Targeted Information for
Patients With
Non-Hodgkins Lymphoma
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« February 2007 |
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| April 2007 »
On two earlier occasions, I have written of a fellow non-Hodgkin's lymphoma patient, now a respected friend, living in the heartland of America who has had NHL resistant to two earlier cycles of chemotherapy. Resistant in the sense that the tumorous lymph nodes never disappeared after treatment cycle.
A few months ago he received Zevalin radioimmunotherapy---a few weeks later the enlarged lymphatous nodes were no longer felt.
And the good news continues---I just received an email telling me that a follow-up PET scan is completely clean. No evidence of lymphoma noted on this sensitive imaging study.
I love to hear such wonderful news.
Mort
I've been traveling for the past week and a half and happened to run into a wonderful lady who had just finished treatment with R-CHOP for follicular lymphoma. It was truly a chance meeting. I was encouraged to learn that her doctor had mentioned radioimmunotherapy as the next possible treatment when and if that becomes necessary, and I'm hoping that more and more doctors are beginning to incorporate RIT as the important treatment option that it is.
But - as Mort and I have repeatedly stated - please don't wait for your doctor to mention RIT. If you think you are a candidate for it, ask your oncologist about it and if he or she resists, ask a radiation oncologist or nuclear medicine physician about it.
There are simply too many patients who could benefit from this important treatment who aren't getting it. Please don't be one of them.
Betsy
For the many who have immensely benefited from radioimmunotherapy (RIT), I say, "Behave like you have lymphoma; act like you are cured".
What do I mean?
Be cognizant, be responsible in your behavior---sedulously follow your physician's instructions in follow-up; make sure certain documents are completed, e.g., health care surrogate designation---and so on.
But, act like you are cured. Do not think, "How long will the remission last? What is the data from the most recent study?". Acting like you are cured means that you enjoy each day, express optimism in full measure and look for ways to help others.
Having been in remission now nearly 4 years after Zevalin therapy for Stage IV non-Hodgkin's lymphoma, I certainly am acting like I am cured.
Mort
I received an email a few days ago from a man who wondered if I would be willing to chat with him. In his message, he told me that he had been treated for lymphoma a few years ago but that there is evidence that it is returning. He also told me that he was trying to adjust to the idea that it has come back, and he wondered if I would be willing to chat with him. Of course, I said, and so we talked by phone.
As it turns out, the man told me he had found me over a year ago and had put my email address on a sticky note that had been attached to his computer all that time. During that time, he didn't want to "bother" me or worry his family...and so he stoically kept his fears to himself. As his fears grew, he finally decided to reach out. We talked for over an hour and when he realized that his fears were normal when faced with cancer, they seemed less threatening. He repeatedly told me how good it felt to talk to someone who truly understands.
I know that every one of us handles our emotions differently and we reach out to others when we're ready. But this particular call made me wonder if any of you are holding back. If so, let me assure you that Mort and I are here to help you in any way we can. While we can't give you medical advice, we offer our hands to walk with you through this journey.
So please know that you are not alone and ask us whatever questions you wish. We are here for you.
Betsy
I have been contacted by a young man who has just been diagnosed with lung cancer. He inquires whether radioimmunotherapy (RIT) has any potential role in his therapy.
I have never heard of RIT being used to treat this malignancy. Always, ask the treating oncologist about the potential applicability of RIT in non-lymphoma malignancy.
On the other hand, I have learned that RIT is being investigated in the treatment of patients with certain types of primary brain malignancies.
Patient interest in RIT will continue to prod investigators to search for widening application of radioimmunotherapy.
Mort
Much has been written about the mind/body connection. I happen to believe that the connection is powerful, and I'm happy to see that belief gaining widespread acceptance even among Western doctors who have traditionally relied on scientic "proof."
There was a recent article about this very subject which states it far better than I could and so I'll send you from here to http://webmd.com/solutions/complementary-care/fighting-cancer
Enjoy!
Betsy
Approximately two months ago, through this blog, I learned of a non-Hodgkin's lymphoma patient with recurrent disease who was searching for a therapeutic plan.
Enlisting Betsy's assistance in facilitating an appropriate consultation, she will receive radioimmunotherapy-RIT (Zevalin) this week.
This nice lady is most comfortable with her decision to receive RIT and is entirely optimistic. She has expressed sincere gratitude and appreciation to Betsy and me for our efforts.
Betsy and I are so pleased; indeed, so very satisfied, to assist a fellow patient. We are the ones who are grateful, for it is so very enriching to help another person.
Mort
Mort and I have written extensively about different philosophies in the treatment of lymphoma and why it's important to become your own best advocate. Jerome Groopman, M.D., has a new and insightful book entitled "How Doctors Think." National Public Radio aired an excerpt last week which you can read at http://www.npr.org/templates/story/story.php?storyId=8892053.
I'll keep this entry short so that you'll have time to read the NPR story - it's well worth it.
Betsy
I am confident that this blog is serving a most important function: to inform lymphoma patients of radioimmunotherapy (RIT), a most valuable, yet underutilized, modality in therapy.
Through this blog Betsy and I are receiving many communications from lymphoma patients asking us very technical, yet imperatively important, medical questions. Alas, we are not oncologists; yet, we are trying our best to direct you, the patient, to the answer that you seek.
We are busy in this effort to assist you, to facilitate your pathway to therapy, and to help assuage your anxiety.
It is a privilege to try to be helpful to you; so, keep us busy.
Mort
A lymphoma diagnosis sends an avalanche of emotions into our lives. Suddenly we're surrounded by strangers who are asking us to make decisions without our fully understanding the consequences. Worse, cancer has its own language that most of us don't understand, at least in the beginning. All of this is frightening and overwhelming, and yet in the midst of it all, we must remember one thing: each of us cares about our own survival more than anyone else. And so we must become own best advocates. That's not always easy, but it's a part of this illness that we need to understand.
In order to advocate for ourselves, we must be clear about our goals. And that, of course, requires obtaining enough information to set goals. We need to understand that different doctors in different parts of the country have different philosophies on what’s "best," and there may be more than one type of treatment that’s "best" for you. Keeping up with information can be challenging, but it’s important to understand ALL the options you may have and then to decide what option is most comfortable for you, even if others challenge your decision.
Having the disease and being your own advocate consumes a lot of emotional energy, and it’s also important to take a mental break every so often. Do what you love - go golfing, go fishing, have a manicure or a massage - or whatever it is that you love to do. At least mentally, go wherever you can to find rest from cancer, and yes, I know how hard that is, but it’s important to strike that balance.
Most of all, understand ALL your options before setting your goals and never be afraid to ask questions. Your life depends on it.
Betsy
A few days ago, a most distinguished colleague who is an expert in nuclear medicine called me to relate that a lymphoma patient had directly contacted him for a consultation concerning radiotherapy (RIT). This was the first time that this had occurred in his practice. (He further went on to lament that medical oncologists seem very reluctant to refer patients to experts in radioimmunotherapy, namely nuclear medicine physicians and radiation oncologists.)
The news that a patient directly sought RIT consultation is heartening. Betsy and I are trying zealously to encourage lymphoma patients to insist upon a consultation with a RIT expert, not simply waiting for the medical oncologist to suggest this most valuable therapy.
Not yet an avalanche, indeed, but a wee step in the right direction.
Dear patient, demand a consultation with a RIT expert to learn whether this therapy is appropriate for you.
Mort
A couple of weeks ago I spoke with a gentlemen who lives half way across the country. He’s relapsed within a few months of taking CHOP plus Rituxan. His doctor is recommending a bone marrow transplant and his insurance has graciously spent over $75,000 in search of a donor. When he asked his doctor about RIT, the doctor told him that RIT would not be a good option because his remission period had been so short.
I’ve heard this "reason" before, although I prefer the term "excuse." There is no evidence whatsoever that short rermission periods after ANY other type of treatment will preclude RIT from working well. In my own case, I never had the luxury of even a day’s remission. My disease was refractory to both CVP and CHOP with Rituxan and I never finished either treatment before my disease returned. Now, four and a half years later, I’m living proof that remission periods don’t predict RIT’s effectiveness.
As a footnote, my entire RIT treatment cost just around $37,000 - half of what this man’s insurance company has already spent on just looking for a donor - and that’s before the treatment has even started! I sometimes wonder why our health care premiums keep rising!
Betsy
Having practiced medicine for many years, I am keenly aware of the pitfalls in using abbreviations and acronyms.
However, I just learned how "RIT" can be confusing. In my blog entries, I always write "radioimmunotherapy (RIT" so that the reader clearly knows what the acronym means.
I just read of a patient having received "CHOP + rit". In this case, the "rit" stood for Rituxan, NOT RADIOIMMUNOTHERAPY.
We must ever be vigilant when we see abbreviations and acronyms.
Mort
For those of us who have had or do have lymphoma, it’s so easy to forget that we need to pay attention to our whole bodies. I’m as guilty of this as anyone, but just this past week, Susan Snyder, who is a colleague of mine and a lovely lady, reminded me. Susan is a colorectal cancer survivor who actively shares her story with others in an effort to encourage people to get tested.
What we call cancer is actually a group of over 100 diseases but there are tests for only a handful. A colonoscopy can find pre-cancerous polyps which can be removed during the procedure - and that prevents colorectal cancer. The test saves lives, and it is strongly recommended for anyone over 50. Your doctor can order the test simply by asking.
We’ve all heard horror stories about the procedure, but they simply aren’t true. My husband balked all the way to his colonoscopy. When it was over, he worked the rest of the day and felt pretty silly for anticipating the worst. None of you know him, but believe me when I tell you he’s the world’s biggest chicken - and if he says it was nothing, it was nothing!
So my thanks to Susan for reminding me that just because I’ve had one kind of cancer doesn’t make me immune to others. Lymphoma was enough...I’ll take any test that might prevent another kind of cancer, wouldn’t you?
Betsy
I have often heard fellow lymphoma patients tell me that they are in the troubling position of having to choose between radioimmunotherapy (RIT) and transplantation as their therapy.
I am not an oncologist, but I have a suggestion that has worked admirably for two friends who faced this troubling issue. The patients both chose RIT in the form of Zevalin. BUT, prior to the Zevalin treatment, the patients had stem cells harvested for storage in case a future transplant became necessary.
Both patients have done just fine with the RIT. Saving stem cells "just in case" gave them a sense of reassurance.
I suggest you discuss this subject with your oncologist if you are in the therapeutic quandry between RIT and transplantation.
Mort
First, my apologies for posting this entry later than usual. Our power went out last night and I'd procrastinated.
So - someone had recently asked me the meaning of follicular and I wasn't able to give a good definition. Coincidentally Karl Schwartz, President of Patients Against Lymphoma, recently posted the following quote:
The term follicular is given to the type of cell. Each type of lymphoma has a cell of origin - the normal cell from which the abnormal cell developed. Lymphocytes are a family of cells that help fight infection. There are many types of lymphocytes with different jobs and assignments within the body. The main categories are b-cells and t-cells. Follicular lymphomas are of the b-cell type.
Normal follicular b-lymphocytes are found in a compartment of lymph nodes located within the geminal center, which is why they are sometimes called germinal center cells.
This is just scratching the surface but the main point is that a type of cancer is defined by the cell of origin.
More on this at www.cancer.gov/cancertopics/understandingcancer/immunesystem/Slide8.
Betsy
A blog reader has written of a family member who has recurrent follicular non-Hodgkin's lymphoma after having received Rituxan-CHOP. (This is a very common initial therapy for follicular non-Hodgkin's lymphoma.)
In my personal judgement as a patient, this appears to be the perfect place to consider radioimmunotherapy (RIT). The medical oncologist commonly will recommend another series of Rituxan-CHOP in this case or may now opt for maintenance Rituxan therapy.
This is the time for the patient to inisist upon a consultation with a physician experienced in RIT !
RIT has the proven effectiveness and, overall, the cost of RIT is no greater than the cost of recurrent series of chemotherapy and Rituxan---not even considering the "cost" in terms of adverse effects of medicine and potential lost time from work.
Mort
A Canadian blog reader has asked if RIT is available in her country. The answer is yes. Canadian patients can call the same toll-free numbers for Bexxar and Zevalin that are used in the States, and they'll be directed to centers nearest to them.
I also recently heard from someone in Greece who asked about RIT. I wouldn't have known whether it was available there except that I have a friend who now lives in Ann Arbor but who grew up in Athens where her mother still lives, and the mother has NHL. We found out that RIT is available in Greece.
Additionally, studies on RIT are being conducted at various centers in Europe.
So to our readers living outside the States, I would say the same thing as I would to those living in the States - ask, ask, ask about RIT if you think you are a candidate. And if you are having trouble finding a physician who uses it, don't hesitate to let us know and we will do our best to help.
Betsy
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