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amberSheep
Multiple Myeloma Discussion • January 21, 2024
Navigating Disability: Seeking Advice
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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.
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Ann
Multiple Myeloma Discussion • January 21, 2024
Thoughts on Adding Dara for New Amyloidosis?
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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.
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Dave Braucht
Multiple Myeloma Discussion • January 20, 2024
Planning for Peace of Mind: A Document Checklist
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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.
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Dave P
Multiple Myeloma Discussion • January 19, 2024
Questions: Dara/Pom Side Effects & Body Donation
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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...
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KHowell
Multiple Myeloma Discussion • January 19, 2024
Extramedullary Diagnosis & Relapse Concerns?
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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
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DEVYANI (Aditi)
Multiple Myeloma Discussion • January 18, 2024
Timing 24-Hr Urine Collection With Treatment?
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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?
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DaveClarke
Multiple Myeloma Discussion • January 17, 2024
Navigating the High Cost of Treatment
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We are getting shafted. Big Pharma is getting bigger, some lobbyist is making a living off our suffering and our representatives are probably enjoying expensive meals at our expense. $5,000 in Australia for the same drug I pay $19,000.
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DaveClarke
Multiple Myeloma Discussion • January 17, 2024
A Good Read on Why Our Meds Cost So Much
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This is from today’s NY Times. To put it bluntly, we are getting shafted. It doesn’t have to be this way. FROM THE NY TIMES: Six Reasons Drug Prices Are So High in the U.S. Research shows prices in the United States are nearly double those in other well-off countries. Image A pharmacist crouching in front of a shelf, looking down at a box of medication. She is surrounded on three sides by shelves full of medications. A complicated system of intermediaries and a lack of legal constraints have contributed to high drug prices in the United States.Credit...Paola Chapdelaine for The New York Times Rebecca RobbinsChristina Jewett By Rebecca Robbins and Christina Jewett Jan. 17, 2024 Updated 1:53 p.m. ET Florida’s plan to save money by importing medications from Canada, authorized this month by the Food and Drug Administration, has renewed attention on the cost of prescription drugs in the United States. Research has consistently found that drug prices in America are significantly higher than those in other wealthy countries. In 2018, they were nearly double those in France and Britain, even when accounting for the discounts that can substantially reduce how much American health plans and employers pay. Have you been overcharged for prescription drugs?Share your story via our questionnaire. “The U.S. market is the bank for pharmaceutical companies,” said Ameet Sarpatwari, an expert in pharmaceutical policy at Harvard Medical School. “There’s a keen sense that the best place to try to extract profits is the U.S. because of its existing system and its dysfunction.” ADVERTISEMENT Here are six reasons drugs in the United States cost so much: 1. There is no central negotiator willing to walk away. Other wealthy countries rely on a single negotiating body — usually the government — to decide whether to accept the price a pharmaceutical company wants to charge. In the United States, negotiations with drug makers are split among tens of thousands of health plans, resulting in far less bargaining muscle for the buyers. Other nations also conduct careful analyses of how much additional benefit a new drug presents over drugs already on the market — and at what cost. If the cost is too high and the benefit too small, those countries are more willing to say no to a new drug. Health Care in the United States Obamacare: More than 20 million people have signed up for plans on the Affordable Care Act’s marketplaces during the annual open enrollment period, far surpassing last year’s record of more than 16 million enrollments, the Biden administration said. Medical Errors: A major study showed how the rate of serious medical complications increased in hospitals after they were purchased by private equity investment firms. Operating Profits: A New York Times series looked at the proliferation of lucrative but precarious medical procedures, including risky artery procedures, complex hernia repair, a bustling bariatric program and “tongue-tie” surgery for babies. “Our lack of consolidation in negotiating is a key reason that we pay more than other countries — but also this unwillingness to negotiate as hard,” said Stacie Dusetzina, a health policy expert at Vanderbilt University School of Medicine. The Inflation Reduction Act, enacted in 2022, authorized Medicare to negotiate directly with drug companies over the prices of a small number of drugs years after they entered the American market. Health policy analysts say that is a start, but much broader negotiating authority is needed to make a dent in drug prices overall. ADVERTISEMENT Pharmaceutical companies argue that the higher prices come with added benefit: Industry-funded analyses have found that patients in the United States get medicines faster, and with fewer insurance restrictions, than those in other countries. 2. There are no price controls. Some countries set limits on how much they will pay for medicines. France, for example, caps the growth of drug companies’ sales: If sales exceed that threshold, the government gets a rebate. Drug companies in the United States have avoided legal restraints on prices for patients covered by commercial insurance and on introductory sticker prices when drugs first enter the market. “Drugs are so expensive in the U.S. because we let them be,” said Michelle Mello, a Stanford law and health policy professor. “We designed a system in terms of drug costs that is all engines, no brakes.” ADVERTISEMENT 3. The system creates perverse incentives. Drug companies are not the only ones making money from high drug costs. Doctors, hospitals and an array of intermediaries also see higher revenue when costs soar. One case in point: Under Medicare policies for some drugs, doctors pay upfront for drugs that they administer to patients intravenously in their offices, such as chemotherapy. To recoup their costs, they send a bill to Medicare for both the cost of the drug and a percentage of that cost, set by Medicare, to cover their overhead. That billing system creates an incentive for a doctor to choose a higher-priced drug. For example, a Medicare rate of 6 percent on a $10,000 drug would pay $600 — a lot more than the $6 fee paid for infusing a $100 medication. Experts also see misaligned incentives stemming from pharmacy benefit managers, or P.B.M.s, big businesses that negotiate with manufacturers on behalf of the employers and health plans that pay most of the bills for prescription drugs. P.B.M.s make more money in fees from manufacturers when the sticker price of a drug is higher. They sometimes require patients to take a drug with a higher sticker price even when a cheaper alternative is available. ADVERTISEMENT 4. The system is fragmented and complicated. Drug industry executives often complain that they are unfairly blamed for high prices while other parties, including P.B.M.s and insurers, are profiting from a growing share of drug spending and saddling patients with high out-of-pocket costs. “The United States is the only country that allows middlemen, such as P.B.M.s, to profiteer on medicines unchecked,” said Alex Schriver, an official at Pharmaceutical Research and Manufacturers of America, or PhRMA, the drug industry’s main lobbying group. Manufacturers retain only half the money that health care payers initially spend on prescription drugs before discounts are applied, according to a 2022 study funded by PhRMA. The system is so confusing that doctors and patients trying to decide between seemingly comparable drugs have no easy way to determine what their actual cost will be at the pharmacy counter. Even researchers have trouble parsing the system — in particular, the complex deals made between drug makers, intermediaries and insurers — as they try to pinpoint problems and come up with solutions. 5. Patent gaming keeps prices high longer. Around the world, countries issue patents to drug companies that grant them temporary monopolies during which lower-priced generic competitors can’t enter the market. But in the United States, drug companies have been especially successful in finding ways to prolong that monopoly period, through tactics like piling up patents to protect inventions that are only tangentially related to the drug in question. For example, the drug company AbbVie delayed competition for its blockbuster anti-inflammatory drug Humira for more than four years longer in the United States than in Europe. Patents were a key factor: A number of AbbVie’s patent applications were refused by Europe’s patent examiners or revoked after being challenged, according to an analysis by the Initiative for Medicines, Access and Knowledge, a nonprofit that tracks drug patents. AbbVie declined to comment for this article. 6. Drug prices are what the market will bear. Drug industry executives often say their prices reflect the value their products provide to society. For example, a one-time $3 million cure may be a bargain if it ends up averting $10 million in hospital bills and lost wages. But a comparison with other valuable resources shows how that model could send prices spiraling out of control. “If we allowed water utilities to charge us the full value of water in our lives, society would very quickly break down,” said Christopher Morten, an expert in pharmaceutical law at Columbia University. Drug companies also say the prices of medications reflect the huge, rising costs of running clinical trials and the need to recoup expensive investments in failed drugs. But academics have found no relationship between how much drug companies spend on research and how much they charge. The reality, experts say, is that companies set their prices as high as the market will bear.
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IceSk8Girl
Multiple Myeloma Discussion • January 17, 2024
Experiencing Patchy Hair Regrowth After ASCT?
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I had Cytoxin chemo conditioning twice to get enough stem cells for ASCT, then had Busulfan and Melfalan conditioning during the ASCT. My hair took 6 months to even start to grow back, and then it was in patches. It is now 1 1/2 years after ASCT and I still have these nearly bald patches on my head. Has anybody else had this experience?
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HealthTree User • Admin
Multiple Myeloma Discussion • January 17, 2024
Managing MM With Dermatomyositis?
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I am in contact with a patient who was just diagnosed with Dermatomyocytis (the kind that causes interstitial lung disease/fibrosis that is extremely hard to treat and with a poor prognosis. The treatment for that disease is harmful to Myeloma patients. Likewise, treating myeloma is harmful for Dermatomyositis (ILD) patients. The combination is rare. Any suggestions? She has an appointment with Johns Hopkins on January 22nd, which was made prior to receiving this news.