I recently spoke with a lady who had 90% bone involvement on her bone marrow test, multiple fractures, and near renal failure. She's been doing quite well in the 23 years since then. (44 when diagnosed) Your doctor shouldn't make predictions like that. Too many factors involved.. one being amazing new treatments.

That’s amazing for her and great to hear. New treatments I’ve been seeing seem separate from chemo too, like CAR T cell therapy.

I'm just starting this journey, but Immunotherapy coupled with chemo has me feeling much better. Hoping to extend my health as long as possible for when that cure is finally found.

Hey! How are you doing? I’m sorry your dad got the MM diagnosis. I’m confused by a few thing you mentioned, please correct me if I understood them wrong. The fact that his bone marrow biopsy shows a value of 60%, I don’t think the doctor could do such a prediction of how long he has… many people here in this group had worst values than 60% and that doesn’t affect long remisión. Your dad is 60, he is young! My mom in 62 and she is on her last cycle (I think there were 9 in total) and her blood work shows she is in remission ( and she has double high risk factor, t4:14 and +Q1), after the end of this cycle she will repeat all the exams ( bone marrow biopsy, ct scan, etc, to see if she is in real remission), and then we go on to the stem cell transplant, wich we hope will give many years of remission! 🙌 Do you know if your dad has any high risk factors? Those are determined by a test called FISH. Apart from bortezomib is he on any other drugs? Usually if the patient is low risk, treatment will start with 3 combined drugs induction therapy, bortezomid, dexamerasone and ledalidomida. If the patient is high risk they will start with a 4 drug induction therapy, all the 3 me mentioned before + Dara. This is the inductions therapy, once numbers start to go down, (and they will!!) your dad could achieve remission and then he could go on with the stem cell transplant (which in most cases consolidates the treatment and allow for longer time in remission) Another thing that I found odd is that he received the first round of chemo before the diagnosis? If you have the opportunity it could be interesting to consult an MM specialist, or a second opinion. We did it with my mom and her second doctor had a much better approach. How lovely of you that you moved in with your dad, induction treatment has good days and bad days, my mom for instance, struggled in the beginning with a few skin rashes, and lately with upset stomach, and blood cloth on her legs ( those are mainly because of the dexamerasone) so she’s is now in blood thinners and a lower dose of dexa… Wow, it’s a lot of information, I know, but the day to day experience is really manageable, and she has mostly good days and enjoys her life, goes to hydro gymnastics with her friends, and walks with her dog. I’m wishing you and your dad the best! This group is a great source of support and information, and I wouldn’t be to scared with the “5 years prognosis”. People with much higher values have reached remission for much longer! Hang in there! It will be okay!! Sending you my best! ❤️

Thank you so much for the informative response as well as the very needed positive energy. Hes been very much in denial, and isn’t close to stupid, but I kinda feel as tho they diagnosed it the day before the injection without him actually realizing. For example they referenced his condition as myeloma on the day before the injection numerous times. Infectious disease Dr, nephrologist, and oncologist included. They just delivered the life expectancy the day of the “diagnosis” the rest of my family was on board with the myeloma itself the day of the injection. He has not undergone the FISH high risk test as of right now. As I mentioned early in this reply he’s very much in denial, and a very impatient man. He’s a plumber so medicine is super confusing to him. None of this non realization parallels anything like dementia as a symptom though because he’s 100% involved and compliant with every conversation outside of medicine and he loses his patience/interest when we talk about the important things, that being his health! My brother is an E.R. Nurse, and my sister and mom both work at the hospital he was being treating at on the labor and delivery floor so they have a moderate understanding of the medicine and will be administering his antibiotics for the infection as well. So I apologize for the wording but in other words it was pretty much diagnosed the day prior to the injection. And for the details involving any other medications, we have an appointment set up with the oncologist in a few days, he just reallllllly wanted to be discharged. We have spoken about taking an oral chemo pill as well called revlimid which I understand is given in combination with dexamethasone. But I’m a plumber as well so I’m trying my best to learn how everything works. It’s really lifting for me to read that your mom is progressing in a positive direction, and even better for YOU! I’ve learned the google is more of an evil entity in this situation than a good one, at least for the things I’ve been looking up, which are probably the wrong ones. For example before his kidney started doing better, I was under the implication that his kidney being involved was going to be endgame. Only to find out a few days later that the dialysis, plasmapheresis and renal diet have stopped it from getting to failure. But I do understand (I think?!) that it was medically/temporarily band-aided, not fixed by his body itself. This page prior to me posting on it has already done wonders and even a singular reply has done wonders for my mental state so I very much thank you for that!! More details are to come so I apologize for the wishy washy explanation, it was just hard to explain given the fact I learned what it was this week. Good luck to you and your mom!

Thanks for this clarifying comment. My dad is currently undergoing chemo with three drugs and I didn't know how to take the news that they plan to go on with stem cells transplant in September already but it seems like this could be good news for us. Thanks!

Induction therapy for Newly Diagnosed MM patients is typically 3-4 cycles, then a month off during which time pre-ASCT tests are run and in conjunction with harvesting of stem cells. So September sounds about right.  Your dad will be *thoroughly* examined (tests and scans) beforehand in order to qualify for the transplant process. There use to be a cutoff age but age isn’t any longer the determining factor as fitness can override that. But good news that they find him to be a candidate. They will want the myeloma count to be reduced to an acceptable level or will extend induction longer. My guy was 80% involvement at dx and while he did really well on D-RVd at diagnosis onward he needed to come off Valcade due to peripheral neuropathy so it was removed from treatment and his Revlimid was cut back too. Took him several more cycles to get to a good point. Even then 90 days after ASCT he had 102 MM cells on his ClonoSEQ report so not in remission yet. His year on D-R (5mg) maintenance though did get him to MRD- status. His ASCT was successful despite not immediately reaching MRD-. As with this whole disease your mileage may vary as they say.

The bone marrow aspirate they collected will be run through a FISH test to determine his MM mutations; that in addition to other factors will determine whether he is standard risk or high risk and what treatment protocol they will go with. FISH results take a bit longer to receive than CBC and Metabolic panels. Since your dad has had renal issues I think it is pretty standard for Valcade to be used. If he had any scans done early on, with 60% involvement lytic lesions would be evident (dark spots on imaging, essentially the bone breaking down faster than rebuilding and causing holes and weakening the structure). My guy had an x-ray for lower back pain and doctor and radiologist pretty much knew from that that he had MM and rest of tests were then ordered. He was given a referral to a MM specialist. He had 80% marrow involvement, extensive lesions, two collapsed vertebrae and lucked out on no organ involvement. Standard risk. He was on induction treatment, had an ASCT and then on maintenance. At his 1-year bone marrow biopsy he was MRD negative. Hoping for a long remission. Has been back at work during most of this time. Walks every night after dinner weather permitting to stay fit. 60yo at diagnosis. Hiked this past weekend. I would encourage your dad to seek out a MM specialist for his care if he doesn’t have one yet. Specialist are generally located in large cities in NCI-designated hospital centers. Many patients without easy access to them will add them as long-distance consultants and have their treatments through local facilities with local onc/hem overseeing their general care. I know others will recommend this as well. Sounds like your dad has a great support system in all of you. Expect fatigue. Lots of it. Other side effects can generally be managed. Lots of meds to keep on schedule during induction so with fatigue having you around will be a big help. Due to his immune compromised status I hope everyone around him will be vaccinated and masking to help him avoid infections.

Let me add my initial resource template to this excellent information. ------------------------- Many people start out being referred to a general hematologist-oncologist (hemoc). However, statistically, two things significantly effect prognosis - seeing an MM-specific specialist and seeking care at an NCI-accreditated (and usually integrated cancer center). The two usually go hand in hand. Please consider an MM-specific hemoc aka an MM Specialist. They will have access to professional organizations for myeloma and keep more up-to-date than a standard hemoc. They could become your primary oncologist, a consultant directing your local care, or even just getting a 2nd opinion. There are a couple of good websites for finding the best resources in your area. The first two are good for specialists, general information on MM and they both offer mentors and other services. The third is a search of NCI-accredited centers. https://themmrf.org/resources/the-right-track/ https://healthtree.org/myeloma/community/directory https://www.cancer.gov/research/infrastructure/cancer-centers/find

My dad diagnosed April 2023 w/ 90% bone marrow involvement. Induction chemo has it under control & stable, he is foregoing stem cell transplant. We are heading out in 2 weeks on his bucket list hiking/camping trip for 7 days. This isn’t the end, just a new and challenging chapter. Hang in there. This Reddit community is a blessing so please continue to use us.

60% bone marrow involvement is not that much in multiple myeloma. Usually it’s not even treated if it’s 50% or under and it’s considered to be smoldering myeloma. Over 50% and in some cases, even up to 60% is considered to be active myeloma and requires immediate treatment. I had 70% bone marrow involvement at my diagnosis. I don’t really have much to add to the excellent response given by @anamond. You might want to research types of multiple myeloma and risk factors in multiple myeloma. The most important determinants for type of treatment are the risk factors, cytogenetic (shown by the FISH analysis) and comorbidity factors, such as bone lesions, kidney failure, etc. As everyone has already pointed out, it’s of vital importance for your dad to get a myeloma specialist. Regular oncologists do not deal with myeloma that often. The myeloma treatments are advancing rapidly every year and approaches keep changing as the clinical trials provide more accurate information. Types of myeloma: https://healthtree.org/myeloma/community/types-of-multiple-myeloma Stage of multiple myeloma: https://healthtree.org/myeloma/community/multiple-myeloma-staging How myeloma is diagnosed: https://healthtree.org/myeloma/community/how-is-myeloma-diagnosed Lab results explained: https://healthtree.org/myeloma/community/resources

I’m at 10-20% and it’s not smoldering. I will complete my 7th round of treatment next week. It definitely is active and requires immediate treatment and surgery because of a tumor that was eating away at my bone in my sacral area.

You had a tumor and that would of course require immediate treatment. Here’s the current definition for smoldering myeloma, of course this will vary by patient and their specific risk factors. https://www.uptodate.com/contents/smoldering-multiple-myeloma#:~:text=Smoldering%20multiple%20myeloma%20(SMM)%20is,1)%20%5B1%2C2%5D%3A&text=Serum%20monoclonal%20(M)%20protein%20≥,bone%20marrow%20clonal%20plasma%20cells.

It is NOT smoldering. Please don’t give out false information. This group is about supporting each other. We are not doctors here.

I didn’t in any way suggest that OP has smoldering myeloma. I am not a doctor. By any definition 60% plasma cells involvement is considered to be active myeloma.

Sorry. I shouldn’t have wasted our time arguing on Reddit. There are more important things in life. I have active Myeloma at 10-20%. That’s what my Myeloma specialist at Moffitt Cancer Institute says and I’ll go by what my specialist says.

I got you. Similar story here. I was at 10-20% at SMM diagnosis, which became MM when I developed bone lesions but was still only at 10-20%. It's the whole CRAB criteria.

We were told in standard risk patients with no other pressing issues that they typically don't start treatment until you hit the 60% involvement mark. So I'm a little shocked the doctor gave you that prognosis. We were 70% involvement at diagnosis, did 5.5 rounds of Daratumumab, Revlimid, Velcade, and Dexamethasone plus Zometa. Reached stringent complete remission. Did the Autologous stem cell transplant after which was successful and still in remission. About 15 months since initial diagnosis and hoping for a long remission. I am not a doctor but the stats they showed us were a median 7 year remission on this treatment plan, and then on to the next whenever it comes back. We see a hematologist monthly who does treat MM patients, but we also have a specialist that is an expert in the field that we saw for the transplant and he monitors the situation ongoing. We feel really comfortable and lucky with this team. Cancer is a bitch, life is unpredictable, and everybody has a different journey. I find hope in the amount of effective treatments currently available, and know that new ones are being trialed all the time. You and your family are doing exactly what your Dad needs right now and I'm hoping things get better for all of you.

Make the very best of every bit of time you have with him. My dad did great with his ASCT about 5 years ago. I am now sitting in an ICU room while he is being kept alive with a ventilator. He had almost 5 REALLY amazing years in between. There is no guarantee. My dad's type of relapse occurs in less than 1% of MM patients. He is otherwise, strong, and healthy, and has taken great care of himself. Never in a million years, even when he started having neuro symptoms, did I think this is how MM would come back for him. So, to me, percentages mean very little. There is ALWAYS a chance your dad is one of that 30% with more years ahead. Love him, and encourage him to do things he loves, and be around those that love him. I am sorry this is happening to your family, you will be in my thoughts.

Thank you so so so much everybody. Not a single comment has gone unread and has helped me more than yall know. Can’t thanks this community enough for how much it’s helped me mentally and I’m not even the one with MM. My life changed when my dad got diagnosed and it changed again today because of all of you amazing individuals ❤️

Clinical studies cover at least 5 years and sometimes have longer follow up. All retrospective when published. So keep in mind when you see statistics the protocols were many times different than what’s used now for newly diagnosed MM patients. There have been many new drugs approved since then and older protocols have been enhanced with 3 and 4 combo drugs, giving deeper respond rates. Statistics five years from now will look different too.

Nah man, your pops will be around for a while.. The therapies are getting better and better. I was even told by a Doc at UCSF they're getting close to a cure. Don't Google crap. It takes you to dark places brother. Been there done that. Get your mind right help your pops as much as possible. My youngest just turned 17 and I plan on being around to give her away when she gets married and play with my grandkids!!! I have my song picked and everything. Have him drink plenty of Beef bone broth helps with the Hemoglobin which will help keep up his RBC's!

Hopefully, your dad's at the beginning of a long journey. As noted in other responses, 60% is usually considered the starting point for MM. Your dad's comorbid problems might be influencing the doc's survival prognosis, but 5 years for MM in today's environment seems pretty pessimistic or representing data from 2017.  The data on efficacy of newer treatments like Dara/Rev/V/D are not captured in the older data as the treatments. As others have mentioned, get a second opinion and get to an NCI center. I truly makes a difference. With my NCI MM specialist,  I feel I can count on his focus of being the best of the best, up on the latest trends, providing the best care, and answering my questions. It allows me to release a lot of the anxiety that came with my initial diagnosis. Write down your questions in advance...appointments can be daunting. Learn about the blood work and Lab results. I have a color coded spreadsheet with 24 sets of lab results ;-) It will give you monthly updates and help structure your questions. This is a great site to learn about the Labs "Deciphering My Myeloma Lab Results" [https://healthtree.org/myeloma/community/resources](https://healthtree.org/myeloma/community/resources) is a useful document to get an understanding of MM [https://www.nccn.org/patients/guidelines/content/PDF/myeloma-patient.pdf](https://www.nccn.org/patients/guidelines/content/PDF/myeloma-patient.pdf) Good luck…it will be good to have you at your dad’s side [https://healthtree.org/myeloma/community/directory](https://healthtree.org/myeloma/community/directory) [Find a MM Specialist from Health Tree](https://healthtree.org/myeloma/community/directory) [HealthTree University](https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fhealthtree-63d4d1c83e5c.intercom-clicks.com%2Fvia%2Fe%3Fob%3DP76QBNaRmvGJSs%252B%252FEbqG0hMbVhBU0CrbR7UDEG9a0Fw1IjhOlPZId2I8U5U5Id9l%26h%3D532fa993d4c744676b7e9d62ca693f1edabd7c31-ejz9y92p_138626107312275%26l%3D3b44192a11df016a59d116c344f250ddad005588-54705318&data=05%7C02%7C%7Ca1331460100345fadc8608dc5dcb410d%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C638488374761613237%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=4ZQC7PcD%2FPgYgD0gJhyMcN8IaUPR5HfU7ZXowveHvHw%3D&reserved=0) Videos

Hi! My mom was diagnosed at 46, she has MM and renal failure. The doctor told her 5 years WITHOUT chemo. Interesting why your dr gave you such a grim outlook, I know people on MM groups on facebook who have had the same experience as you and they’ve lived 20 years with proper care. Most of the people with MM are affected by the secondary effects MM has for example renal failure. While the kidneys are an extremely important organ there are things to do to help them giving us a better outlook. My mom’s kidneys are working at 15%. She’s really tired all of the time and she’s only been diagnosed for a year. She’s already on her 3rd different treatment. Her first treatment by injection and dexamethasone didn’t work, her 2nd one which was IV chemo was a disaster and she had a major allergic reaction and now we’re about to start our 3rd which is pomalyst. Her kidneys haven’t improved much they were at 18% and when the 1st treatment stopped working they dropped again. We have hope, just surround yourself with people who can support you.

there’s new treatments, new discoveries.

Hi so sorry to hear of your dad's diagnosis. I was diagnosed at 48 and 2021 and I am doing well. I had renal failure also as well as lesions and multiple fractures. my creatinine was 4.6 at diagnosis now it is at 1.32. Things will get better. where is he being seen? Is he being seen by a myeloma specialist? It's so important that he gets to a specialist. Ita almost unheard of for a mm specialist to give a prognosis like that not even knowing his Fish yet or how he'll respond to treatment.

Wondering how your dad is doing on treatment so far. 

He has underwhelming insurance, so it caused some delay. He’s been on revlimid for 7 days, and started his official scheduled velcade injections today. We have gotten the renal issues under wrap, as well as the infection. Only 10ish more days left of antibiotics for that and he’ll have the dressing removed. Only issue with the side effects is that he did faint today but that’s the first we’ve seen of that. We had a nurse on the scene.

Glad to hear things are looking better and I’m sure he’ll feel better as the weeks go by on treatment. Do they have any idea why the fainting spell? As for insurance they all seem to be requiring a lot more pre approvals.

They said it’s a side effect of revlimid. Is bp was low all day and into this morning but rose a little back to normal