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Light Chain Disease

A MyMyelomaTeam Member asked a question 💭
Asheville, NC

Can I ask who has light chain disease and what treatment/s you are receiving and how are they are working and side effects ?

February 16, 2020
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A MyMyelomaTeam Member

Do you have kidney disease as well?
Has the revlimid caused you joint or mainly hand pain? Curious cause my doc wants me to stop the Rev with no other alternative although the pain is just in my hands and the kidneys lose a problem for other meds

February 16, 2020
A MyMyelomaTeam Member

I have light chain was diagnosed in July 2015. I started with radiation to reduce the size of my tumors. Then when to the chemo shots in the stomach. The. To revlimid 25 mg for 3 weeks and off a week. Was on it was quite awhile my immune system when down really bad and got Spectic and spend a week in ICU. Now I am on 10 mg revlimid daily. I have taken one 2 month break and since I know when I get so tired and want to sleep all the time I tell my doctor. I have been in remission for about 3 years. From my reading and talking to medical professionals light chain is the choice if you had a choice for the type you have. Hope this help

February 16, 2020
A MyMyelomaTeam Member

Light chain multiple myeloma is a type of multiple myeloma, a cancer of the plasma cells. Here are some key points:

- Plasma Cells and Immunoglobulins: Multiple myeloma begins in the bone marrow, where white blood cells transform into plasma cells to create immunoglobulins (antibodies) to fight infections. In multiple Show Full Answer

Light chain multiple myeloma is a type of multiple myeloma, a cancer of the plasma cells. Here are some key points:

- Plasma Cells and Immunoglobulins: Multiple myeloma begins in the bone marrow, where white blood cells transform into plasma cells to create immunoglobulins (antibodies) to fight infections. In multiple myeloma, plasma cells produce damaged immunoglobulins called monoclonal proteins (M proteins).

- Light Chain Multiple Myeloma: About 20% of people with multiple myeloma are diagnosed with light chain multiple myeloma. These individuals produce only the light chain component of abnormal immunoglobulins, known as Bence-Jones proteins.

- Symptoms:
- Bone Damage: Affects about 85% of people, often in the spine, pelvis, or ribs.
- Gastrointestinal and Urinary Problems: Excess calcium from bone damage (hypercalcemia) can cause stomach upset, excessive thirst, and diarrhea.
- Neurological Symptoms: Hypercalcemia can also cause mental changes.
- Kidney Failure: Symptoms include urinary changes, fatigue, nausea, swollen feet and ankles, itching, shortness of breath, and high blood pressure.

- Diagnosis:
- Blood Tests: Detect M proteins and other indicators of multiple myeloma.
- Urine Tests: Detect M proteins, often through a 24-hour urine collection.
- Bone Marrow Biopsy: Examines bone marrow cells for malignancy.
- Imaging: X-rays, MRI, and PET scans are used.

- Treatment: Similar to other forms of myeloma but complicated by the tendency of light chains to cause kidney damage. About 40% of people with multiple myeloma have kidney damage.

For more detailed information, you can refer to the guide on light chain multiple myeloma from MyMyelomaTeam.

July 24
A MyMyelomaTeam Member

I was on Revlimid for 2 yrs with Dexamethasone. acyclovir and Bactrim, then switched to Velcade 6 months ago cause the Revlimid stopped working. So far the Velcade is working and the side effect is from the Dexamethasone not sleeping well and of course fatigue. The concern I have is I am on Medicare now and the cost of these medicines are hard for retirees ni on Medicare. The supplemental insurance is like I pay 25% till I go over 6500 out of pocket and then my portion will go down to 5% which is not too bad but still a lot for retirees. I was able to get help from Patient Access network for a year and right now from leukemia/ lymphoma association and now almost running out I am on waiting list for Patient Access Network and try the other Patient Advocate .

April 2, 2021
A MyMyelomaTeam Member

Please make sure that you want to take XGEVA you need to be completely informed. I wasn’t and I have lesions on my jaw and pain in my mouth and they cannot do surgery because I took ZOMETA and XGEVA because I was allergic to ZOMETA, the cancer center I was with did not fully inform me and that stuff stays in your body for years. I have a big mess because of those “bone strengtheners” also I have an AMAZING oncology orthopedist. He took me off all the bone strengtheners because they make the bone harder but do not build it back up inside so they can cause other problems. Just make sure you are informed. Personally I will never take bisphosphates again.

April 1, 2021

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