Hip and Knee pain 2 years after chemo

MandiePandie

My dad is almost 2 years out from chemo (he finished on 5/25/2021) and he’s been having horrible hip and knee pain as soon as he puts any pressure on it. He still walks around but he’s in pain all the time.

He was due for a follow up and so doc ordered PET and a bone scan, and I’m just a horrible mess of nerves.

I know I’m not special by any means, scanxiety is a common occurrence, but nonetheless I feel catapulted back to the state of fear and worry I was in during his diagnosis.

I know that someone else’s benign hip pain doesn’t mean my dads is or isn’t, but is it common for this kind of thing to happen so far out from chemo and not be a metastasis?

Also, does a bone metastasis have any chance of NED?

We have been so lucky so far. I know others haven’t. My little one has fallen in love with her grandpa. I’ve learned so much from my dad, but all the ways he hasn’t even been compliant with his doctor ordered supplements let alone weight gain and poor diet (and denial) is just rushing in and making me fear that we wasted his chance at staying NED.

I know, unfair and not the most rationale of thoughts but I had to write it down. Thanks for reading.

suzycruise76

Dear Mandie, please try to stop yourself from all those bad thoughts and ideas. I will give you a better idea about what could had happened to your Dad.

I am assuming that he had radiation as well beside chemo...am I right? (if not, forgive me, it is probably not the problem I have in my mind). About a year after I finished my colon cancer treatment (chemo and radiation), I started having pains in my hip-at first in one, soon after in the other one, in my butt (like inside), and in a few months I had been almost unable to walk. It was in the middle of 2020-first covid year, so I had to wait for CT scan several months, and got this very surprising diagnosis: I had multiple insufficient PELVIS fractures. Very soon I got another surprise: my radiology doctor informed me that it happened from radiation of my pelvis, that a small percentage of patients can suffer from this.

Long story short- I got appropriate care in a hospital at first, in Rehab Centre as an inpatient and later as an outpatient. Was told by orthopedic surgeons that my condition cannot be improved by surgeries....so it had taken a long time to slowly heal some of the fractures, and feeling new fractures happening every few months. After having 2 sacroplasties- a sort of a new treatment, I started getting better, and fracturing probably stopped (I hope for good!).

It had been extremely difficult time for me; since the Rehab I need to use a walker, lately I can manage with just a cane for short distances. It took about 2 years to stop having strong pains, but now I do not have enough stamina to stand for longer time, and need to adjust my activities to it.

I am NED for 3 years, happy to be alive, but dealing with such a strange side effect of the cancer treatment.

I am telling this story just in case that it could be similar to your dad's case, and to let you know, even if it is difficult, it is NOT a new cancer, what is your biggest fear....I think.

Good luck to you and your Dad, please inform us of his progress and eventual treatments.

Suzy

BoulderSteve

Not sure if you dad's situation is any different than mine, but it might be the case that he's getting back to "normal" after the chemo treatment. One of the things I recall during my chemo from three years ago is that one of the IV bags they were giving me was a steroid to help my body handle the chemo. I had the usual side effects from FOLFOX chemo, but one wonderfully unexpected side effect was that the steroids took away all joint pain. I could happily climb stairs and maneuver around with no pain at all! As time went on and the steroids wore off, the joint pain started to re-establish itself back to the pre-chemo level. Had I not remembered what it felt like before chemo, I might have thought that I was developing new joint issues. You might want to check with your dad or his oncologist to see if steroids were part of his treatment.

SnapDragon2

Check inflammation markers and vitamin D levels is first thing that comes to mind.

Tueffel

Hi Mandie,

Hope you got some scan results. I am hopeful it will show nothing.

As for your dads pain: what kind of pain is it? Only when standing and then travelling down to the knee? Constant? Only when pressure is put on? Knee and hip on both sides or only one? Does he have also sensory or motor misfunctions there?

Besides bone metastases, I can tell you many different diseases that can cause bone pains.

As the posters before me mention: vitamin D, calcium, inflammation markers.

If you dad took cortisol during treatment, yes they can make you happy and painfree. Long term side effects of cortisol is osteoporosis. I am still figuring out the dose you need for that but it is indeed a possibility.

Wish you all the best

Kardwo

I'm really sorry to hear about your dad's hip and knee pain after chemo. It's completely understandable to feel anxious about the upcoming scans. The uncertainty can be overwhelming, but try to stay positive and take things one step at a time.