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Today is my birthday. My odometer rolls over to 57 - and that's hard to believe. I still feel 25!
If you read my last entry, you know that 5 years ago, I was unsure whether I'd ever have another birthday. Back then, I'll never forgot running into someone who knew how ill I was but who nonetheless had the audacity to complain that her upcoming 50th birthday reminded her that she was aging - as if that was a bad thing! I bit my tongue as I thought, "I'll bet anyone in a cemetery would trade places with you."
I've never worried about my age. It's only a number, and as new RIT data emerges and older RIT data matures, I'm confident that my number will soar higher. I'm confident that I have every chance to live to a ripe old age and succumb to natural causes. In the meantime, I plan to make the most of every minute.
I'm reminded of a cartoon in which Charlie Brown says, "Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why they call it the present."
Today I am alive to share my life with family and friends. Indeed, the present is the best gift of all and RIT was the gift that gave me the present.
Betsy
My wife, Louise, and I very recently went abroad on vacation. In the aircraft, I was seated next to a lady--a complete stranger--over the Pacific Ocean. She obviously noted the medical symbol on the handbag lying on my lap, for she started telling me of her best friend being. ill.
The illness? Stage IV non-Hodgkin's lymphoma. Needless, to say, I immediately asked of her treatment and her present status. The discussion, naturally, moved directly to radioimmunotherapy (RIT) and its action, its specificity and its effectiveness.
I offered to speak to the friend and to tell her of my wonderful response to RIT.
Now that Louise and I are back home, I expect a call from Hong Kong at any moment.
Mort
On Memorial Day five years ago, I was released from the hospital after being "incarcerated" for ten days in what I then called Hotel Hell. I didn't call it that because anyone treated me badly. I called it that because I didn't want to be there. Because life was going on outside the walls without me. And because I was scared.
This ten day incarceration followed only two days of freedom. I'd been admitted earlier because chemo had knocked out my neutrophils and caused a serious infection. My longer stay commenced with a fever and severe pain in my midsection. Complications everyone hopes to avoid went from bad to worse. The pain turned out to be an infarct, the death of part of my spleen, and I feared that my body had decided I deserved a slow death and would kill me one part at a time.
Pneumonia then set in and oxygen was added to my daily routine. The tubes in my nose were reminders that I could no longer accomplish the feat of breathing on my own. My fear increased.
The CVP which I'd been taking wasn't working and the doctor turned to R-CHOP for help. Within 24 hours, CHOP had slaughtered cells faster than my kidneys could get rid of the waste. Renal failure followed.
See why I called it Hotel Hell?
When I left the hospital that Memorial Day, I was weak as a kitten and emotionally drained. Following is part of the last paragraph from the chapter in my book called, appropriately, "Hotel Hell:"
"I'd endured ten days of boredom, punctuated by fear and self-pity. I'd wondered if I would ever reclaim my ordinary life. Did I dare to expect CHOP to succeed? And a future? I wasn't even sure I'd be around to wear the summer sandals I'd bought on sale the previous winter. My confidence in everything had fallen to zero. I knew I was lucky to leave the hospital in one piece. I'd had no surgery or any other far worse procedure. My body was intact, but the rest of me felt like I had been mortally wounded."
I share this with all of you to let you know that I understand the overwhelming fear and frustration that accompanies disease and chemo-related complications. While I pray that none of you have to endure them, I also hope that - if you do - you will hold on to the thought that complications are usually temporary and that you have every reason to believe that you will get through them.
Not everyone experiences the chemo-related complications that I did, but they are a real possiblity. I could have avoided them if RIT had been available when CVP stopped working. But that was 2002 and both drugs were under FDA review and thus unavailable. R-CHOP, which I started in May, did nothing more than deprive me of my hair and cause additional complications. The good news is that it bought me time. By August, when my disease came roaring back after the 5th treatment, RIT had just become available. For me, it was available in the nick of time.
After months of failed treatments and complications, I was amazed by how easy and fast RIT was to take. There were no side effects, no complications - and it worked!
Today, no one needs to endure successive chemotherapy treatments as I did. RIT is FDA approved as a second line treatment and should be offered as an option to relapsing patients who could potentially benefit from it.
Hope all of you are enjoying this long Memorial Day weekend. I'm saying a prayer for all who have and are serving our country.
Betsy
It is so heartening to see the number of journal / newspaper articles that have just been published on the subject of radioimmunotherapy (RIT). The articles are noting the medical benefit of RIT as well as illustrating the issues that have inhibited its administration to lymphoma patients.
Yes, the "word" is spreading. I predict that the word will expand, will burgeon into a resounding message that will elevate RIT to its proper role in treatment of lymphoma patients.
Betsy and I are pleased that, in some small way, we have helped in spreading the "word".
Mort
As we travel the path from diagnosis to treatment - and even beyond - it is so encouraging to hear of others who have gone before us and regained healthy lives. For that reason, I envisioned writing a piece for all of you which I would call "The Faces of RIT." I wanted to share individual stories with photos of the people who shared them. Several people agreed and sent me their stories, but due to legal issues, I can't post them in exactly the format I had hoped to.
In the next couple of weeks, I will be sharing three excellent stories minus the photos but I'll have to omit the last names of two people - but there is one name I can use because you could find it yourself on the Internet if you looked.
Jamie Reno, an award-winning journalist with Newsweek magazine and also an acclaimed singer-songwriter, was diagnosed with Stage IV follicular non-Hodgkin's lymphoma in 1996. He went through a very difficult chemotherapy treatment in early 1997, and when the cancer returned in 1999, instead of doing another chemo regime, as his oncologist recommended, he chose to participate in a clinical trial of a new cancer drug called Bexxar. Jamie has been in remission ever since.
"I'm pretty confident that if I had gone ahead with another chemo treatment and not done the radioimmunotherapy, I would not be alive today," says Jamie, who could have simply regained his health and closed the door on cancer. Instead, he attaches all his national music projects to lymphoma cancer and awareness causes.
Additionally, Jamie is currently writing "Hope Begins In The Dark," a book in which he is profiling 50 survivors of various types of non-Hodgkin's and Hodgkin's lymphoma to be published in August 2007. Jamie's website is www.jamiereno.com.
I thank Jamie for allowing me to share his story with all of you and for his passion in reaching out to those who are touched by our common enemy. Jamie's work provides comfort, guidance and - most especially - hope. And there are plenty of reasons for hope - new and better treatments and people like Jamie who have been healthy for 8 years and longer.
Wishing all of you a happy, hopeful day,
Betsy
On April 10 I posted an entry entitled "You can get busy living...". On April 14, I received a phone call from a lymphoma patient whom I had met at the lymphoma-radioimmunotherapy eductional meeting held last October in Hollywood, Fl.
The fellow lymphoma patient told me of his recurrent disease; that he refused to accept more CHOP therapy. Rather, he decided to receive Zevalin radioimmunotherapy. He then told me, to our common delight, that he had a rapid and efficacious response to that therapy.
Good news on radioimmunotherapy continues.
Mort
Many of our readers have completed treatment and - like Mort and myself - have had to learn how to find our way back to our normal lives. But what is normal? Life itself is ever-changing in ways big and small. No matter what paths our lives take, we can never go back, but we can go forward. Cancer gives us the opportunity to prioritize, to let go of what's unimportant and to focus on what is.
Last week I talked with a fellow "graduate" who has been out of treatment for about a year. Physically, the doctors tell him he's in remission. He's turned the noun into a verb and then hyphenated and redefined it "re-mission," meaning that he has been given a second chance for a new mission in life. What a terrific perspective!
No matter the stage of our illness - whether newly diagnosed or long out of treatment - we all have dreams, big and small, to pursue. Cancer reminds us not to procrastinate. Some of us will find ourselves hurrying faster while others of us will find ourselves slowing down. Whatever pace is comfortable, we can all find a purpose and a passion.
Shortly after I completed treatment, at a time when we didn't know how long or how well it would work, I wrote the following:
"Cancer leaves me living in two time zones simultaneously. I reside in real time where I have responsibilities and I care about things big and small, from work to washing the floors. In real time, I sometimes get irritated that the demands of the moment grab my attention, change my schedule, and expect me to make instant decisions and responses when I would prefer to savor the moment, to slow down life a bit. But I also live in lymphoma time where a sense of urgency cries out, "Someday is now. Hurry up." In real time, I wish I'd had dry rot. Or chiggers. Or a yeast infection. I wish God would ban cancer and every other disease. But the lymphoma zone leaves little time to wish for that which I cannot change or even to spend much energy worrying about the outcome of my illness. The outcome of my life seems far more significant."
Now, nearly five years later, I still believe those words I wrote. My life has taken turns I would never have expected. Some have been wonderful. Others have been challenging. But that's life, and I am thankful for every breath that I take. And I thank you, my friend, for reminding me to stay focused on "re-missioning!"
Betsy
It is now 4 years, 3 months since my initial diagnosis of follicular, non-Hodgkin's lymphoma, Stage IV.
I have learned much in this time. Arguably, the most important fact that I have learned is that malignant disease is the great "equalizer". No matter what our station in life---monetary assets, education, celebrity---cancer visits all of us.
I can never forget the many sessions in which I received infusions of Rituxan and then CHOP, all preliminary to my Zevalin radioimmunotherapy treatment. During the 4 months of therapy I generally saw the same fellow-patients every week. There were young women in their 30's; there was the man in his bib overalls who told me that he tilled the soil for his livelihood; there was the entrepreneur with adornments of wealth. And, then there were Mort and Louise; Louise, my dear wife, always at my side during the treatments.
Our common plight brought us close together. Remarkably, in such a short time we learned so much about one another.
So interesting, so important to recognize that in the treatment room were were all equal.
Mort
A quick reminder: Tomorrow is the teleconference about radioimmunotherapy (see the entry on May 14). It's not too late to register by phone and this is a wonderful opportunity to learn about RIT and to ask questions of some experts.
Now, for the heart of this entry....The recent articles that we've posted about RIT (in the Journal of the National Cancer Institute, the Lymphoma Research Foundation newsletter, and the AP story) have made reference to the role that licensing requirements play in the underutilization of the treatment. That role is more significant than most of us realize and it's a big reason why 90% to 95% of the patients who might benefit from RIT aren't getting it.
Because Bexxar and Zevalin contain minute radioactive components, the drugs are regulated by the Nuclear Regulatory Commission (NRC) which requires that oncologists take 700 hours of training in order to be licensed to prescribe the drugs. That's the equivalent of 17-1/2 forty-hour work weeks, and what oncologist has that amount of time to devote to obtaining a license to prescribe any drug?
Curiously, endocrinologists, who treat patients with thyroid disease, are required to take only 80 hours of training in order to prescribe radioactive iodine in much higher doses than that which is found in Bexxar.
NRC's requirement means that few oncologists are licensed to prescribe RIT. Combined with the reimbursement issues that preclude oncologists for billing for RIT, the restrictive licensing requirement further limits patient access to the treatment - despite the fact that numerous studies have shown RIT to be the most effective single agent available.
This requirement could change. There is a petition before the Nuclear Regulatory Commission which, if approved, would reduce the training time for oncologists to prescribe RIT to that which is required for endocrinologists. It would also allow oncologists to be reimbursed for prescribing RIT. If approved, this would undoubtedly give many more patients access to this effective treatment, but until it is, patients who may be candidates for RIT will have to find oncologists who are licensed to prescribe it.
You can view the petition at http://ruleforum.llnl.gov/cgi-bin/rulemake?source=prm3519&st=petitions-a. You can also submit a comment to the NRC. To date, comments are mostly from physicians but my husband submitted a letter because we believe that it is important to let the NRC hear from patients and their families as well. We must let the NRC know that regulatory oversight must be fair and consistent so that ALL patients will have equal access to ALL treatments, old and new. The NRC has verified receipt of his letter but has not yet posted it as of the time I am writing this entry.
It is disturbing to think that patients with any illness would not be offered every available treatment option, and as patients, we shouldn't have to consider the role that reimbursement and licensing plays, yet we must recognize these influences in order to make the best decisions for ourselves.
Betsy
Betsy has written of a current effort in medical education to infuse medical students with the "human" element in illness, not dealing with disease as a sterile complex of symptoms, physical examination abnormalities and treatment.
I have now been teaching medical students and physician assistant students for nearly 4 decades. I have always taught them that the most important element in medical care is a caring attitude.
Now, as a non-Hodgkin's lymphoma patient/survivor, I am keenly aware of the attitude of my physicians and their important staff members.
I would like to think that my small efforts to assist fellow lymphoma patients is part of my ingrained sense of caring.
Mort
Mark your calendars for Friday, May 18 at 1:30 (EST). Cancer Care is presenting a telephone education workshop entitled "Current Perspectives on Radioimmunotherapy for Non-Hodgkins' Lymphoma." The workshop is free but you need to register online at www.cancercare.org.
The workshop will address the basics of RIT, the latest RIT research, open clinical trials, and communicating with your health care team.
This last subject - communicating with your health care team - raises a point I'd like to address and "team" is the key word. While we have been discussing some of the reasons why RIT is underutilized and why it's important to be your own best advocate, I want to make it perfectly clear that you and your oncologist head the team.
If you think you might be a candidate for RIT and your oncologist has not discussed it with you, by all means ask him or her about it. If you don't find a satisfactory answer and you want to pursue this option, you may have to seek an appointment with a hematologist/oncologist rather than a general oncologist.
It's important to remember that your oncologist is the one who manages your day-to-day care. It is your oncologist who, with you, decides which treatment option is best, and if radioimmunotherapy is chosen, then your oncologist will refer you to a radiation oncologist or nuclear medicine physician whose only role is to administer the treatment. After RIT, your follow-up care falls back into the hands of your oncologist. Therefore, it's important to assemble the right team - you and an oncologist experienced with RIT.
There is one more point to clarify. If your local oncologist is unfamiliar with RIT, you have every right to ask him or her to refer you to an oncologist who is. Most doctors don't mind helping you achieve your goals and will usually try to help you find someone. If not, you can contact us and we will try to help you locate a specialist.
Usually, you can visit the specialist once and he or she will then coordinate with your local oncologist. Normally, you can have the treatment at the facility closest to you. The point is that if you decide to see a specialist half way across the country, that doesn't mean that you have to have the treatment half way across the country. You can usually have it at the treatment center closest to you - and to my knowledge, there is at least one, and usually more, in every state.
Betsy
I am pleased to find that non-physician health professionals are showing an increasing interest in radioimmunotherapy (RIT). Nurses, physical therapists and nurses, who play a most important role in health care, are having educational programs on the subject of RIT.
To me, this is most welcome news. These health care providers ( I do not like this awkward term) have frequent, close contact with lymphoma patients and are in a position to gently ask whether the patient is aware of RIT as a possible treatment.
Thus, these valuable workers can educate the lymphoma patient about RIT and the advisability of getting a medical opinion from a physician who is experienced in RIT, namely, a radiation oncologist or nuclear medicine physician.
Mort
Earlier this week, I read an interesting entry posted on another lymphoma group and then contacted the writer to ask permission to share it. She wrote that her mother was diagnosed with stage IV mantel cell lymphoma in October 2006. Her mom and dad visited several institutions where the only option they were given was R-CHOP with or without Velcade. At 72, her mother made the decision that she would rather live whatever life she had rather than undergo chemotherapy and its side effects.
In December, the entire family was in Florida trying, as she put it, "to deal with the whole cancer and family support thing when I googled mantel cell AGAIN." This time new reports about Zevalin and Bexxar came up as well as this blog. The family ultimately found an oncologist and radiologist who agreed to use RIT off label as a first line treatment.
It has been 8 weeks and the PET scan shows more than 75% disappearance with only a few hot spots that are continuing to decrease.
This is a heartening story, but the most important message for readers is the writer's last statement: "My mom is thrilled - but we found the choice. RIT was never mentioned at any time at the other facilities by any of the other doctors or research clinics. You are your own best advocate with your family."
How very true....you are indeed your own best advocate.
I wish "Mom" many more healthy years and many more Decembers in Florida with her very obviously loving family!
Betsy
In her April 19 entry Betsy posted a blog entitled "Excuses, excuses" in which she wrote of a transplant physician who told a patient that she was a good candidate for radioimmunotherapy (RIT) but that she would be back in 2 years.
Indeed, this is, to me, not only mean-spirited, but may well be totally incorrect. Many patients who have received radioimmunotherapy, even for advanced stage IV disease, have continuing remission for years and years. Dare I say cure?
I like to combine, collate and synthesize thoughts. Radioimmunotherapy, unfortunately, is continually attacked by those who use a combination of strategies---one is excuses ("we need more data"); one is mean-spiritedness ("you'll be back in two years") and the last is ignorance in which the physician is not fully educated about RIT.
Why this, seemingly, concerted attack against RIT?
Mort
First, congratulations to Mort on his anniversary! He has posted his entries for the next several days because he and his lovely wife are traveling - something that RIT gave them the chance to do!
Second, I'm happy to report that several people have let me know that they plan to take the LRF Newsletter (posted on April 30) to their oncologists. It's great information to begin a discussion. If you missed it, please read the entry on that date.
Finally, I'm also happy to report that one of our readers avoided a stem cell transplant which his doctor had recommended but which he wanted to avoid if at all possible. Months of risky treatment and recovery were not appealing if there were an alternative. After a great deal of persistent self-advocacy, he took the test dose of Bexxar last week and will complete the treatment this week. I suspect he will be back to work in a matter of days, and with all my heart I wish him all the best as he completes his treatment - in a week, not months!
Betsy
Yesterday, May 3, marks the 4th anniversary of my having received Zevalin radioimmunotherapy in an experimental clinical trial. I received Zevalin as first-line (front-line) therapy meaning that I had not been given any previous treatment regimen.
All my sophisticated tests in follow-up are normal.
I feel robustly well. I have confidence for I know that I attacked the Stage IV non-Hodgkin's lymphoma as early and as hard as I could. This confidence enables me to awaken each morning filled with energy and a hope that I can help another person in some small way.
A happy anniversary, indeed.
Mort
RIT is getting lots of attention these days! First there was the article in the Journal of the National Cancer Institute on April 4. (See the entry on on April 12 to read it in its entirity). Then there was April's Lymphoma Research Foundation's Newsletter which I wrote about in my last entry. You can now view the article in its entirity at http://groups.yahoo.com/group/nhl-info/files/LRF%20RIT%20Story%20April%202007.pdf.
And this past Monday, the Associated Press published a story about RIT. You can view it at
http://hosted.ap.org/dynamic/stories/H/HEALTHBEAT_LYMPHOMA_DRUGS?SITE=AP&SECTION=HOME&TEMPLATE=DEFAULT&CTIME=2007-04-30-17-05-15
All three of these articles have a common theme: that RIT is underutilized. I'll discuss more about the reasons in my next entry. For now, I hope that you will take the time to read these articles. They could be very helpful in making treatment decisions.
Betsy
A positron emission tomography (PET) scan is an important imaging test that is commonly used in follow-up of the lymphoma patient to assess the response to therapy. Recurrent lymphoma tumor causes the image on the scan to be abnormal. (Additionally, PET scans are also used in evaluation of other diseases, e.g., heart disease.)
What I wish to bring to your attention is that the PET scan is very important, indeed, very valuable, but is so sensitive that it can produce a "false positive" result. False positive means that the PET scan image is abnormal, but there is NO lymphoma tumor present. A false positive image may be the result of an insignificant infection (or, at times, a more important infection).
The "bottom line"---if you have a PET scan report that is considered abnormal, do not become immediately alarmed, but rather, speak with your physician whether the scan report might be a false positive finding.
Mort
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