“Progression to ESRD was rare, but CKD was common, and longer follow-up may uncover a greater burden of slowly progressive CKD in patients with treated LCPT.”
Hi David, I was diagnosed multiple myeloma with light chain proximal tubulopathy (multiple myeloma with extensive kidney involvement) in October. I had been experiencing fatigue for years – but especially in the last 3 years – and pain in my back and hip from Oct. 2018 to Oct 2019 when I was diagnosed. One of the doctors called out my low kidney numbers and told me to go get that checked out – that’s how Mayo Clinic in MN diagnosed the MGRS in late October.
My light chains were 33 – I have no genetic markers that they found – and I don’t even know what the IGA, IGG type numbers mean but I don’t have any of those either.
My bone percentage showed 7-8% MM cells in my bone marrow. No visible bone lesions, but my back and hip pain have almost disappeared since I have been on chemo. Doctors say they don’t suspect bone involvement but I am suspicious since that pain was constant for a year and has now decreased.
I was not taking any supplements because the oncologist said not to take anything during chemo – but after the 4th cycle I started taking fish oil, Curcumin, and b12. I have read about HBOT and wonder if that is something I should try. I started your course but have been overwhelmed and terrified and sort of in a frozen state the past few weeks with my light chain numbers going up.
I feel that the kidney involvement makes my prognosis worse and that is my main fear.
Do you have an opinion about if there is any benefit in my case to harvesting stem cells and having them saved? I know the research says that stem cell transplant does not necessarily extend life – just maybe first remission – but do you know if my kidney involvement make things different for me?
Thank you for the time and effort that you put into having a program for people facing a multiple myeloma diagnosis. I’m not sure if there are any stories or encouraging news about light chains and kidney involvement but anything that I could grab onto would be appreciated. I signed up for a consult with you and any of your expertise would be much appreciated. Katherine
I have replied to some of the comments you have made in your email. However, when I was replying to you about your light chains, I thought I should ask you just to send me your diagnostic reports so I can see whats-what for myself. Please read the below and let me know if you have any other questions.
My replies are below…
I will excerpt your comments below- I have to take issues one at a time- this helps me address your questions, comments. I suggest we exchange emails, questions and then schedule a talk.
First and foremost, yes, your diagnosis is rare and I certainly understand your fears. As a young MM patient (34), I too was scared. I believe your determination to learn, study, etc. will support your health and your mind- this works for me so I think it will work for you too.
I’ve been reading up on your situation and I want to make sure I understand. Your formal diagnosis is “monoclonal gammopathy of renal significance?” If MGRS is your diagnosis, it appears that while you are out of the normal range in certain diagnostic tests, you are only a bit abnormal? By this I mean “7-8%” of mm cells in your bone marrow or light chains of 33, or the normal creatinine range is .5-1.1.
I do not mean to minimize any of your diagnostic testing, I’m just trying to understand your situation. Do you have an m-spike? Can you email me your diagnostic test results?
If I understand your first paragraph below, you are not really worried about MM (or monoclonal gammopathy), it is your kidney health that is the issue?
Regarding your chemotherapy and associated markers. My main issue with conventional oncology is the balance of toxicity with numbers. By this I mean that many of your diagnostics are high normal or just above the normal range.
I’m not sure where you read that curcumin is not good to take with revlimid. I agree with your supplementation all around. I have linked a study about curcumin and revlimid (lenalidomide) below.
I don’t know of specific studies regarding HyperBaric Oxygen Therapy and nerve damage. However, my guess would be that oxygen would help your nerve damage. It does for the prostate cancer patients I work with when they have endured radiation to their prostate and suffer from nerve damage.
Regarding a stem cell transplant. Mayo is a top notch center for MM patients undergoing an autologous stem cell transplant. Having said that, after having read your email, I would have to learn more about your kidney function, and long-term prognosis before I would encourage you to undergo aggressive chemo aka an ASCT.
My comment above goes to your question about the long term overall survival benefit of an ASCT. You are correct. No study has ever determined that MM patients live longer after having an ASCT. I would prefer to focus on your kidney health. And think through therapies, both conventional and non, that increase your kidney health.
Re your question about harvesting stem cells. I encourage people to harvest stem cells 1) if their MM is at a low point (MRD, CR) following induction therapy. If I understand your situation, you are a concerned about MM as you are about kidney health. We, and you and your oncology team, should determine a therapy plan for your kidney as much as you’re MM.
- MM Survivor
- MM Coach
- Director PeopleBeatingCancer
“Light chain proximal tubulopathy (LCPT) is characterized by cytoplasmic inclusions of monoclonal LC within proximal tubular cells…
Hematolymphoid neoplasms, known before biopsy in only 15% of patients, included:
- 21 monoclonal gammopathies of renal significance;
- 15 multiple myelomas;
- seven smoldering multiple myelomas;
- and three other neoplasms.
Biopsy indications included Fanconi syndrome (38%; all with crystalline LCPT), renal insufficiency (83%), and proteinuria (98%)…
In summary, LCPT presents unusual diagnostic challenges because most patients have no prior history of hematolymphoid disease, intracytoplasmic light chain inclusions may be undetectable by routine immunofluorescence, and crystals may not be visible by LM.
The only independent predictor of final eGFR was initial eGFR, highlighting the importance of early detection.
Most treated patients, including all patients with crystalline LCPT receiving SCT, demonstrated stable or improved kidney function, indicating the benefit of aggressive therapy in selected patients with LCPT.
Progression to ESRD was rare, but CKD was common, and longer follow-up may uncover a greater burden of slowly progressive CKD in patients with treated LCPT.”