Dear Myeloma Community, Great day, I am 70 years old, diagnosed with Myeloma since almost two years. I am now on Lenalidomide 10mg maintenance dose. I am monitoring the Kappa Light Chains, being my type of disease, as an important marker for progression. I have no m-spike. The outcomes are different from Lab to Lab. Such as I got 129 from one lab and 89 from the other with 1 day difference between giving the blood samples. My question: did anybody come across the question of the accuracy/ tolerance of this test? Is it plus or minus 5%, 10% or? I am not able to judge or find an answer. My doctor says I don't need further tests like a Biopsy or PET, but we need to monitor my condition monthly. Please let me know if you have a similar situation or can help somehow with an advice. Rgds to all

Hello everyone, My fiance has been getting the chemo injections in his stomach and they are very painful. I was wondering if there was anything that helps relieve the pain?

Dear all happy new year!! My name is Marzia and I’ m italian Myeloma patient from 27 years, now I’m 46 years old. II’ve started talquetamab, just twice infusion but already I have a lot of side effedt: my hand and face Skin is all peel off and I totally loose taste, Can you give me some suggestion to contain this side effect? Thanks you all Marzia

Hello Everyone, January 1st was the start of the $2000.00 max out of pocket for prescriptions that are covered as formulary in your Part D drug plan...

Hi all First of all, Happy New Year to everyone in the community! Thank you for the much-needed support and positivity here—it's been truly amazing. I hope 2025 brings great things to all of us. I have a query: Even when multiple myeloma (MM) is stable with a low SPEP, can bone pain still be an issue? Should this be considered normal, and is taking paracetamol advisable in such cases? What are the other solutions?

Happy New Year to all of you! My doctor has told me I am still in remission but instead of my MRD being 0, it shows 6 cells out of a million this time. Although it’s still considered remission it really scares me. Does anyone else have a similar experience? Also- I am one year out from having a stem cell transplant.

Hello, I was diagnosed with MM in 2017. After a variety of treatments, including back-to-back Auto Transplants in 2018/19, I will be doing an Allo Transplant in March 2025. Given my Auto experience and general understanding of the transplant process, I would appreciate hearing about 'quality-of-life' tools that were important for you and your family. For example, in my Auto transplant, I really appreciated having multiple people stay with me, as it showed how many people were supporting me on the cancer journey (even while it was difficult for my spouse, as she struggled with feelings of guilt for not being able to be there the whole time). Thank you in advance for your thoughts and experiences. Sincerely, Joe Wheeldon

Researchers are finding new ways to fight multiple myeloma, including a new treatment called CAR T-cell therapy. It's still experimental, but you may get a chance to join a clinical trial if your other treatments aren't working. CAR T-cell therapy works differently from other cancer treatments. Does anyone have experience with this ? Thank, Keith

Hello Everyone, I have completed 2 cycles of quad therapy with Dexa, Revlimid, Velcade and Dara. I had issues with extreme bloating. Then the left side of abdomen, back and side became numb. I’m on antiviral medicine. My hematologist/oncologist didn’t have an answer so I saw a neurologist who said I was getting shingles but there was no rash. Apparently the anti viral was keeping it at bay and looks like internal shingles and they treated me increasing the anti viral. It’s been over 2 weeks and still numb with sensitive skin. I am 54 and only had 2 cycles 21 days and this occurred. Now it’s holding up my treatment. Has any else gotten this from treatment for multiple myeloma? Does anyone have insights referencing shingles during treatment? Thank to very much.

Revlimid is the best medication I’ve used to date. It gave me long remissions for years. (I was diagnosed in 2013.) The side effects were manageable. Good luck!

Had a bone marrow biopsy. Looks like I am MRD- and in Remission. I am scheduled for ASCT the end of January. Waiting to hear from the Doctor, and hoping to go on Maintenance instead. Has anyone chosen to do this instead of ASCT?

Kepivance Can anyone tell me if they've had Kepivance (Palifermin) prior to an autogolous stem cell transplant (SCT)? https://www.drugs.com/kepivance.html https://www.drugs.com/pro/kepivance.html I ask because it's being suggested I take it because I've previously experienced radiation and there's a concern that when I receive my Melphalan dose before my SCT, it would be better to take the Kepivance to stave off the potential impact of mucositis and re-radiation that can be a side effect from Melphalan. Interestingly, there are two places where I can receive a SCT in my area and one recommends I take it and the other doesn't. If I do take it, I'll do so for 3 days straight starting a week before my SCT then again for 3 days straight some time after my SCT. From Google AI: Should I Take Kepivance? Based on the provided search results, Kepivance (palifermin) is a medication indicated to decrease the incidence and duration of severe oral mucositis in patients with hematologic malignancies receiving myelotoxic therapy in the setting of autologous hematopoietic stem cell support. It is not indicated for patients with non-hematologic malignancies. Before deciding whether to take Kepivance, consider the following: Your diagnosis: Kepivance is only recommended for patients with hematologic malignancies (blood cancers) undergoing autologous hematopoietic stem cell transplantation. If you have a different type of cancer, Kepivance may not be suitable for you. Your treatment plan: Kepivance is used as supportive care for preparative regimens predicted to result in ≥ WHO Grade 3 mucositis in the majority of patients. If your treatment plan does not involve myelotoxic chemotherapy and autologous stem cell transplantation, Kepivance may not be necessary. Potential side effects: Kepivance may cause common adverse reactions such as rash, fever, elevated serum amylase, pruritus, erythema, and edema. It may also interact with heparin and increase systemic exposure. Breastfeeding and fertility: Kepivance is not recommended for breastfeeding women, as it may harm the breastfed child. Additionally, animal studies suggest it may impair fertility in both males and females, although the reversibility of this effect is unknown. Alternative options: If you are considering Kepivance, discuss alternative treatments and their potential benefits and risks with your healthcare provider. Based on these factors, you should consult with your healthcare provider to determine whether Kepivance is appropriate for your specific situation. They will help you weigh the potential benefits against the risks and consider alternative options.

Jimmy Carter had a lot to do with immunotherapy. Metastatic melanoma was a death sentence in 2015. Then Jimmy Carter stepped in. https://www.yahoo.com/news/metastatic-melanoma-death-sentence-2015-001039749.html

Hello, I have translocation 11;14 and responded exceptionally well to venetoclax prior to ASCT. After ASCT my doctor wants to continue me on venetoclax as maintenance therapy. Has anyone had a similar experience; anyone used venetoclax and dexamethasone for maintenance? Was it successful? Thank you 🙏