Eric:
Clearly a clone appeared from somewhere, thru your measurements and treatments ( ab initio). You are unfortunately, correct.
In other cancers, the term metastasis is used. Usually, with those presenting with Solid tumors, seen on radiography.
But in Blood Cancers, and specifically secondary or Late presenting differentiated Clones--It isn't a relapse, per se. It is new and different disease. ??
Wouldn't " Broadening", "Expanding", or "unfolding" or "Mutated", be more descriptive of your situation, rather than "relapse" ?
You have the right and privilege to define your illness, so others here will understand succinctly, the rather rare presentation(s) of your disease. Goldmine48 also has an unusual Disease "re-appearance". Possibly others, too.
It may well represent an outgrowth of "the era of Novel Drugs". I just don't know.
Nonetheless, I think "relapse" inaccurately describes your and Goldmine's very complex situations. Newbies will not likely appreciate the complexities of multiple myeloma...and how hard you guys have fought this disease.
Best of Luck.
Forums
Re: Importance of seeing treating doctor about lab results
Sorry to hear that you have been diagnosed with a new clone, Eric. Hopefully, one of the newer drugs will bring your numbers down quickly. Please keep us posted.
Spirit
Spirit
Re: Importance of seeing treating doctor about lab results
Eric,
Thanks for your dex-infused opinion on what should and shouldn't be discussed here. I don't think for one moment people come here for a medical analysis, merely to be guided or get some clarity from what their doctors have told them (or not).
You being a "veteran" has perhaps worn your tolerance a little thin for the "newbies," as you put it. Maybe you should take a break from reading those sort of posts that you can't digest. After all, familiarity does breed contempt.
As to all Beaconers, keep asking the questions. Isn't it said quite often: Arm yourself with as much knowledge as you can. One day we will all know as much as Eric.
As for your latest clone, that really sucks. I hope they find something for you soon that works.
Vicki
Thanks for your dex-infused opinion on what should and shouldn't be discussed here. I don't think for one moment people come here for a medical analysis, merely to be guided or get some clarity from what their doctors have told them (or not).
You being a "veteran" has perhaps worn your tolerance a little thin for the "newbies," as you put it. Maybe you should take a break from reading those sort of posts that you can't digest. After all, familiarity does breed contempt.
As to all Beaconers, keep asking the questions. Isn't it said quite often: Arm yourself with as much knowledge as you can. One day we will all know as much as Eric.
As for your latest clone, that really sucks. I hope they find something for you soon that works.
Vicki
-
vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Importance of seeing treating doctor about lab results
Vicki,
In no way is my tolerance worn out or worn a little thin with “newbies”. I still can remember what it was like when I was a newbie to all of this and understand how scary that time was and being starved for information about this disease, all this confusing lab testing and results, what it all means, and how it was going to impact me. I am very sympathetic to people going through this, not worn out by them.
I do see people come on here asking for medical analysis, which is not necessarily a bad thing, as the Beacon has medical advisors who are some of the top myeloma specialist in the world and certainly qualified to provide it. I myself have sought their advice here. What I have is genuine concern about is that people get the right information presented to them in the right way.
While I do not consider myself the smartest person in the room about myeloma, I have learned a few things over the last years navigating through all this myself. Regarding lab results, one concern I have is when someone getting the initial labs done for diagnosis and staging gets the lab results and before the appointment with their doctor to go over them and determine if they have no myeloma, MGUS, smoldering myeloma, or active myeloma and at what stage, or even plasma cell leukemia, they post them here, or just a subset of the labs, and ask for a diagnosis from some anonymous person they know nothing about.
I believe this is a bad thing to do. That does not make them ignorant in any way, they just do not know. While there are quite a number Beacon members who do have a good idea looking at these kind of labs, in this situation I feel it is essential the person tell the person the Beacon is a great resource for questions about myeloma and labs, but in this situation it is best to get the news first from the treating medical qualified doctor first. It is important to get it right.
There have been recent discussions about nonsecretory myeloma which is not going to show up on the common myeloma lab results. Imagine someone posting with nonsecretory myeloma initial diagnosis labs here and asking for a diagnosis and being told all looks good, you have no myeloma, and then learning from their doctor later that they do. That is confusing and bit of a roller coaster emotionally to go through. Another is being told you have myeloma to learn later that it is really plasma cell leukemia, something even worse.
Nearly all the time I see this situation arise, even though there are many Beacon readers that have the knowledge to address these kinds of questions to some degree, they hold back from doing so in a situation like this, which I think is good.
On the other hand, I have seen times when somebody post some labs taken for some other condition they are being treated with and getting nowhere with and through their own research they suspect they might have myeloma. In some of these cases based on the labs they posted I can see where their suspicion may have merit and later learn they were right. The good thing I feel is that nearly all the time I can remember in this situation the replies from Beacon readers are that they should ask or purse seeing oncologist instead of making diagnosis in the reply to the question. I feel this is exactly how to respond back, at least for those of us who are not a Beacon medical advisor who have the training and knowledge to get more specific about things.
The purpose of my posting this thread was to help guide people new to all of this what I feel is the best way to use the internet to get information about myeloma in the right way and setting. Some may feel differently. I am not trying to take issue with veteran Beacon members who are active in the forums and respond back to questions, which I feel is largely is being done in a responsible way.
What does irk me is when I see advocates of alternative therapies immediately start replying back to newbies with their alternative medicine views, and links to doctors and institutions that practice them, and their distrust of the conventional medicine and “big pharma”. While I do believe in open discussion about these views and nobody should be silenced, I believe that thrusting this debate onto someone this early into the myeloma journey is not helpful and confuse and scares them even more. Thankfully it has been a long time since I have seen this occur.
In no way is my tolerance worn out or worn a little thin with “newbies”. I still can remember what it was like when I was a newbie to all of this and understand how scary that time was and being starved for information about this disease, all this confusing lab testing and results, what it all means, and how it was going to impact me. I am very sympathetic to people going through this, not worn out by them.
I do see people come on here asking for medical analysis, which is not necessarily a bad thing, as the Beacon has medical advisors who are some of the top myeloma specialist in the world and certainly qualified to provide it. I myself have sought their advice here. What I have is genuine concern about is that people get the right information presented to them in the right way.
While I do not consider myself the smartest person in the room about myeloma, I have learned a few things over the last years navigating through all this myself. Regarding lab results, one concern I have is when someone getting the initial labs done for diagnosis and staging gets the lab results and before the appointment with their doctor to go over them and determine if they have no myeloma, MGUS, smoldering myeloma, or active myeloma and at what stage, or even plasma cell leukemia, they post them here, or just a subset of the labs, and ask for a diagnosis from some anonymous person they know nothing about.
I believe this is a bad thing to do. That does not make them ignorant in any way, they just do not know. While there are quite a number Beacon members who do have a good idea looking at these kind of labs, in this situation I feel it is essential the person tell the person the Beacon is a great resource for questions about myeloma and labs, but in this situation it is best to get the news first from the treating medical qualified doctor first. It is important to get it right.
There have been recent discussions about nonsecretory myeloma which is not going to show up on the common myeloma lab results. Imagine someone posting with nonsecretory myeloma initial diagnosis labs here and asking for a diagnosis and being told all looks good, you have no myeloma, and then learning from their doctor later that they do. That is confusing and bit of a roller coaster emotionally to go through. Another is being told you have myeloma to learn later that it is really plasma cell leukemia, something even worse.
Nearly all the time I see this situation arise, even though there are many Beacon readers that have the knowledge to address these kinds of questions to some degree, they hold back from doing so in a situation like this, which I think is good.
On the other hand, I have seen times when somebody post some labs taken for some other condition they are being treated with and getting nowhere with and through their own research they suspect they might have myeloma. In some of these cases based on the labs they posted I can see where their suspicion may have merit and later learn they were right. The good thing I feel is that nearly all the time I can remember in this situation the replies from Beacon readers are that they should ask or purse seeing oncologist instead of making diagnosis in the reply to the question. I feel this is exactly how to respond back, at least for those of us who are not a Beacon medical advisor who have the training and knowledge to get more specific about things.
The purpose of my posting this thread was to help guide people new to all of this what I feel is the best way to use the internet to get information about myeloma in the right way and setting. Some may feel differently. I am not trying to take issue with veteran Beacon members who are active in the forums and respond back to questions, which I feel is largely is being done in a responsible way.
What does irk me is when I see advocates of alternative therapies immediately start replying back to newbies with their alternative medicine views, and links to doctors and institutions that practice them, and their distrust of the conventional medicine and “big pharma”. While I do believe in open discussion about these views and nobody should be silenced, I believe that thrusting this debate onto someone this early into the myeloma journey is not helpful and confuse and scares them even more. Thankfully it has been a long time since I have seen this occur.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Importance of seeing treating doctor about lab results
Hi Eric,
Thanks for sharing your thoughts on this topic. And thanks for sharing your recent experience with us. I'm sorry to hear about the new clone (or whatever it is) that seems to have developed in your case. Please keep us posted on how you and your medical team decide to treat it and on how things go.
I think your feelings mirror those of my myeloma specialist. Early in my treatment I told him how I thought it was great that the facility I go to has a portal where I can see many of my lab results very quickly. He did not share my enthusiasm. He said he didn't like how the availability of the results led many people to draw incorrect conclusions about their own cases because they didn't have a full knowledge of the disease (hey, none of us patients has that) or the full context.
However, I still think the portal is a great thing. Otherwise, I would need to wait a full month to get my results or would need to call and bug his staff for my results.
Now, I know this is not exactly what you were talking about, but I think there's an important parallel. Each of us wants information about what is going on as quickly as possible. Nobody likes uncertainty, and God knows those of us with multiple myeloma live with enough uncertainty even in the best of conditions.
The problem is filtering reliable information from unreliable information. You alluded to that in your most recent post in this thread. But you can look at that as being a problem that's even broader than knowing who to trust or not in this forum. Many of the people asking new lab results questions here, or asking about newly diagnosed cases, probably read out-of-date information from other web sites on the Internet before coming here and got very scared. I know I did!
Who do you trust for good information on the Internet? I think the most important characteristic of the Beacon is that it is a source for up-to-date, reliable information. From the news posts by the Beacon Staff, from the monthly columnists, and from those of us participating in the forum.
Because of that, I think all of us in this community have a responsibility to only answer questions that our experience somehow "qualifies" us to answer. And to be clear about the limits of our knowledge.
I think the vast majority of people participating in the forum are very good about that. But it does take awhile to learn who the most knowledgeable people are. And, of course, that changes over time as different people participate or not in the forum.
That's a long way of saying that I don't think it is an either / or dichotomy. Not that you meant to imply that it's a dichotomy, but I think the discussion has evolved in that direction.
There is huge value in people posting whatever questions they want to post here and in anyone who thinks they have something important to say answering those questions. Most of the replies will be relevant and provide good information. The original poster learns, and we all learn. Unfortunately, some replies might be off-base. But I think the community is excellent in respectfully challenging those infrequent cases.
BUT, as you said, none of the activity here in the Beacon can substitute for seeing a real, live doctor, preferably a myeloma specialist.
Mike
Thanks for sharing your thoughts on this topic. And thanks for sharing your recent experience with us. I'm sorry to hear about the new clone (or whatever it is) that seems to have developed in your case. Please keep us posted on how you and your medical team decide to treat it and on how things go.
I think your feelings mirror those of my myeloma specialist. Early in my treatment I told him how I thought it was great that the facility I go to has a portal where I can see many of my lab results very quickly. He did not share my enthusiasm. He said he didn't like how the availability of the results led many people to draw incorrect conclusions about their own cases because they didn't have a full knowledge of the disease (hey, none of us patients has that) or the full context.
However, I still think the portal is a great thing. Otherwise, I would need to wait a full month to get my results or would need to call and bug his staff for my results.
Now, I know this is not exactly what you were talking about, but I think there's an important parallel. Each of us wants information about what is going on as quickly as possible. Nobody likes uncertainty, and God knows those of us with multiple myeloma live with enough uncertainty even in the best of conditions.
The problem is filtering reliable information from unreliable information. You alluded to that in your most recent post in this thread. But you can look at that as being a problem that's even broader than knowing who to trust or not in this forum. Many of the people asking new lab results questions here, or asking about newly diagnosed cases, probably read out-of-date information from other web sites on the Internet before coming here and got very scared. I know I did!
Who do you trust for good information on the Internet? I think the most important characteristic of the Beacon is that it is a source for up-to-date, reliable information. From the news posts by the Beacon Staff, from the monthly columnists, and from those of us participating in the forum.
Because of that, I think all of us in this community have a responsibility to only answer questions that our experience somehow "qualifies" us to answer. And to be clear about the limits of our knowledge.
I think the vast majority of people participating in the forum are very good about that. But it does take awhile to learn who the most knowledgeable people are. And, of course, that changes over time as different people participate or not in the forum.
That's a long way of saying that I don't think it is an either / or dichotomy. Not that you meant to imply that it's a dichotomy, but I think the discussion has evolved in that direction.
There is huge value in people posting whatever questions they want to post here and in anyone who thinks they have something important to say answering those questions. Most of the replies will be relevant and provide good information. The original poster learns, and we all learn. Unfortunately, some replies might be off-base. But I think the community is excellent in respectfully challenging those infrequent cases.
BUT, as you said, none of the activity here in the Beacon can substitute for seeing a real, live doctor, preferably a myeloma specialist.
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Importance of seeing treating doctor about lab results
Rneb - Interesting twist on the relapse issue. Although it seems like Eric's situation is pretty clearly the emergence of a new clone, without reliable genetic testing it can be difficult to answer the "is this a new clone" question. For me, at the end of the day it's not so much is this a re-invigoration of the initial clone or clones or the emergence of a new one. It's that whatever you are using no longer is working so you need a new approach.
Mike - On the issue of access to results through a patient portal, I can understand why some doctors don't like it. They get many calls from patients who are freaking out over results that should not be the source of worry. But like you I appreciate early access to the results and the ability to go back and research trends. But it also allows me to call matters to my doctor's attention that otherwise he may have missed. And to do some research in advance of my next appointment. On balance, a great resource.
Mike - On the issue of access to results through a patient portal, I can understand why some doctors don't like it. They get many calls from patients who are freaking out over results that should not be the source of worry. But like you I appreciate early access to the results and the ability to go back and research trends. But it also allows me to call matters to my doctor's attention that otherwise he may have missed. And to do some research in advance of my next appointment. On balance, a great resource.
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Importance of seeing treating doctor about lab results
Well said Mike, my thoughts exactly.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Importance of seeing treating doctor about lab results
Eric,
I'm so sorry that you are dealing with a recurrence -- whether we call it a relapse or something else. Please keep us updated on how the meds are working for you.
I'm on my second round of dealing with myeloma -- IgG/Lambda. For the past year and a half, Velcade alone has kept it stable but I know the day is coming when the test results are going to show Velcade is no longer working, and I will need an alternative treatment. Or maybe adding dex and once again "enjoying" being wide awake in the middle of the night.
I agree with your very articulately worded concerns about people, especially "newbies," posting test results and wanting answers. That's their oncologist's job, not ours, although members of the Beacon, such as the always well-informed MultiBilly, can at least give them food for thought and questions to ask.
Speaking of questions, I, too have access to a portal to get my test results. I find it to be very helpful because I have already looked at the results before I speak to my oncologist and am ready with questions. And sometimes point out things to him.
Keeping you in my prayers, Eric.
Dana A
I'm so sorry that you are dealing with a recurrence -- whether we call it a relapse or something else. Please keep us updated on how the meds are working for you.
I'm on my second round of dealing with myeloma -- IgG/Lambda. For the past year and a half, Velcade alone has kept it stable but I know the day is coming when the test results are going to show Velcade is no longer working, and I will need an alternative treatment. Or maybe adding dex and once again "enjoying" being wide awake in the middle of the night.
I agree with your very articulately worded concerns about people, especially "newbies," posting test results and wanting answers. That's their oncologist's job, not ours, although members of the Beacon, such as the always well-informed MultiBilly, can at least give them food for thought and questions to ask.
Speaking of questions, I, too have access to a portal to get my test results. I find it to be very helpful because I have already looked at the results before I speak to my oncologist and am ready with questions. And sometimes point out things to him.
Keeping you in my prayers, Eric.
Dana A
-
darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Importance of seeing treating doctor about lab results
Hello, All.
This was a long and detailed thread. Freedom of Speech! As we used to say growing up in NYC (at least in my neighborhood): "Its a free country".
I wanted to say that I agree with Eric's final paragraph 200%. When you are writing back to a Newbie's question, you should consider that at the earliest stages of dealing with multiple myeloma, you could be easily confused. You wan to give basic, simple facts to help them get up to speed. If a newbie posts test results, I don't blame them, and I do not think Eric does either. Its some of the responses to the newbies that cause me the concern.
Trying to impose your own opinion or prejudice on another person, at this stage, is an ego trip. I have in my view seen this occur on several occasions. I think back when I have asked for help in the past. If you want to help, do so to the best of your ability. If cannot help, keep your mouth shut. If you are concerned with just propping up your own ego, you should try and kick yourself in the rear end, because if I was there, that is what I would probably do.
In an open forum like this, we may never get to the "ideal". I am sure that I have said some things that are debatable, and that others have conscientiously disagreed with. If someone has some better or new information to correct me, I will be happy to hear that. But as a doctor once told us: "Don't believe everything you read about multiple myeloma on the internet.
Best of luck and Regards to all.
This was a long and detailed thread. Freedom of Speech! As we used to say growing up in NYC (at least in my neighborhood): "Its a free country".
I wanted to say that I agree with Eric's final paragraph 200%. When you are writing back to a Newbie's question, you should consider that at the earliest stages of dealing with multiple myeloma, you could be easily confused. You wan to give basic, simple facts to help them get up to speed. If a newbie posts test results, I don't blame them, and I do not think Eric does either. Its some of the responses to the newbies that cause me the concern.
Trying to impose your own opinion or prejudice on another person, at this stage, is an ego trip. I have in my view seen this occur on several occasions. I think back when I have asked for help in the past. If you want to help, do so to the best of your ability. If cannot help, keep your mouth shut. If you are concerned with just propping up your own ego, you should try and kick yourself in the rear end, because if I was there, that is what I would probably do.
In an open forum like this, we may never get to the "ideal". I am sure that I have said some things that are debatable, and that others have conscientiously disagreed with. If someone has some better or new information to correct me, I will be happy to hear that. But as a doctor once told us: "Don't believe everything you read about multiple myeloma on the internet.
Best of luck and Regards to all.
-
JPC - Name: JPC
21 posts
• Page 2 of 3 • 1, 2, 3