beast that tried to claim my life. It's been nearly five years since RIT rescued me after all else failed, and my life has taken a direction I never dreamed that it would. I wrote a book, co-wrote the blog with Mort, now write this one, and have become very vocal that cancer patients deserve to know all their options, including RIT.
Will write more about that on Monday. For now, I hope all of you have a wonderful weekend!
Betsy
Monday, July 23, 2007
Welcome
Welcome to our new home - yours and mine. As many of you know, Mort Diamond and I co-wrote a blog at http://www.lymphomainnovations.com until this week when the grant which supported it on Healthology's website was not renewed. I'm told that the site will stay up so that you can refer back to it should you wish.
For more than a year, Mort and I wrote extensively about our experiences with lymphoma and the two drugs, Bexxar and Zevalin, which belong to a relatively new class of medicine called radioimmunotherapy (RIT), which saved both our lives, but which have been slow to find acceptance in the medical community. Many of our readers shared their personal stories with us and told us how helpful it was to communicate with others who had experienced the same illness. Connecting with so many of our fellow patients was deeply meaningful for Mort and me, and we simply couldn't abandon the hundreds of readers who regularly read our previous blog.
And so I frantically searched for a new home this past weekend which was not an easy task. Despite all the drugs I took during my illness, not a single one improved my technical skills, a side effect I would have gladly welcomed. Alas, I remain technically challenged but with help, managed to get this site up and running. For now, it's in my name, although I suspect that Mort will weigh in with his valuable comments. We'll figure that out in the coming days and weeks. In the meantime, I assure all of you that we are still here - and as always, we invite you to share your comments, questions or concerns.
Whew! Like all moves, this one was hectic. I'm just glad there was a way to stay connected with all of you and I look forward to hearing from you.
Betsy
For more than a year, Mort and I wrote extensively about our experiences with lymphoma and the two drugs, Bexxar and Zevalin, which belong to a relatively new class of medicine called radioimmunotherapy (RIT), which saved both our lives, but which have been slow to find acceptance in the medical community. Many of our readers shared their personal stories with us and told us how helpful it was to communicate with others who had experienced the same illness. Connecting with so many of our fellow patients was deeply meaningful for Mort and me, and we simply couldn't abandon the hundreds of readers who regularly read our previous blog.
And so I frantically searched for a new home this past weekend which was not an easy task. Despite all the drugs I took during my illness, not a single one improved my technical skills, a side effect I would have gladly welcomed. Alas, I remain technically challenged but with help, managed to get this site up and running. For now, it's in my name, although I suspect that Mort will weigh in with his valuable comments. We'll figure that out in the coming days and weeks. In the meantime, I assure all of you that we are still here - and as always, we invite you to share your comments, questions or concerns.
Whew! Like all moves, this one was hectic. I'm just glad there was a way to stay connected with all of you and I look forward to hearing from you.
Betsy
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