We're used to having a doctor tell us "the answer," and not just put a bunch of options in front of us to let us choose from. If you have a sinus infection, they don't say you could take amoxicillin or Cipro, and here are the differences; they basically pick one for you, and tell you why. They write the prescription, and off you go.
The treatment decision for WM wasn't anything like that. I felt that the doctors would lay out a spectrum of possible treatments, point toward one, and then go to great lengths to push the decision back to me. At first, it seemed almost like a guessing game: what question should I ask to get him to make a strong recommendation? Should the first one he pointed to be the one to pick? I guess it's because much less is known about the disease than is known about sinus infections, and that none of the treatment options is a sure thing. It's not a sure thing that amoxicillin will knock out your sinus infection either, but it's a pretty good bet, and if it doesn't work, the Cipro is almost sure to work. (Unless, of course, you've got one of the new "super" bugs.)
So this led to an emotional see-saw ride over the last few weeks. At first, after consulting with the Bing team at DFCI, I was leaning toward the trial. A few days later, the nurse-practitioner called with my lab results, and told me that I was well qualified for the trial. So I decided the trial was the right thing. But then Dr. Treon called me that same night, and said that I should strongly consider the Velcade/Dex/Rituxan chemotherapy, because of the level of marrow invasion. I talked to my family doctor, and then to my hematologist, and made up my mind: the chemotherapy was the right way to go.
Over the next few days, I started reading some scary things about the side effects of the chemo. I stayed the course, though: it was important to make a decision and move forward. My hematologist chipped away at my resolve by saying that he would support the trial, but I remained steadfast.
Finally (at least I hope it's final), Dr. Treon called again to ask me to reconsider the trial. He had some new information that made it sound like it might be a better option after all. So now I changed my mind again, and am headed for the trial.
Did I say emotional see-saw? More like a roller coaster. I told both doctors - Dr. Treon in Boston and my local hematologist - about my feelings. They said that with cancer, they believe that it needs to be a joint, informed decision. As more information became available over the last few weeks, the decision parameters changed, and it was up to me to choose the path. But even though I've learned a lot over the last month, I'm still a neophyte compared to either of the doctors.
Friday, May 28, 2010
Back to Boston
Last Thursday, just over a week ago, I was all set to start the Velcade/dex/Rituxan treatment. I just wanted to have my local hematologist finalize how he would work with Dr. Treon. For whatever reason, they weren't able to get in touch right away. Dr. Treon was away on Thursday, but he always has his cell phone, so it seemed strange that, by Tuesday, they still hadn't talked. So the hematologist called me on Tuesday to say he hadn't heard anything. He emphasized that it was important to get some treatment started, whether it was the Velcade or the RAD001 trial. This was after I had decided, with his concurrence, that the Velcade treatment was probably the best bet. So now I was confused again: why did he mention the trial option? But after thinking about it, I decided to stick with my decision. After all, Dr. Treon, the expert, seemed to be leaning in that direction.
Meanwhile, I started seeing all kinds of scary side-effect reports about Dexamethasone on the IWMF-TALK mailing list.
By Thursday, they still hadn't been able to talk, and then Dr. Treon called me on Thursday afternoon. He reminded me that he had been leaning away from the RAD001 trial because of the level of invasion in my marrow (95%), the low hemoglobin (8.5), the fact that he had seen hemoglobin (HGB) drop even further in other patients, and that he hadn't yet seen if the RAD001 had an effect on the marrow. But now, another patient with a similar age and disease profile to mine just passed the 3 month mark, and he found in a bone marrow biopsy that this patient's level of invasion had dropped significantly. Now he leans more toward enrolling me. What to do, what to do, what to do? I told Dr. Treon I thought the trial would be a good idea, but wanted to discuss it with my family and with my doctor. Thursday night, I left a message at the hematologist's office to please call!
So this morning, Friday, I heard once more from the hematologist. Finally, he had spoken to Dr. Treon. He said that he was fine with the trial, and that he would be glad to take care of my local care. I'll be taking the RAD001 orally, and my blood counts will have to be monitored regularly. Since the HGB could well drop, I may need transfusions to bring it back up.
And now it's back to Boston to get the trial started. Dr. Treon will be taking a bone marrow biopsy (BMB), both to get a baseline and to put it into a data base he intends to use to investigate whether there is a genetic basis to the disease. He's got close to a thousand samples in it already. They'll give me my first month's supply of pills and a diary to keep track of my compliance and any side effects. I'll also need to find out exactly how often I'll need to get blood work and other lab work done, and what sorts of side effects might constitute an emergency. I'll take the train up next Wednesday morning, and be back late in the evening. Easy as pie.
After that, I need to go to Boston once a month for complete blood work, and for a BMB at the end of the third month. With luck, that will be the next decision point; with more luck, the drug will be working and the decision will be to stay on the trial.
Meanwhile, I started seeing all kinds of scary side-effect reports about Dexamethasone on the IWMF-TALK mailing list.
By Thursday, they still hadn't been able to talk, and then Dr. Treon called me on Thursday afternoon. He reminded me that he had been leaning away from the RAD001 trial because of the level of invasion in my marrow (95%), the low hemoglobin (8.5), the fact that he had seen hemoglobin (HGB) drop even further in other patients, and that he hadn't yet seen if the RAD001 had an effect on the marrow. But now, another patient with a similar age and disease profile to mine just passed the 3 month mark, and he found in a bone marrow biopsy that this patient's level of invasion had dropped significantly. Now he leans more toward enrolling me. What to do, what to do, what to do? I told Dr. Treon I thought the trial would be a good idea, but wanted to discuss it with my family and with my doctor. Thursday night, I left a message at the hematologist's office to please call!
So this morning, Friday, I heard once more from the hematologist. Finally, he had spoken to Dr. Treon. He said that he was fine with the trial, and that he would be glad to take care of my local care. I'll be taking the RAD001 orally, and my blood counts will have to be monitored regularly. Since the HGB could well drop, I may need transfusions to bring it back up.
And now it's back to Boston to get the trial started. Dr. Treon will be taking a bone marrow biopsy (BMB), both to get a baseline and to put it into a data base he intends to use to investigate whether there is a genetic basis to the disease. He's got close to a thousand samples in it already. They'll give me my first month's supply of pills and a diary to keep track of my compliance and any side effects. I'll also need to find out exactly how often I'll need to get blood work and other lab work done, and what sorts of side effects might constitute an emergency. I'll take the train up next Wednesday morning, and be back late in the evening. Easy as pie.
After that, I need to go to Boston once a month for complete blood work, and for a BMB at the end of the third month. With luck, that will be the next decision point; with more luck, the drug will be working and the decision will be to stay on the trial.
Thursday, May 20, 2010
Information Overload
It has been an exciting 3 weeks since my diagnosis. I've joined the IWMF-TALK mailing list; I've been to see the research team at Dana-Farber; I've had 2 consultations with my local hematologist and several phone calls with my family doctor; I've received a monster info packet from IWMF, and started to digest that data; I've learned about some of the treatment regimens, but can't keep them straight in my head. I've told my family, some close friends, some co-workers, and my minister that I have incurable but likely non-fatal cancer. And I need to decide this week what direction to take! Most likely, it will be Velcade/dexamethasone/Rituxan, and I need to get straight in my head what's involved and also work out how to keep the Dana-Farber gang involved. I wish I had another 2 or 3 weeks to digest what I've heard and continue the research. I just found an educational DVD that you can order from the IWMF with presentations by most of the Bing (Dana-Farber) team, and I'd love to be able to watch that before deciding. I'm going to order it anyway, and just keep plugging away at everything. Even though I'm pretty certain what path I'll be heading down, there are certain to be plenty more decision points along the way. The more I know about what's going on, the better my decisions will be (I hope) when I come to those forks in the road. Right now, I'm not even sure whose woods these are...
Wednesday, May 19, 2010
Just when I thought it was safe...
Dr. Treon called me tonight to say that with the tumor load in my marrow (95%), it may be better to go with a Rituxan-based treatment. He hasn't seen tumor load decrease with RAD001 treatment in the short term - that is, at the three month point - in any patients. He hopes to see it at the six month point, but that data isn't in yet. At the same time, he said he could support a decision to go ahead with the trial, but that it might require more vigilance and patience on my part. He wasn't specific about what adverse events might occur if the tumor load doesn't go down, other than likely continuing worsening of the anemia.
He would lean toward Velcade-Dex-Rituxan. (Dex = dexamethasone, a steroidal anti-inflammatory and immunosuppressant). Velcade is a biologic drug, so that while it tends to kill tumor cells, it doesn't damage DNA. This means that there is less likelihood of its causing other cancers later on.
So now I'm confused again. I have an appointment with my hematologist in the morning, and will see what his perspective is, even though he doesn't have a lot of experience with WM.
He would lean toward Velcade-Dex-Rituxan. (Dex = dexamethasone, a steroidal anti-inflammatory and immunosuppressant). Velcade is a biologic drug, so that while it tends to kill tumor cells, it doesn't damage DNA. This means that there is less likelihood of its causing other cancers later on.
So now I'm confused again. I have an appointment with my hematologist in the morning, and will see what his perspective is, even though he doesn't have a lot of experience with WM.
Oats Schmoats!
When I was first diagnosed with Atrial Fibrillation (see the "A Prior Adventure" post from May 5), I also found I had high cholesterol. I went on a strict regimen of exercise and low-fat vegetarian eating, and brought the cholesterol down from 220 to about 150 in just 6 months. I made myself think of cheese and butter as poison. One of the key dietary components was raw oats with fresh fruit and soy milk every morning. Since then, the cholesterol has stayed low, even though I now eat a fair amount of fatty foods (like pizza, buttered bagels, yum) and haven't had the energy for regular exercise - and I had attributed this to my daily oats. Until this afternoon. This afternoon, I found out that one of the effects of WM is to lower cholesterol. So once the disease is under control, I guess I'll have to start being careful about pizza again :(
Harvesting Stem Cells
As I continue to read and learn, I keep running into the idea of harvesting stem cells with the idea of holding them in a freezer for an eventual bone marrow transplant. The purpose would be to flush out all the diseased cells, and replace them with new, healthy cells. (Actually, the stem cells will grow into healthy cells.) The harvesting is done after a course of treatment has diminished the disease. I asked Dr. Treon about this, and he said they don't recommend it, because there is a 10% mortality rate with an autologous transplantation (meaning you put your own, previously harvested cells back), and a 50% mortality rate if you use someone else's (almost always a very close relative).
Feeling in a RAD mood
I'm pretty sure I'll sign up for the trial. I don't think there's much of a downside. I had a few questions that I sent to Dr. Treon and his Nurse Practitioner (Trish Sheehy), but Ms. Sheehy cleared them up on the phone this afternoon. Here are the questions and answers:
1. In section B of the consent form, it says that "the purpose of this research study is to determine the safety of RAD001..." Could you please confirm that the purpose is also to determine the efficacy in treating WM?
1. In section B of the consent form, it says that "the purpose of this research study is to determine the safety of RAD001..." Could you please confirm that the purpose is also to determine the efficacy in treating WM?
- the purpose of the trial is both safety and efficacy
2. Is the definition of "the drug is working to reduce WM" (page 3, section D, second paragraph of the consent form) a decrease in IgM level, decrease in bone marrow involvement, and resolution or reduction of adenopathy/organomegaly? In particular, if the IgM decreases and there is decreased bone marrow involvement, but my anemia doesn't improve, would the treatment be deemed successful for the purposes of the trial?
- this is correct: IgM levels, bone marrow involvement, and adenopathy/organomegaly are the indications.
3. One of the "less likely" risks (page 10, 4th bullet) is anemia. As I understand it, the reason that near-term therapy (as opposed to "watching & waiting") is recommended for me is my existing anemia. Is there any reason to think that I'm at additional risk because of my anemia?
- my anemia is likely to worsen, at least initially. If the HGB level goes below 7, they interrupt the trial and give me hormones to stimulate red blood cell growth or else a transfusion, and resume when the level recovers. If this happens 3 times, they discontinue me. Since my HGB is currently 8.5, they will monitor this closely.
4. My family doctor had the concern that if I go on the trial, and it doesn't help, then I'll have lost some time on the more traditional therapy. On the other hand, it's my understanding that the Rituxan-based therapy might fail as well. My feeling is that since there's a risk of no-response either way, perhaps this isn't an important consideration. Does this sound like a reasonable point of view?
- NP Sheehy considers this a reasonable point of view. Either treatment could fail, and the alternative can be started.
And related to the disease in general rather than the trial specifically:
5. What are the likely negative outcomes if the disease is left untreated?
- The anemia will likely get worse, and eventually start to damage organs including the heart. The malignancy can also spread.
6. What is the expected survival rate? Much of the literature says 5-7 years, but at the same time some of it says that with therapy, the symptoms can be managed and the disease is not likely to be fatal. What is the Bing Institute's view on this?
- At the Bing Institute (the WM research center at Dana-Farber), they currently view the survival rate as 12-19 years. They can't say more than 19 years only because they haven't been studying it that long. It sounds like, for all intents and purposes, the treatments can manage the disease. NP Sheehy believes that the 5-7 numbers that are all over the Web haven't changed because the organizations that post them (e.g. American Cancer Society or National Cancer Institute) just haven't kept up with the latest research, because they're busy with the more common cancers like lung cancer and breast cancer.
Monday, May 17, 2010
Anxiety unwarranted
The visit with Dr. Treon was by any measure a big success. The facility is world-class: several of Boston's biggest and most prestigious hospitals (Beth Israel Deaconess; Brigham & Women's; The Children's Hospital) are all located within a few blocks of each other, and the whole complex seems to be closely related to the Harvard Medical School. There's a branch of the Harvard Coop (basically the Harvard University bookstore) right across the street from the Dana-Farber institute. The whole area is bustling with doctors, nurses, students, clinicians, and other health-care workers.
Dr. Treon's research center - the Bing Center for Waldenström's Macroglobulinemia - has two full-time physicians (Dr. Treon and Dr. Irene Ghobrial) and a staff of nurse-practitioners, administrators, and other support staff. It's supported by all the labs and research centers that make up the Harvard research facility. Dr. Treon said that he gets help from the best geneticists in the world when he needs it.
My visit started with registration, a quick review of vital signs (blood pressure etc), and then 40+ minutes with Patricia Sheehy, Dr. Treon's nurse-practitioner. She reviewed my symptoms, confirmed that I have WM, and discussed several treatment options with me. She also patiently (very patiently) answered all my questions about the disease mechanisms, the definition of various terms, and some symptoms that I thought might be related (ringing in the ears; blurry vision). The tinnitus (ringing) might be related, but the blurry vision is probably not, because rubbing my eyes can make it go away.
Tricia invited me to join a statistical trial where they're tracking about 1000 patients. This will help them try to identify causes of WM and keep track of which treatment regimens are effective. I signed right up for that one.
She also described a trial of a drug called everolimus. Everolimus has been approved in transplantation medicine (as Zortress in the US and Certican in Europe), and for cancer of the kidney in the US (as Afinitor). It has also been approved for second-line treatment of WM, i.e. for treatment of WM if Rituxan therapies proved ineffective. (To use some of my growing vocabulary of jargon, for treatment of patients who are "refractory" to Rituxan therapy.) Dr. Treon is working on a trial of everolimus as a first-line treatment, and they invited me to join that trial as well.
After Tricia provided all that information, she left us to read the info about the everolimus trial while she brought Dr. Treon up to speed on my situation. Dr. Treon came in, and gave me a brief physical exam, including probing the lymph nodes in my neck, stomach, and groin, and looking at my hands and feet for evidence of cryoglobulins (I think). After that, he spoke with me for 30 minutes or more about the treatment options. There are several variations of Rituxan treatment, all of which involve Rituxan in combination with chemotherapy and a steroid. The steroid just seems to make everything work better. The chemotherapy options are Cytoxan, Velcade, Cyclophosphamide, and Bendamustine. Each has its pros and cons. They are what are known as alkylating agents, and they basically stop cells from dividing and cause them, ultimately, to die. It's not clear to me how they target the correct cells. He did say that the course of these drugs is limited, because aggressive treatment with them can, in the long term, result in other malignancies. He didn't indicate how the particular set of drugs is chosen.
My impression had been that with Rituxan therapy, one can expect to go into remission, more-or-less, and enter a phase called "watching and waiting." In this phase, most of the symptoms have gone away, and your blood levels and bone marrow are monitored. If the indications (IgM, bone marrow invasion) come back, you go on the therapy again. Dr. Treon said this level of remission is relatively rare, and that it is much more often the case that after the initial course that a maintenance course is necessary. The initial course is an infusion of the Rituxan cocktail every three weeks, for 18 weeks (six treatments). The maintenance is an additional infusion every three months. An infusion pretty much takes all day, with constant monitoring of your vitals and any effects you may feel (chills, unusual tastes in the mouth, ...). Also, the chemotherapy can cause hair loss and other "classic" chemotherapy side effects.
Everolimus is a pill. You take one a day. For the trial, they require a visit to DFCI (Dana-Farber Cancer Institute) every 4 weeks for the first 3 months, then another visit every three months after that. The trial lasts 48 months, or until the drug isn't helping your symptoms. If it's not helping, you can go to the traditional therapy (Rituxan etc). At the end of the 48 months, either the drug will be approved, and you can stay on it with insurance paying for it, or you can buy it yourself, or you can go to Rituxan.
I'm leaning towards joining the everolimus trial. I've still got a few questions about it, and they also had to take some blood to make sure I'm eligible. I went into the blood lab, and they drew 21 separate vials of blood! I asked them if they could get both arms going at once to make it go faster. I'll post separately on my thoughts on joining the trial.
Dr. Treon's research center - the Bing Center for Waldenström's Macroglobulinemia - has two full-time physicians (Dr. Treon and Dr. Irene Ghobrial) and a staff of nurse-practitioners, administrators, and other support staff. It's supported by all the labs and research centers that make up the Harvard research facility. Dr. Treon said that he gets help from the best geneticists in the world when he needs it.
My visit started with registration, a quick review of vital signs (blood pressure etc), and then 40+ minutes with Patricia Sheehy, Dr. Treon's nurse-practitioner. She reviewed my symptoms, confirmed that I have WM, and discussed several treatment options with me. She also patiently (very patiently) answered all my questions about the disease mechanisms, the definition of various terms, and some symptoms that I thought might be related (ringing in the ears; blurry vision). The tinnitus (ringing) might be related, but the blurry vision is probably not, because rubbing my eyes can make it go away.
Tricia invited me to join a statistical trial where they're tracking about 1000 patients. This will help them try to identify causes of WM and keep track of which treatment regimens are effective. I signed right up for that one.
She also described a trial of a drug called everolimus. Everolimus has been approved in transplantation medicine (as Zortress in the US and Certican in Europe), and for cancer of the kidney in the US (as Afinitor). It has also been approved for second-line treatment of WM, i.e. for treatment of WM if Rituxan therapies proved ineffective. (To use some of my growing vocabulary of jargon, for treatment of patients who are "refractory" to Rituxan therapy.) Dr. Treon is working on a trial of everolimus as a first-line treatment, and they invited me to join that trial as well.
After Tricia provided all that information, she left us to read the info about the everolimus trial while she brought Dr. Treon up to speed on my situation. Dr. Treon came in, and gave me a brief physical exam, including probing the lymph nodes in my neck, stomach, and groin, and looking at my hands and feet for evidence of cryoglobulins (I think). After that, he spoke with me for 30 minutes or more about the treatment options. There are several variations of Rituxan treatment, all of which involve Rituxan in combination with chemotherapy and a steroid. The steroid just seems to make everything work better. The chemotherapy options are Cytoxan, Velcade, Cyclophosphamide, and Bendamustine. Each has its pros and cons. They are what are known as alkylating agents, and they basically stop cells from dividing and cause them, ultimately, to die. It's not clear to me how they target the correct cells. He did say that the course of these drugs is limited, because aggressive treatment with them can, in the long term, result in other malignancies. He didn't indicate how the particular set of drugs is chosen.
My impression had been that with Rituxan therapy, one can expect to go into remission, more-or-less, and enter a phase called "watching and waiting." In this phase, most of the symptoms have gone away, and your blood levels and bone marrow are monitored. If the indications (IgM, bone marrow invasion) come back, you go on the therapy again. Dr. Treon said this level of remission is relatively rare, and that it is much more often the case that after the initial course that a maintenance course is necessary. The initial course is an infusion of the Rituxan cocktail every three weeks, for 18 weeks (six treatments). The maintenance is an additional infusion every three months. An infusion pretty much takes all day, with constant monitoring of your vitals and any effects you may feel (chills, unusual tastes in the mouth, ...). Also, the chemotherapy can cause hair loss and other "classic" chemotherapy side effects.
Everolimus is a pill. You take one a day. For the trial, they require a visit to DFCI (Dana-Farber Cancer Institute) every 4 weeks for the first 3 months, then another visit every three months after that. The trial lasts 48 months, or until the drug isn't helping your symptoms. If it's not helping, you can go to the traditional therapy (Rituxan etc). At the end of the 48 months, either the drug will be approved, and you can stay on it with insurance paying for it, or you can buy it yourself, or you can go to Rituxan.
I'm leaning towards joining the everolimus trial. I've still got a few questions about it, and they also had to take some blood to make sure I'm eligible. I went into the blood lab, and they drew 21 separate vials of blood! I asked them if they could get both arms going at once to make it go faster. I'll post separately on my thoughts on joining the trial.
Sunday, May 16, 2010
Anxious over Boston Trip
Tonight we're driving up to Boston for a 9AM Monday morning appointment with Dr. Treon. I haven't let myself get upset over having WM, but now I feel like tomorrow will be a day of reckoning. First of all, I've found out that my hematologist hasn't positively diagnosed WM, but that is his initial thought. I heard this from my family doctor, who got a letter from him. I worried that perhaps it's jumping the gun to go see Treon, but she assured me that it's an appropriate step at this point to get a second opinion.
So now I have to worry about what if it's something else? It's pretty clearly a bone marrow disease, but there are lots of those. I'be been reading the IWMF-TALK mailing list pretty regularly, and there are so many other things it could be. I need to just stay calm and see what tomorrow brings.
The IWMF-TALK list is full of information about different treatment protocols, the disease mechanism, support group meetings, recent research and clinical trials, and personal experiences. I've thought of a whole bunch of questions for Treon, and need to write them down.
So I expect to clear a lot of things up, but probably generate some new uncertainties tomorrow. That's what I mean by a "day of reckoning."
So now I have to worry about what if it's something else? It's pretty clearly a bone marrow disease, but there are lots of those. I'be been reading the IWMF-TALK mailing list pretty regularly, and there are so many other things it could be. I need to just stay calm and see what tomorrow brings.
The IWMF-TALK list is full of information about different treatment protocols, the disease mechanism, support group meetings, recent research and clinical trials, and personal experiences. I've thought of a whole bunch of questions for Treon, and need to write them down.
So I expect to clear a lot of things up, but probably generate some new uncertainties tomorrow. That's what I mean by a "day of reckoning."
Sunday, May 9, 2010
Latest Treatment
I signed up for a mailing list for WM sufferers. It's delivering 10-20 messages a day. It's going to be difficult to wade through all of it, but I did find a gem in one of the threads: a link to the latest treatment protocols by Steven Treon. It's from July 2009, so it's pretty up-to-date. I'll be reading it before my next appointment with my local hematologist and before I go up to Boston to see Treon.
Friday, May 7, 2010
Talking to the Family
How do you tell your family about this? I talked to the minister at the church we belong to about it to see what insights he might have. He suggested just staying calm and sticking to the facts. That's easy for me, being a factoid freak. It also makes sense. I'm not real upset about the situation at present, so there's no anxiety to pass on to others.
My wife has known about the diagnosis as long as I have. She was with me when I got the good news (it's not multiple myeloma)/bad news (it's an incurable but usually manageable blood disorder) from the hematologist. We talk about how we feel about it, and she subscribes to the blog to get my logical analyses and descriptions of the situation. She seems to be about in the same emotional place as I am right now: this is a serious state of affairs, but not something to get panicked about. It needs to be treated, but it's not an emergency.
My high-school son saw me looking at the huge package from the IWMF (see previous post) the other day, and asked me what it was all about. I had previously told him about the anemia, so he was curious about what's been diagnosed. I told him it's an incurable but treatable disease and that I'll be going to Boston to see a world-class expert. He took it fairly well.
My daughter called this evening, and I took the opportunity to tell her about it. I was going to wait until she visits this weekend and tell her in person, but the time just seemed right. Since there are no good guidelines about how to do this, I just opened up. Like everything else about being a parent, there's no clear-cut way to handle this situation. The conversation went well, although it tends to get tricky when the words "incurable" and "cancer" come up. She was upset with the news - we all are - but seems to understand why we're relatively calm. She had lots of questions, and I told her we're continuing to learn about the disease. She'll be reading this blog to follow what I learn and to follow my emotional progress as the adventure moves forward.
My wife has known about the diagnosis as long as I have. She was with me when I got the good news (it's not multiple myeloma)/bad news (it's an incurable but usually manageable blood disorder) from the hematologist. We talk about how we feel about it, and she subscribes to the blog to get my logical analyses and descriptions of the situation. She seems to be about in the same emotional place as I am right now: this is a serious state of affairs, but not something to get panicked about. It needs to be treated, but it's not an emergency.
My high-school son saw me looking at the huge package from the IWMF (see previous post) the other day, and asked me what it was all about. I had previously told him about the anemia, so he was curious about what's been diagnosed. I told him it's an incurable but treatable disease and that I'll be going to Boston to see a world-class expert. He took it fairly well.
My daughter called this evening, and I took the opportunity to tell her about it. I was going to wait until she visits this weekend and tell her in person, but the time just seemed right. Since there are no good guidelines about how to do this, I just opened up. Like everything else about being a parent, there's no clear-cut way to handle this situation. The conversation went well, although it tends to get tricky when the words "incurable" and "cancer" come up. She was upset with the news - we all are - but seems to understand why we're relatively calm. She had lots of questions, and I told her we're continuing to learn about the disease. She'll be reading this blog to follow what I learn and to follow my emotional progress as the adventure moves forward.
Boston Bound
I've got an appointment with Steven Treon at the Dana-Farber Cancer Institute for the 17th, but I'm going to move it to the 24th. They want medical records a week in advance, and there's no way I'll get the records to them by Monday. I'm excited about this: as mentioned in previous posts, he's The Man when it comes to WM.
A package arrived from Dana-Farber today. It's got a list of places to stay near the center. There's a wide variety of options, from the YMCA at about $40/night to fancy hotels @ > $200/night. There is also a network of volunteers who let patients stay for free in their homes. Sort of couch-surfing for cancer patients. There are some reasonable options for under $100/night. I'll probably pick one of those; I'm not interested in a 4 star hotel, and don't want to mess with the volunteer network on my first visit. If I end up making lots of trips (don't consider that likely at this point) I may look into it. My plan is to go up on Sunday for a Monday appointment and return home that same day.
A package arrived from Dana-Farber today. It's got a list of places to stay near the center. There's a wide variety of options, from the YMCA at about $40/night to fancy hotels @ > $200/night. There is also a network of volunteers who let patients stay for free in their homes. Sort of couch-surfing for cancer patients. There are some reasonable options for under $100/night. I'll probably pick one of those; I'm not interested in a 4 star hotel, and don't want to mess with the volunteer network on my first visit. If I end up making lots of trips (don't consider that likely at this point) I may look into it. My plan is to go up on Sunday for a Monday appointment and return home that same day.
IWMF
The IWMF - International Waldenström's Macroglobulinemia Foundation - sent me a giant package of information about the disease. In addition to a welcome letter with phone numbers for support groups and people with information about various aspects of the disease, the package includes 6 glossy five-by-eight booklets:
The plan is to plow through all of these. So far, I'm about 20 pages (out of about 60) into the first one above. It's heavy going - lots of references to scientific literature, and discussion of outcomes both in terms of remission of symptoms and life expectancy. I'm still struggling a bit with this life expectancy thing; I kind of think that this booklet focuses on it in the discussion of various studies because the disease is a cancer, and that's a standard measure of effectiveness. My current point of view is that it's not likely to be fatal ("It is more likely that you will die with WM than from it"), but that one could die from it, just as one could die from a cold, or from the flu, or the measles, or just walking down the street. This is one of the things I intend to discuss both with my hematologist and with Steven Treon when I see him in Boston.
Anyway, that's getting away from a discussion of the IWMF. Besides all the material they sent, their Web site has all kinds of good information. Among other things, there's a discussion group that I intend to join. According to the Web site, the group has about 20 messages per day. I'll see how that works out, and post something about it..
There are no support groups listed for NJ, although there is one for NYC. I've emailed the named contact for that group (last week), but haven't heard anything back yet. In the package the IWMF mailed to me, there is a support contact in NJ for Rituxan treatment; he's in area code 201, so it's not too far from here, and I'll get in touch with him soon.
- Review of Therapy, discussing various therapies and the scientific literature on their outcomes;
- Treatment Options, which appears to cover much of the same material but from the point of view of the patient rather than as a review of science;
- Medical Tests, discussing the various tests to diagnose the disease and the reasons for performing them;
- Basic Immunology in Waldenström's Macroglobulinemia, describing the relationship between the disease and the immune system;
- Healthy Living, which recommends healthy lifestyle choices which are intended to make it easier to live with the disease (nutrition, exercise, the usual suspects); and
- Questions and Answers, a basic FAQ list (Frequently Asked Questions, for non-geeks out there) on the disease and treatment.
The plan is to plow through all of these. So far, I'm about 20 pages (out of about 60) into the first one above. It's heavy going - lots of references to scientific literature, and discussion of outcomes both in terms of remission of symptoms and life expectancy. I'm still struggling a bit with this life expectancy thing; I kind of think that this booklet focuses on it in the discussion of various studies because the disease is a cancer, and that's a standard measure of effectiveness. My current point of view is that it's not likely to be fatal ("It is more likely that you will die with WM than from it"), but that one could die from it, just as one could die from a cold, or from the flu, or the measles, or just walking down the street. This is one of the things I intend to discuss both with my hematologist and with Steven Treon when I see him in Boston.
Anyway, that's getting away from a discussion of the IWMF. Besides all the material they sent, their Web site has all kinds of good information. Among other things, there's a discussion group that I intend to join. According to the Web site, the group has about 20 messages per day. I'll see how that works out, and post something about it..
There are no support groups listed for NJ, although there is one for NYC. I've emailed the named contact for that group (last week), but haven't heard anything back yet. In the package the IWMF mailed to me, there is a support contact in NJ for Rituxan treatment; he's in area code 201, so it's not too far from here, and I'll get in touch with him soon.
Wednesday, May 5, 2010
A prior adventure
About 10 years ago, I started noticing irregular heartbeats. The episodes would usually last no more than a few minutes, but occasionally would last an hour or so. It got to the point where running up a set of stairs could wear me out, if it was during an episode. So I went to the doctor one morning when I noticed the symptom. He gave me an EKG, and told me to get someone to rush me to the hospital - my heart was in atrial fibrillation. I told him it would likely go away in half an hour or so, but he was adamant. So I went back home, got a toothbrush and a paperback, and headed to the emergency room. The toothbrush was in case they checked me in (which I doubted), and the paperback was because there's always a long wait in the ER. I didn't even bother to call my wife, because I was sure I'd be heading home soon.
Sure enough, when they hooked me up to the EKG at the hospital, no a-fib. The cardiologist initially thought my family practitioner must have been mistaken; but when I mentioned his name, he said he knew him and doubted he had mis-diagnosed me. So he asked me to schedule an appointment at his office for a more complete evaluation. After lots of testing, and assurances that the risk of a complication was low, they put me on a blood thinner and an anti-arrhythmic drug called Fleicanide. This took care of the condition for about 8 years, although I had to cut way back on caffeine and alcohol. I only drank decaf coffee, no caffeinated sodas, and just a few glasses of wine a week tops.
Then the arrhythmia started to return. Eventually, it turned out that the Fleicanide can become ineffective after long usage, and can actually aggravate the arrhythmia. I had to stop taking it, and took a beta blocker instead - which was not nearly as effective as the Fleicanide had been. So for the next two years the arrhythmia, while not a big danger, interfered with my active lifestyle. The next step was radio frequency ablation. This is an invasive procedure where an electrophysiologist - a cardiologist with a sub-specialty in arrhythmia - uses catheters to zap small areas of heart muscle with microwaves to change the electrical conduction patterns in the heart. They're not sure why, but this can more-or-less cure a-fib.
The first try, in the Fall of 2008, didn't do the trick. He tried again in April of 2009, and that seemed to work. But while I was in the hospital - the procedure takes several hours, and recovery takes 1-3 days - the doctor noticed that I was anemic. He gave me a transfusion, and told me to follow up with my family doctor. And that's what led me to the current diagnosis.
So for the last two years I haven't been exercising nearly as regularly as I used to. I feel that I've got to get this started again, because I want to be in good physical condition for whatever treatment is in store for me next.
Sure enough, when they hooked me up to the EKG at the hospital, no a-fib. The cardiologist initially thought my family practitioner must have been mistaken; but when I mentioned his name, he said he knew him and doubted he had mis-diagnosed me. So he asked me to schedule an appointment at his office for a more complete evaluation. After lots of testing, and assurances that the risk of a complication was low, they put me on a blood thinner and an anti-arrhythmic drug called Fleicanide. This took care of the condition for about 8 years, although I had to cut way back on caffeine and alcohol. I only drank decaf coffee, no caffeinated sodas, and just a few glasses of wine a week tops.
Then the arrhythmia started to return. Eventually, it turned out that the Fleicanide can become ineffective after long usage, and can actually aggravate the arrhythmia. I had to stop taking it, and took a beta blocker instead - which was not nearly as effective as the Fleicanide had been. So for the next two years the arrhythmia, while not a big danger, interfered with my active lifestyle. The next step was radio frequency ablation. This is an invasive procedure where an electrophysiologist - a cardiologist with a sub-specialty in arrhythmia - uses catheters to zap small areas of heart muscle with microwaves to change the electrical conduction patterns in the heart. They're not sure why, but this can more-or-less cure a-fib.
The first try, in the Fall of 2008, didn't do the trick. He tried again in April of 2009, and that seemed to work. But while I was in the hospital - the procedure takes several hours, and recovery takes 1-3 days - the doctor noticed that I was anemic. He gave me a transfusion, and told me to follow up with my family doctor. And that's what led me to the current diagnosis.
So for the last two years I haven't been exercising nearly as regularly as I used to. I feel that I've got to get this started again, because I want to be in good physical condition for whatever treatment is in store for me next.
Tuesday, May 4, 2010
Local care and support
As mentioned in the previous post, Chris Patterson on Dr. Treon's staff sent a reference to a doctor at the Hackensack Medical Center - Dr. David Siegel. Looking over his CV, he seems to be more focussed on multiple myeloma, although he is a member of the WMCTG (Waldenström's Macroglobulinemia Clinical Trials Group). He doesn't have any trials underway at present, as far as I can tell.
There seems to be very little activity at Sloan-Kettering, and a smattering at Weill-Cornell, both in NYC. It's notable that Chris Patterson (previous post) didn't refer anyone from either of those places.
The IWMF has a link for support groups. There isn't one listed for NJ (which makes me all the more eager to get consultation from someone out of the area), but I emailed the contact for a group in NYC yesterday. So far, no response...
There seems to be very little activity at Sloan-Kettering, and a smattering at Weill-Cornell, both in NYC. It's notable that Chris Patterson (previous post) didn't refer anyone from either of those places.
The IWMF has a link for support groups. There isn't one listed for NJ (which makes me all the more eager to get consultation from someone out of the area), but I emailed the contact for a group in NYC yesterday. So far, no response...
The Bing Center
Dr. Treon's center is called the Bing Center for Waldenström's Macroglobulinemia. Last Friday, I got an email from the Administrative Director of the center, Christopher Patterson. He's also the "organizing secretariat" of the last two international workshops. Here's what he had to say:
I called Karin Anderson's number today. She wasn't available, but someone named Jake took all my information and promised that she'd be back to me within a day to schedule a consult. They take my insurance, yay! My local hematologist wants me to have a CAT scan to rule out lymphoma - scheduled for Friday - so I'll set up to go to Boston after those results are in. I'm excited that Treon may be able to work with my local doctor regarding my treatment. I'll have to remember to ask him if he just sets initial direction, or if he stays involved during the progression of the treatment and disease.
I called Karin Anderson's number today. She wasn't available, but someone named Jake took all my information and promised that she'd be back to me within a day to schedule a consult. They take my insurance, yay! My local hematologist wants me to have a CAT scan to rule out lymphoma - scheduled for Friday - so I'll set up to go to Boston after those results are in. I'm excited that Treon may be able to work with my local doctor regarding my treatment. I'll have to remember to ask him if he just sets initial direction, or if he stays involved during the progression of the treatment and disease.
Thank you very much for your email. In terms of a second opinion, Dr Treon is accepting new consults and can work with your local oncologist in terms of direction of treatment and diagnosis. To speak with our new consult administration, please contact Karin Anderson at 617.632.3823.The Bing Center April newsletter wasn't real informative; it was just an announcement for a meeting of a support group (already passed). But it's good to learn that there is a support group up in Boston, and it will be worth keeping an eye on what they're presenting there.
If you wish to look for a second opinion within your area, Dr David Siegel at the Hackensack University Medical Center, Hackensack, NJ. The link for his information:
http://www.wmctg.org/biopage_Siegel.html
Attached, please find the Bing Center for WM's April newsletter. Should you have any questions, please feel free to contact me.
All the best-
Chris
Network works
My friend Annie came through - her brother was able to find out that Dr. Treon is indeed the leading expert on Waldenström's Macroglobulinemia. He (the brother) is no longer at Dana-Farber, but has many contacts there.
This prompted me to do some more googling (never binging!). There have been 6 international workshops on the disease, and Treon has been a presenter or organizer for most of them. So he should know as much as anyone about what to expect.
This prompted me to do some more googling (never binging!). There have been 6 international workshops on the disease, and Treon has been a presenter or organizer for most of them. So he should know as much as anyone about what to expect.
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