Targeted Information for
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« June 2007 |
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Mort and I are deeply saddened that this blog has come to an end. For over a year now, many of you have shared your joys and sorrows, your setbacks and your successes, and we have been deeply moved by each of you. When we began writing, I don't think either of us had any idea that this blog would have such an impact on patients. At first, those of you who wrote to us wondered what radioimmunotherapy was all about, but as the months passed, some of you learned enough about it to approach your doctors. We know that a good many of you have avoided transplants or successive chemotherapy treatments because of what you learned here. In fact, two patients contacted me this past weekend trying to find doctors who would discuss RIT with them. And last week, another reader made an appointment with an RIT specialist because of what he learned here.
So how we can leave you? We can't. We are hopeful that Healthology can find another sponsor soon, but in the meantime, I set up another blog this past weekend so that we can continue to share information with you. The site is located at http://www.lymphomablog.blogspot.com. Because this happened so quickly, the new site has been set up under my name because Mort and I have not had the time to figure out how to continue jointly, but I suspect he will be adding his thoughts under the comments section, at least for the time being.
And so as I write this final entry on this site, I'd like to summarize the suggestions that we've made during this past year. First and foremost, be proactive. You are in charge of your health. Learn all you can about your illness and your treatment options. As we have said repeatedly, you may have to find a hematologist/oncologist who is an expert in radioimmunotherapy if you think you are eligible for it, just as several of your fellow readers have done - with great success.
Be good to yourself. If you've ever wanted to skydive or become a redhead, don't wait. Do it now. You deserve it!
Stay positive. No matter what news you get, no one can predict your lifespan. My mother outlived every doctor's prediction for over 15 years. She passed away 26 days shy of her 96th birthday and took care of herself quite well until a month before she died, much to every doctor's disbelief.
So forget the statistics. Statistics are only numbers and you are not a number. Keep hope alive. Love like there is no tomorrow, but plan for an eternity of tomorrows.
Finally, I want to thank Biogen Idec for supporting the blog for as long as it did and thanks to Healthology for hosting it and supporting Mort and me when we had questions. I especially want to thank Mort for his valuable input. We didn't know each other before we started writing together, but I feel incredibly lucky that our paths crossed, for he is one of those very special people with an enormous heart who would reach out and help anyone who needs it.
And to each and every one of our readers, thanks for following our blog. Connecting with you has been the most rewarding experience of my life, and one that is quite humbling. And so as we move to a new home, only temporarily I hope, I hope that you will come along.
Sending you all healing hugs,
Betsy
With sadness I write my final entry because this blog has come to its end.
Firstly, I thank Biogen Idec for its educational support of this blog. Secondly, I thank Healthology for allowing me to serve, along with Betsy,. as co-moderator.
It has been an honor for me to have had the opportunity to assist other lymphoma patients and their loved ones. Knowing that patients---blog readers---have successfully received radioimmunotherapy (RIT) when they were told that transplantation was the sole option is most gratifying.
Appreciative responses that I have received are related to such a small effort on my part. Yet, my input seemingly has had such an important positive effect. Helping the lymphoma patient to ask the important questions of their oncologists or helping a patient find a physician experienced in RIT or soothing the anxiety in the patient's spouse has been a privilege for me.
It is my sincere hope that this blog will be brought back to life in order that other patients with a new diagnosis of lymphoma can be supported and assisted.
Thank you, Betsy, my partner in moderating the blog for your unflagging spirit and for placing service above self.
I hope that we meet again.
Mort
The comments from blog readers are so very interesting and poignant.
I have been in frequent communication with a lymphoma patient. Through emails we have discussed the prospective role of radioimmunotherapy (RIT) in treatment of lymphoma. What struck me so powerfully was the comment, "I wish I knew (a few days ago during the oncology consultation) what I know today" (about RIT).
This comment emphasizes again how important it is that we lymphoma patients continually educate one another and that we patients assume the power to insist upon a consultation with a physician who is experienced in radioimmunotherapy.
Mort
What a discussion the NY Times article generated! The story is all over the web, in blogs and sites I would never have imagined - even political ones! One blog entry was titled "Sicko Personified" and I think that sums it up quite nicely. People - not just lymphoma patients - seem to be surprised that money could influence treatment recommendations, but indeed they do.
It is interesting that reporters must disclose financial interests of doctors they quote. Yet doctors are not required to disclose their financial incentives, or lack thereof, to patients when recommending treatments. What's wrong with this picture?
I was also astounded by Dr. Connors' statements in the article. He says that RIT is difficult to oversee because the treatment must be coordinated with administering hospitals. Unfortunately, this very excuse has been made by many others and it's nothing more than a smokescreen. Here's why: RIT is coordinated twice. Chemotherapy and Rituxan also require coordination - and several times.
And frankly, if I thought my doctor was too lazy to coordinate my treatment, I'd run as far and fast as I could. My husband, who is a homebuilder, spends countless hours coordinating all the trades, subcontractors, etc. to build every home. Our clients are concerned only about their new homes, not how much time or effort Alex spends coordinating with others to get them built. The same goes for patients. We don't care about how much effort goes into coordinating our treatments but that we have the best possible ones for our conditions. We also have every right to expect our doctors to do everything within their power and knowledge to help us heal, and if that means coordinating treatment with others, so be it. It's part of their job description!
Dr. Connors also commented, "The doctors looking after people tend to turn to tools they themselves know how to use and are familiar with." That, too, is unfortunately true, and it's a mindset that prevents medicine from advancing as quickly as it could and should. Bexxar and Zevalin have been available for five years, yet the drugs have reached only 5 to 10 percent of patients eligible for it. How can the war on cancer ever be won if new and better treatments are shunned in favor of ones that doctors are more familiar with? Again, it is their job to make themselves familiar with new and better treatments!
Finally, it has often been stated that Bexxar and Zevalin have not been proven to prolong survival compared to other therapies. That statement is true but needs clarification. Bexxar and Zevalin have not been compared head-to-head to other therapies, but neither have many other treatments for many types of illnesses. As an example, Rituxan was widely embraced in combination with chemotherapy or as maintenance therapy well before it was approved for either use, well before it was compared head-to-head with other therapies and before any survival advantage was shown. Even now, there is little to show that Rituxan maintenance increases survival, and yet it is widely prescribed - and at a handsome profit.
I suppose I'm on a roll this morning, but those of us who walk into our doctors' office needing help should be made aware of all our options. I know from personal experience how agonizing lymphoma is, and when I think that 18,000 to 20,000 people a year might get RIT but don't, my heart aches - so if I sound a little frustrated, it's because I am.
On a much happier note, the results of my scan this past Monday show that I remain in perfect health. I am 4 years, 9 months, and 8 days past lymphoma, thanks to RIT!!!!!!
Betsy :))
In an earlier blog entry I wrote of Betsy's indefatigable spirit and zest in promoting radioimmunotherapy (RIT).
Her effort is responsible for the article in the NY Times on Saturday, July 14. The article is objective and accurate, and clearly indicates that RIT is underutilized in the treatment of lymphoma patients.
Well done, Betsy.
Mort
The New York Times published an article this past Saturday about the underutilization of RIT, and on the front page no less! Here is a link to it:
http://www.nytimes.com/2007/07/14/health/14lymphoma.html?em&ex=1184644800&en=b0c300b9e7f17df0&ei=5087%0A
In response to the article, which was also published in the San Diego paper as well as two Ohio papers and probably others I am unaware of, I began receiving emails early Saturday morning, and they have continued all weekend. Patients from around the country spoke of taking their third or fourth treatment. Others spoke of making a decision about the next treatment. Most had never heard of RIT. A few had vaguely heard of it. All were shocked to think that money could possibly influence treatment recommendations. Several people called that "scary." Unfortunately, it's a flaw in our health care system.
Indeed, my heartstrings have been pulled by the stories I have heard this weekend, but I am so glad that people made the effort to find me. Clearly, there are many people who find information not on the web but through more traditional sources such as newspapers. Of course I would also consider a patient's own physician to be a traditional source of medical information, and so I agonize when I hear from patients whose doctors have not explained all the options.
While neither Mort nor I can offer medical advice, we agree that all patients with every type of illness deserve to know all treatments available to them. For lymphoma patients, RIT may or may not be one of those options, and only an oncologist, expert in the field of RIT, can make that determination. And clearly, many more people can benefit from RIT than are getting it.
I am very grateful to Alex Berenson, the reporter, and the Times for shining the light on this important issue. This one story has already introduced several people to an option about which they were not aware. And undoubtedly I heard from very few people who read it. It was, in fact, the most emailed article on Saturday and the 4th on Sunday.
Mr. Berenson did an outstanding job of explaining the difficulty that RIT has had in finding its rightful place among the array of treatment options. He points out that Bexxar and Zevalin have not been clinically proven to prolong survival compared to other therapies. That's because no head-to-head comparisons have been made, and the lack thereof provides a way to avoid RIT if oncologists are so inclined. What is known is that no single agent has produced the long-term durable remissions in patients nearly as well as RIT - and that has been clinically proven!
One final thought: survivors are happy to be alive! The photographer told me (and I assume the others) that the story was serious and he did not want me to smile. The serious picture is not me - I happily wear a playful smile most of the time - and that is exactly what I'm sending to each of you as I head the hospital this glorious Monday morning for my semi-annual CT scan!
Betsy
I have received an email from a blog reader in which she clearly and intelligently outlines the treatment options of her spouse's lymphoma. The writer ends with the expression that, regretfully, her thoughts are simplistic.
In no way were the comments simplistic. Rather, they were intelligent and insightful. In the same vein, I have noticed that, increasingly, lymphoma patients and their loved ones are asking smarter and more probing questions. This is very, very good.
The result will be that more and more lymphoma patients will receive radioimmunotherapy for their lymphomas.
Mort
Jane Brody, who frequently writes about health issues, wrote an excellent article about finding "Dr. Right" which was published on Tuesday in the New York Times. Jane makes excellent points, especially about second opinions, and so I encourage you to follow the link and read her story at:
http://www.nytimes.com/2007/07/10/health/10brod.html?_r=1&oref=slogin
Betsy
The questions from blog readers are increasing in both number and sophistication. For this, Betsy and I are most pleased.
I have just received a message from a lymphoma patient who is presently receiving chemotherapy for his disease. He enquires whether it is reasonable to shorten the chemotherapy and move to radioimmunotherapy (RIT).
In my opinion as a patient this is most reasonable. For, in the experimental clinical trial in which i participated, i received 3 cyles of CHOP plus rituxan followed by zevalin RIT. the short-term chemotherapy did not make me feel ill with the frequent adverse effects of this treatment. the zevalin caused me no ill-effects at all.
now, 4 years after zevalin, my pet scan is normal.
a superb question--thank you.
mort
In case any of you are following the 3 patients I mentioned in my entry on 6/25 - patients awaiting the results of their RIT treatments - Mort's last entry entitled "Hooray" provides the update for the second patient. We are thrilled that Bexxar succeeded again and that the patient avoided successive chemotherapy or a transplant - which she would have had if she had taken the course her doctor wanted her to take. Instead, she pursued RIT by consulting an expert at a university who then consulted with her local oncologist.
In my entry on 7/2, I mentioned a couple of executives who had tackled lymphoma the same way they tackled problems within their own companies. One is half way through treatment using a combination of fludarabine and Zevalin as front line therapy. The other was in the process of making a decision, and he has now made it: he enrolled in a clinical trial using Bexxar as front line therapy. The timing couldn't have been better because the trial closed last week, but after all the research he did and all the consultations he had with some of the top lymphoma experts in the country, he believes that RIT promises to give him the best chance for the longest, most durable remission. He'll have the treatment 4 to 6 weeks from now.
Finally, I suspect that RIT will be in the news again this week. A reporter for the NY Times is working on a story which could be published as early as today. I know about this because I was interviewed. I'll post a link to the story when it is published.
Happy Monday to all!
Betsy
I have just received a happy note from a non-Hodgkin's lymphoma patient. The patient had recurrent disease and was advised to undergo serial chemotherapy with stem cell transplant a highly likely intervention in the near future.
Through this blog the patient learned of radioimmunotherapy (RIT). Indeed, she received RIT several months ago.
Her message to me a few days ago: "Hooray". The PET scan is perfectly normal.
Another wonderful example of the efficacy of RIT without the need for serial cycles of chemotherapy or (tough) transplantation.
Mort
The National Comprehensive Cancer Network (NCCN) is an alliance of 21 of the world's leading cancer centers. For nearly every type of cancer, specialists from those 21 centers develop what is known as "NCCN Practice Guidelines For Oncology" which are recognized standards for clinical policy in the oncology community. Updated annually, these guidelines are based on the evaluation of data which is integrated with the expert judgment of a multidisciplinary panel of experts.
The 2007 edition of the Guidelines was published in June. It states that initial treatment for lymphoma requires consideration of many factors and thus treatment selection is highly individualized. It also lists the following options as "Suggested Treatment Regimens" for first line therapy:
R-CHOP
R-CVP
R-Fludarabine
R-FND (fludarabine, mitoxantrone, dexamethasone)
Rituxan
RIT
R-CHOP followed by RIT
For second-line and subsequent therapy, suggested treatment regimens are:
Autologous transplant
Allogeneic transplant (for highly selected patients)
Chemotherapy (same as first-line chemotherapies)
RIT
It is noted that RIT as front-line therapy is recommended in a clinical study. It is also noted that Rituxan maintenance therapy after first or second treatment is recommended in a clinical study as "no benefit in overall survival has been demonstrated." I found these notes particularly interesting since maintenance therapy has become so widespread and the use of RIT is so minimal.
So - how do you choose a treatment? Unfortunately, the options have never been compared to each other in a controlled scientific setting, but no study has yet demonstrated the results of RIT. Those studies indicate that RIT produces the longest, most durable remission periods in the greatest number of patients, especially when used earlier in treatment rather than later, i.e., after two or more failed chemotherapies.
While age, overall health and disease-specific factors will influence each individual's treatment, RIT is an option that is all too underutilized by the oncology community. If you think you may be a candidate for RIT, it would be well worth your time and energy to explore it as a possibility and to seek the advice of a hematologist/oncologist who is familiar with the treatment.
Betsy
I have just received a message from a patient who is newly diagnosed with lymphoma. She writes that she must now learn the "lingo" about her disease.
This is a most important comment, for lymphoma, like all other diseases, does indeed have its lingo or terminology. Lymphoma has many terms---to name a few, follicular and non-follicular; small cell and large cell and mantle cell. Then, there is chemotherapy and immunotherapy and radioimmunotherapy. And, on and on.
In our own small way, Betsy and I are delighted to assist you in learning lingo. Yet, I believe that our more contribution is that we may facilitate your asking the "right" questions, the important questions of your treating oncologist.
Through this blog, you are welcome to contact Betsy or me. We shall try our best to be helpful and supportive.
Mort
Last Thursday I said that I would write about the new treatment guidelines today, but other news preempts the subject til Thursday because you might find this more interesting.
I've just spoken with two relatively newly diagnosed patients. Like the rest of us, they were stunned by their diagnoses, but unlike most of us, they are well connected and have the means to seek medical treatment wherever they wish.
Immediately, both began to tackle the problem as they might tackle a major problem within their companies. They sought advice from experts. They learned about their options. They read every study they could get their hands on. They questioned their doctors' opinions and recommendations.
And you know what they learned? There is no universal agreement that one treatment or another is best. (The options will be Thursday's entry).
One doctor recommended R-CVP while another recommended Rituxan only. Still another recommended watch and wait and yet another suggested R-CHOP. Both patients asked about using RIT up front. One told me that his doctor was intrigued by the "amazing results" (the doctor's words) Bexxar had shown for front line treatment, but still recommended R-CHOP.
Ultimately, it came down to these patients making their own decisions. One is still in the information gathering phase. The other concluded that flurdabine followed by Zevalin would give him the best possible chance to achieve a long-term, durable remission and maybe even a cure. He's half way through treatment and still flying around the country running a company.
We could all learn from these men. When diagnosed, neither sat back and waited to be told what to do. Instead, both took action, learned all their options, and either made or are making decisions that feel right for them.
That's something we can all do. Though few of us are high-powered executives who have the means to do what these men did, we can participate in making our own treatment decisions. We can learn about our options and make our choices with which we are most comfortable.
Betsy
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