I decided to post the following in a new subject because I'm really not sure where it fits ...
Dr. Cohen or anyone who can help!
I sent a brief fax to my mother's cancer center requesting the following information from her doctor if and when he had time to respond:
Beta 2 Microglobulin level; C reactive protein; Plasma cell labeling index, and calcium level.
I received a response that her Dr. said the CRP and PCLI tests are not needed and that her B2M is 6.4. I already know that her BETA GLOBULIN from SPEP is 6.4, and this is the value they keep giving me when I ask for B2M. I guess it's possible that the two values could be the same, but I'm skeptical (probably wishfully because I don't want her B2M to be 6.4!) Also, is there any reason WHY CRP and PCLI wouldn't be "needed" or beneficial??
I'm in tears with frustration! Obviously I want my mother to have the best care possible and am becoming more and more concerned based on the responses I'm receiving from her current care provider.
Thank you so much for any response/input! I truly don't know what I would do without the "Beacon"!
Lisa
Okay ... just received a call from the Dr. himself. He confirmed that results for her B2M are not in yet and added that CRP and PCLI are not necessary because it would make no difference in her treatment. He also told me, "At some point you're going to have to just trust the doctor" (meaning himself, I assume). I may have taken it the wrong way, but it sounded to me as though he was being a bit condescending. Believe me, I don't even PRESUME to know as much as he does about myeloma! A month or so ago, I knew absolutely nothing!! BUT, God gave me a mind, (well at least half of one!;) and I am compelled by deep love and devotion to learn as much as I can to help ensure that Mom receives the best possible treatment/care. At our first visit to discuss treatment, her Dr. basically told us "how" he was going to treat Mom, but neglected to explain "why" or even discuss other options. Since then, 99% of what I've learned about multiple myeloma has been from this wonderful website!! I understand that all doctors are extremely busy and stressed, but It is difficult for me to "trust" a doctor with my mother's health and life when he seems reluctant to answer questions and not open to discussions??
Mostly just venting, but please feel free to offer opinions as to whether I should be concerned or am just "making a mountain out of a mole hill"!
Thank you so much.
Forums
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Lisa B. - Name: Lisa B.
- Who do you know with myeloma?: My mother, Barbara Henson
- When were you/they diagnosed?: 10-28-11
- Age at diagnosis: 71
Re: Frustrated and confused
I think you should immediately get a second opinion ot third opinion from a myeloma expert. You can contact the International Myeloma Foundation's hotline. They are great. They will help you locate the appropriate facility for your region. Your mother is entitled to be treated with respect at all times. Get that second opinion and go with the myeloma expert you whom you feel comfortable. Good luck.
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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: Frustrated and confused
Thank you, Terry! I appreciate your reply and will do just that!
I would also appreciate responses to the following questions from anyone in the Myeloma community ...
Do you feel comfortable asking your doctor questions and does he/she take time to give you thorough and satisfactory answers?
Does your doctor discuss different treatment options and allow you to make the final decision based on your personal priorities (such as quality of life versus overall length of survival) and goals?
Do you believe that your doctor is "up to date" on the most recent myeloma discoveries, studies and treatment options?
.... also, for any doctors who wish to respond ...
How do you feel about patients and/or their family members asking questions during a visit?
Do you encourage questions and input from your patients?
Do you have a problem with a patient or family member requesting copies of all labwork?
Thanks again and much love to everyone!
Lisa
I would also appreciate responses to the following questions from anyone in the Myeloma community ...
Do you feel comfortable asking your doctor questions and does he/she take time to give you thorough and satisfactory answers?
Does your doctor discuss different treatment options and allow you to make the final decision based on your personal priorities (such as quality of life versus overall length of survival) and goals?
Do you believe that your doctor is "up to date" on the most recent myeloma discoveries, studies and treatment options?
.... also, for any doctors who wish to respond ...
How do you feel about patients and/or their family members asking questions during a visit?
Do you encourage questions and input from your patients?
Do you have a problem with a patient or family member requesting copies of all labwork?
Thanks again and much love to everyone!
Lisa
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Lisa B. - Name: Lisa B.
- Who do you know with myeloma?: My mother, Barbara Henson
- When were you/they diagnosed?: 10-28-11
- Age at diagnosis: 71
Re: Frustrated and confused
I ask for a printed copy of my partner's blood test and urine results every visit and maintain a spreadsheet of them myself. I ask lots of questions. At first the Dr didn't like it but since I researched quite indepth and got better at understanding the meaning of the results, he's actually been quite good and seems to respect the fact that I've looked at the clinical trial results and every bit of information I can - mostly from the myeloma beacon site. He tells us what treatment options there are. He'll say what he wants to do. We don't make a decision on the spot. I go home and research first. E.g he wanted to start him on Thalidomide. He felt fine, his paraprotein level was climbing but by increments of 1, so we didn't start for a while. I wanted him to go straight to Velcade. He couldn't because the spike wasn't big enough. So he went on Thalidomide first for six weeks. Stopped. A few months later, he can now get the Velcade. The doctor wanted to do IV. I saw the research on this site and the quality of life seemed to be better with the subcutenous and the difference in effectiveness minor, so we opted for quality of life and less side effects. My partner is a musician outside of his normal work and plays regularly, so the PN side effect was a big issue.
So yes. If a doctor is not prepared to allow you to ask questions, change doctors. Like they say, every person is different and what is most important to every person is different. You feel what's happening in your body. Our doctor is well respected in his field and quite up to date but he's not prepared to try new things and prefers to stick to tried and tested means unless we specifically state we want otherwise. If we want different, he's prepared to allow it if he thinks it won't be detrimental. He is the one that knows the big picture of what the future options are and if anything you want to try now will effect you being able to take those future options so two way communication is important to weight up the options.
So yes. If a doctor is not prepared to allow you to ask questions, change doctors. Like they say, every person is different and what is most important to every person is different. You feel what's happening in your body. Our doctor is well respected in his field and quite up to date but he's not prepared to try new things and prefers to stick to tried and tested means unless we specifically state we want otherwise. If we want different, he's prepared to allow it if he thinks it won't be detrimental. He is the one that knows the big picture of what the future options are and if anything you want to try now will effect you being able to take those future options so two way communication is important to weight up the options.
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
Re: Frustrated and confused
Hi Lisa,
I'm very sorry to read about your frustration.
I'm not sure if you've already seen this, but the very first Weekly Poll question here in the Beacon's discussion forums was about the issue of patients' involvement with their treatment decisions. You may find the poll results and related discussion relevant to some of your questions.
Here's a link to the thread with the poll results and related postings:
https://myelomabeacon.org/forum/weekly-poll-your-involvement-in-treatment-decisions-t609.html
All the best,
Boris.
I'm very sorry to read about your frustration.
I'm not sure if you've already seen this, but the very first Weekly Poll question here in the Beacon's discussion forums was about the issue of patients' involvement with their treatment decisions. You may find the poll results and related discussion relevant to some of your questions.
Here's a link to the thread with the poll results and related postings:
https://myelomabeacon.org/forum/weekly-poll-your-involvement-in-treatment-decisions-t609.html
All the best,
Boris.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Frustrated and confused
Laetetia - Your input is fantastic and I agree with and truly appreciate all that you said. Thank you and I wish all the best for you and your partner. Look forward to keeping up with you on MB! 
Boris - WOW! I had not seen the poll, and thank you so much for pointing it out. Things like this convince me that the compassionate/dedicated staff of the Myelome Beacon are continuously anticipating the MANY questions, concerns, and needs of multiple myeloma patients and those who love them. The "Beacon" is aptly named, as it "guides and offers support, light, and hope" in what can be a very dark, confusing, and frightening world of multiple myeloma. I am eternally grateful and would give you all big hugs if I could!! =) Thank you!
Boris - WOW! I had not seen the poll, and thank you so much for pointing it out. Things like this convince me that the compassionate/dedicated staff of the Myelome Beacon are continuously anticipating the MANY questions, concerns, and needs of multiple myeloma patients and those who love them. The "Beacon" is aptly named, as it "guides and offers support, light, and hope" in what can be a very dark, confusing, and frightening world of multiple myeloma. I am eternally grateful and would give you all big hugs if I could!! =) Thank you!
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Lisa B. - Name: Lisa B.
- Who do you know with myeloma?: My mother, Barbara Henson
- When were you/they diagnosed?: 10-28-11
- Age at diagnosis: 71
Re: Frustrated and confused
Hi Laetetia!
Awesome post!!
Quality of life is everything!!
Stick to your guns and keep being pro-active.
I am happy that you had a good outcome. The Myeloma Beacon is a great spot for getting information that helps in the decision making process when it comes to therapeutic options.
I can not stress enough STICK to your GUNS!..especially when it comes to protesome inhibitors and the PN they can cause that is particularly impt for your partner as a musician.
Wishing you lots of blessings and a Happy TG!!
Awesome post!!
Quality of life is everything!!
Stick to your guns and keep being pro-active.
I am happy that you had a good outcome. The Myeloma Beacon is a great spot for getting information that helps in the decision making process when it comes to therapeutic options.
I can not stress enough STICK to your GUNS!..especially when it comes to protesome inhibitors and the PN they can cause that is particularly impt for your partner as a musician.
Wishing you lots of blessings and a Happy TG!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Frustrated and confused
Dear Lisa,
I am glad you have found your experience with the Myeloma Beacon to be a positive one!
From my perspective, getting patient and family member input is critical. This is a complicated disease but one where treatment options have significantly improved and grown in number. There are a lot of good treatment choices out there, and the goals and value set that a patient brings to the table help guide the decision making process down the right path.
As far as labs are concerned, I do not think that there are many doctors out there that would be uncomfortable providing that information to patients. If a patient's health information is going to be provided to someone other than the patient, we need to get the blessing of the patient first. My guess is that the people who your mother's doctor charged with the task of getting you the beta-2 microglobulin testing did confuse the beta globin issue -- I do not think that your doctor would have confused that point.
The beginning of this process is often terrifying. Things will get better as you learn more. Let us know if we can help in any way. Best of luck! We are all cheering on your mother!
Pete V.
I am glad you have found your experience with the Myeloma Beacon to be a positive one!
From my perspective, getting patient and family member input is critical. This is a complicated disease but one where treatment options have significantly improved and grown in number. There are a lot of good treatment choices out there, and the goals and value set that a patient brings to the table help guide the decision making process down the right path.
As far as labs are concerned, I do not think that there are many doctors out there that would be uncomfortable providing that information to patients. If a patient's health information is going to be provided to someone other than the patient, we need to get the blessing of the patient first. My guess is that the people who your mother's doctor charged with the task of getting you the beta-2 microglobulin testing did confuse the beta globin issue -- I do not think that your doctor would have confused that point.
The beginning of this process is often terrifying. Things will get better as you learn more. Let us know if we can help in any way. Best of luck! We are all cheering on your mother!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Frustrated and confused
Dr. Voorhees,
You are so kind to take the time to respond (at 3:20 am!?! bless your heart!!), and I am very appreciative! You're also absolutely right about the weeks after initial diagnosis being "terrifying"! I honestly panicked when I thought Mom's doctor didn't know the difference between beta globulin and B2M, but you are correct once again - it was the nurses who were confused!
Some say that "ignorance is bliss", but I've always believed that, at least in most cases, "knowledge is power"! ... and in the battle against multiple myeloma, I strongly believe that we need to "know our enemy" and become familiar with ALL the weapons at our disposal! I guess I just want to learn everything there is to know about this evil disease that is affecting my sweet mother in as short a time as possible.
I do hope Mom's doctor will be patient and understanding regarding my questions because that will help me learn whether Mom and I can trust him with her care. To be fair, I've only met with him once, and he may have been particularly busy that day. Hopefully, he'll have more time for discussion and questions at our next visit a week from today!
In the meantime, I'll be spending LOTS of time visiting my new "favorite website"
, thanking God for the good people who produce and support it, and praying for everyone in Myelomaville!
Love, peace, and blessings,
Lisa
You are so kind to take the time to respond (at 3:20 am!?! bless your heart!!), and I am very appreciative! You're also absolutely right about the weeks after initial diagnosis being "terrifying"! I honestly panicked when I thought Mom's doctor didn't know the difference between beta globulin and B2M, but you are correct once again - it was the nurses who were confused!
Some say that "ignorance is bliss", but I've always believed that, at least in most cases, "knowledge is power"! ... and in the battle against multiple myeloma, I strongly believe that we need to "know our enemy" and become familiar with ALL the weapons at our disposal! I guess I just want to learn everything there is to know about this evil disease that is affecting my sweet mother in as short a time as possible.
I do hope Mom's doctor will be patient and understanding regarding my questions because that will help me learn whether Mom and I can trust him with her care. To be fair, I've only met with him once, and he may have been particularly busy that day. Hopefully, he'll have more time for discussion and questions at our next visit a week from today!
In the meantime, I'll be spending LOTS of time visiting my new "favorite website"
, thanking God for the good people who produce and support it, and praying for everyone in Myelomaville!Love, peace, and blessings,
Lisa
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Lisa B. - Name: Lisa B.
- Who do you know with myeloma?: My mother, Barbara Henson
- When were you/they diagnosed?: 10-28-11
- Age at diagnosis: 71
Re: Frustrated and confused
The 3:20 am reply was a show of solidarity for those suffering sleepless nights on dexamethasone!
Pete V.
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
12 posts
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