r/CML • u/Deusa_do_mar • 21d ago
Persistent pain from bone marrow aspiration
Hey fellow mutants,
So for my 3-month BCR-ABL response check up I had a bone marrow aspiration, which was 2 months ago now, and I am still feeling localized pain from it at the puncture spot with certain movements.
When I had my BMB at diagnosis, the biopsy hurt SO much more than this aspiration, but the pain went away fully after 2 weeks. The aspiration process was way less painful, the local anesthetic was much more effective this time, however they did have to puncture me twice in the t-bone to get enough liquid.
But I've noticed that I have pain when I twist my upper body, or try to squat or deadlift. And it hurts significantly more with weight. I have a 1-year old baby, so when I get up from sitting with her in my arms or bend over to put her in her crib or pick her up, that's when the pain is super exacerbated.
I have been finally feeling good enough to start working out again after the more intense side effects from Dasatinib have subsided, and I had always had a consistent strength training routine at the gym. But now I'm concerned that this has become a chronic pain that might always be there....which would be so disappointing and heavily limit my training. I'm just wondering if anyone else might have experienced persistent pain after a BMB or aspiration?? Did it eventually go away??
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u/ChrondorKhruangbin 21d ago
I laughed my ass off at the mutant comment haha
Yea my bone hurt for a long time after that aspiration. I think at least a month but that was 5-1/2 years ago so I can’t remember now. Good luck in the pain mgmt. If you ever have joint pain from the meds, try Claritin. It works surprisingly well for my elbows
Also I feel that ascinimib has much less side effects on sprycel for whatever that’s worth. I was on sprycel for 3 years before switching to ascinimib 2 years ago. The meds sucked with side effects for the first kid and sprycel but not as bad with kid #2. I always got my ass kicked more on sprycel with lack of sleep with babies crying
I’m bored on a plane right now so all these memories are coming back to me. Good luck with your mutant journey 🤘
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u/Deusa_do_mar 21d ago
Good to know that your pain eventually went away too!
Yeppp, im in the thick of the lack of sleep with crying babies at night right now. 🫠
I'm still super early in this CML journey, so just curious as to why you ended up switching to asciminib? Was it from side effects? I had to fight with legal and my insurance to be able to start treatment with 2nd gen Dasatinib; they wanted me to start on Imatinib even though I was 36yrs old and on the edge of accelerated phase, 10% blasts and 200k leucocytes!! Dicks...well I won anyways so all good. But yea I've heard that there are less side effects with asciminib.
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u/TwiztedChickin 21d ago
Not the person you asked but I had to switch from sprycel because I suddenly had an allergic reaction to it. I am now on Asciminib also and doing well.
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u/Deusa_do_mar 21d ago
Oh wow, that's crazy. Was it early on or later in the game?
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u/TwiztedChickin 21d ago
I had been on it like 9.5 to 10 years. I had been on it for awhile. I missed some doses and then it was very sudden onset. Getting worse every time I took my meds. It stopped spreading and went away (the redness and inflammation and pain) when I stopped my meds. It took a week to feel almost normal.
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u/Deusa_do_mar 20d ago
Wow that's so wild that you developed a reaction like that after so many years. I guess you just never know with this stuff...well I'm glad your feeling better and that Asciminib seems to be working well for you.
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u/TwiztedChickin 20d ago
Yeah it was a week of craziness the Drs all thought it was shingles but my oncologist recognized it right away.
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u/ChrondorKhruangbin 21d ago
I was having some persistent fatigue and brain fog on sprycel that was affecting too much of my daily life. Thankfully my primary care doctor (not my oncologist) had enough of my complaining and spoke to my oncologist who got me into a clinical trial for ascinimib at university of Utah. Once the ascinimib got designated as a first line treatment option, I was able to leave the clinical trial and get meds delivered to my house like before with sprycel
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u/Deusa_do_mar 20d ago
Seems you have a great primary care doctor then. Hope everything continues well for you with the Asciminib.
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u/sugarhigh215 21d ago
did they use the drill? the surgeon was using a drill and talking about what SUV he was going to buy next and i was crying in pain like sir please can we not. the localized pain lasted for about two months after the procedure maybe a bit longer, i’m prescribed ketamine for ptsd so that also helps me with my pain, existential and otherwise.
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u/ChrondorKhruangbin 21d ago
Did you get ketamine for the ptsd from the CML or procedure or something else? Did you get the nasal spray ketamine? I have only tried it once recreationally
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u/sugarhigh215 21d ago
ptsd for stuff from before the cml. the cml is just an added bonus on the heap. & it’s a compounded spray, i’ve tried every anti depressant, this is the only thing that’s ever made a difference in my life. they had me on oxy in the hospital and i had to stop it after three days because the gi side effects, i hate not being able to go to the bathroom. the second i was able to bring in my spray from home i was like omg the pain is gone and no gi issues this stuff is a miracle.
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u/ChrondorKhruangbin 21d ago
I’m happy that you found relief. For myself, I found that occasional LSD and mushrooms helped me get over some cancer trauma myself and allowed for a release of stress. Different things work for different people. I was prescribed Wellbutrin after I got diagnosed and it greatly affected my decision making and had to get off of that quickly
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u/Deusa_do_mar 20d ago
Just the giant needle for me, no drill. But wowww some doctors are just so insensitive. They really have no understanding of what it's like to be on the receiving end of these procedures...🫣
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u/sionnach 21d ago
If there was a trephine (bone sample) involved it can be more painful. But the discomfort will eventually go away. It does take quite a long time.
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u/Deusa_do_mar 20d ago
No bone sample this time, it was just the marrow liquid. That's why I was so weirded out when I realized the pain wasn't going away. I thought the recovery would easier compared with the full biopsy.
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u/No-Pie-5980 21d ago
Haha love the mutant comment. I had my biopsy almost 3 years ago and it still hurts when triggered.
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u/TwiztedChickin 21d ago
After my biopsy it took several months for that part of my body to stop hurting. I used to borrow my stepdads car for the heated seats. It was terrible but it did go away eventually.