Dear Mr. Emerson: Thank God I have found a site like yours. I suffer from light chain myeloma diagnosed in January 2023. For 10 months I have undergone chemotherapy with Bortezomib, Dexamethasone, Cyclophosphamide -this last one replaced by Lenalidomide for the last 3 months. So far the treatment has been a failure. No real improvement, just the side effects.
Therefore I have refused to continue with it. Now I am looking for other options. The problem is most alternative or non conventional treatments focus on the most common types of myeloma and not the one I suffer. Actually few sites and advisors deal with it.
IgM reaches its highest point with 21 mg/dl (40-230)
Creatinin 2.98 mg/dl (0.7-1.2) Compensated Jaffé
Glomerular filtration (MDRD) 21.2 ml/min/1.73m2
Hemoglobin 8 g/dl (14-17.5)
No need of dialysis until now.
5 blood transfusions as a whole while the chemotherapy was underway. The last one in October.
Normal levels for albumin and LDH.
FREE LIGHT CHAINS from June 2023
Free Lamda 507.80 mg/L (5.7-26.3)
Free Kappa 14.04 (3.3-19.4)
Kappa /Lambda 0.03 (0.26-1,85)
i think I must rectify a point. It would be wrong to assert that the chemotherapy has been a complete failure, but itts effectiveness has been unsatisfactory. Its too little for almost a year of treatment. A complete remission, likely put not certain, as things stand would require at least one more year.
I cannot stand the side effects-
- and particularly loss of memory and cognitive abilities.
No, not anymore.
I suffer from benign prostate hyperplasia and have worn a permanent urinary catheter for one-and- a- half- year.
Main symptoms are lack of vitality, weakness, slight lumbar pain, but I find it hard to stand for long. No pain in bones..
I hope curcumin help me to reduce free lambda chains.. I hope curcumin help me to beat this cancer.
What you are experiencing is embodied in an essay called Treatment of Myeloma- Cure vs. Control. I will link the essay below. The author is a MM specialist at the Mayo clinic in Rochester, MN. Dr. Vincent Rajkumar makes an argument for managing MM, not trying to cure it with high dose aggressive therapies.
Aggressive chemo may be doing more harm than good in your case. Conventional MM oncology too often takes an aggressive approach to all MM therapy. I don’t know how BPH affects your treatment but in my experience, your kidney involvement is equally as important in your survival as your MM is. Your aggressive induction chemotherapy may be further damaging your kidney health.
A maintenance dose of velcade (bortezomib) can improve your kidney function while managing your MM. With fewer side effects. I will link a study about this as well.
The question is then, can you work with your onc. to administer low doses of chemo that simply manage your MM (prevent MM damaging you) rather than insisting on curative therapies?
Curcumin has been shown to enhance the efficacy of velcade/bortezomib. I will link a study below.
What is Light Chain Myeloma?
Light chain myeloma, also known as light chain multiple myeloma or Bence Jones myeloma, is a subtype of multiple myeloma, which is a cancer of plasma cells. Plasma cells are a type of white blood cell that produces antibodies to help the body fight infections. In multiple myeloma, these plasma cells become cancerous and accumulate in the bone marrow, leading to various complications.
Light chain myeloma is distinguished by the type of abnormal proteins produced by the cancerous plasma cells. Normally, plasma cells produce immunoglobulins, which are large proteins made up of two heavy chains and two light chains. In light chain myeloma, the cancerous plasma cells produce abnormal light chains (also known as Bence Jones proteins) without the corresponding heavy chains.
The presence of these abnormal light chains can cause kidney damage and other complications. The excess light chains are filtered by the kidneys and can form crystals, leading to kidney problems such as renal failure. Therefore, monitoring kidney function is crucial in the management of light chain myeloma.
Roberto- let me know if you have any questions.
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
“Although not often openly acknowledged, “cure vs control” is the dominant philosophical difference behind many of the strategies, trials, and debates related to the management of myeloma. Should we treat patients with myeloma with multidrug, multitransplant combinations with the goal of potentially curing a subset of patients, recognizing that the risk of adverse events and effect on quality of life will be substantial? Or should we address myeloma as a chronic incurable condition with the goal of disease control, using the least toxic regimens, emphasizing a balance between efficacy and quality of life, and reserving more aggressive therapy for later?
“Multiple Myeloma (MM) frequently presents with renal dysfunction apart from other manifestations. Development of renal failure in patients with MM carries a poor prognosis…
Previous trials have shown its efficacy in relapsed and refractory MM as well. Studies have also shown that bortezomib is also effective in patients with MM who present with renal failure.
We report here six cases of renal failure secondary to MM treated with bortezomib. All patients had poor performance status of 3-4 on ECOG scale. Five out of six patients showed satisfactory anti-myeloma response to bortezomib. Reversal of renal failure was observed in all six patients.
Adverse effects to bortezomib were mild and manageable. Reversal of renal failure persisted despite incomplete response to MM in two cases, and progression of disease in one patient. It appears that bortezomib may have an effect on the kidneys in reversal of renal failure, other than its anti-myeloma effect.
In conclusion, bortezomib appears to be an effective treatment for patients with advanced MM and renal failure irrespective of performance status and age.”
“Conclusion- In the present study, we found that curcumin as a chemosensitizer could enhance the cytotoxic effect of PS-341. Combined curcumin and PS-341 treatment interacts with NF-κB signaling and alters NF-κB p65 expressions and distributions.
Pre-treatment with JNK inhibitor SP600125 restored H929 cells’ survival and attenuated NF-κB inactivation as a response to curcumin and PS-341. These results suggest the cytotoxic effect of combined treatment on H929 cells attributes to interaction with NF-κB signaling, and this mechanism might be partly JNK-dependent.”