Hello, I have decided to share my journal because I believe that when we interact with others it helps to have another vision of what we are experiencing. My "case" began on January 26, 2024. When I was diagnosed, I thought that the results were wrong and that there was an error. My diagnosis was: - Plasma cell leukemia (CLL) w/t (14:16) - Multiple bone lesions related to plasma cell neoplasm - Normocytic anemia. At that time I was completely asymptomatic. If it weren't for the results, I thought that the only thing I needed was a blood transfusion to increase my hemoglobin, which was dropping in every blood test from August to November. My family and I were surprised and very confused. I have to give credit to my doctors, nurse practitioners and nurses, who have been excellent to me from the first moment. I started my chemotherapy treatment on 1/29/24. My treatment is based on Daratumumab + VRD, Revlimind and once a month Zometa. On my last visit with the oncologist, he told me that I am already in partial remission. Therefore, we have already started the fifth cycle until we reach six cycles and if everything continues without any problem, I will have the cell transplant for the month of July. It is not until now that the fact that I am sick is sinking in to me and that if I do not continue with all this my life may be very short. Really, if it weren't for all the blood results, bone marrow biopsy and the complete body PET CT, I couldn't believe I was so sick. It is only now that my body is feeling the effects of the chemotherapy. Thank God, the side effects are only now affecting me more. I am more tired physically, mentally and even spiritually. At the beginning of this new year my goals and projects were not these. I thought this was the year that was going to put me where I was going to climb higher in all terrain. But it was not like that. When I read all of your comments, my prayers go to all of you. Because although I haven't had any damage to my major organs and the symptoms I'm having now aren't that bad, it makes me think something like this can be so devastating. Not only for oneself but also for the people around us. I think the time will come when science will find more solutions for all this. I hope I can get this to live a little longer and enjoy life with my family. Not only me, but all of us that are affected by this.

I was diagnosed with mm stage 1 in 2018 and am now in remission. I want to pass on that my success is due to my team. My team is my Doctor at the hospital but also and very importantly my Naturopathic doctor. I went through my chemo, a stem cell that didn’t work, more chemo, maintenance of Rev and Dex now on no prescribed medication. All the while having visits with my Naturopath and following her advice to enhance my treatment and keep my body as healthy as possible. My neutrophils are quite low due to the past medication but that’s where supplements and strong diet click in to get the B12 needed for white blood cells. I’m not going to beat my head against the wall to say to get a good holistic doctor. I have proof that we need healthy food and supplements to get to remission. Do the work. Find a well recommended Naturopath. Mine does all her visits virtually so that makes it easy as she is an hour away. I saw her every 6 months or so when I was in treatment and now just a few times a year to be sure I’m on the right path or if I have a question about something I’ve read about. Go on the internet and read about success stories with the addition of supplements to enhance the effectiveness of your treatment. One thing I still take is Black Seed Oil or Black Cumin Seed Oil. My numbers began to get better right after I started it. I don’t take the dosage on the bottle. It’s too much and upsets my stomach. I take 1/2 tsp twice a week. Start with a small dose and once you get an upset stomach you know you’ve reached your limit. I hope this may help some people. Thanks

I'm wondering if there is anyone else out there who suffers from cluster headaches? They're probably unrelated to multiple myeloma although I have heard of at least one case where they were directly related. And in all events, it's a challenge to deal with both, and I'd appreciate hearing from anybody who's also trying to do that. Maybe we can benefit from sharing our experiences. Thanks in advance!

Rev Rash Home Remedies? After one disrupted (two shots of Zarxio/Filgrastim to get my abs neutrophils back up) first round of induction on DVRd the Rev Rash showed up over the weekend. I understand that's about when it hits. The doc is suspending the Rev again so I can detox, I've taken Claritin and am using hydrocortisone on some of the worst spots. However, given the extent of the rash, I would need to buy the cream by the quart. Benadryl isn't an option for me as it turns me into the Creature from the Black Lagoon. The section here on possible remedies for rash is a bit light so I'm wondering if anyone else here has tried off the shelf stuff, used Grandma's Secret Salve, or some poultice from the local necromancer.

I was by coincidence diagnosed with free light chains MM in September last year. Stage 1. Standard risk. Feel (and felt) 100% well. 50 years old. I have now gone through 6 rounds of induction treatment and my FLC levens can no longer be detected in blood or urine. “Normal levels”. I have always been hesitant to ASCT (as I am worried about QoL aspects medium - long term) and although ASCT is my doctors recommendations at this stage they have agreed to give me 1-2 more rounds of KRD. Then we will take a bone marrow test to check for MRD neg. My questions: 1) has anyone here achieved MRD neg/CR through induction treatment (before ASCT) ? 2) if so has anyone postponed/saved ASCT for later? If so what has been your experience? 3) what have your doctors recommendations been? In The Determination phase 3 trial Dr Paul Richardson concludes that for young transplant eligible patients achieving CR/MRD neg through induction treatment the results are the same ASCT /no ASCT. For those patients (young, CR and standard risk) postponing ASCT “makes a great deal of sense” Dr Richard says. Yet, it is not standard of care…

Looking for men who have PLL leukemia

Hello. I am autistic. I found out in December. It's still sinking in. Everything is different now, time feels fleeting. There's not enough time to process, to make sense of it all, and to feel caught up. And yet, with a new perspective, time passes more slowly. More deliberately. More intentionally. I would like feedback, from any who have gone through this before. Chemo is May 13th. I have been briefed on what to expect and the formalities. Hospital policies and procedures, forms and releases, disclosures, disclaimers, descriptions. But it's just paper, with no emotion, and no convincing way to convey expectations. Going in blind, I would like insight into what to expect. The parts that are not written or discussed. The stories only told by family and survivors of what they encountered, experienced, and felt. What stood out, and what what missing. What it felt like, and how the days passed. Thank you..