@elbows so sorry for your loss.
@puzzlegal hope things go well for your husband.
Elbows, I’m so damn sorrry, and I’m sending love your way.
Puzzlegal, how are your husband’s treatments going? How is he? How are you?
Thing are going well. He’s tolerating the treatment will, and his numbers (red cells, etc.) are slowly moving in the right direction. Right now he’s very immune compromised from both the cancer and the treatment (it’s a cancer of a type of immune cell, so the treatment kills a lot of the relatives of the cancer, too) and I’m anxious about accidentally bringing a bug into the house, or not cooking the food enough, or… But really, things are going as well as can be hoped.
You must be worried every moment, especially, as you describe, about bringing germs into the house now he’s so vulnerable. I know you’re better equipped than most to endure this ordeal, but that doesn’t make it easier.
It’s good to hear the treatment is going as well as can be expected. I hope this phase of limbo passes without complications and results in a complete success.
Please do keep us posted.
Good luck with all of this.
Is masking recommended?
Yes, his nurse recommends we wear masks in crowded places, and be careful about hand washing and cooking food. I’m actually at a square dance weekend (that i run) right now, but I’ve arranged to stay with a friend for a few days afterwards, until i know whether I’ve come down with “convention crud” or it is safe to return home. I’ll wear clean clothes, wash my hands, don an n95 mask, and spend some time with him as soon as the weekend is over, but i won’t be unmasked near him until I’ve gone a couple of days with no “contact with lots of of people” or symptoms. I think i can do most of my household chores masked.
Fortunately, he worked from home before this, so he can continue his work somewhat normally, and safely.
He had chemo yesterday, and his numbers continue to improve. (He gets blood tests the same day.) His red and white cells are below normal, but are creeping back up, which is good. He’s also feeling a lot more normal.
Have you got a few good HEPA air cleaners at your place?
Yes. The house AC system actually has a pretty good hepa filter, and i use that when we have people over. (I turn off the condenser in the winter, but leave the power on for the fan.) We also have large stand-alone hepa filters in the living room and basement which are just always on.
Excellent news, may the trends continue.
As for the rest of your preventative measures, sounds like just the right sort of reasonable steps you can take without shutting down your life completely.
That’s wonderful news.
Good!
Update: he continues to do well. He’s preparing for a bone marrow transplant (autologous stem cell transplant, aka ASCT) by taking drugs to stimulate extra stem cells that will be harvested this week, but we expect the cells will be frozen for possible later use, and not needed soon.
His light chains and other artifacts produced by the cancer cells continued to drop with each monthly reading. He is a little bit anemic, and moderately immune compromised, and his bones were really ripped up when the cancer was active and will probably never completely heal. But otherwise he’s feeling pretty normal.
And the really good news is that he had a test of minimal residual disease that was negative. This is an extremely sensitive test some with a bone marrow biopsy that can test how many cancer cells are left in his marrow to a precision of 1/million nucleated cells. His test came back at “detectable genetic matter, but less than 1/million”.
The prognosis correlates closely with how maybe cancer cells are in there.
(For comparison, when he was first diagnosed, about 44% of the cells in his marrow were cancer cells.)
I’ve been reading UpToDate and the studies it cites, and he’s a great candidate to delay (possibly forever) that ASCT. (He’s tolerated the chemo very well, his cancer has responded to it very well, and he has access to both delayed transplant and other modern treatments if he relapses.)
So we’re excited.
He may be immune compromised for the rest of his life, though. 
And he’s developed tendonitis. My guess is it’s because his bones are all rough and so irritate the tendons, but it might be a direct side effect from the drugs, it out might be unrelated, and just be another thing.
I’m glad he’s doing so well. I’m sorry he’s not doing even better. I’m glad he’s got you to help him.
I am very happy for the good news.
If you don’t mind my asking, how have you and he adapted to your new “normal”? Are you just accepting that his illness is your new reality, and any improvement in that situation is welcome? Or do you find yourself comparing your current situation to what you thought normal only a few short months ago?
Best wishes for continued positive developments.
“Immune compromised” is a difficult thing. But you can manage it will a little care.
I wish y’all well.
Keep us posted.
Well, he’s a whole lot healthier then when he was diagnosed. The parts of his illness that directly affect me are mostly that he has less energy and that he’s immune compromised. So I’m going to events by myself that we would have attended together, and wearing a mask most of the time when i go out. And washing my hands a lot.
But none of those are huge adjustments. And some of it is stuff we did during the pandemic that i was just starting to relax on.
I’m also spending more time reading medical journals, but i kinda enjoy that. It’s something I’m good at, and it’s generally satisfying to do something you are good at.
I’m not going to bore readers of this thread with endless details about recent research into myeloma treatment, but i could. 
Some of us won’t find it boring. A friend of mine was just diagnosed with multiple myeloma. I’m not actively involved in his case - I don’t have details and regular updates, and they don’t ask me for advice on most things. All that is fine. But I’m trying to learn what I can so I can be there if/when they want help.
I’m going to do a full re-read of this thread.
Unsolicited medical advice is always tricky…
Here’s some general stuff: if they aren’t close to a research hospital with some expertise in MM, it’s probably worth getting a second opinion from a doctor who is an expert. Things are changing very quickly, as better and better treatments come out.
Research that’s even 5 years old is likely to be pessimistic, due to recent advances.
The most important predictor of outcome is not traditional “staging”, but the specific genetic mutations of the cancer. Plus the overall health of the patient.
Step 1 is “induction therapy”, with a goal of inducing remission. If he can tolerate a modern 4 drug treatment, that’s probably his best bet for induction therapy. A typical four drug induction regimen is:
- a thalidomide analog, probably lenalidimide,
- a protease inhibitor, probably bortezomib
- Dexamethasone (a steroid)
- A monoclonal antibody treatment, probably daratumumab or isatuximab, which both target the CD38 receptor which is over-expressed in myeloma.
But everyone is different, and not everyone can tolerate those drugs.
He’ll probably also need an anti viral (because myeloma is a cancer of immune cells, and the treatment is rough on the healthy cousins of the cancerous cells) and treatment for his bones. He may also need pain killers, especially at first. He may also need support for kidney damage.
If he’s eligible for a marrow transplant (which depends mostly on age and overall health) they’ll want to seriously consider that. A marrow transplant is a big fucking deal. That might be a time that he reaches out for support with things like meals.
That’s about how far we’ve gone down the path.
(Edited a typo in one of those drug names.)
Glad to hear it!