“The Bortezomib/Dexamethasone regimen induced high rates of rapid hematologic and organ responses in AL amyloidosis patients.”
Hi David- My wife is newly diagnosed with a solitary plasmacytoma on a rib with amyloidosis. Kappa light chains are 200 mg/L, Lambda are normal at 9. 24 hr. urine is completely normal.
Kidney biopsy confirms Kappa light chains cause of kidney dysfunction with creatinine currently at 1.99, eGFR at 26. Electrolytes are all normal.
My wife is 64 and in otherwise very good health aside from elevated cholesterol. No heart involvement. 5% plasma neoplasm cells in bone marrow. PET-CT shows no lesions other than the rib plasmacytoma.
The MM specialist is highly recommending autologous stem cell transplant and CyBorD as an alternate. We are apprehensive about the aggressive transplant option and have a 2nd opinion appointment scheduled with an amyloidosis specialist.
We would greatly appreciate your thoughts on treatment, cure vs. control, etc. She started taking Fenbendazole and Curcumin three weeks ago as recommended by a relative for whom it completely cured his advanced bladder cancer.
Hi Richard- I am sorry to read of your wife’s Solitary Plasmacytoma of Bone (SPB) diagnosis. I just re-read the blog post that you came in on. I think I was channeling your wife’s situation when I wrote that post :-).
All kidding aside, let me be more specific as to why that post is central to your wife’s situation.
First, the standard-of-care therapy plan for all newly diagnosed MM patients in the U.S. is
- induction therapy
- ASCT and
- maintenance therapy.
All oncologists will prescribe this therapy plan. Not sure if the MM specialist will deviate but it is worth discussing it with him/her.
Secondly, as you know, your wife’s stage of MM is early. In fact, a single bone plasmacytoma is technically PRE-MM (SPB is like MGUS, SMM) In your wife’s case, at most, the therapy approach would be local radiation to her solitary plasmacytoma in her rib.
This light therapy could be her only conventional therapy for years to come.
My point here is that the standard therapy plan is a lot of toxicity for anyone. Much less a person with pre-mm. The more chemo/toxicity a person undergoes, the higher the risk of short, long-term and late stage side effects.
Thirdly, you and your wife’s long-term challenge, in my experience, is managing both her PRE-MM as well as managing her kidney health. This may seem like an obvious statement but managing the two can sometimes conflict.
I will link a post below that talks about the commonly used mm therapies that damage kidney function.
Lastly, there are a number of evidence-based but non-toxic, non-conventional therapies shown to enhance kidney function. Curcumin is one. My use of the term “non-conventional” means that a particular therapy has not been studied or approved by the FDA.
Therefore, I believe that early stage MM (solitary plasmacytoma) can be managed with low-dose chemo while kidney health can be enhanced with evidence-based non-conventional therapies. Please do not expect board certified oncologists to know much if anything about non-conventional therapies. Nothing personal, they just won’t know much if anything.
I’ve thrown a lot of info at you in this email Richard. Let me know if you have any questions.
Hang in there,
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
“In this review, we recognized that there are multiple ways novel anti- multiple myeloma therapies can affect renal function, cause kidney damage.”
Kidney damage is tricky for the multiple myeloma (MM) patient and survivor because MM itself can damage your kidneys. Kidney damage can be a symptom of MM. Further, as the article linked below explains, MM chemotherapy itself causes kidney damage as well.
The scariest problem facing newly diagnosed MM patients is quoted in the top article in the very first sentence “effects of these therapies can lead to unanticipated effects on the kidney.” In other words, some of these “novel” MM therapies are not old enough, have not been tested enough for oncology to thoroughly understand the degree of kidney damage caused by novel chemotherapy regimens…
Lastly, and this is my own perspective on MM chemotherapy drugs, the negative kidney effects cannot be fully know and understood, until years after chemo administration. Like all long-term and late stage side effects, a MM patient can’t know the full extent of his or her kidney damage until they’ve lived beyond their MM diagnosis for years, even decades, beyond their original MM diagnosis.
Just knowing they kidney damage can be an issue for multiple myeloma patients can help. Also, there are a number of foods and supplements that can help your kidneys heal…”
“Although bortezomib has reported efficacy in light chain (AL) amyloidosis, the role of bortezomib in combination with dexamethasone (BD) as the first-line treatment for patients with AL amyloidosis has not been determined. We analyzed the outcomes of 72 consecutive unselected patients, which received primary therapy with BD in a single center.
The patients were newly diagnosed with AL amyloidosis with
- renal (100%),
- cardiac (72%),
- hepatic (19%) or
- nervous system (10%) involvement
and underwent a median of 2 (1-6) cycles of BD treatment. A hematologic response was achieved in 75% of the patients within a median period of 2 months, and 45% of those patients achieved a complete response. A renal response was achieved in 50% and 60% of patients at 1 year and 2 years, respectively, and a cardiac response was achieved in 40% and 46% of patients at 1 year and 2 years, respectively.
After a median follow-up period of 24 months, the median duration of progression free survival was 45 months, and the estimated overall survival rates at 12 and 24 months were 83% and 76%, respectively. Baseline Eastern Cooperative Oncology Group performance status and proteinuria were associated with overall survival. The BD regimen induced high rates of rapid hematologic and organ responses in AL amyloidosis patients.”