Ok, I'm going in on Tuesday to have 'the discussion.' with the hematologist/oncologist. . All the tests are done and all but one are in...and with an M-spike, 75% plasma cells in the bone marrow, anemia(mild) and a high beta-2-count, I'm not expecting a 'you're fine, come see me in six months" spiel. At least, I don't think I am.
I don't know what to expect, frankly, given this particular doctor's lack of communication skills!
How did you prepare for this discussion? What should I take with me/ask? My daughter will be with Did you get a second opinion? How do you ask for that?
What do I do now, in other words?
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: The verdict....
Treatment is usually started when you have CRAB symptoms....do you have high calcium, renal problems and bone involvement? You mention mild anemia..... Is your hemoglobin 2 grams lower than the lowest figure of the normal range? Obviously, you have a high level of plasma cell infiltration but, perhaps, you may not need treatment right away and will have time for a second or third opinion.
You mention this doctor has a lack of communication skills. If this is not someone you trust with your life, please find a myeloma expert who will not be annoyed with your questions and will spend time with you fully outlining the plan of action, etc. P.S. I would be making the appointment for the second opinion now. Why wait?
You mention this doctor has a lack of communication skills. If this is not someone you trust with your life, please find a myeloma expert who will not be annoyed with your questions and will spend time with you fully outlining the plan of action, etc. P.S. I would be making the appointment for the second opinion now. Why wait?
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: The verdict....
I would suggest writing down all of your questions in detail, as I find that I get sidetracked by unexpected or new things the doc says every time I meet with him. I would ask him about the future as well. If treatment isn't required just now, just when does he think it might be and what is his philosophy on likely courses of treatment (chemo only, chemo followed by SCT, why not chemo only, which chemo mix,his experience with peripheral neuropathy and how he deals with it and avoids it with his patients, etc). I would also ask him what are the top 5-6 markers he is concerned with and have him explain each one to you. I'd also ask about the anemia and if there is anything that can be done about that independent of multiple myeloma treatment. I'd also ask if he they are just going to monitor to you, how frequently they would suggest monitoring you and which tests you will be getting going forward and how you can easily get copies of those tests (i.e. urine/serum tests every 2-3 months, xrays every 6 months, etc)
Terry is right. You may be pleasantly surprised that you might not need to start treatment if your CRAB levels don't warrant it. In any case, I would also get a second opinion regardless of the communication issue with the doc. I have great respect for my first diagnosing oncologist and still utilize him as my primary multiple myeloma doctor, but I got a lot of great info and insights (and different interpretations of my data) from the additional docs I talked to, and they all share info regarding my situation.
Good luck
Terry is right. You may be pleasantly surprised that you might not need to start treatment if your CRAB levels don't warrant it. In any case, I would also get a second opinion regardless of the communication issue with the doc. I have great respect for my first diagnosing oncologist and still utilize him as my primary multiple myeloma doctor, but I got a lot of great info and insights (and different interpretations of my data) from the additional docs I talked to, and they all share info regarding my situation.
Good luck
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: The verdict....
Hi Dianaiad,
I agree with Multibilly - go in there with your questions written down in detail. Ensure you have space to write down the answers. If your daughter is going with you get her to take a copy of the questions as well with space for her to write down as well. Four ears are better than two and sometimes the little details that are missed by one person are picked up by the other.
If you are still unhappy with your doctor get a 2nd or 3rd opinion. All the best for Tuesday.
Libby
I agree with Multibilly - go in there with your questions written down in detail. Ensure you have space to write down the answers. If your daughter is going with you get her to take a copy of the questions as well with space for her to write down as well. Four ears are better than two and sometimes the little details that are missed by one person are picked up by the other.
If you are still unhappy with your doctor get a 2nd or 3rd opinion. All the best for Tuesday.
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: The verdict....
...is officially Multiple Myeloma, stage 2. Damn.
I was really hoping that everybody around me was right, and I was being hypochondriacal and crying wolf: watching my family members go from 'pooh, pooh, you are just imagining things' to shock and tears was, well, not a bit worth the vindication of being right, y'know?
So I'm sitting there, comforting my daughter and my parents and trying to run interference with my other daughters who were texting all these questions from Utah...and now I have to write a very long e-mail to let everybody know who needs/wants/is worried....
It is very strange. I was expecting this, No surprise...not even the staging. I was expecting it and it didn't make me weepy. I was calm...asking all the right questions, actually impressing the doctor (who had asked a nurse to sit with me for emotional support..and dismissed her within three minutes of the beginning of the conversation). Before very long he was talking to me as if I were a medical student or a colleague, not a patient. We were discussing things like the advisability of IV vs 'a shot' for ...I forget which one of the medications is less likely to result in neuropathy with 'a shot' rather than an infusion, and how confused he felt when my free light chain assay come back as completely normal when I obviously had 'such an aggressive form of this disease." He started talking about how unusual it was for me to have such a high protein count and plasma cell bone marrow count (75%) and not have any visible damage on my x-rays...and an absolutely normal light chain ratio. He talked about my FISH study and how it wasn't good...wants me on an expedited bone marrow transplant program and a more aggressive chemotherapy regimen...
All this, because I was slightly anemic last November.
Intellectually, I understand all this. Intellectually, I accept it. Viscerally?
Not so much.
I just wanted to thank you all for helping me handle this so far. Now...a deep breath....
I have a great many e-mails to write, a great many people to calm down, and perhaps, later this evening, I'll go have a quiet bout of hysterics.
Maybe.
Thanks....
Diana
I was really hoping that everybody around me was right, and I was being hypochondriacal and crying wolf: watching my family members go from 'pooh, pooh, you are just imagining things' to shock and tears was, well, not a bit worth the vindication of being right, y'know?
So I'm sitting there, comforting my daughter and my parents and trying to run interference with my other daughters who were texting all these questions from Utah...and now I have to write a very long e-mail to let everybody know who needs/wants/is worried....
It is very strange. I was expecting this, No surprise...not even the staging. I was expecting it and it didn't make me weepy. I was calm...asking all the right questions, actually impressing the doctor (who had asked a nurse to sit with me for emotional support..and dismissed her within three minutes of the beginning of the conversation). Before very long he was talking to me as if I were a medical student or a colleague, not a patient. We were discussing things like the advisability of IV vs 'a shot' for ...I forget which one of the medications is less likely to result in neuropathy with 'a shot' rather than an infusion, and how confused he felt when my free light chain assay come back as completely normal when I obviously had 'such an aggressive form of this disease." He started talking about how unusual it was for me to have such a high protein count and plasma cell bone marrow count (75%) and not have any visible damage on my x-rays...and an absolutely normal light chain ratio. He talked about my FISH study and how it wasn't good...wants me on an expedited bone marrow transplant program and a more aggressive chemotherapy regimen...
All this, because I was slightly anemic last November.
Intellectually, I understand all this. Intellectually, I accept it. Viscerally?
Not so much.
I just wanted to thank you all for helping me handle this so far. Now...a deep breath....
I have a great many e-mails to write, a great many people to calm down, and perhaps, later this evening, I'll go have a quiet bout of hysterics.
Maybe.
Thanks....
Diana
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: The verdict....
Hi Diana,
I am so sorry you got the news. It takes me back almost 4 years ago..I can still picture pulling up to the "oncology" unit...just staring at that sign with disbelief.
I had (and still have) very minor symptoms too, so very similar to you.
Within a few months you'll have started the therapies and I'll bet you're in a better place mentally than you are now.
Most important advice--you are not in a hurry to make any decisions! Definitely get at least one or two other opinions on treatment options from myeloma specialists. Take your time deciding but once you do decide, "it's on", as they say.
One thing I would change in my own approach, is that I would not have let too many people outside of my family and close circle of friends know.
In the business world some doors close prematurely when people find out you have cancer.
But I think I'm different in that way than most patients.
Take care, Stann
I am so sorry you got the news. It takes me back almost 4 years ago..I can still picture pulling up to the "oncology" unit...just staring at that sign with disbelief.
I had (and still have) very minor symptoms too, so very similar to you.
Within a few months you'll have started the therapies and I'll bet you're in a better place mentally than you are now.
Most important advice--you are not in a hurry to make any decisions! Definitely get at least one or two other opinions on treatment options from myeloma specialists. Take your time deciding but once you do decide, "it's on", as they say.
One thing I would change in my own approach, is that I would not have let too many people outside of my family and close circle of friends know.
In the business world some doors close prematurely when people find out you have cancer.
But I think I'm different in that way than most patients.
Take care, Stann
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stann
Re: The verdict....
So sorry to hear your news, Diana. Very, very sorry.
As you will see here, though, there are plenty of people here with myeloma who are living very full lives. There was even a posting earlier today from a woman who has lived 24 years with the disease!
I agree with Stann that you should take some time to consider your options. Unless there's a really compelling reason to do so, don't let yourself be rushed into any final treatment decisions right now.
I would recommend you start a new forum thread titled something like "Newly diagnosed patient seeking advice", and then describe your diagnosis and ask everyone for their advice.
I know you will get tons of different advice. But you seem like the kind of person who prefers to have more information, rather than less.
I wish you and your family all the best.
As you will see here, though, there are plenty of people here with myeloma who are living very full lives. There was even a posting earlier today from a woman who has lived 24 years with the disease!
I agree with Stann that you should take some time to consider your options. Unless there's a really compelling reason to do so, don't let yourself be rushed into any final treatment decisions right now.
I would recommend you start a new forum thread titled something like "Newly diagnosed patient seeking advice", and then describe your diagnosis and ask everyone for their advice.
I know you will get tons of different advice. But you seem like the kind of person who prefers to have more information, rather than less.
I wish you and your family all the best.
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JimNY
Re: The verdict....
Hi Diana,
So sorry to hear your diagnosis. As you have probably already realized the myeloma beacon is a great place to post questions. Wishing you all the best.
Libby
So sorry to hear your diagnosis. As you have probably already realized the myeloma beacon is a great place to post questions. Wishing you all the best.
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: The verdict....
Terribly sorry about your news. But I'm glad you were able to have a frank, open discussion with your doc and that you now feel that he respects you.
I agree with JimNY to take some time and consider your options carefully, and to get a second opinion within a completely different organization on your treatment options (even if you do have to pay out of pocket for that second opinion).
There are lots of choices on which chemo and dosage you can utilize, as well as whether you want to do an SCT upfront or save it for later. In the end, you will end up needing to make a leap of faith on which LONG TERM path you choose, as you can't just plug your circumstances into a formula and have the optimal treatment plan pop out the other side.
The best way to do this is to thoroughly educate yourself on the tradeoffs of the various treatment plans, which will require a fair amount of reading, talking to various specialists and asking a lot of questions of the specialists and this forum.
The thread that JimNY is referring to is:
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
It's packed with a lot of good details.
Best of luck kiddo.
I agree with JimNY to take some time and consider your options carefully, and to get a second opinion within a completely different organization on your treatment options (even if you do have to pay out of pocket for that second opinion).
There are lots of choices on which chemo and dosage you can utilize, as well as whether you want to do an SCT upfront or save it for later. In the end, you will end up needing to make a leap of faith on which LONG TERM path you choose, as you can't just plug your circumstances into a formula and have the optimal treatment plan pop out the other side.
The best way to do this is to thoroughly educate yourself on the tradeoffs of the various treatment plans, which will require a fair amount of reading, talking to various specialists and asking a lot of questions of the specialists and this forum.
The thread that JimNY is referring to is:
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
It's packed with a lot of good details.
Best of luck kiddo.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: The verdict....
hi Dianalad, Sorry to hear that you are in Stage 2, but hopefully you can drop that back to a remission. good to know that you hAve such great family support.
I think that probably the oncologist was referring to Velcade, which can be given by infusion or sub cutaneously. I had mine by infusion and it worked really well but I had some minor neuropathy. more recently, a sub-Q stle of delivery has been developed to prevent neuropathy
best wishes to you and please keep us posted!
I think that probably the oncologist was referring to Velcade, which can be given by infusion or sub cutaneously. I had mine by infusion and it worked really well but I had some minor neuropathy. more recently, a sub-Q stle of delivery has been developed to prevent neuropathy
best wishes to you and please keep us posted!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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