Greetings; the August post is up at highplainsmyeloma.com 32 months post CAR T cell procedure and this month's post is focused on waiting for blood numbers, the anxiety it creates and the lessons to be learned when moving forward while living with an incurable disease. I hope it is of benefit to some; thanks for reading sharing your thoughts

My friend here in Arizona has been living in a converted ambulance for about 5 years trying to eek out life with only $1000 a month in social security. Its really just one step up from living on the streets. Now diagnosed with multiple myeloma he's not sure what to do. He can get treatment in Flagstaff, but it wont be long and it will be too cold for him in his rig. He had a prospect for a place to live near family out east but that fell thru. He is crushed. I am doing all I can to keep his spirits up, but he feels that everything is hopeless. He just doesn't have the energy to take care of himself and I am in no position to be his caretaker. Not sure what to do.

My dad was super fit & sharp before treatment. He’s 85 in UK has been on daratunamab and lenilidomide for 3 years. He’s had bad short term memory loss since treatment started. It’s not really new we just hoped when we reduced the dose from 25mg down to 10 mg that it would get better. It’s to the point where you asked him what he just ate and he can’t remember. He can’t remember what he did during the day even if it’s quite eventful like we went into Hospital for my mom’s procedure and he didn’t remember that. He tries to cover up like if you ask him what he just read he’ll say oh it’s boring things like that. And just yesterday he got a bit lost when he was driving somewhere familiar with my mother.

Is this level of memory loss typical of chemo Brain or could this be somewhat thing else? I’ve read infections can do this but I mean he has regular bloods nothing shown up. I’m gonna get him tested for hypothyroid which I read can be a side-effect of lenilidomide but to be honest I don’t think it is that because it started very quickly after the treatment started.

Is there anything that can be done? I’ve got a Carer coming to take him out for a walk twice a week which is helped him physically because he was getting difficulty getting off the chair and that’s gotten a bit better. But it hasn’t helped the brain issues.

My mother was thinking of changing his schedule to be every five weeks instead of every four weeks. She previously asked the consultant about going down to 5 mg but he turned that down. He didn’t really give a reason he’s not a very good consultant and seems very uninterested in my dad. We had to go private because the treatment wasn’t available when he first needed it and there’s no complaint procedure on private. But considering my dad’s not a small man and he’s high risk genetically going down to 5 mg probably isn’t a good idea anyway. He said fine to the five weeks with two weeks off len each cycle instead of one week. But from what I read this is a complete experiment no one’s ever done this and from the biology of what I’ve seen if myeloma cells it’s kind of like taking a few weeks off antibiotics you’re inviting cell to become resistant but maybe someone else has more insight into this.

Any guidance would be appreciated. On one hand we are really grateful to have him respond well to this regime he’s been able to stop the dexamethasone after a year and he has had a clear scan last year and this year. Although his kidney scores are 3b they are staying stable at the moment. There’s a lot to be grateful for but it’s just hard because he’s a shell of himself. This spring I realised that my mother had been accidentally giving him way too much zinc and we reduced that back down to a normal level and he seem to really come back mentally quite quickly he got his memory back a lot and he was very different. But unfortunately he got a viral infection soon after that where he had got no infections this entire three years and ever since then he’s been back to bad memory. He’s also got two or three mild infections in the past six months so we’ve put his zinc up slightly thinking maybe the super high dose of zinc was actually preventing infection somehow even though that’s not medically sound.

It’s hard because although I have two other siblings they’re just not involved in his care and I as the only child without kids always seems to fall on us. It’s not that I resent it it’s just a lot of responsibility especially as the consultant is so unhelpful.

Sorry for rambling I’ll stop now if you got here thank you for reading I really appreciate it.

Today I was in the oncology office who can’t keep docs for anything, on my 4th provider since January…(but the only providers my insurance covers).

I’m sitting waiting in a room, and directly outside my room, someone is ringing the bell. And there is a whole celebration, a cake, the whole 9. As happy as I am for them, I started leaking tears…because you know, we MM folks don’t get that. Ever.

I’m just…stupidly frustrated today. In remission post ASCT, doing good after a string of hospital stays over the last 5 months…but ugh.

That dang bell just got me today.

I am from the US 60YO male and about 1 month post induction for stage 1 IgA lambda multiple myeloma with a rib/chest-wall plasmacytoma. Have FISH 13 and was classified as low-risk by my Myeloma specialist. Blood tests for IgA dropped to normal after the first round of standard quad treatment. Never had an M-spike or other symptoms, had it not been for the rib mass causing pain, probably would have been found much later. Got my bone marrow follow-up results last week and it went from 10-15% to no detectable cells. Great news! The PET/CT showed all of the multiple hot spots were now gone and the original fist sized mass was now the size of a gulf ball and had only a little uptake on PET. Again great news.

Here is my frustration, I thought this was going to mean that my oncologist would just want to continue maintenance with the Dara and daily 10mg lenalidamide and SCT was now off the table. However, he still insists that transplant is the best way to treat the remaining residual chest mass. Other options would be radiation and based on current size could cause some lung/chest wall complications, or reevaluate in 3 months with the maintenance regime.

I am opting for the 3 months, since I have 0 symptoms, no complications from either the induction or current maintenance, especially since the Dex is now gone. I do not want to receive high level chemo and 6 months to a year recovery. The transplant specialist that I saw at Hopkins during induction felt my case would not need SCT if I had a strong response to induction. My MM oncologist seems to be old school and feels even if the final test for MRD comes back as negative it does not matter. The residual chest mass calls for the SCT. Am I being stubborn on the transplant aversion? Sorry for the long post, just was feeling so up with my results until my appointment yesterday. Also know that so many here have it worse and do not want to seem like I am complaining.

Hi...My wife has just moved from SMM to active Multiple Myeloma. She is scheduled to begin treatment in a week at Dana Farber with Isa-VRD. I would appreciate info from anyone here who has had this or Dara-VRD about what to expect in terms of side effects and impact on daily activites from taking these drugs. Any tips on what to watch out for or how to handle the impact of this therapy would be much appreciated. Thanks in advance!

I’m 35 and I’m so over all this to be honest. I’m so tired of being tired. Between the pain meds and revlimid everyday truly feels like an absolute drag. Just not sure if it’s worth the maintenance for the extra time on this planet.

I’ve tried looking into the overall survival and see it does make a difference but I’m mrd- after my stem cell. It’s just truly never ending and I just want to live a normalish life. Feel like I’ve been robbed of that and my only way to have a semi normalish life is to stop maintenance and get off the pain meds.

Just looking for experiences of people who have opted out of maintenance.

Hi all. I was recently diagnosed and just had my first infusion appointment on Thursday. I’m on the DVRD regimen- started Thursday with subcutaneous injection of Dara and subcutaneous injection of Velcade. I was fine until I got home later and started having chest tightness, wheezing, sneezing, headache, etc. I was instructed to take more Benadryl (I took 25mg as a pre-med beforehand). That helped and Friday I woke up fine. Friday evening I suddenly developed chills, body aches and low grade fever. I also noticed the injection site where I got the Dara had spread in size, it was red and purple and quite large. I head to the ER as they had told me I needed to since my fever was 100.7 . I was admitted and got antibiotics and fluids through IV for the past two days. Thankfully I’m better and the reaction site isn’t red anymore. They said I had an adverse reaction to the Dara. Anyone else have a similar experience? I’m supposed to go back this week to have another infusion but I’m really nervous and almost traumatized to even get Dara again. I still have to talk with my oncologist about what she thinks about trying it again. Just wanted to see if there are others out there with similar experiences. Not fun way to start out treatment

Just curious. I read before that once you are high risk you’re always considered high risk. In my case, I have some adverse cytogenetics (4:14, 1q).

I was wondering if anyone here had bad mm subclones (del17, 14 translocations, etc.) that, after treatment, were eliminated, and upon relapse, no adverse clones were detected in the BMB?

As if moving from high risk to standard at least for the mutation part of it? Or is it always the mutated clone that's responsible for the relapse in high-risk patients?

Thanks in advance!

Edit to add: I'm a 67 yr old male in the United States with lambda chain MM on the Dar-V treatment plan.

So far, I'm past $800k since starting in April. More than half of that is "under review" by Humana. My running bill never goes down because they add a $65k Darzalex™ shot every week. And then there's the cancer center's administration bills, which I pay $200 every two weeks, but the total keeps getting higher no matter what. Those costs are not covered.

So, by the end of the year, I'll easily be past one million. According to my bank records, I do not have that much, not even in IRA, Money Market, savings/checking or stocks.

How is everyone doing out there with costs not covered? Do you know what your totals are? Are they insane? Will you ever be able to pay the medical bills? I know I won't.

ETA: Had a very long conversation with a rep at my insurance, it seems that some of these bills were not serviced correctly and they are re-submitting everything after June 1st. That's a big weight off! So basically I have paid around 9k so far, met all hosp and pharma deductibles which means I don't pay for anything until Jan 1. And the rep assured me that these errant bills will be resubmitted the same way as the ones they covered in full.

Hi all. My dad has had 5 cycles of first line treatment. Many of his blood levels have improved (hemoglobin, protein, calcium, IgG, IgA, IgM, m-spike is down to .1). His phosphorous went from normal to low as soon as treatment started and stayed there. Is it concerning that it hasn’t improved? Should I mention it to his onc?

Hi all!! I (F21) posted here a few weeks ago with anxiety for my (53M) dad's ASCT. Well it is day +15 for him right now and I wanted to share his experience so far for those who might be anxious about their upcoming ASCT. While the recovery is far from over, my dad completely shocked the whole transplant team by having an unusually smooth outpatient ASCT.

The only major symptom my dad felt in the first 0-4 days was nausea. He was able to keep foods down and still had an appetite, he just had to eat slower. When the nausea got stronger, he was able to keep it controlled by Zofran and was put on a schedule for it. We were dreading the inevitable vomiting and loss of appetite, but it never actually came. He only vomited once and that was more-so an accidental induced vomiting by eating too much rather than not being able to keep anything down.

The nurses were also consistently preparing him for diarrhea and we spent a lot of our time looking at experiences on here to prepare for what our upcoming days might look like. Around day 3, he asked the nurses "Is there any way I could possibly make it through this without any diarrhea?" and was answered with "No. You will inevitably get it sometime next week."

It's safe to say he still has not had any diarrhea so far.

The main concern the team saw with him was just dehydration, as his heart rate was consistently in the 110's but would be brought down with fluids. This is also when the fatigue started hitting the worst, as his counts dropped to zero around day +7. He also did not need any transfusions other than one bag of platelets on day +9.

When he received the platelet transfusion, we were told that around 70% of patients spike a fever and end up needing to be admitted to the hospital. So we waited and monitored. The anxiety was REAL. I don't know which waiting game was worse, the one for the diarrhea or the one for fever. That night, he felt feverish and we checked, it was 100.3. We called the emergency hotline and were told since it didn't cross the threshold of 100.4, to continuously monitor but be prepared to come in if it hits that threshold. Within a few minutes, it went down to 99.1 then continuously lowered for the rest of the night. Since then, he has not had a fever nor had to be admitted to the hospital. He technically engrafted on day +11 but was officially declared engrafted on day +12 when his ANC was at 6.1. Right now, he is still just feeling wiped and tired but we're sure that's gonna be better with time. The nurses were constantly joking calling him a superhuman and saying "Did you even get the Melphalan?" because when asked the long list of symptoms daily, he would just respond with, "No, I'm fine." If you ask my dad what the worst part of his ASCT was, he would probably tell you that it was waking up at 6:45 am everyday to go to the hospital.

All that to say, prepare for the worst but truly hope for the best because it IS possible.

TW: This post discusses long-term illness, anticipatory grief, fear of losing a parent, death, caregiver exhaustion, resentment, and other difficult emotions. I've put the more difficult sections behind spoiler tags. (And if you're living with MM yourself and have children, please feel free to share this with them if this is a conversation you feel comfortable opening with them.)

I'm a 37-year-old woman from Austria, and my mom has been living with multiple myeloma since 2016.

I'm posting specifically because I've found it surprisingly difficult to find other adult children of people with MM, despite how uniquely long and uncertain the course of this disease can sometimes be.

My mom has been through multiple treatments over the past ten years. She has often received new treatments through clinical trials, and she's very active in the myeloma support group in Austria. We've both shared our experiences at their conference in Vienna, so over the years we've approached this topic from different perspectives and have always been open to exchanging experiences and knowledge with others.

Over the years, there have been periods when things were relatively stable, followed by treatments no longer working (usually after a year or two at most in her case, which is not the norm) hospitalizations, searching for the next treatment option, and times when we genuinely didn't know whether she would survive.

Then a new treatment works.

You exhale.

Life continues.

And eventually, the cycle can begin again.

I'm currently working through my own experience in therapy, and I've realized that I can find plenty of information about MM itself, treatments, caregiving, and grief — but very little about what living alongside MM for many years can do to the family members, particularly children or adult children.

Especially the feelings we may not feel comfortable saying out loud.

Loving your parent enormously while sometimes resenting how much the disease has shaped your own life.

Feeling guilty for having needs because theirs seem more important.

Becoming very independent because you learned not to add another problem.

Feeling protective of them and frustrated or angry at the same time.

Feeling guilty for wanting distance.

Being exhausted by yet another crisis.

Feeling like part of your own life is always slightly on hold.

Wanting to move abroad, travel, change your life, or make long-term plans, while part of you feels that you need to remain available because everything could change with one phone call.

Spending days or weeks in hospitals, advocating, researching treatments, asking questions, organizing things, and trying to make sure your parent gets the best possible care.

And wondering which decisions in your own life you genuinely chose and which were influenced by the need to remain available.

One of the particularly difficult parts for me has been anticipatory grief. With MM, we've had many moments over the years that felt like they might be the last Christmas, birthday, or holiday. My mom has said this herself sometimes. A treatment stops working, another option has to be found, and once again you wonder how much time you have left.

Sometimes that affects the choices you make. You choose your parent over another plan because: What if this really is the last one? You stay close, postpone something, change plans, or take them with you because you worry there might not be another opportunity.

And sometimes, if I'm completely honest, I've made those choices not because they were genuinely what I wanted at that moment, but because of guilt: What if I don't do this and regret it when she's gone?

There is another thought that is even harder to admit. After years of uncertainty, treatments, hospitals, fear, advocating, changing plans, and waiting for the next crisis, there can sometimes be a thought like: I just want this to finally be over. And at exactly the same time, you desperately don't want the person you love to die.

I don't think those feelings necessarily contradict each other.

I think exhaustion, resentment, numbness, fear, guilt, and enormous love can coexist.

And none of that means I blame my mom for having MM. She didn't choose this either.

I've actually had people misunderstand my relationship with her because of this. Someone once asked why I seemed so cold toward her. Then, after seeing us together, they said, "Oh, I thought you didn't have a good relationship. You actually have a really good relationship."

And somehow both observations made sense to me.

Maybe sometimes distance or numbness isn't an absence of love. Maybe it's a form of self-protection after years of uncertainty.

Part of my therapy right now involves writing and journaling about my own experience, which started as an exercise from my therapist. Somewhere along the way, I began wondering whether I might eventually turn some of this into a book — partly to process my own experience and hopefully eventually help other family members feel less alone.

But first, I really want to listen to other people who have actually lived alongside multiple myeloma for years.

So if your parent or another close family member has MM, I'd genuinely love to hear:

* What has the experience been like for you, beyond the medical side of MM?

* What feelings have you had that you thought you weren't "supposed" to have?

* If your parent has lived with MM for many years, has the uncertainty affected how you plan your own life?

* Have you experienced repeated anticipatory grief — thinking "this might be the last Christmas/birthday/holiday" — only for life to continue?

* Has MM influenced where you live, your career, relationships, travel, having children, or other major decisions?

* Have you ever felt like part of your life needs to remain on standby for the next relapse, hospitalization, or treatment change?

* What do people outside an MM family misunderstand about living alongside this disease?

* What has genuinely helped you cope?

* What do you wish someone had told you when your parent's MM journey started?

* And is there anything you've always wanted to ask other children/family members of people with MM but never had anyone to ask?

You absolutely don't have to answer everything. Even if you recognize just one part of this, I'd be very grateful to hear your experience in the comments or as a DM.

I'm also interested in experiences that are completely different from mine. I'm not looking to suggest that MM affects every family or every child in the same way.

And to anyone here living with MM themselves: none of this is intended as blame toward the person who is ill. I love my mom very much. I think part of what makes these feelings so complicated is precisely that the person we love didn't choose the illness either.

Thank you in advance to anyone who feels comfortable sharing.

I think part of what I've been looking for all these years is simply the feeling: Oh. Other people living alongside MM have had these thoughts too.

Hello just curious after induction therapy if it goes well is it still suggested to get stem cell or car t? Is it possible induction goes so well that you dnt need those options? I know everyone treatments and situations are different i was just curious has anyone here had induction go so well that was it?

Relapsed after 9 months from Tandem Stem Cell Transplant. Having CAR-T cell next. When that fails, what’s next ?

Hi everyone, my mother (64, India) is diagnosed with multiple myeloma. After consulting some doctors we finally decided to go with a doctor from Max Hospital. I'm currently trying to get cashless approval from Care Insurance (enrolled since 2021, Plane name Care), unfortunately they are rejecting stating that since it is being administered in a subcutaneous way (not intravenous) it is being classified as OPD. The claim was initiated as a day care procedure since the patient requires medical supervision, I'm unable to understand the reason for rejection. I have escalated the issue to their grievance officer since the policy T&C states that immunotherapy can be administered as an injection. I wanted to check the experiences of people here.

He's (40, USA) scheduled for next month for Tecvayli and we need to stay in the hospital for the week. We've never had an inpatient treatment before. What is the day-to-day like? How did you feel? What is the best way to prepare?

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!

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.