It would be really nice if there was a search function for these posts so we could look up if a question or concern has been raised before and what the replies were. Will also help to build on earlier discussions Just my two cents

My husband was diagnosed with multiple myeloma two years ago at the age of 57. He was in great health prior to that. His cancer is a very aggressive form. When he was diagnosed, he was in renal failure. After undergoing 3 months of dialysis, his kidneys have recovered better than they hoped. He has since gone through a stem cell transplant, car-t transplant 5 months ago. That was preceded by a round of 96 hours of chemo. He developed CRS a few days after Car-t that landed him in ICU. This past week, just 5 months after car-t, they found myeloma cells. We were hoping to get more time out of it but it’s a cancer that is relentless. We are fortunate to have a great Dr at the Cleveland Clinic and my husband has a great attitude. He is such a fighter. They are going to do a newer treatment that involves a hospital stay of 10 days due to FDA requirement. It’s 4 shots over 10 days with a omnew med called “Talquetamab”. Has anyone had experience with that treatment? We are hoping this is the miracle drug for him. We are staying positive.

Hello everyone. My father has been diagnosed with MM recently. I am very confused with the stage of MM he is in The reports states that S beta 2 microglobilin @ 4.58 Serum albumin. @ 3.6 FISH analysis : 1q gain and not amplification While I have researched a lot and according to me as per R ISS , this should be stage 2 But the doctor in one prescription mentioned stage 3 as he said 1q gain is still a high risk. I dint want to argue with the doctor here as he is treating my father but such mentions might disrupt someone mentally as well. Could someone suggest what should I consider his stage to be? Many thanks

Never give up on yourselves. If the process can't find a way, search for a way and never give up on yourselves. Sometimes the answers or the clues to the answers come from within.

Happy Tuesday! Let's talk about our goals for 2024 and how you break them into smaller, achievable milestones.

Greetings. Subject: sudden increase of Kappa light chain in blood serum. I've had non-secretory myeloma now for ten years, and I have been in remission most of the time while taking Kyprolis, which I've been taking for the last 9 years, except for the last 15 months, in which I've been taking an alternative medicine and no other cancer drug or supplement. A bone marrow biopsy about a month ago could detect no cancer, by microscopic evaluation (no Minimum Residual Disease testing). I get blood tests every two weeks and the last measurement shows my serum Kappa free light chains to be 30.7 mg/L. This is surprising because as a non-secretor, my light chains have always been in the normal range (from 3.3 to 19.4). If this is a sign of relapse, my guess is that the cancer clone has changed to a different kind of myeloma that is not non-secretory. It's a bit complicated, because in the last month, my Immunoglobulin A, G, and M, which had been below normal for many years, are now in the normal range. This last fact makes me wonder if my immune system is now finally recovering from the damage done to it by my cancer medications. Or, is the Immunoglobulin response also a sign that I'm experiencing another kind of myeloma cancer clone? My hopes are of course that even the elevated Kappas are an indication that I'm returning to normal, as my immune system goes through adjustment. I agree that it's probably too early to tell, but my main question is, how common is it for Kappa light chain levels to pop a little above the normal range and how concerned should I be? The Kappa/Lambda ratio, which had always been in the normal range is also slightly elevated to 1.85 (normal is 0.26 - 1.65). Have other non-secretors here experienced a clonal change to a cancer that deposits light chains in the blood serum?

Hello, I have recently been diagnosed with active MM after almost 6 years of smoldering myeloma. I am scheduled to start 4-6 months of chemo in Feb with the 4 drug regimen followed by an ASCT (which I assume will be in June/July/August). From what I have read online, I will qualify for Disability. My questions for the group are: - When should I file for Disability? (before, during or after the ASCT?) - Should I work with an attorney or file myself online? - Any recommendations for an attorney? Thank you.

Darzalex or Pomalyst? Pros? Cons? TIA, Keith

Hi everyone! I was diagnosed 8/22 with MM Stage 3 and AL Amyloidosis. Had D-VRD induction and ASCT. I was MRD- post transplant and one year later (2 weeks ago), I had another BMB and still MRD-. But…. perivascular AL amyloidosis showed up (no amyloids were present on my 2 previous BMBs). I’ve been on 10mg Revlimed for maintenance. My question is: Should Dara be added to maintenance? It seems like Dara can be effective combatting amyloidosis. Any advice or experience you can share would be deeply appreciated so I can be prepared for upcoming visit with MM specialist to discuss any changes to treatment plan.

Are your Affairs in Order? Many of us procrastinate on this subject. If you become incapacitated and don't have these in place, it's too late. You may create a huge burden for your loved ones. Here's a comprehensive list of legal documents you should have for your financial matters, including a community property agreement and ensuring spousal accounts have authorization: Estate Planning Documents: 1. Will: This document outlines how you want your assets to be distributed after your death. It's crucial to have a will if you own property, have money or investments, or have children or dependents. 2. Living Will (Advance Directive): This document specifies your wishes for medical care in case you become incapacitated and unable to make decisions for yourself. It allows you to state your preferences for things like life support, pain medication, and organ donation. 3. Power of Attorney: This document grants someone you trust the authority to make financial and legal decisions on your behalf if you're unable to do so yourself. There are two main types: financial and medical. 
 Financial Documents: 1. Community Property Agreement: If you live in a community property state (Arizona, California, Idaho, Louisiana, Nevada, New Mexico, Texas, Washington, and Wisconsin), this agreement clarifies which assets are considered "community property" (belonging to both spouses) and which are separate property. It can help prevent disputes and simplify estate administration. 2. Spousal Account Authorization: Instead of just adding your spouse to an account as a joint owner, consider having them authorized as a signer. This allows them access to the account and the ability to manage funds, but it protects your individual ownership of the assets in the account. 3. Beneficiary Designations: Designate beneficiaries on retirement accounts, bank accounts, and life insurance policies to specify who inherits those assets without going through probate. 4. Marriage License/Divorce Decree: These documents establish your marital status and any associated rights and responsibilities. 5. Birth Certificate/Social Security Card: Essential for proving your identity and eligibility for government benefits. 6. Property Deeds/Titles: Show ownership of your real estate and other property. 7. Loan Agreements/Contracts: Outline the terms of your loans and other financial agreements. 8. Tax Returns: Keep copies of your tax returns for at least seven years for audit purposes. 9. Investment Statements: Maintain records of your investment accounts, including purchase dates, cost basis, and current values. 10. Insurance Policies: Keep copies of your homeowner's, car, and other insurance policies readily accessible. Additional Tips: * Keep your documents in a safe place, such as a fireproof safe deposit box. * Make sure your loved ones know where your documents are located. * Review your documents regularly and update them as needed, especially after major life events like marriage, birth of a child, or purchase of property. * Consider consulting with an attorney or financial advisor to ensure your legal and financial documents are properly drafted and reflect your wishes. By having these essential documents in place, you can provide peace of mind for yourself and your loved ones, ensuring your wishes are respected and your financial affairs are handled smoothly in the future. Please consult with a qualified professional for personalized guidance regarding your specific situation. If you need help sorting things out, seek out a HealthTree Coach with experience in Health Insurance/Financial Resources.

Congrats to all of us that lived to see another year! Unfortunately, after finally recovering from my 4 back fractures, I installed our new washer and then pushed a luggage cart on our 1 night getaway so now, new back pain but hopefully just pulled muscles..sigh. Hassling with having to start with brand new PCP since Scripps dumped all of us medicare advantage patients so been off my chemo for almost a month as awaiting new authos:( But what I was wondering, has anyone heard or healthtree of patients donating their bodies for MM studies? One would think that would be a high priority for research??? Also the Pom is still lowering Blood cells, etc so wondering others results on a Dara fastpo cocktail with less side effects? Told I can't use REV again. So much more expensive and painful to have to get 2 more shots-aranesp and releuko just to tolerate the Dara/Pom plus not that good of an improvement in numbers...

Has anyone been diagnosed with extramedullary and non-secretory at you initial diagnosis? I was diagnosed due to a mammogram showing something, which led to a biopsy, that was a plasmacytoma. Once I saw an oncologist, they did a PET and found 3 more plasmacytomas. (breast, 2 on my thigh, and 1 on my lung that had done some damage to a rib) I responded well to treatment and had a SCT. I'm a little over 2 years out from the SCT and have a place coming up on my leg similar to what I had at diagnosis. They did a doppler/ultrasound and there's not a DVT. Due to crazy weather, most offices have been closed this week. I'm scheduled for a CT or PET next month, but feel like maybe it should be moved up. (I've also had some weird feelings in my ribs/side. I go back and forth between thinking it IS something and thinking I'm overreacting!) Thanks for any insights you may have to share!!! There doesn't seem to be a lot about extramedullary other than at relapse, so I would like to find some more information! Thanks, Karen

24 hr urine collection for Creatinine Clearance and Urine Protein Hi all, We need to do a 24 hr urine collection for Urine Protein and to measure Creatinine Clearance. I forgot to ask if we could do the collection while the treatment cycle is on or if we need to wait and do it during our week off treatment. Does anyone know?