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 🙏

Hello All, Hope you are doing well. If you served in the military oversees, you are likely eligible for VA Disability benefits as they now consider MM a presumptive condition due to toxic exposure. I filed my claim in early December and it was just approved. MM gets an automatic 100% rating for 5 years and you also get VA health care benefits. Message me if you want more information on what we included in the claim. https://www.va.gov/disability/

Good day to all! I’m 28 months post SCT for stage 1 MM. currently on Revlimid 10mg 14 days out of 28 day cycle. This may seem trivial to some, but not to me.. I have had a daily problem with insomnia and constipation. I follow all the recommended sleep hygiene practices and follow a good diet and get exercise. I’ve tried many supplements for both of these conditions. Thus far, I continue to be plagued by both problems. I’m looking for new ideas that might help me. God bless you all.

Hello everyone, wishing you all the best in your health! I’m 53 years old and was diagnosed with SMM a year ago, but it recently progressed with a lesion in my sternum, which isn’t painful. It has now been declared active MM, and I started treatment two weeks ago with Dexamethasone, Prednisone, Bortezomib, Daratumumab, Zometa, and preventive medications for side effects. I’ve never experienced significant related pain anywhere in my body. Prednisone has been giving me lots of energy and appetite. I feel great. Today, I’m starting Revlimid, which is the one that concerns me. I hope I can tolerate it just as well. I’m preparing for an autologous transplant in 4 months. I’ve read many concerning stories and others that are not so bad. I have high expectations and hope not to be disappointed along the way. I know it won’t be as easy as it has been so far, but I hope it will at least be manageable. Has anyone else done so well at the beginning and then experienced a change? If I’ve done well with everything so far, can I have good expectations with Revlimid? Looking forward to hearing from you all!

CAR T-cell Therapy and Its Side Effects -thoughts on this please? Thx

One of my Christmas gifts this morning was Covid! Contracted, most likely, at a public holiday party last Friday night with about 150 people. So, I’m wondering as someone mid-high risk SMM how the COVID virus impacts progression, if at all? And any other residual impacts from COVID related to SMM. Thanks! Best wishes for a great holiday and New Year everyone!