• TalkBass has been independent since 1998. Add your voice.
    Create a free account to reply to discussions, view embedded media, and browse with fewer display ads.
    Join free Log in
    Want zero display ads or expanded classifieds tools? Compare plans.

Multiple Myeloma Update

P. Aaron

P. Aaron

Supporting Member
Sep 16, 2002
14,296
9,840
Livin’ on a slab in Plano, TX
#1
Being back in treatment, I get napalmed monthly with 21 days of gulping noxious pills and steroids to put me in the happiest of moods. Since this is my 2nd go-around in treatment (last was 2010-2013), I'm getting updated charts & all sorts that was all paper back in them old days. One component is my 'bad' M protein readings and I kinda know what they are but really, I nod along and get distracted by some musical passage and instead of reading a chart, I'm imagining notes on a fretboard and am a bass-bimbo or some such. I found this chart confusing so, I asked the doc for clarification.

IMG_0093.jpeg

Doc-Oncology:
"Your M component 1 (M spike) has finally dropped to Unquantifiable on our scale, so that is great news!
The Mayo readings are below our scale so slight differences under 0.1 (and especially under 0.05) are not really true movements. The protein that is still there is partly from The Darzalex* (which is IgG Kappa) and only a very minimal amount of myeloma protein remains well under 0.05 (from 0.49 prior to starting current therapy so > 90% very good partial remission = VGPR)."

So, I guess this is what they call (not remission) but the more delicate term; "response to treatment".

I estimate another 6 months of napalming to kill it dead before I'm likely going to be able to request being taken off the poison. But, good news nonetheless. I guess I can't skimp on tasks or make excuses...a good thing.

*Darzalex is a component of my treatment.
 
  • Like
Reactions: roccobass, StyleOverShow, MonetBass and 27 others
#5
My uncle is two years in to a 6 month life expectancy after a pancreatic cancer diagnosis. Chemo helped but didn't kill it, experimental drugs kept it contained for a long time.

But there are now metastaces. His doctors are trying to get new experimental drugs approved, but the FDA wants to see proof that they think it will help in the use case of the mutations he has. The doctors want to give him the drugs, the manufacturers want to sell him the drugs, but Uncle Sam has to have his fingers in everything.

I'm all for making sure that drug research is safe, but why put roadblocks and red tape up in front of dying people?

I hope you kick its ass P. Aaron. Oncology has come a long long way in the past 30 years. New ideas are always being tried out and it looks like a finish line may be in sight.
 
  • Like
Reactions: roccobass, StyleOverShow, P. Aaron and 5 others
#7
Gopherbassist said:
My uncle is two years in to a 6 month life expectancy after a pancreatic cancer diagnosis. Chemo helped but didn't kill it, experimental drugs kept it contained for a long time.

But there are now metastaces. His doctors are trying to get new experimental drugs approved, but the FDA wants to see proof that they think it will help in the use case of the mutations he has. The doctors want to give him the drugs, the manufacturers want to sell him the drugs, but Uncle Sam has to have his fingers in everything.

I'm all for making sure that drug research is safe, but why put roadblocks and red tape up in front of dying people?

I hope you kick its ass P. Aaron. Oncology has come a long long way in the past 30 years. New ideas are always being tried out and it looks like a finish line may be in sight.
Click to expand...
Just lost one of my brother-in-laws to that. Have a friend at gym, 82, who beat it, but only because they caught it really early before it had spread.
 
  • Like
Reactions: GregC, Plake, lowplaces and 1 other person
#9
BassicJazzy said:
Just lost one of my brother-in-laws to that. Have a friend at gym, 82, who beat it, but only because they caught it really early before it had spread.
Click to expand...
Most people with pancreatic cancer show no symptoms until it's too late. My uncle had symptoms, pain in his abdomin in particular. Doctors told him it was just old age pains. I wonder if they'd taken him seriously the first time if they could have caught it early enough to get rid of it. But there's no way to know.
 
  • Like
Reactions: P. Aaron, Plake and lowplaces
#10
Gopherbassist said:
Most people with pancreatic cancer show no symptoms until it's too late. My uncle had symptoms, pain in his abdomin in particular. Doctors told him it was just old age pains. I wonder if they'd taken him seriously the first time if they could have caught it early enough to get rid of it. But there's no way to know.
Click to expand...
Supposedly there is a test coming, but of course no doctor is going to order it in time to make a difference.
 
  • Like
Reactions: Plake, lowplaces and Gopherbassist
#11
Gopherbassist said:
Most people with pancreatic cancer show no symptoms until it's too late.
Click to expand...

Correct. That's why it's essential do to a *really thorough* blood/urine testing at least once a year - preferably more often if one is over 50 and/or has a history of cancer in the immediate family - along with learning what the usual red flags for most common cancers are.

I'm well aware of how costly this may be for people with no or less-than-stellar health insurance in the U.S. but being able to locate that alien before it spreads is absolutely priceless.
 
  • Like
Reactions: roccobass, Plake, lowplaces and 1 other person
#13
TLDR: Congratulations. Maintaining a positive attitude is part of successful treatment.

First, congratulations on over a decade without treatment. Second, undetectable (i.e. below the threshold of meaningful detection of the protein) is excellent. In different countries, cancer treatment is different. Some Asian countries (Japan, I'm told) focuses on controlling the growth of the cancer and living with it instead of trying to wipe it out entirely. Just sayin. A huge part of your continued recovery is your frame of mind, AKA attitude. That's why the psychology of cancer treatment is all about hope. You do seem to have the right attitude. Keep it up. its a marathon not a sprint! Best to you...
 
  • Like
Reactions: P. Aaron
#14
Hello @P. Aaron ,

Congrats on the treatment response and staying positive with a tough disease! I work in multiple myeloma research and am happy to discuss any questions you may have if it would be helpful.

Plasma cells are part of your adaptive immune system and they’re responsible for immunoglobulin creation, basically make antibodies. In multiple myeloma, the malfunctioning plasma cells create incomplete antibodies which are M-protein. There are a few other markers of interest like free light chain, but seeing these go down is a meaningful result. The good news is M-protein half life is long so your response may be even better in time.

I wish you the best, will keep you in my prayers, and keep groovin’ on the bass!

-Brett
 
  • Like
Reactions: pachoate, GregC, P. Aaron and 1 other person
#15
BassicJazzy said:
Just lost one of my brother-in-laws to that. Have a friend at gym, 82, who beat it, but only because they caught it really early before it had spread.
Click to expand...
Early detection is key. So few candidates for R & D because symptoms don't show until stages III or IV when it's too late to treat effectively.
The researchers have so few early patients to work with.
 
  • Like
Reactions: Plake
#16
superiorpine said:
TLDR: Congratulations. Maintaining a positive attitude is part of successful treatment.

First, congratulations on over a decade without treatment. Second, undetectable (i.e. below the threshold of meaningful detection of the protein) is excellent. In different countries, cancer treatment is different. Some Asian countries (Japan, I'm told) focuses on controlling the growth of the cancer and living with it instead of trying to wipe it out entirely. Just sayin. A huge part of your continued recovery is your frame of mind, AKA attitude. That's why the psychology of cancer treatment is all about hope. You do seem to have the right attitude. Keep it up. it's a marathon not a sprint! Best to you...
Click to expand...
Since my first battle from stage III, I'm now a lab rat. Every 6 months I get checked so, they caught it at the smoldering stage & started bombardment.
 
  • Like
  • Haha
Reactions: DirtDog and Plake
#18
Joshua said:
Good vibes to all y'all fighting the good fight.
Click to expand...
Thanks Josh. I'm still practicing bass some but since I've been working with Reaper (DAW), I've focused on writing songs and while riffs are easy to come up with, a good lyric line writes a song way better than any catchy riff. So, it's lotsa staring out the window, and just stumbling onto Seinfeld type topics to try and draw from.

I was very lazy about all this when it mattered; my 20's-50's.
 
  • Like
Reactions: Plake and Joshua
#20
Plake said:
Bombardment is now part of my daily vernacular. Ty @P. Aaron lol. Finished my 3rd and final round of immunotherapy yesterday. Surgery the 17th. Then the bombardment commences. :)
Click to expand...
My first round with multiple myeloma (stage III), I was almost ignorant of the process as it was happening. A clinical trial that worked for me. Tons of noxious pills, tanker-truck sized syringes, and steroids. I didn't know if I was jacked or passing out. This time around, it's treatment against a cancer at a much lower level. I'm tolerating it much better.
 
  • Like
Reactions: roccobass and Plake

Latest posts

Top Bottom
Back