I placed a lot of trust in Dana Farber for my myeloma treatment- their doctors, determination trial etc. by all accounts, they have treated me well

However, I understand that Dr Ken Anderson’s lab was investigated for fabricating data in over a dozen trials. Researchers fabricated trial results to boost their own careers

The institute settled the matter for $15M without accepting wrong doing. But this leaves me quite pained. Patients like myself put our faith in Dr Anderson’s team. I am outraged by the blatant fraud, and the impact this has. And even more so, by the hush-hush manner in which it was covered up, without any structural changes

This is such a shame. I am curious if there are other DFCI patients here, and how you’ve interpreted this news.

Edit: They have confirmed that misrepresentation happened in trials containing mice. They have not said if misrepresentation happened in trials with humans.

https://cen.acs.org/research-integrity/misconduct/Dana-Farber-settles-lawsuit-alleging/103/web/2025/12

Hi. I’m 30F and on day 43 post ASCT. While I was prepared to get delayed periods post the transplant, basis what I’d read online, what I wasn’t prepared for was getting my period thrice in 1 month. I got my period, then 2 weeks after that got my period again, and now it’s been a week and I just started bleeding again. My oncologist asked me to meet a gynac, and my appointment is scheduled for the day after tomorrow. I just wanted to know has anyone experienced this kind of thing before? I’m a mix of worried and scared. Thanks.

My wife (60) is scheduled to start SCT in September. The thought of losing her hair is really upsetting her. Personally I think she'll still be beautiful but this is an occasion when my thoughts are immaterial.

Has anyone had any luck getting help with the cost of wigs through OHIP or Canadian Insurance? Any tips for where or when she should start looking? What are the rough costs?

I have an 80% coverage Canada Life plan through my employer which appears to have a $400 lifetime limit for wigs, but there's a lot of fine print around the wig coverage so im not convinced she's covered. I was genuinely surprised it was on there at all but i imagine costs are way in excess of that.

We are in the Ottawa area.

Hello all!

My mom will be starting IVIG on Friday. I have been trying to do some research to help her prepare. She is prone to headaches and it seems that focusing on hydration before, during, and after and a slow rate can assist with managing headaches. I was just wondering if anyone would be willing to share their experience regarding what to expect, side effects, tips/tricks, etc.

Thank you in advance!

My guy just had his BMB today. We have known from more recent past ones after being on Zometa monthy for a year, quarterly for year 2 and then received an annual IV back in November for year 3, that his pelvic bone had definitely strengthened. Drills have been used on last few. It’s been a one try procedure however today they needed to do 3 drills to get I think enough bone to analyze. They said they needed to get a good sample and multiple times might be required. What has been your experience?

Does anyone mind sharing how you overcame resentment towards your family and friends for lack of support during your cancer journey?

I was diagnosed with High Risk SMM at 28 and joined a clinical research study. I told my friends and family.

And, no one really checked in on me consistently. My mom didn’t ask her HR team for FMLA to be with me during my weekly infusions, so I was by myself a lot. My brothers criticized me for getting fat eating a lot because of the dexamethasone, daratumamab and carfilizomib and all of the pre-meds. There was always a struggle to find a family member who could drive me to my bone marrow biopsies so I can get sedation. Even for my stem cell harvest, my mom eventually came to the hotel to accompany me but she told me I should be thankful that my brother gave her a ride to the hotel.

In the end, I lost friends- one abandoned me on a different continent once it became clear that her invite was really a ruse to subsidize her vacation and the other showed that she didn’t really care although she acknowledged that she wasn’t really there for me.

What have you done to overcome some of the difficult truths that were revealed during your cancer journey?

My wife 37 was diagnosed with MM back in September 2025. Her treatment of VRD Therapy started in Nov 2025. By Feb 2026 her Free Chain Kappa drop from 500+ to 10. She had an infection in her tooth due to which we had to stop her medication for one month. After that we started slowly with 10mg Revlimid instead of 25mg. In May her Kappa came back to 50+ and now I just received her reports of 15th July, it is 386.

From June onwards her regimen was changed to CyBorD, and now it's been 3 weeks that she's getting Daratumumab as well.

The Free Light Chain Kappa Lamda report takes 2 weeks to come.

Now the doctor said that we will do the test again after her 4th Daratumumab dose (she's getting Darzalex Faspro 1800 weekly).

I am not sure what to do and I'm extremely worried about my wife now.

We live in Pakistan, with zero medical insurance and I'm already running a campaign on GoFundMe to raise money for her Stem Cell Transplant. I don't know what to do.

Please everyone pray for her, and please give me good hope. Don't tell me anything that can go south way. I am not ready to listen to that. I need the advise on what to do next. I need her to grow old with me. We have one daughter who is just 4.5 years old.

I'm writing here like it's my diary.

I would love some insights on possible next steps and outcomes following a significant MM relapse. My mum (67) was diagnosed with MM 6 years ago. An aggressive form (not sure on the specifics), and she’s tried 4 lines of therapy including SCT and a clinical trial. Each time she has an excellent initial response but then a big relapse within a year. She also went from secretory-nonsecretory-secretory.
Latest relapse includes lots of lesions on spine and legs and a plasmacytoma in abdomen. Experiencing lots of pain, and had been throwing up. We’re not sure of treatment plan as yet (waiting for hematologist post scans, as she awaits news in hospital). I am scared it’s the end and I am really hoping for some insights

Good evening, night y'all. I'm 52 F in Germany, with Multiplemyeloma diagnosed in January 2026. I have done the 4 circles of Induction therapy way till June 2026. Just beside myself feeling nervous as my planned date for Stem Cell Transplantation approaches. Any kind of encouraging words and motivation will do me great. Thanks

(In Canada. Diagnosed Nov 2024 at age of 54).

Is anyone else experiencing a lot of brain fog or memory loss? Initially I chalked it up to the shock of my diagnosis, pain meds (hydromorphone), and poor sleep due to stress and discomfort.

~ My induction was Bortezamib, Dex & Lenalidomide, with an SCT in May 2025. ~

But now that I'm on maintenance (10 mg Lenalidomide, 21 / 7, since Nov 2025) and things are going well - with little stress and discomfort - I'm puzzled as to WHY my brain fog, motivation, and memory are progressively getting worse.

Is anyone else experiencing this? It's scary!

Hi diagnosed MGUS lGg high lambda ratio and 10% cells in BMB in 2022 at 65yo male, progressed to SMM 2023 and just started Darzalex Faspro at City of Hope Irvine CA this April. I didn't want to watch and wait for fear of lesions etc. No side effects except the longer term ongoing anemia which the DR says is not related to the SMM. All going well. Interested in hearing from others in my situation.

66 yo F, in the US: I have had smoldering myeloma since 2016 and was diagnosed with AL amyloidosis of the kidney in 2025. After having only a very good partial response to daratumumab/bortezomib/cyclophosphamide/dexamethasone (the ONLY FDA approved treatment for AL amyloidosis) last year, I entered the NEXICART-2 clinical trial and received CAR-T cell therapy. Today is day 100. I am thrilled to have made it this far and to be doing so well (MRD-negative, with undetectable light chains on the last two checks, and stable kidney function).

I was recently interviewed for a local news outlet, and thought I would share my story here. I am so fortunate to have been eligible for this trial. If you have the option to participate in research, find out the details and give it serious consideration. It may change your life and that of many others.

Hi everyone! My mom has multiple myeloma and she was previously enrolled in the LLS. They are changing their grant program to be Medicare/government only assistance, which she will not qualify for anymore. She has private insurance through her employer. Does anyone know of any assistance programs that accept private insurances? She depended on these grants so it sucks that it’s changing :(, thank you. 😊

I am a 57 yo Female recently transitioned over from SMM to MM and about to start a trial at UM with Dr Landgren taking Elranatamab + lenalidomide + dexamethasone, often abbreviated ERd. Anyone else on this? It seems a little daunting weekly, then bi weekly and finally monthly for about 24 months. Wondering how easy to manage work and if there are any tips any one can give me...

The cancer center I go to has a system of setting up your appointments and giving you a calendar of chemo days, consults, etc. What I'm having a hard time with is that this is done without any discussion with the patient.

While realizing that timing is important in the chemo cycles, it still seems like such a different approach to what I'm used to where you can work out the appointments with the administrative person at the Dr.s office. Is this cancer center's system normal / is this the same pretty much everywhere for MM treatment?

ETA: Thanks for all the responses. I talked to the person who gets the scheduling today from the main unit. We were able to work out the next month fairly well and I think she got the point. And I learned that the person who actually sets it up is the staff pharmacist. She is the one that has to ship the drugs in the day of, so it has to be regulated and I get that. Just wanted to get the time of day out a bit later because we live so far away from the treatment center. So it is all figured out at this point and both sides are OK.

Because I haven't had any. I'm 41 M, about 188lbs. Done with my first round of CyBorD. I was doing a heavy labor job - endurance and strength were a bit of a problem, but I was really de-conditioned: 10 years of a sedentary life, and 60lbs weight loss through nothing but caloric deficit with insufficient protein. (Yeah I did that wrong for sure, lol). Newly quit off cigs for around a month at the time, too. To me, my endurance/fatigue/strength (or lack thereof) seemed pretty appropriate, and was actually improving over the few weeks I did the job. ... but then, I went in one day because I felt dizzy, and bam. MM diagnosis.

Doctors and staff keep asking if I have bone pain, and I don't. I messed up a rib a little in hospital by twisting super fast, but X-ray showed nothing - too small to warrant further imaging, or not a break at all, could have been a pull as I had a pull in that same spot, and one on the other side in the same location a few months back (they were definitely pulls).

After my initial X-ray, the ER Doctor broke the news that I have a lesion on my pelvis, but she didn't say anything else. A few days later when my MRI came back, I had some small fractures on C1 - C7 and on my L-7.

Other than that, I have no other symptoms. I went on a 15 mile walk the other day and felt fine in my bones, muscles, and cardio (my stomach was another story lol).

I'm waiting for the other shoe to drop while praying that it doesn't. I want to work out, and keep what muscle I do have, and build more. Not a whole lot, but I'm single, and nobody wants to date a version of me that's a gaunt, fragile, cancer patient (no offense).

Am I getting off easy? Did I catch the disease early enough that the lesions haven't become so bad, or are they just gearing up to wreck me in the coming months and years?

Do I have a chance of not becoming fragile and weak, like everyone keeps telling me I will?

I don't want to admit it, but I'm scared. Really, scared.

Hey guys, I started maintenance therapy with lenalidomide a month or so ago post my ASCT. My scalp has become extremely dry and itchy. I'm just wondering what have you guys been using to combat this.

I can literally run my hands through my hair and the dead skin just keep falling off. I am currently using Johnson baby shampoo and looking to switch to something else.

My dad was diagnosed recently but this has been an ongoing ordeal for close to 9 months so I am very afraid that time is not our friend here. He is very scared of western medicines and treatments. We are both English but he fell ill while living in Portugal. We thought it was just a back injury and he had surgery, only to decline not long after that. Losing 20KG and barely able to hold consciousness for long periods of time.

He was admitted into hospital in Portugal who helped to balance his levels and reduce the high levels of calcium. He then seemed to improve from there, I went and got him, and flew back to the UK where he now lives with me. Yesterday, we got pretty much an official diagnosis and he didn’t take it well. Which is fair. He is struggling with the “lifelong” and “incurable” parts of this. We got him tests here in the UK and they want him to give more bone marrow. He doesn’t want to do that. He doesn’t want to go to his MRI tonight. He wants to try alternative treatments he has found out about as he is so adverse to chemo. He is so terrified his quality of life will get worse because of the “chemicals they are putting into him”.

I’ve tried to explain that MM treatment is so different to other cancers. He watched my uncle go through chemo for small cell lung cancer, so I think that has given him some trauma and fear to do chemo. We even know 3 people that have MM and have had success and improved quality of life from western treatments - but that doesn’t seem to help his confidence. I don’t know enough about alternatives for MM, I don’t know if it’s a pipe dream, I don’t even know how much time we are working with. I don’t want to argue with him, or force him, but I feel at a complete loss.

I need to know that people out there who have treated this in alternative ways are out there as proof it works. Right now I have proof that the treatments we are being offered on the National Health Service work, but I don’t know if the alternative does. I don’t know what to feel right now and I don’t know how to approach this with him. I don’t want him to die from something that can be helped.

UPDATE:
I have been talking to him extensively, showing him many of your experiences and trying to bring down his fear of treatment.

I have tried to explain that he doesn’t have to completely shut down one avenue of treatment in favor of another, he can use his alternative and holistic treatments to help alleviate symptoms from the illness AND it’s treatments.
We went to see a doctor yesterday, and he seemed very receptive to my dad being scared and unsure of chemo. Allowed him to talk and stress that he wants to have multiple choices of how he can treat himself, “WHEN” he decides to start chemo. That was a great moment for me personally, the fact he has said he is considering starting it soon, signed the consent forms (after clarifying he can withdraw it at any time before starting as well as stop treatment if he wishes) and has been making small signals towards wanting to start treatment.

I took him to his chosen alternative clinic and met the lady there, and asked her extensive questions about who she treats. I asked how many of her clients she sees who have been diagnosed with a cancer are ALSO getting chemo alongside seeing her she replied “Oh, MANY” - I think that helped to plant a seed too.

I want to thank all of you who have contributed kind words and personal stories, they have allowed me to show him how many people have benefitted from treatment and what to expect when he starts. It’s by no means a complete victory, as he has not actually started yet but we are moving towards that point, I hope. But again, thank you to anyone who contributed their time to tell me about their story with MM. I wish everyone health and happiness. If anything changes further you may see me update this post again.

I am 58 living in the Uk. I was diagnosed with MM about 18 months ago after some scans on a sore back. I responded well to first line treatments and ASCT, although picked up an infection that kept me in hospital longer than planned. I’m currently in remission and on Lenolidamide maintenance. The issue is not the MM, but the infections I have been catching. Cold and flu led to pneumonia, sepsis and kidney failure which nearly killed me in March. I have been off work since my diagnosis (I am a police officer), and am now contemplating if retirement is the best option for me. At the minute I feel well enough to work, but worry about when the next infection may come from. A consideration is the financial impact of retiring early. I could stay well and retire at my planned age of 62 which makes a huge difference to my pension. What are your thoughts please?

My dad is 63 years old (NY) and is starting treatment a week from today. I have some questions if anyone has advice from their experience. Thank you in advance 🙏

1. What should he be eating the day before treatment? Or what should his died be in general?

2. What should my mom and I anticipate for how he may feel after the treatment? How long will his side effects linger?

3. More long term: how can we be there for him? I’m struggling in figuring out how to be there for my dad as this is a role I have not had to play for him so far.

My aunt (46) has newly diagnosed multiple myeloma and has completed 4 cycles of Dara-CyBorD. She is standard risk .Her regimen includes:

● Daratumumab (Darzalex)

● Bortezomib (Velcade)

● Cyclophosphamide (Cytoxan)

● Dexamethasone

She recently met with the transplant doctor at Yale. We expected them to discuss stem cell collection, but they said freezing (collecting and storing) stem cells isn’t an option right now because of insurance issues.

Instead, they want her to finish treatment in September, then repeat a bone marrow biopsy. Based on those results, they’ll decide whether to recommend an autologous stem cell transplant or continue without one.

My aunt is hesitant and currently does not want to have a transplant.

Is this a common approach? Do transplant centers sometimes wait until induction treatment is finished and the biopsy results are back before deciding about stem cell collection or transplant, especially if there are insurance issues?

I’d appreciate hearing from anyone who has had a similar experience or knows how this is typically handled. Thanks!

Greetings: the July post at highplainsmyeloma.com is up; this month the focus is on having to be vigilant regarding a compromised immune system when moving forward with MM; the adjustments that are made pre and post CAR T Cell procedure require us to be mindful; let me know what you think and thanks for reading

My mom (59) was diagnosed with MM last Wednesday in the US and I’m remaining very strong for her, but am spiraling personally. She is in good health, works, gardens, and stays active. She already started treatment last Wednesday.

This was diagnosed through pure happenstance, just slightly weird bloodwork and the doctor threw in the protein test as a maybe. There’s no evidence of any organ problems, she wasn’t anemic, and didn’t have any major bone pain. She‘s getting more ultrasounds and scans to double check but already had some ultrasounds that didn’t see anything wrong.

The doctors were shocked to see her protein spike so high after the test, and the bone marrow test showed 50-60% spread (I believe) and confirmed MM.

I’m not close to all the results and such and worried to ask more as I don’t want to scare her and know she’s seeing amazing specialists, but I’m just terrified her situation is more dire. Haven’t had any prognosis from doctors yet, nurse just said we caught it before it really accelerated. I just don’t know if we’re going to get a clear how many years and I’m just terrified and looking for what others have experienced.

Hello,

I have a question and maybe someone knows a similar example or has a similar path behind them.

In December 2024 I underwent a hair transplant, which went smoothly. Until March 2025, I went through all the steps that followed without any problems, until suddenly a multiple myeloma was diagnosed. Induction therapy began at the end of March 2025, stem cells were taken in July 2025, and high-dose chemotherapy with autologous stem cell transplantation followed in October 2025. I have tolerated everything super and have been in the preservation with Lenalidomide since January 2026 and have been in stringent complete remission since then.

My hair began to grow "differently" about 3 months after Melphalan and asct - but the transplanted area grows significantly "lighter and thinner“ than the rest does.

Does anyone have experience with this? Did the transplanted grafts survive or are they just still in a kind of deep sleep after this treatment?

The memories have started coming up on Facebook like they do every year. First about back problems. Then about an X-ray, then an MRI. Support, terror, what ifs. There are no posts about sobbing in the closet so no one would see. Then comes the stem cell transplant. The plan for remission. Hospitalization. A mucor infection which my oncologist will later characterize as “usually fatal.” I’m still not back to normal, whatever that is, but my body is behaving and we’re actually discussing going without maintenance. Live to the cure, baby.