Targeted Information for
Patients With
Non-Hodgkins Lymphoma
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In the past week, and directly related to this blog, I have received several messages from readers who specifically ask for the names of physicians experienced in radioimmunotherapy (RIT) in their respective geographic areas.
This is great, for it promotes the vigor in the effort made by Betsy and myself to "spread the word" about RIT. Only through your steadfastness---indeed, your insistence---will you be able to learn from an expert whether RIT is appropriate for your lymphoma.
Based upon the comments of lymphoma specialists with whom I have spoken, it is distressing to learn of patients who receive, over and over again, cycles of chemotherapy or rituxan without the benefit of RIT consultation.
Happily, the pendulum is starting to swing toward RIT as an important agent in lymphoma therapy.
I am happy to respond to these enquiries and I shall help find the physicians.
Mort
When my husband Alex saw my bald head for the first time, he didn't blink an eye. Instead, he wrapped me in his arms and told me I looked beautiful. With tears in my eyes, I told him I love it when he lies, but my bald head was not beautiful. He argued back, "Oh, but it is. It means you are on the road to recovery. Don't worry about your hair - it will grow back. Without these drugs, your life won't."
That story was the farthest thing from my mind at a party a couple of weeks ago, but I was quickly reminded when a friend introduced us to a couple who was in the throes of cancer. The wife was about half way through chemotherapy, but I would never have known it had she not told me. She was probably in her mid to late 40's and strikingly beautiful. The wig was one of the best I have ever seen. We chatted for awhile and then continued to mingle.
Later in the evening, the woman's husband asked if he could speak with me privately and so we found a quiet corner. He proceeded to confide that he was devasted by his wife's illness. In fact, he said, he could barely stand to look at her without her wig. It takes a lot to make me speechless, but here was a stranger telling a cancer patient that he couldn't stand a bald head. I wanted to deck the guy!
Instead, I hoped that what he was trying to say was that he felt as helpless as my husband Alex did, and that his helplessness caused him to avoid reminders of the illness. I found Alex and asked him to join our conversation, and the two men talked for quite awhile about their common fears and anxieties. I was really proud of Alex. He helped this man identify his fears and put them into a perspective that would help both him and his wife.
The man's wife finally found the three of us and smilingly asked what we had been talking about. The man put his arm around her and told her how much he loved her, with or without her hair, and she grinned from ear to ear. She tracked me down several days later and said, "I don't know what your husband said to my husband, but whatever it was has certainly helped bring us closer together through this ordeal."
While my initial reaction to the man was disbelief that he was actually telling me he was having difficulty with baldness, his words were really a plea to talk with someone who had been through this, and I ultimately admired the fact that he was willing to open up. During cancer, the focus often stays on the patient, but it's important to recognize that co-patients share the emotional impact, and they, too, need a hand to help them carry their burdens. So to any co-patients who may be reading this, I encourage you to share you feelings.
Betsy
Betsy continues to write with sensitivity and passion about cancer and its effect on both the patient and family member.
Her vignette about baldness---her own, as well as that of a friend---secondary to chemotherapy is filled with emotion. Bald is indeed beautiful.
But, think.. Perhaps, if a patient with lymphoma could take radioimmunotherapy (RIT) with only a short course of chemotherapy, there would be no hair loss at all. My therapy for Stage IV non-Hodgkin's lymphoma consisted of Rituxan, 3 cycles of CHOP chemotherapy and, finally, RIT in the form of Zevalin.
I believe that I did not lose a single day of work---and did not lose any hair--due to the short chemotherapy regimen.
Yet, I agree... bald is beautiful.
Mort
The term "caregiver" is usually given to the person closest to the patient, but that term never seemed quite appropriate for my husband Alex. He did, in fact, give me more care than I could have asked for, but at the same time, he was struggling with fears of his own. I had the disease, but he certainly shared the emotional impact while at the same time managed most of the day-to-day responsibilities that I couldn't handle. "Co-patient" seemed a much more fitting description.
The following are random passages from my book about feelings he shared with me when I was writing it:
This takes places shortly after my diagnosis: "He immediately refused to indulge in what-ifs, and he saw the futility of expending energy on wishing that cancer wasn't here. It was, and so he consciously asked himself what he could do to mitigate the disruption in our lives....He resolved to stay focused on a positive outcome and to safeguard our optimistic attitudes - which he believed were absolutely critical to the ultimate goal of wellness."
Alex held on to that belief quite well until I landed in the hospital and had one complication after another. It was then that I wrote: "He recalled sitting in the darkness of my room, his resolve to stay positive and strong shattered by the avalanche of complications I was suffering. He feared the worst, tried to believe the best, and finally decided it would be best not to feel. Anything."
Of course Alex pulled himself together and was with me every step of the way. We have debated about who suffered more, and I still believe that he did. He disagrees, but I saw the agony and the fear in his eyes time and time again. He felt helpless to "fix" me, as he so eloquently says, and yet he did help in more ways than I could recount. I wrote this after it was all over: "Cancer had forced him into the demanding role of supporting someone who has a major illness, a role no one is ever prepared to play. And yet when I was diagnosed, he responded with every ounce of his energy, better than most people could have. He stopped his life many times in order to help me rescue mine...My emotional survival and ultimate recovery are as much his victories as they are mine."
And so I believe that the people who are closest to us share the emotional impact of cancer as much as we do. "Co-patient" just seems more appropriate and more personal than "caregiver." Today - and every day - this patient and co-patient give thanks to radioimmunotherapy for giving us the chance to live and laugh and love after cancer.
Betsy
In their messages blog readers have again emphasized to Betsy and me that lymphoma patients are not being appropriately advised about the role of radioimmunotherap (RIT) as a potential treatment.
This is more than disheartening to me; I am truly upset for I do believe that many lymphoma patients are being denied the effective RIT therapy. I do not offer a simple expression as a patient; my attitude is supported by many prominent oncologists.
I return to the bottom line and repeat my earlier declaration: "Power to the Patient". When a lymphoma patient is advised of potential therapy options, the patient must insist, indeed demand, a consultation with a physician who is experienced in administering RIT. Do not accept dismissive comments such as, "RIT is new" or "I'd like to see more data on RIT". RIT is not new; there is considerable and powerful data on the efficacy of RIT.
Dear fellow patient---you must be your own strongest advocate. The stakes are high; the benefit of your strong posiiton in demanding the RIT consultation will hopefully result in the same glorious result that I now enjoy.
Mort
Wow! Thanks to so many of you who have responded to the informal survey. For anyone who is new to the blog, please see the entry on October 19 for the questions - and please keep your answers coming! I'll continue to read them for the next couple of weeks and then post a summary. In the meantime, there were a few specific responses that I want to address.
A couple of readers asked what radioimmunotherapy is. Please see the posting on October 2 entitled "Mantle Cell Lymphoma." Don't let the title fool you - it's a brief description of RIT.
Another reader has asked his doctor about RIT but the doctor has not responded to the question. Instead, the doctor has recommended a bone marrow transplant. Please see my entry of June 5, "BMT versus RIT." I recently spoke to the gentlemen I wrote about in that posting. Four doctors recommended a bone marrow transplant. He asked every one of them about RIT. One told him that it was too new. RIT has been out for nearly four years and clinical trials date back 16 years. That's not new. Another told him that it would hurt his chances of being retreated. Studies have shown that patients have been successfully re-treated with RIT, chemo, stem cell and bone marrow transplants. The third doctor told him they didn't use it at their clinic and the fourth never acknowledged his question. The patient finally found an RIT expert and will take that as his next treatment, thus avoiding months of treatment and recovery and severe risks.
The point is that there are doctors who have not yet embraced radioimmunotherapy, and yet studies have shown that, for the amount of treatment time (1 week), it is the most effective treatment with the fewest side effects. On the other hand, a bone marrow transplant is lengthy, risky, and expensive, something I would not personally sign up for until I had at least spoken with a doctor who is willing to discuss radioimmunotherapy as a possible option.
On a different note, my husband and I are flying to south Florida on Wednesday to attend the radioimmunotherapy conference on Friday. We'll be gone for a week and I'll write the next two entries before I leave, but please continue to write responses to the survey and look for the summary when we return.
Betsy
I wish to remind all lymphoma patients, their caregivers and friends of the meeting entitled "Improving Patient Odds... The Role of Radioimmunotherapy for Treatment of Non-Hodgkin's Lymphoma.
This FREE MEETING AND LUNCHEON will be held at the Seminole Hard Rock Hotel in Hollywood, Florida. The meeting has 2 segments, one for physicians, the second for patients, caregivers and friends.
The patient/caregiver segment is from 9:30 AM to noon, followed by luncheon.
To register, go to www.iche.edu/fla06.
I urge as many as possible to attend what I think will be an outstanding meeting.
Mort
As we continue to write, it would be so helpful to know about your experiences and treatment with NHL, and so I'm hoping that all of you will take a few minutes to answer the following questions:
1. What was your diagnosis and when?
2. What treatments have you had?
3. Did your doctor mention radioimmunotherapy as an option? Did you ask about it?
I'm trying to get a sense of how radioimmunotherapy is conveyed to patients around the country, and only you can relay that - and so I would love to hear from all of you!
Thanks,
Betsy
I am pleased that so many blog readers have enquired of the names of physicians who are experienced in administering radioimmunotherapy (RIT) for non-Hodgkin's lymphoma patients.
This is most encouraging, for it expresses the movement of non-Hodgkin's lymphoma patients to assume more responsibility and, may I say, power, in their own care. I cannot overestimate the significance of this phenomenon. The more information that patients have about treatment options, the more likely they will make a good choice.
Dear fellow patients----spread the word; tell other lymphoma patients to insist on a consultation with a physician experienced in RIT
I have used this expression earlier, but it needs to be said again. "Power to the Patient".
Mort
A reader has asked how to find an RIT specialist in the Boston area. Dana Farber has a Lymphoma Program and I would start searching there.
Alternatively, you can call Biogen Idec and Glaxo Smith Kline customer service lines and ask for the names of physicians who are RIT specialists in the areas closest to you. We've posted these numbers in the past, but for quick reference, they are:
Biogen Idec: (866) 298-8433 for questions about Zevalin
Glaxo Smith Kline: (888) 825-5249 for questions about Bexxar
Betsy
In her beautifully poignant manner, Betsy has written of the well-intended, but often, cobbling, comments of friends during her difficult time in treatment.
Indeed, the attitude of the patient is vitally important during the period encompassing initial diagnosis, selection of therapy (or no active therapy) and treatment. For myself, I was steadfastly positive from the moment that I was told of diagnosis. I consciously did not allow a single negative thought to creep into my awareness.
Fortunately, my wife, Louise, had the same frame of mind. Indeed, we often made fun of my plight. We called our humor "KEMOCOMEDY". It was a delight to chuckle with one another.
Importantly, our attitude was contagious and, I believe, affected those caring for me--my treating oncologists, the nurses, the oncology social worker and the kind staff members in the treatment facility. Above all, I would like to think that our attitude was helpful to those other patients receiving therapy alongside me.
Mort
A couple of friends, who are currently undergoing treatment for cancers other than NHL, have raised a concern that is common to us all, and I want to share it with our readers. Both of them, as well as many others with whom I have talked, have wondered why some people continue to tell us how brave we are, how our great attitudes will pull us through, how great we look when we don't, or how we shouldn't worry because "new treatments are coming out all the time."
I've found that people who have never been through an illness like cancer have good intentions but often say things that hurt more than help. When people told me how brave I was, I always wanted to reply, "No, I've never done a brave thing in my life. If I had volunteered to have this disease for my husband or daughter, that would have been brave, but I didn't - and frankly, I'd rather be sucking my thumb."
As for attitude, I did have a good attitude most of the time, and I believe that it helped to cope with the emotional aspects of the illness, but still, when people told me that my great attitude was sure to pull me through, I always wanted to say, "So are you going to blame me if I don't make it?"
And I hated the insincerity of people who told me I looked great when I knew I didn't.
As for not worrying because new treatments are coming out all the time, that is a statement made by someone who has never, ever been around anyone with a life-threatening illness of any kind.
My friends asked me if it was normal to feel upset by questions or statements such as these, and I think it is, based on conversations with many people who have indicated that they felt the same sort of responses that I did. I do think that people have very good intentions and try their best to encourage us but few really know what to say - and so they sometimes say the "wrong" thing in their efforts to be encouraging. There is no guidebook for friends to know what and what not to say, so sometimes we simply have to be honest with our friends and tell them how we feel.
The friends I appreciated the most were the ones who never tried to convince me how great I looked when I was bald and puffy, who never told me how brave I was, who never told me what a great attitude I had - but told me in a million different ways, "This is a lousy thing you're going through, and I'm here to help carry the load."
Betsy
Blog readers are clearly aware of Betsy's clarity and passion in her blog entries.
I wish to inform blog readers of Betsy's book entitled "Roller Coaster Chronicles". This book describes Betsy's personal journey from symptom onset to her final victory over non-Hodgkin's lymphoma by taking radioimmunotherapy.
Her story is one that encompasses frightfulness, angst, excitement, anticipation, love and, above all, hope. It is worth reading.
I suggest that blog readers obtain the book from one's library. Alternatively, I am sure that it is available in book stores or through Amazon.
Mort
A reader has asked where is the best place for treatment, and I'd like to add a bit to Mort's reply. I agree that there is no "best place." There are many, many fine institutions around the country which provide cutting edge medical care. As both Mort and I have said many times, there are different philosophies on how to treat lymphoma, and that is because no single way has yet proven to be curative. Additionally, there are many different types of lymphoma which require different kinds of treatment. Other factors come into play such as location. If months of treatment are necessary, it may be difficult to travel long distances. All of this leaves us, as patients, wondering what to do.
I personally believe that the best thing we can do for ourselves is to research the specific type of lymphoma we have, but unless we are lymphoma specialists, we must be very careful not to assume that our research provides all the answers. Physicians are highly trained and skilled to treat our illnesses, and they have answers to questions most of us would never know to ask.
And so the "best place" is where you, the patient, are most comfortable - with your medical team, with the location, and with the treatment plan you and your physician develop.
Betsy
I have received many personal emails from blog readers who have told their stories of having dealt with lymphoma. In so many cases, the disease has, at times, been enmeshed in the pressing, tough, tangential issues that might be properly characterized as physician resistance to the patient's enquiry about radioimmunotherapy (RIT).
What are the reasons that an oncologist may resist the patient's interest in learning whether RIT is appropriate for him or her? I submit that there are several possible reasons. One, certainly, can be that the oncologist feels that RIT is contraindicated for the patient. A second may well be that the oncologist has not been educated---has not been enlightened---about RIT. And the third, sad to relate, may be that the oncologist does not want to lose the patient to another physician who does administer RIT.
For the non-Hodgkin's lymphoma patient, I suggest that it is no longer appropriate to think of the question, "why the resistance?". Why do I say this? For, I sense that patients now have a sense of empowerment, a sense of confidence, a sense of vital self-interest, to insist upon a consultation with a physician experienced in RIT.
Good for you, dear patient !
Power to the patient.
Mort
Several readers have asked for information about these two types of lymphoma. I'm afraid I don't know much about them, but I do know that Merck is coming out with a new drug for T-cell lymphoma. It's called Zolinza and should be out this month sometime. There seems to be a number of new drugs being studied for this as well and you could check them out on the FDA's clinical trial site.
There is also a new website about mantle cell lymphoma. You can reach it from the Lymphoma Research Foundation's site at www.lymphoma.org or go directly to it at www.mantlecelllymphoma.org.
As Mort has often said, we can't give medical advice, but we are here to support you and guide you, as best we can, toward finding the answers we all need when we are battling this disease. We are truly touched by your comments and often distressed that we can't do more.
Betsy
Very recent blog comments by our readers are so powerful, so poignant and, yes, so painful. Betsy and I have read and have been moved by your stories of advanced lymphoma muddied and muddled by, shall I say, non-medical issues.
We fully understand these issues. It seems that sometimes they can border on cruelty for the patient and family. The only answer is that we patients must be strong and persistent, even demanding. Patients must be informed of radioimmunotherapy and to learn whether it is appropriate for a given lymphoma patient.
And patients must become allies to one another. Betsy and I are your allies; we shall try to help as much as we can.
Mort
A reader has asked if RIT is the same thing as Bexxar and if it is used to treat mantle cell lymphoma. Yes, the words are confusing, so I'll first attempt to explain radioimmunotherapy (RIT) in a very simplistic way.
RIT is based on using man-made antibodies, called monoclonal antibodies. Antibodies are proteins which recognize, seek and mark foreign substances for destruction by calling other components of the body's immune system into action. In effect, this is what Rituxan does.
Radioimmunotherapy takes it a step further. Rather than relying solely on the antibody to seek and attach to foreign substances and hope that the body's own immune system would go into action to kill off the invaders, scientists attached a radioactive molecule to the antibody. This linking of radioactive material to monoclonal antibodies is known as radioimmunotherapy. It's effective because the antibody portion seeks and attaches to the cancerous cells and the radioactive portion plunges through them, killing them off.
We're all used to the word chemotherapy, which means that chemicals are used to treat cancer. Those chemicals have names most of us have heard - Vincristene, Adriamyacin, etc.
Radioimmunotherapy means that antibodies and radioactive materials are used instead of chemicals. There are currently two drugs approved for radioimmunotherapy treatment, and their names are Bexxar and Zevalin.
I hope this clears up the confusion.
RIT has been and is being currently tested in clinical trials for mantle cell lymphoma, as well as several other forms of the disease. From what I have read, I believe that its use has shown to be promising. I would definitely consult with a physician who is familiar with RIT because it may prove to be a valuable treatment option.
Good luck....
Betsy
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