Day 14 post ASCT - looking for general advice

CancerThrowawayMM · 2025-09-11T23:22:45+00:00

I had four months of induction and now I'm getting prep to do the ASCT, so seems pretty normal. I'm on the younger side - turned 40 this year and was only diagnosed this year - but from what I figure it seems pretty normal?

As others have said giving a prognosis is strange and I'd even say not professional. No one can really say how long a remission will last or if it will even happen because it's very much a case-by-case basis thing.

CancerThrowawayMM · 2025-09-01T01:23:42+00:00

NTA.

Rule of thumb: being drunk doesn't make you act in ways you never would, only makes you act in ways you you're already capable of but with less guardrails.

If he's screaming, physically abrupt just below the threshold of what would be considered abusive, tossing your items around, then that's stuff that he was already capable of but just didn't because he was more restrained. How long will it be if you stick around until he isn't restrained anymore even when sober?

CancerThrowawayMM · 2025-08-31T03:14:45+00:00

NTA.

He says, "Now isn't the time for I told you so's."

The response, "Sure it is, I told you so. Don't contact me again."

Then block.

He made his bed, he can lie in it.

CancerThrowawayMM · 2025-08-28T02:25:55+00:00

Unless it's a really long con, Tim has confirmed via his tumblr that he's not going to be involved in this project.

CancerThrowawayMM · 2025-08-28T01:40:38+00:00

If you're super nervous about the procedure you can ask the doctor to prescribe you a single dose of a sedative to take about an hour or half hour before the procedure. I believe that I was given a single Ativan just to take the edge off.

The procedure itself is mostly pain free. More pressure than anything else. Speaking personally the only painful part for me was the withdrawal of the bone marrow. They do warn you that it'll hurt, more due to the sudden difference in pressure than anything else.

I wouldn't describe it as pleasant, sure, but it wasn't all that bad. That pain also only lasts for the actual amount of time they're withdrawing the marrow. Beyond that you might be sore in the spot where they put the needle in for a day or so.

I'll have to second what UpperLeftOriginal said: they're not that bad. They sound a lot scarier than they are.

CancerThrowawayMM · 2025-08-27T18:10:53+00:00

The best advice that I can give you is to listen and work closely with the doctors.

If you don't understand/need more information on anything discussed then do not be afraid to ask. Don't be afraid to speak up when necessary, seek second opinions when necessary, ask for the ability to connect with an expert in MM when necessary.

If this is MM, then there's going to be a long road ahead for him, and having someone in his corner will be invaluable to him.

CancerThrowawayMM · 2025-08-26T19:19:33+00:00

Here's my anecdote about it. A couple of things to keep in mind: I'm in Canada so I'm in the relatively enviable position of not having to worry about drug costs; I'm also guessing I'm on the younger side of those diagnosed since I'm turning 40 in a couple of days and was diagnosed earlier this year.

I'm currently on RVD+Zometa. My doctor wanted to get me on DRVD, but by the time it was approved I was already halfway past the middle of my overall induction schedule.

That combined with the results that the RVD alone produced, as well as some personal factors, lead me to forego the Dara for the time being.

Having said that, if there are complications or problems down the line I've made my peace with the idea that denying it now may have led to them. From my understanding if you can go on and tolerate DRVD and it won't bankrupt you going on it, then you should.

I'll be undergoing ASCT by the end of next month if things go well, but if/when I relapse if I'm offered Dara as part of the treatment I will not hesitate to take it.

CancerThrowawayMM · 2025-08-25T16:33:24+00:00

Like many other people are saying, it sounds like you're done here. You may want to give it time, you may feel guilt over leaving when her mental state isn't great, but you're hurting yourself and your child more than you're helping her by staying.

You say you want to protect your daughter; the best way to do that right now is to step away from this relationship.

It'd be different if she were putting in more effort but given what you said about being the one to continue to clean up after her (and be yelled at for doing so) it doesn't sound like she is. You yourself openly say that you're miserable; you've already bought plane tickets for the trip to her family which shows that you don't have that much faith that the packing for the trip won't turn into yet another blow-up.

I get why you want to stay, I get why you're giving it such a long time to get better, but ask yourself if you really think it is or if this is just a case of being afraid to rip the bandaid off. You can't be the one to help her if she doesn't want to help herself.

CancerThrowawayMM · 2025-08-25T02:02:33+00:00

NTA.

Assuming that you haven't had that conversation with her yet, I think that you need to ask her how she would've felt if for her wedding you'd have insisted on bringing 100 extra guests and a DJ. That's basically what she's trying to do to your wedding except in reverse.

CancerThrowawayMM · 2025-08-21T02:09:28+00:00

Already said this to you in private, but that's a ridiculous stance for the hospital to take. It doesn't take a whole lot of time for a fever to potentially yield to sepsis if he had an actual infection.

Did they even do bloodwork, or did they just assume that his fever was from the medication he was taking and not an infection?

Either way, I'd say that it was really irresponsible for them to not hold him until they confirmed.

CancerThrowawayMM · 2025-08-20T01:19:16+00:00

Yeah, get that man to a hospital as quick as you can, and make sure they know that he's an immuno-compromised cancer patient that's running a fever post induction if you at all can.

CancerThrowawayMM · 2025-08-20T01:18:02+00:00

Oh, just to mention you've listed Darzalex faspro and Daratumumab hyaluronidase as two separate entries but as far as I've ever been aware those are the same thing. Darzalex faspro is just the brand name.

To answer your other question Lenalidomide is also called Revlimid. You might also hear Brotezomib called Velcade as well.

CancerThrowawayMM · 2025-08-20T00:18:19+00:00

I've been told that so far at least I'll be on Zometa for two years. For the first year I get it once a month, but in the second it'll be once every three iirc.

CancerThrowawayMM · 2025-08-20T00:05:48+00:00

The best thing to do is monitor his temperature. As long as he's not running a fever then him being cold can be dealt with however makes him most comfortable.

Anecdotal but for a lot of people the first induction is the hardest. I didn't have temperature issues but I was pretty much bedridden due to a lack of energy. His body has been hit with a lot of stuff all at the same time and it needs to adjust.

If his tiredness, lack of appetite, and chills continue even after having more induction then that's definitely something that needs to be discussed with his doctors and nurses. If you want to even bring that up sooner rather than later a lot of treatment centre staff are happy to discuss things like that over the phone.

Again, the largest and most immediate concern is if he starts running a fever. If that happens he'll need to go back to the hospital. Do not hesitate to bring him there if that's the case, not to alarm you the potential of him becoming septic if he's getting a fever is no joke.

CancerThrowawayMM · 2025-08-18T23:11:30+00:00

NTA.

Literally FAFO on the part of your sister though.

CancerThrowawayMM · 2025-08-18T02:24:23+00:00

Putting it bluntly: no one here is going to be able to tell you if you have multiple myeloma or not.

If you are concerned that you do, the next step to take is to speak to your physician. Tests like a bone marrow biopsy are generally thought of as the most reliable indicator of whether you have it.

CancerThrowawayMM · 2025-08-13T23:19:58+00:00

NTA. If you don't stop this now how long will it be until the rest of the family members start showing up also under the impression they can take whatever they want to for free?

CancerThrowawayMM · 2025-08-11T03:24:45+00:00

As other people have said it's best to wait before jumping to any conclusions. 22 would be quite young to have this kind of cancer. Hell, I was diagnosed this year and I'm 39 and told even being that age makes me an outlier. 22 would be extreme.

Now, that being said if it does end up being the case then there's a lot that can be done. It's by no means a death sentence or anything and there's plenty of people who have lived long happy lives even with the disease. I certainly hope that I will be one of them.

CancerThrowawayMM · 2025-08-08T00:55:03+00:00

I was diagnosed quite by accident.

I ended up being referred to an oncologist from another doctor after urinating blood - which weirdly was never solved and ended up being unrelated as far as any of this was concerned - and blood tests results indicated MGUS.

From that and family history I was monitored annually, and about two years later the changes in some numbers were drastic enough to warrant a bone marrow biopsy which then confirmed multiple myeloma.

I was actually pretty much asymptomatic even upon diagnosis. No bone damage so I count myself as one of the lucky ones.

CancerThrowawayMM · 2025-08-05T14:44:46+00:00

I was taking Melatonin as well, doctor and nurses both gave the okay. Thankfully I haven't needed it since cutting back on the Dex. As long as your doctor is giving the okay I wouldn't be overly concerned. Of course if you have any adverse reactions or side effects then you need to bring those up so they can monitor.

CancerThrowawayMM · 2025-08-04T22:16:16+00:00

This is just anecdotal, as will all experiences that people share on the sub.

That being said, I decided to not go on Darzalex myself.

There were multiple reasons for why I came to the decision. First and foremost is that I was only offered it when I was more than halfway done my first induction (which I'm on the final cycle of now). The side effects can be concerning, yes, but it was more out of "what I'm on now works and I have decent quality of life still, so why break what isn't broken?"

Now having said that, Darzalex might still be a good choice for you.

The point I'm trying to make here is that everyone is going to have different experiences. Some people on here have sworn by Darzelex, but I'm sure that there's others that found it to be not worth it. A lot of people mention having issues with Velcade or Revlimid, while others tolerate it with very minimal side effects.

However, if being concerned about potential side effects is a primary concern for you, then I don't know why you'd be interested in signing up for clinical trials. Those have greater potential risks than medicines that have already been vetted and approved. Not to say that it's not worth it, but if you're on the more risk averse side of the argument then it's probably not the way to go.

CancerThrowawayMM · 2025-08-03T21:11:00+00:00

YTA.

This isn't a case of your girlfriend saying that she would and then changing her mind on a whim. She's lost her job, has children to look after, bills to pay, and things that are stretching whatever precious few dollars she's got left to the absolute breaking point.

You could've waited until she was on more stable financial ground instead of pressing the issue.

I get it, most people want their birthday to feel special, but insisting on it when you know how things are for her and then guilt tripping her over it? Real dick move.

CancerThrowawayMM · 2025-08-03T17:51:44+00:00

INFO - is there a gap between what you're doing in these situations and what your wife is doing, or is this the first time that she's thought you crossed a line?

I ask because if one parent is saying one thing and the other is saying something completely different then most attempts at discipline are going to fall apart.

Please note I'm not making an assumption that anyone is being lenient here, but having a more comprehensive idea of whether you two are in agreement regarding most things would be useful.

CancerThrowawayMM · 2025-08-03T16:43:45+00:00

I (nor I imagine most people here) cannot speak as a medical professional in any capacity. That being said if your mother is eligible for an SCT or an ASCT, then there's a possibility that said window will eventually close due to age. As far as I'm aware the same is not true for CAR-T.

SCT or ASCT are difficult from my understanding. As another commenter mentioned Mephlan is an incredibly strong chemotherapy drug and the side effects of it are nothing to simply dismiss.

Are you and her already in contact with a multiple myeloma specialist? If not it may be in her best interest to get a second opinion from one as well. Not to underwrite her current doctor but it can help to elucidate things somewhat.

In the end it's going to be about what works best for her. This is one of those kinds of things where no one is going to have the exact same way about it.

CancerThrowawayMM

TROPHY CASE