Bone pain: Can anyone explain what cancer in the bones feels like?

@northoftheborder
This is gotta be one of the most frustrating part of this. Symptoms are so vast and vague, we don’t know if normal things are signs of something worse,… or just normal.
EVERY little ache or pain is a symptom for me now.

@asgmiami1 If it's a comfort, I went through the same thing, but made it to the other side after a couple of years: for the most part, aches and pains are just aches and pains again.

It makes sense that we're hypersensitive for a while after a big shock like a prostate-cancer diagnosis.

@asgmiami1 That reaction to a new pain or sensation sticks with you for a long time. For me, after 14 years, it is still present but subdued from years ago. One of my Mayo ENT surgeons responded to my question about this saying that cancer pain will not go away. It will just continue and worsen. That was certainly the case with my original SCC growing into the bone at the base of my skull. It was an unrelenting pain, day or night, a burning type of pain that did not change with position or movement. I was using a topical pain patch to sleep at night and round the clock Tylenol and Ibuprofen. Perhaps Dr. Moore's advice will help you also.

@sepdvm
I’m sorry you went through that.

April 2026 got diagnosed with aml. Bone marrow cancer. What you bones feel like have this type of cancer?
My shoulder feels broken. I can hardly lift it and it shakes now. I can't sit on the floor because the back, hip muscles and legs feels like someone slammed a car door on your lower area. It takes about 15mins to get up off the floor. Ribcage feels like you got kicked by a steel toe boot. Its thrombing pain that never goes away. I told people it's like when you first start working out, when you havent in a few months, that 2nd day where ya cant move 3x. And it's also like doing crossfit for 5 days straight and you never did crossfit before.
You can hardly walk some days. Lifting your legs is agony. Then you stomach is bloated 5x the size from chemo.
I use to run about 6 miles and then my full time was on my feet all day for 16hrs. So this is a nightmare for me. Gained 30lbs and alot of swelling. The pain thou never goes away. Everything hurts. You arent comforter ever.

@aimee1245 My goodness, this sounds like you’re living a nightmare. I’m so sorry you’re having to deal with this level of body pain, weight gain and bloating. I had AML but my experience was nothing like you’re trying to cope with. There are quite a few members in Connect who have AML or gone through treatments for this form of leukemia. Hopefully others will pop into the conversation to share if they’ve had any similar experiences to yours.

Usually significant weight loss is more of an issue during treatment. You mentioned gaining 30 pounds with lots of swelling. It sounds like you’re retaining fluids which can be a side effect from chemo or other underlying issues. But edema can also involve more than your limbs. So it’s very important that your doctor is aware of this water retention.

What type of chemotherapy are you taking? Have you talked to your oncologist about these side effects? Are you able to take any over the counter pain meds?

@loribmt Venclexta and inqovi.
I absolutely have edema still. My diet is also all over the place also. Most people loss weight im gaining. Im also on a ton of other things like antifungal etc so on
If you dont mind me asking, if you had aml or have what did you experience?

@aimee1245. Looking at the Inqovi website this morning, the list of side effects do include joint and muscle pain, also swelling of legs and arms. But what you’re experiencing sounds beyond an expected side effect from this drug and this is certainly negatively impacting your quality of life! It could be the Inqovi itself or in combination with the other required drugs that go along with chemo.

Most of the time chemo drugs will cause nausea, serious fatigue, drop in blood counts, hair loss, change in appetite, weight loss. Some people do experience edema and have to wear compression socks to help. I went through all of that with my AML treatments (which was standard intensive chemo of Cyterabine and Idarubicine) for several months (in a hospital setting). Admittedly it was rough and I lost nearly 50 pounds. But I never had any pain such as you’re describing. The only time I had pain was from Neulasta, the medication given to restore neutrophils.

Reading the information for Inqovi, it states that “Inqovi is a prescription medicine used in combination with venetoclax to treat adults with newly diagnosed acute myeloid leukemia (AML) who: are 75 years of age or older, or have other medical conditions that prevent the use of standard chemotherapy.”
Do you fit that criteria?

The reason I ask, is there are other treatments for AML that might not elicit these awful side effects for you. You have every right to discuss this with your doctor to possibly consider other options such as Vidaza, which is frequently paired with Venetoclax to bring AML to remission and maintenance. That seems to be pretty well tolerated.

So has this been going on since you started treatment in April? Have you had a discussion with your oncologist about your side effects? It’s ok to be the squeaky wheel!