Hi everyone,
I'm so pleased to have found this forum. My name is Jim, 56 year old from Sydney, Australia (hence the OZ Jim nickname!)
I'm newly diagnosed and having second thoughts about starting induction therapy. The plan is 4 cycles of CyBorD (cyclophosphamide, Velcade, and dex), with high-dose therapy and an autologous stem cell transplant (ASCT) to follow. Plus complementary bisphosphonate therapy and monthly immunoglobulin infusions.
My concern is that that the treatment will be much worse than current symptoms.
At present I only have some mild rib pain. No anaemia, renal or calcium issues.
Luckily, a routine medical picked up high protein in the blood tests and a perceptive GP linked that with the rib pain to recommend testing for myeloma.
I've had all the blood and urine tests, bone marrow biopsy, full body X-rays and chest CT scan.
I'm IgG kappa, immunoglobulin G is 34.87 g/L (3487 mg/dL), Beta2 is 1.6 mg/L, kappa:lambda ratio 46.6, 15% plasma in bone marrow.
There is only one bone lesion identified (21 multiple myeloma) so far, from the CT scan, but no MRI to date.
So, if it wasn't for the single bone lesion, I'd be smoldering rather than active (so I believe).
Feeling lucky we've caught this so early, but given I'm not experiencing any significant pain or other symptoms, I'm wondering If anyone can point me to any research on starting treatment with only one bone lesion and no other CRAB symptoms.
It's a steep learning curve!
Cheers,
Jim
Forums
7 posts
• Page 1 of 1
Re: Newly diagnosed - should I start induction therapy?
I am sorry to hear about your diagnosis, Jim. You ask a very pertinent question, one that hounds clinicians and patients alike: What is the optimal time to commence therapy for myeloma?
Before we can specifically answer your question, it would be best to get some additional information.
By the new 2014 definition of multiple myeloma, presence of even a single lytic lesion on a CT scan would categorize your myeloma as active rather than smoldering. But in your case only a chest CT scan, rather than a whole body CT scan, was performed.
As you have noted, your skeletal X-rays were normal (including ribs, I presume), but the CT scan of the chest picked up a single lesion. We don't know how many other lesions, if any, are missed by the skeletal survey (X rays) that you had. Therefore, it would be best to get a more sensitive test, such as low-dose whole body skeletal CT scan. The PET-CT (if available) would be more helpful than CT alone, especially if only a single lesion is detected. Detection of an FDG avid area on the PET with evidence of underlying bone destruction on the CT portion of the test would suggest that treatment is required.
The 2014 paper with the revised International Myeloma Working Group (IMWG) criteria for the diagnosis of multiple myeloma states,
Therefore, it would be best to further characterize the extent of the damage to the bones before initiation of chemotherapy.
Additionally, I would agree with monthly bisphosphonates plus calcium and vitamin D, but would suggest avoiding IVIG infusions, unless you are plagued with recurrent infections.
Before we can specifically answer your question, it would be best to get some additional information.
By the new 2014 definition of multiple myeloma, presence of even a single lytic lesion on a CT scan would categorize your myeloma as active rather than smoldering. But in your case only a chest CT scan, rather than a whole body CT scan, was performed.
As you have noted, your skeletal X-rays were normal (including ribs, I presume), but the CT scan of the chest picked up a single lesion. We don't know how many other lesions, if any, are missed by the skeletal survey (X rays) that you had. Therefore, it would be best to get a more sensitive test, such as low-dose whole body skeletal CT scan. The PET-CT (if available) would be more helpful than CT alone, especially if only a single lesion is detected. Detection of an FDG avid area on the PET with evidence of underlying bone destruction on the CT portion of the test would suggest that treatment is required.
The 2014 paper with the revised International Myeloma Working Group (IMWG) criteria for the diagnosis of multiple myeloma states,
When only one osteolytic bone lesion is seen in the presence of 10% or more clonal plasma cells, no clear indication is present for systemic therapy if no other criteria are met for active myeloma, and further thought is needed. This circumstance is rare, and we recommend that patients could be given radiation therapy and observed. Clinical trials to determine the value of adjuvant systemic therapy for these patients are being planned.
Therefore, it would be best to further characterize the extent of the damage to the bones before initiation of chemotherapy.
Additionally, I would agree with monthly bisphosphonates plus calcium and vitamin D, but would suggest avoiding IVIG infusions, unless you are plagued with recurrent infections.
-
Dr. Prashant Kapoor - Name: Prashant Kapoor, M.D.
Beacon Medical Advisor
Re: Newly diagnosed - should I start induction therapy?
Hi Jim,
Just to follow up briefly on Dr. Kapoor's posting, you can find a summary of the new IMWG diagnostic criteria for active / symptomatic multiple myeloma, smoldering myeloma, MGUS, and solitary plasmactyomas in this Beacon news article:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
Just to follow up briefly on Dr. Kapoor's posting, you can find a summary of the new IMWG diagnostic criteria for active / symptomatic multiple myeloma, smoldering myeloma, MGUS, and solitary plasmactyomas in this Beacon news article:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
Re: Newly diagnosed - should I start induction therapy?
Dear Dr. Kapoor and Beacon Staff.
I appreciate your insights into the new diagnostic criteria. I feel I can better discuss my diagnosis with my physician now.
Thanks,
Jim
I appreciate your insights into the new diagnostic criteria. I feel I can better discuss my diagnosis with my physician now.
Thanks,
Jim
Re: Newly diagnosed - should I start induction therapy?
I have multiple myeloma and have had it for about years. I have been treated with Velcade, Revlimid, and dexamethasone, a multiple myeloma experimental vaccine, and an autologous stem cell transplant.
Your criteria that you do not have any multiple myeloma symptoms so you do not need treatment is FALSE. You need treatments when your blood numbers, bone marrow, kidney damage, or bone lesions tell you that you need treatment. I have had NO physical SYMPTOMS but have been treated for over 5 years due to my blood numbers.
In multiple myeloma, there are generally no symptoms. I only feel bad (i.e. symptoms) because of the treatments, not the disease. That is a characteristic of multiple myeloma (unless you are so unlucky as to have severe bone lesions or kidney problems).
Good luck.
Your criteria that you do not have any multiple myeloma symptoms so you do not need treatment is FALSE. You need treatments when your blood numbers, bone marrow, kidney damage, or bone lesions tell you that you need treatment. I have had NO physical SYMPTOMS but have been treated for over 5 years due to my blood numbers.
In multiple myeloma, there are generally no symptoms. I only feel bad (i.e. symptoms) because of the treatments, not the disease. That is a characteristic of multiple myeloma (unless you are so unlucky as to have severe bone lesions or kidney problems).
Good luck.
-
John-Y
Re: Newly diagnosed - should I start induction therapy?
Hi Jim,
I live in Aus, am 55, and have just gone through this very treatment. My multiple myeloma caused anaemia in December 2014 (after smoldering for 4 years) - hence action was required. If your doctors want to start induction therapy, it is for a reason. Ask them what that reason is. In Aus (unlike America) we do not have to pay for our treatment; so treatment is not given unless warranted.
Another lady I met, the same age as me, had lytic lesions, and had an auto SCT last year. She is going great guns!
As far as the treatment, the recovery from the SCT can be a bit ordinary, but you get over it in a few months. The induction therapy made me feel the best I had in years!!
Cheers,
Sally.
I live in Aus, am 55, and have just gone through this very treatment. My multiple myeloma caused anaemia in December 2014 (after smoldering for 4 years) - hence action was required. If your doctors want to start induction therapy, it is for a reason. Ask them what that reason is. In Aus (unlike America) we do not have to pay for our treatment; so treatment is not given unless warranted.
Another lady I met, the same age as me, had lytic lesions, and had an auto SCT last year. She is going great guns!
As far as the treatment, the recovery from the SCT can be a bit ordinary, but you get over it in a few months. The induction therapy made me feel the best I had in years!!
Cheers,
Sally.
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Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
Re: Newly diagnosed - should I start induction therapy?
Hi Sally and John,
Thanks so much for your posts.
I'm just waiting on a PET-CT scan (self funded) to confirm the lesions and a second opinion, and then expect to start induction therapy soon.
I appreciate how lucky I am to be in Australia where leading therapy is provided under our universal healthcare system.
Best wishes to you both,
Jim.
Thanks so much for your posts.
I'm just waiting on a PET-CT scan (self funded) to confirm the lesions and a second opinion, and then expect to start induction therapy soon.
I appreciate how lucky I am to be in Australia where leading therapy is provided under our universal healthcare system.
Best wishes to you both,
Jim.
7 posts
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