Sunday, June 30, 2013

Transcript #1

I'd asked my brother, when he was up the other day, if he also wanted to hear the recording my sisters and mother had listened to of my first appointment with the C-Dr, and he in turn wondered if there wasn't just a transcript he could read.  What?  That's too much effort! However, the more I thought about it and re-listened to the recording (which I've done more than once or twice!!) the more I decided it would be worth sharing, if for nothing more than as an educational tool to others. Remember this is just the starting point so it's good, basic, background information of NHL and possible treatment options, or not. Sit back and get comfortable.  There are a few spots I've edited out small pieces of useless conversation with brackets [...] or inserted some clarifying information, also in brackets, but for the most part here is 15 minutes that cost me a lot of $$$ but is free to you. Well, except for your investment of time. Until I find the appropriate disclaimer please understand I expect this not be abused.  Thanks.


 C-DR:  So, Lymphomas. Cancers of white blood cells called lymphocytes. No one is really quite sure why lymphomas occur. If you look at other types of cancer like lung cancer: smoking; breast cancer: having breasts, being a woman; you know we can find out certain risk factors for those types of things. The thought process is with lymphomas, perhaps there is some sort of infectious or inflammatory sort of stimulus to your immune system which causes some lymphocytes to increase, and one of those lymphocytes has got a change in its wiring. It’s got something a little different that makes it clone itself over and over and over and over again, and the clone cell is really the hallmark of most cancers. So once that stimulus goes away the other cells kind of contract and go back to their normal housekeeping sort of status but this one cell that had changed its wiring up, just keeps cloning itself over and over and over. And sometimes lymphocytes, they circulate in your blood, they live inside lymph nodes and come from your bone marrow. So depending on where the abnormal cells are would depend on what kind of symptoms you have. The most common thing is for people to have a swollen lymph node, you know, and say that it doesn't really hurt but its kinda been there and it’s just kinda odd that it’s there and they usually go through a course of antibiotics or so and it just doesn't get better and then they get a scan and they get a biopsy, just exactly as you've done.
 
 So, when you talk about these lymphomas, again there’s Hodgkins and Non-Hodgkins.  This [yours] is a Non-Hodgkins lymphoma and for one to say they’re better or worse that’s not always the case. They’re different. They’re just different is all. So Hodgkins Lymphoma usually occurs in people in their teens, 20’s, early 30’s and can occur again later in life, early 60’s or so. Non-Hodgkins Lymphoma can occur across the spectrum of ages from childhood to adult. This [yours] is usually one that occurs in older patients. There are three kinds of ways, or four really, broad categories to put Non-Hodgkins Lymphoma into. Because, there are more types of Non-Hodgkins Lymphoma than you can shake a stick at. There’s Follicular, there something called Mantle cell, there’s something called a Lymphoblastic, there’s a Diffuse large B-cell. There’s lots and lots of different kinds of Non-Hodgkins Lymphoma’s. But the way you think of them: slow growing, intermediate growing, fast growing, and very fast growing. So the very fast growing ones are kind of like leukemia’s, really what we would call acute leukemia’s. They've come from nothing to causing a world of symptoms within a few weeks, and if they’re not treated right away people die within a month or so of that. The fast growing ones are ones that usually occur and then need treatment within a few months. And then the slow growing ones could have been there for a long period of time and nobody ever knew it until a lymph node popped up or something popped up and someone looked at it said, hey, this is abnormal let’s investigate it and then they found it out, because people can live with those without symptoms or problems for many years. The intermediate ones are somewhere in between those ranges. Follicular lymphomas [what I have] are generally considered to be slow or intermediate growing ones. With this one [yours] being a grade 2/3 [pathology report finding, this is a ‘grade’ not a ‘stage’] it’s really kind of on the borderline between a slow to intermediate type of growth. 

So, the important part about figuring out where to go from here always involves doing what’s called a “staging” process. Staging means that we look at your whole body and we decide where this cancer is located. We've obviously cut out this spot in your neck and we know that that lymph node there was involved, but because lymphomas are really kind of liquid tumors involving these abnormal lymphocytes they could involve other lymph nodes. They could be inside the bone marrow. Very rarely they could spread to other organs like your lungs or liver or some places like that. When I examined you I can’t feel any lymph nodes over on either side of your neck really at this point, there’s still a little swelling left there [from the surgery]. I can’t feel any under your arms. Your spleen is also a giant lymph node. I can’t completely feel that, […] but it’s not obviously enlarged when I push there. So what we tend to do then is get some laboratory, look at a blood count, look at something called an LDH and then we get some scans to look at your whole body.

Probably the best way to do that right now is with a scan called a PET scan. What a PET scan does is they inject you, through your vein with a kind of sugar. It’s a fluoridated sugar, it’s got a little fluoride molecule on there. And that sugar is taken up by cells that are dividing quickly in your body. If you had a cut somewhere those cells are turning over. If you had an infection in your skin somewhere those cells are turning over, and pneumonia, something like that, and cancer cells because cancer cells are dividing more quickly than normal cells are. That’s the hallmark of that cloned process. They pick up that sugar and you do a scan and then you look at it after the sugar’s been given and it shows up as a bright spot on your body.  And they do a CAT scan and they correlate that CAT scan with where the bright spots are showing up and they can determine very accurately where all the cancer is located. So, we’ll do a PET scan to look at all these other lymph node spots. 

The other thing that we do is a bone marrow biopsy. A bone marrow biopsy is a little harder. What they do there is numb up an area in your pelvic bone, put a needle into that spot, take out a liquid sample of bone marrow and then a solid core of the bone itself. They look at that under a microscope and they determine if there are some of these cloned lymphocytes present.  For some people I just do that here in the room because it’s just a little numbing medicine and it’s really not that big of a deal.  For other people where perhaps it’s a little harder to find that spot […] I have them go and do it with some sedation medicine.  Not general anesthesia, but a little bit of something to make you sleepy so that you don’t remember it. Then they put you under a CT scanner so they can figure out exactly where that needle needs to go. Probably would be the best way to do it for you. A little sedation. Under a CT scanner. Guide exactly where it needs to go. It’s very quick. It’d take a few minutes really to do once they've got everything positioned correctly. And it wouldn't hurt you because you’d be ‘out’, you wouldn't remember it. A little sore the next day. Okay?

MM: that might be good.

C-DR:  You’ll do just fine on that. So that’s a “staging.” We try to determine where else the cancer might be located in your body and in the bone marrow. We’ll look at those things. Then the question will come up: What treatment should we give you. Now the question with that is a very interesting one because with fast growing lymphomas, in this fast and very fast growing ones, we can cure those if treated appropriately right up front. They’re growing quickly, they respond quickly to our treatments which are chemotherapy treatments, therefore they die off quickly and because those cells are always in a growth sort of growth phase, chemotherapy affecting those cells that are dividing quicker and growing quicker, we kill them off, we get rid of them. The slower growing ones we often times will say, “Well because they might grow, and they might not,  they might sit there for a while and then they might grow, you don’t necessarily hit them at the right time to kill all of them off.” So sometimes we don’t cure those but people can live for decades even with having that cancer. So sometimes, depending on if we look and we find it only in one spot or if we find it in lots of spots but we don’t really have symptoms from it the right thing to do oftentimes is to follow that along and not even give any treatment for it for a period of time. There are patients that…

MM:  that’s the Watchful Waiting I read about.

C-Dr:  Yes. There are patients, that depending on how healthy they are and depending on what symptoms they have from the lymphoma they might die of something unrelated to that and might never need treatment for it. You know, I have one patient that came to me in his 80’s. He had a Follicular lymphoma along his neck here and he has a bad heart and bad lungs and heart attacks and things like this. And he got treated by another Doc and then came to see me because he wasn't, just wasn't doing very well. And so I said we’re just not going to treat this. That was four years ago. And he’s now about 86. And he’s still as sick as he always was. But it’s not from any lymphoma type of thing. So sometimes the right thing to do is to do nothing.  Okay?

MM:  That sounds so strange.

C-Dr:  And it sounds very odd and it sounds very strange but the issue is I have loads of treatment for this. The problem is that all those treatments typically will have side effects. And if they can’t take the disease away completely then the goal would be not to expose you to those side effects unless there’s a real good reason to do that.

So, first step: find the stage. Second step: see if this is causing particular problems. There are occasions, most of these Follicular lymphomas we find them at a stage 3 or a stage 4 because they are slower growing and because you don’t know they are there until they show up like that. There are rare times when we might find it in just one spot. If you just find it in one spot then sometimes doing a little radiation treatment to that can be curative. Sometimes if it’s in that more advanced stage then I just kind of watch along and see what kind of symptoms people have and follow it carefully. But I think until we know all of that, you know, I won’t know how to counsel you about that. For right now, just off what you’re telling me you don’t really having a lot of symptoms from this. A lot of people when they show up with a very advanced lymphoma, unexplained weight loss, fevers, sweats at night. I've had patients that waited so long that they come in, they've got their lungs filled with fluid, they've got lymph nodes around here, they got lymph nodes showing up under the skin. Even patients like that with lymphomas I treat and they get a lot better. So, lymphomas are very, very treatable diseases.

Sometimes we treat with what’s called immunotherapy. What that is are antibodies geared towards particular proteins found on the lymphoma cells. They don’t have the same side effects as chemotherapy does like losing your hair and feeling really tired. It’s just Infusions that we give. Sometimes we treat that with immunotherapy plus chemotherapy, so, medicines that go throughout your whole body to kill off those cells. Sometimes a radiation is added in there and sometimes again we don’t do any treatment right up front. 

The other thing about not giving treatment right up front is that it allows medical science to kind of come out with new things that can treat even better with less side effects. The medicine that we use a lot now, called Rituxan, really started to come into play around the year 2000 or so and these days it was a huge step forward in lymphoma. And it’s used for lymphoma plus a lot of other diseases. We didn't have that in the past. There’s a newer kind of chemotherapy medicine called Bendamustine that we didn't have when I finished my training 10 years ago. If you look in the, well, on internet today, on CNN, I was kinda reading this morning. I had already known about this drug but there’s an oral pill used for people with a kind of lymphoma called CLL and another called Mantle cell lymphoma, that has very few side effects that’s been used in patients that have gone through all their other options and has an amazing sort of responses in stability and keeping people alive two years and longer when these patients may have had diseases that would have killed them within 3 or 4 months. So, that medicine is kind of on the horizon so we’re always making some strides forward in our treatments.

So if I say to you, hey listen, I don’t think we need to do treatment right now, and we end up treading water for 2 years, 4 years or however long we can do that and watch and wait, maybe during that time they come out with something that’s a huge breakthrough again that has very few side effects that works very well and then we can say, you know what, we were really smart not doing anything back then. Let’s give you this really good drug now, when you need it, and then we’ll go from there. So, the thing I want to stress for you right now is that, loads and loads of treatment. This is not a diagnosis that I’m expecting that will take your life within the next year or two or three.  This is something…

MM:  Good.  This was not in my plan.

C-Dr:  Exactly.  …that you can live with without treatment. This is something we can treat and people can often times live a decade or longer with the disease in remission. So there are lots of really good treatments out there for this, it’s just trying to decide when it’s right to give it to you, when it’s needed, and what that treatment might be from low intensity to higher intensity sort of treatments.

MM:  Depending on these first tests.

C-Dr:  Exactly, and that’s why we have to do this up front, the right way to figure out what we’re dealing with. Okay?  Questions?

MM:  No, but they’ll be coming.

C-Dr:  They’ll come. Write them all down. I’ll see you back once all these tests are done and I’ll go through all of them and we’ll answer more questions and come up with a plan and then at that point if I haven’t answered those other questions we’ll go over them too.

[…]

C-Dr: You come in and you got all this stress and stuff on your mind. It’s good that you recorded it. Half of it will be gone by the time you walk out the door, half of it will be gone by the time you get home. So you can re-visit it with that [recording].
The internet does have some good resources on there. There’s also some quack type stuff. But if you go to any really, sort of known institution, larger, Mayo Clinic, National Institutes of Health, National Cancer Institute, any large university; any of those websites their information will be good. Anyone that says, “Hey if you buy this special grape juice from me for $1000 and it will fix you” then just say okay thanks and walk away from it. Okay? Definitely a treatable disease. Definitely one that you can live with. You’re gonna do okay. We’re gonna get you through all of this and you’ll be coming back and see us.

[…]

C-Dr:  It has an effect on you whether you consciously realize that or not.


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