I am newly diagnosed with multiple myeloma. pretty sure my protein is around 2.6 or 3.0 (g/dL), and had very little explanation from my doctor. She simply said 24%, one lesion in my head and nowhere else. She doesn’t see any reason to have a PET scan. Wants me to take three drugs, the common ones that start with R, D and V. And have a transplant in four months. Assured me that things have come along way with this problem and sent me on my way. Wants me to see the transplant specialist soon. And that’s it.
I obviously have a lot of questions but I’m curious why she said that she doesn’t see any reason for me to have a PET scan when it seems like a lot of people have them. Seems like it’s part of the diagnosis.
Thank you so very much!
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Re: No PET scan at diagnosis - is that okay?
Hi Smile,
First, I would want to have a PET/CT to verify that the lesion in your skull is truly an active myeloma lesion and not something else such as a venous lake or benign cyst. See these threads that Cheryl put together on an earlier post about how these things can masquerade as lytic lesions:
https://myelomabeacon.org/forum/can-a-skull-lesion-be-considered-benign-t221.html#p12134
https://myelomabeacon.org/forum/why-do-bone-marrow-biopsy-t3870.html#p21973
https://myelomabeacon.org/forum/solitary-bone-plasmacytoma-multiple-myeloma-t4684.html#p27299
Secondly, I would also want a PET/CT to see if there are any other areas in your skeleton that might have lytic activity that an xray would not pick up, as well as to have a baseline PET/CT for comparison at a later date. Xrays are not the best at picking up smaller focal and lytic lesions. See this discussion on the pros and cons of the various imaging modalities used on myeloma patients:
https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
Your doctor's attitude and lack of communication is not necessarily a reason to seek another doctor in of itself, especially if she is a good myeloma specialist that is up on the latest treatment modalities and works with a lot of myeloma patients. However, I think it's important that a doctor take the time to carefully answer my questions and explain everything to me, especially with a disease like myeloma.
I also think that it's always a good idea to to have a second opinion before initiating myeloma treatment, regardless of any issues that you might have with your initial doctor - but that's just my personal opinion. Given your interest in getting a PET/CT, this may be another good reason to get a second opinion.
Having said all this, RVd induction therapy followed by a transplant is a well-established combination that is commonly recommended for the initial treatment of myeloma.
If you let us know what city your are in, folks on this forum can make some recommendations for where to find some myeloma specialists.
First, I would want to have a PET/CT to verify that the lesion in your skull is truly an active myeloma lesion and not something else such as a venous lake or benign cyst. See these threads that Cheryl put together on an earlier post about how these things can masquerade as lytic lesions:
https://myelomabeacon.org/forum/can-a-skull-lesion-be-considered-benign-t221.html#p12134
https://myelomabeacon.org/forum/why-do-bone-marrow-biopsy-t3870.html#p21973
https://myelomabeacon.org/forum/solitary-bone-plasmacytoma-multiple-myeloma-t4684.html#p27299
Secondly, I would also want a PET/CT to see if there are any other areas in your skeleton that might have lytic activity that an xray would not pick up, as well as to have a baseline PET/CT for comparison at a later date. Xrays are not the best at picking up smaller focal and lytic lesions. See this discussion on the pros and cons of the various imaging modalities used on myeloma patients:
https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
Your doctor's attitude and lack of communication is not necessarily a reason to seek another doctor in of itself, especially if she is a good myeloma specialist that is up on the latest treatment modalities and works with a lot of myeloma patients. However, I think it's important that a doctor take the time to carefully answer my questions and explain everything to me, especially with a disease like myeloma.
I also think that it's always a good idea to to have a second opinion before initiating myeloma treatment, regardless of any issues that you might have with your initial doctor - but that's just my personal opinion. Given your interest in getting a PET/CT, this may be another good reason to get a second opinion.
Having said all this, RVd induction therapy followed by a transplant is a well-established combination that is commonly recommended for the initial treatment of myeloma.
If you let us know what city your are in, folks on this forum can make some recommendations for where to find some myeloma specialists.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: No PET scan at diagnosis - is that okay?
My husband was diagnosed when x-ray of his spine and CT scan showed lytic lesions throughout his thoracic spine and iliac bone (he had kyphoplasty and radiation in response to the findings).
He did not have his first PET until three years after diagnosis (just recently); he had his first skeletal survey 1 1/2 years after diagnosis.
He did not have his first PET until three years after diagnosis (just recently); he had his first skeletal survey 1 1/2 years after diagnosis.
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: No PET scan at diagnosis - is that okay?
Thank you so much for your awesome reply! My doctor is not a myeloma specialist. I am located in Kansas City, Missouri. I have been considering seeing a specialist as well because I really don’t have many details at all. I don’t plan on starting treatment for at least three weeks so I’m not sure if I can see a specialist that soon or not, but I would like to.
Re: No PET scan at diagnosis - is that okay?
I think that you should definitely see a myeloma specialist. With the complexity of the disease and the pace of advances in treatments, it is important to have an expert in the disease in your corner.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: No PET scan at diagnosis - is that okay?
Hi Smile,
I totally agree with Andrew. If you need some help finding a specialist, see this link:
https://myelomabeacon.org/resources/treatment-centers/
If you are looking for a specialist in Missouri, I believe that Dr. Ravi Vij, who is a myeloma specialist, is at the Washington University School of Medicine in St. Louis. I personally think that it is always worth a road trip to seek out a specialist before initiating treatment.
I totally agree with Andrew. If you need some help finding a specialist, see this link:
https://myelomabeacon.org/resources/treatment-centers/
If you are looking for a specialist in Missouri, I believe that Dr. Ravi Vij, who is a myeloma specialist, is at the Washington University School of Medicine in St. Louis. I personally think that it is always worth a road trip to seek out a specialist before initiating treatment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: No PET scan at diagnosis - is that okay?
Thanks for the specialist and treatment center information. I heard there was a doctor with expertise where I go, which is the University of Kansas Medical Center. I have an appointment this Tuesday because they want me to at least be tested in case I need a stem cell transplant, and I’m going to find out more in regard to whether or not this person is a specialist or if I can see one there. After that, I will consider a specialist in another area, so thank you so much for the information.
7 posts
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