Multiple Myeloma
BoozyGroggyElfchild: I was not my dad's primary companion to doctor's visits, so some of the details may be incorrect or mixed up, but I wanted to share my dad's story. At least an abbreviated version it. He was first diagnosed in February 2017, at the age of 70. His initial symptoms were neck pain, caused by extensive bone lesions and he needed immediate neck surgery to repair the bone damage. About 6 weeks later, he began chemo. I don’t recall the exact cocktail of drugs, but revlimid was included. After one (!) round of chemo, he was deemed cancer free. His doctor did another round of chemo, just for the heck of it, before his stem-cell transplant on June 29, 2017. He came out in the other side, and was deemed completely cancer-free! His lambda count was zero for over a year. About 14 months after the transplant, that count began to rise, and in December 2018 it was officially classified as a relapse. I avoided reading a lot of literature after his initial diagnosis and successful treatment, but I did recall reading about the 100% relapse rate, so his relapse didn't come as a shock to me. I read a little bit more to find out what I could expect, and I quickly found out that relapses so soon after transplant usually meant trouble. His counts began to be high enough for treatment in February. He was again started on revlimid, and a host of other drugs (that I simply couldn't keep track of) until May. His blood counts were taken every three weeks, and not once was any progress evident. He simply wasn't responding. On May 24, he received his first Darzalex treatment, and to say that it wiped him out would be an understatement. He was tired, and it seemed like the fight was wiped from him. He received two further Darzalex treatments, along with a blood transfusion, with still no improvements in any of his counts. His lambda count was over 500. My mother brought him to the ER on the morning of June 13. His pulse ox was 81, he'd fallen in the middle of the night a few nights prior and was unable to get himself up. My once unstoppable father was so frail. When he arrived at the ER, his body was leaking cardiac enzymes because his heart had to work so hard to counter his low red counts. His platelets were effectively zero. He had pneumonia. He was given platelet infusions, antibiotics, and a full transfusion, but still his blood counts were dire. After being treated in the cardiac ward for four days, he was moved into palliative care, with the thinking that he'd been wiped out from the Darzelex treatments, and that he might be able to return home for a few comfortable, treatment-free weeks. For three days in palliative care, he got stronger. His lungs were clearing, he was eating more, and he was getting strong enough to speak. After a wonderful night, on Thursday 6/20, surrounded by family he crashed. That was the last night I'd have a conversation with him. Although he wasn't actively getting worse, his red count was still low enough to give him trouble breathing. Friday and Saturday saw him transferred to hospice care, and his breathing became more and more labored. At around 3:00am on Sunday 6/23, he took his last breath. I'm thankful that we got a few good days with him at the end, and that he died before he was in any pain. If anyone reading this wants to chat, please fee free to send me a private message. Love and light to all of you fighting MM and those with loved ones who are. Aggressive-Bus-8055: Hi there, hope you are doing well. I was diagnosed with both Multiple Myeloma and AL Amyloidosis about a year ago. I have no questions or worries - I just thought I'd write this out incase anyone has any questions. I'm in the UK and was put on a treatment called DVTD ( daratumumab (Darzalex®) in combination with bortezomib (Velcade®), thalidomide, and dexamethasone) it has worked really well and after 6 months of treatment I'm in remission. I had no issues at all with my treatment. (I was even shown by the hospital how to give myself the bortezomib injections & that enabled me to be able to do that at home & cut down on the hospital visits). At the moment I'm going into hospital every 4 weeks to get a daratumumab injection. My AL Amyloidosis has deposited the long chain proteins in my kidneys. So I have dialysis 3 times a week for 4.5 hours. There is a specialist unit in London for Amyloidosis that looks after me alongside my local Haematologist. I will be going down there once a year to get tests & have a scan to see how much of the proteins are in my body. I have also already had my stem cells collected. Apparently once I'm in my second remission I will be getting the stem cell transplant. For me I've just taken each day as it comes. I don't look at websites as I don't want to be worrying about what ifs. For everyone that is going through this - stay strong - and look after yourself. I'm thinking of you. L. Oldey1kanobe: My mom is on year 7 of chemo. She has been a champ-fighting so hard. We have run through many drugs. Current is Darzalex Fastpro. Light chains rising. Ugh. Anyone have a pep talk? Getting pretty deep into the bench for drugs. MyDadAndMyeloma: Hey all. I introduced myself and my dad, whose myeloma was caught very early after spending eight years in the smoldering phase, last week. You all were so helpful in calming me about the proposed treatments and gave me a lot of information to give to my parents as well as some questions to ask the oncologist. The thing that’s keeping me up at night right now is the fact that he’s going to start treatment next week. I don’t know the doses yet of the Darzalex, Revlimid and dexamethasone or frequency. My dad had bone marrow extracted yesterday and I believe they will solidify the treatment plan with his oncologist either tomorrow or Monday. Regardless, he is going to start some level of treatment within the next 10 days. We have a new immune evasive strain picking up steam here in the US, the BQ sublineages of omicron. Early data from parts of the world affected by this are that monoclonal antibody treatment post infection in otherwise healthy people is not really working. My whole family is fully up-to-date on our vaccinations and our boosters. We all received the bivalent booster within the last three weeks at varying times. My parents have both had their flu shot as well within the last two weeks. But in trying to juxtapose another cold weather Covid surge with a new sublineage against the fact that my dad will be in his first six months of treatment as this new wave is threatening to rise here in the US has me super concerned. I feel like I need to tell my mom to not take my dad to the grocery store with her even if he is wearing a well fitting mask, or better yet, to let myself and my husband do that kind of shopping for them. likewise, it doesn’t seem to me to be a very good idea for them to be dining indoors at least during the first few months, possibly the first six months, of his treatment. I have urged my parents to bring this up with their oncologist. I will find out on Sunday if they have done so or be able to gauge if they plan to do so. My concern is that they won’t because they don’t want to hear news that they don’t want to hear, and that my mother’s posture along with my dad‘s is that dining out together, and sometimes with their vaccinated friends, are part of their quality of life. And I get that, I’m just talking about suspending that activity and any other risky activity until he is headed towards maintenance level treatment. I know that if they make that decision and then my dad comes down with Covid and there is a bad outcome as a result, they’re not gonna remember the dinner and they’re gonna wish they hadn’t done it. So what say all of you with respect to safety given we are very likely to already be in the beginnings of another Covid surge? I am sincerely trying to plan for their resistance to affectively locking themselves back down during the first six months of his treatment, although I will be relieved if I wind up being pleasantly surprised. I just need to arm myself with information from others. RobbedByEndy: My dad (59) was just diagnosed with lgG kappa multiple myeloma from a hematologist/oncologist. We are awaiting results from bone marrow biopsy and he’s also getting bone X-rays. He is getting a blood transfusion and treatment with darzalex, revlimid, velcade, and decadron starting this Wednesday and will continue for 4 months. I will be his primary caretaker taking him to appointments and helping him manage any symptoms from this course of treatment. We meet with the nurse to discuss any questions we may have on Monday. I am scared as my dad has preexisting conditions like sleep apnea and obesity that could make this more difficult to beat. He’s also a smoker but is obviously going to need to stop that. Could you help me interpret this blood work? This is everything the doctor highlighted. I’m sorry I’m not very educated on this and I need to learn. We expect to learn more from the bone marrow test. Kappa Lt chain: 4670.7 mg/L Lambda Lt chain: 3.6 mg/L llg (m protein): 7437 mg/dl RBC: 2.30 (x 10*6/UL) Hemoglobin: 8.1 g/dl Platelets: 66 (x 10*3/UL) Creat: 1.28 mg/dl BUN: 28.5 mg/dl Calcium: 10.5 mg/dl Total protein: 11.4 g/dl Albumin: 3.5 g/dl Globulin: 7.9 calc Thank you amy-victor-27: I’m starting this Friday. I’m curious to know what people’s experiences are with this. I am taking singulair to help with transfusion reactions. Adept-Variety2162: ferndudekween: In 2019, I was diagnosed with Stage 1 MM and underwent chemotherapy and an autologous stem cell transplant surgery. I'm sad to announce that it has come back recently. I officially relapsed according to my doctor, who is giving me 2 treatment options: 1. **The Standard** \- Darzalex + Pomalyst + Dexamethasone combo 2. **Clinical Trial** \- Lefluomide + Pomalyst + Dexamethasone combo For anyone who has undergone or is currently doing the clinical trial, what has your experience been? Thank you all for your attention and sharing your story & thoughts.
Result via AI/LLM ✔
SURFACE BEHAVIORS: – Diagnosis of cancer – Treatment with Dara-Revlimid-kyprolis-dex – Relapse after stem cell transplant – Use of heavy chemotherapy options – Working remotely during treatment – Transition to CAR-T therapy – Complete response to CAR-T – Planning for future travel and life goals – Emergence of large mass around kidneys – Treatment with Teclistomab – Hospitalization and isolation – Mental health decline – Dialysis schedule and continued treatment – Growth of mass despite treatment – Exhaustion of treatment options – Gathering loved ones for end-of-life support – Sharing good news of remission – Seeking support and prayers – Expressing excitement and relief – Receiving a diagnosis of cancer – Undergoing intensive treatment – Experiencing physical symptoms and side effects – Regularly visiting the oncologist – Monitoring blood tests and scans – Receiving updates on disease progression – Receiving news of remission – Reflecting on the journey – Sharing the news with others – Test results within "normal" range – Health-related anxiety – Lack of understanding of test results – Declining health and physical symptoms – Hospitalizations and medical interventions – Hopefulness and optimism despite setbacks – Supportive phone calls and check-ins – Apologies for needing help – Caregiver role and responsibilities – Emotional impact on the narrator – Desire for a longer caregiving period – Wishing for a smoother journey for others – Diagnosis of multiple myeloma – Low function kidneys – Over a dozen fractures – Use of walker and wheelchair – Induction chemo for 12 cycles – Opting out of transplant – Pain management issues with older fractures – Gradual improvement in mobility – Kyphoplasty procedure – Feeling great – Experiencing fatigue – Undergoing chemo – Receiving stem cell treatment – Taking Revlimid and prophylactic drugs – Expecting to live for decades – Receiving biopsy results – Monitoring Kappa/Lambda ratio – Waiting for paraprotein numbers – Reflecting on past year – Feeling relieved – Planning for the future – Resuming normal activities – Hoping for a long remission VULNERABLE MOMENTS: – Receiving cancer diagnosis at a young age – Experiencing relapse after initial treatment – Facing uncertainty and fear during hospitalization – Dealing with physical and emotional pain – Coping with declining health and limited options – Coming to terms with end-of-life prognosis – Facing the uncertainty of stem cell transplant – Dealing with the emotional impact of the journey – Needing reassurance and encouragement – Receiving the initial diagnosis – Facing the possibility of death – Experiencing the physical and emotional toll of treatment – Waiting for test results – Coping with uncertainty and fear – Dealing with setbacks or complications – Adjusting to changes in lifestyle and daily routines – Processing the news of remission – Reflecting on mortality and the fragility of life – Feeling uncertain about test results – Seeking reassurance about health concerns – Experiencing anxiety related to health – Hearing the diagnosis for the first time – Experiencing the loss of hope – Dealing with multiple health complications – Watching the body deteriorate – Feeling the emotional weight of caregiving – Reflecting on the impact of the disease on the relationship – Coping with the loss of a loved one – Longing for more time together – Facing the uncertainty of the disease – Receiving the diagnosis of multiple myeloma – Dealing with low function kidneys and blood clots – Adjusting to the use of a walker and wheelchair – Facing the decision of whether to undergo a transplant – Coping with pain management issues – Struggling with the impact of fractures on daily life – Being newly diagnosed – Fear of the unknown – Coping with the side effects of treatment – Uncertainty about prognosis – Emotional rollercoaster – Receiving the cancer diagnosis – Recovering from septic shock – Being in ICU – Waiting for remission confirmation – Reflecting on the past year's challenges – Facing uncertainty about the future – Coping with the emotional impact of the journey – Dealing with potential setbacks or relapse – Adjusting to the new normal after remission CHOICE POINTS: – Deciding on treatment options after relapse – Choosing to work remotely during treatment – Selecting CAR-T therapy as a treatment option – Planning for future travel and life goals – Deciding to try Teclistomab as a last resort – Making decisions about end-of-life care and support – Deciding to undergo stem cell transplant – Choosing to stay positive and keep fighting – Determining the best approach for long-term health – Deciding on the course of treatment – Choosing between different treatment options – Deciding whether to participate in clinical trials – Determining when to seek a second opinion – Deciding whether to disclose the diagnosis to others – Choosing how to manage side effects and symptoms – Deciding whether to pursue complementary therapies – Determining when to resume normal activities – Deciding how to approach life after remission – Deciding whether to seek medical advice – Choosing to address health-related anxiety – Deciding whether to share personal health concerns – Deciding to pursue medical interventions – Choosing to remain hopeful despite setbacks – Deciding on the best course of treatment – Balancing caregiving responsibilities with personal life – Choosing to provide care and support willingly – Deciding how to communicate love and support to the mother – Reflecting on the meaning and purpose of caregiving – Deciding how to cope with the loss – Choosing to support others on a similar journey – Choosing the treatment plan, including induction chemo – Opting out of the transplant and relying on drug therapy – Deciding to undergo the kyphoplasty procedure – Determining strategies for pain management – Making lifestyle adjustments to improve mobility and quality of life – Choosing to have hope – Deciding to undergo treatment – Selecting specific medications – Embracing a positive mindset – Seeking support and information – Deciding on treatment options – Choosing to undergo biopsy – Deciding to monitor Kappa/Lambda ratio – Determining when to resume normal activities – Deciding on lifestyle changes for long-term remission – Choosing to seek emotional support or counseling – Deciding on follow-up appointments and tests – Considering potential clinical trials or experimental treatments – Deciding on proactive measures to prevent relapse