The Colon Club

Well, I was sailing along happily for months with no apparent side effects except some sleepiness and maybe an occasional ache that traveled around, when BOOM! Stiff neck, joint pain in right thumb and left knee. Really painful. My thumb hurts constantly from the wrist up, with sometimes those electric stabbing pains. My neck is stiff and painful on both sides, and some mornings I wake up feeling like my shoulders, neck and head are a cage of pain. I seem to have very slightly twisted my left knee uncrossing it at church, of all things, and now I am hobbling and it is stiff and painful. Stairs are difficult, strictly one step at a time, with only the right knee allowed to bend. (One morning I had to go up on all fours...) And now it seems to be starting up in my left thumb and elbow...

I can't do anything. I can't really weed, dig a hole, take a walk, paint what needs painting, lift anything heavy. I used to bound into the infusion center, the most energetic and healthy-seeming person there. Today I hobbled in like a semi-crippled old lady. This has happened over a period of maybe 6 weeks since my thumb first started to ache after I made a big batch of rhubarb ginger jam. (I love it: crippled by church pew sitting and jam making!!)

Last week my onc postponed my Keytruda infusion, I hoping to have it after I see him tomorrow afternoon. We had talked about two different kinds of short steroid courses, and I think it is definitely time. Ibuprofen helps, but not enough to regain function.

I'm wondering if anyone else has had this degree of joint pain, and if so what you did about it? If I were not on Keytruda, I would have been to see my PCP weeks ago, who probably would have referred me to some kind of a specialist. Have people gone that direction? CBD oil/salve? Acupuncture?

I (thankfully) have not experienced any sort of joint pain or really any pain at all on Keytruda in the year I have been on it. I have had a few weeks where I ached all over (as if I were getting a cold/flu) but that only lasted 5-6 days here and there. I am sorry that you are experiencing this.
Cynthia

Hi ,
Sorry to hear about your complications.

While I do experience pain for some time after infusions, nothing like what you're describing.

He's continuing to hold off on Keytruda, prescribed one of those 7-day descending prednisone packs. He says I'll feel better tomorrow. I sure hope so.

I haven't taken Keytruda myself, but Annie did (BeansMama) and I remember her telling me that her bones just ached terribly, especially in the fall after she'd been getting it for several months. She pushed the doctors and surgeon to set a date for surgery to avoid additional rounds due to the pain.

The good thing was, when they did surgery and removed the tumor in her liver, it was completely dead. She was cancer free.

So while I can't give you much by way of advice, but I thought I'd pass on the info. So sorry to hear you're going through this, and I hope you find something to alleviate.

Hugs and Prayers,
Tracy

So I had the 6-day prednisone pack starting 6/28, and it gave me a few days of glorious low pain and high energy...but the pain came roaring back as soon as I was done. It is probably at a level about 10% less than pre-prednisone, though. Ibuprofen helps a bit, but I'm still semi-crippled. I think I'm going to call the doctor's office today and see what they suggest. This is not a good way to be living. I have to be able to at least get some exercise.

It's weird. I actually feel better than when on chemo at some basic level, but worse in others. I was comparing how I felt last July 4th and this, and honestly I felt better then. Wah, wah. Sorry for whining.

So, would Claritin help? I know it helps me when on neluesta. I have no idea if that works the same way!

Hope you feel better.

boxhill wrote:So I had the 6-day prednisone pack starting 6/28, and it gave me a few days of glorious low pain and high energy...but the pain came roaring back as soon as I was done. It is probably at a level about 10% less than pre-prednisone, though. Ibuprofen helps a bit, but I'm still semi-crippled. I think I'm going to call the doctor's office today and see what they suggest. This is not a good way to be living. I have to be able to at least get some exercise.

It's weird. I actually feel better than when on chemo at some basic level, but worse in others. I was comparing how I felt last July 4th and this, and honestly I felt better then. Wah, wah. Sorry for whining.

Whine! You have all the rights to! I would be frustrated too if I were you!

I've been on low dose prednisone for a number of weeks now, and while I still have pain in the specific areas, it is greatly reduced. I went in for a visit with the NP yesterday and found out that much to my surprise the oncologist wanted me to restart Keytruda, if I felt well enough. So I had an infusion yesterday. I'm to call in if anything untoward happens or the pain increases. I probably have about 10 days of prednisone left.

I was under the impression that he intended to wait longer, so I guess this is encouraging.

In today for another infusion. After a worrying flare for a few days upon resuming Keytruda last time, the pain subsided to a bearable level, and in fact gradually declined.

So now we are going for weaning me off Prednisone. I have about 12 pills left, and I'm to split them using my pill cutter, and take half of one per day until they are gone. I really want to be off it, because it wreaks havoc with my blood sugar and, I think, exacerbates my insomnia. It also gives my blood pressure a mild boost, and makes me feel generally a little weird. Keeping my fingers crossed that the pain remains bearable.

Post infusion event of the day: unbeknownst to me, my port kept bleeding and rapidly soaked through the bandaid, resulting in a large and growing splotch of blood on my cream-colored t shirt. My nurse came back in as I was leaving and gasped aloud. Rebandaging and futile rinsing/wiping ensued. I ended up going to the bathroom, taking off my shirt, and washing the front of it in the sink with the hand soap and semi-drying it with paper towels. Never a dull moment.

CT scan yesterday: stable. Lymph nodes still normal, no signs of any new cancer anywhere, tiny little liver thing still there and unchanged.

At this point the chances are that either it is dead or it wasn't a met in the first place. All, including my original surgeon, agree that it doesn't warrant surgery.

Does that mean I can consider myself NED? Who knows. It is frustrating, but obviously very, very, VERY far from the worst problem one could have.

Meanwhile, this is the first day I haven't taken any prednisone at all, and my entire leg hurts from the knee up. My oncologist is referring me to the sports medicine people, who may be able to address the knee inflammation directly.

The oncologist asked me if I wanted to stay on Keytruda, given the pain situation, or go off it and watch and wait. I said I'll keep on with it. I think I'll be taking Tramadol tonight, though.

My doctor described the CT report to me as "basically stable," but Neither of us had actually seen it before my appointment. I read it online yesterday and noted that the radiologist actually said that the tiny liver thing appears reduced in size. Hmmm. Maybe evidence that it is/was a met after all? Everything else is completely normal. Except now she mentioned that I have a "small simple lipoma" on the anterior chest wall. What the heck? Nothing to worry about, I gather.

Pain has been increasing and getting steadier. Last week the NP had to be persuaded to allow me to have my infusioin. This morning the pain was so bad that I broke down and took my last oxycodone pill that I had been hoarding since April 2018.

Last Friday I FINALLY had an appointment with an ortho doc. He had x-rays taken of my knee and hand: no osteo arthritis. He also drained fluid from my knee, ultrasound guidance, and sent it for tests to eliminate bacterial infection and gout, and check for inflammatory markers. Everything negative. The numbing shot to my knee was BAD! The drain needle is a honking big thing that they have to push through cartilage. Not fun, even after numbing.

I am pushing for someone, anyone, to give me the proverbial cortisone shot into the joint(s). Could apparently give me relief for 12 weeks, or even longer. The non-oncology people seem to think I can easily wait for weeks. I explained to them and my PCP that this is not your average sore knee: this is a matter of whether I can stay on Keytruda or not, and thus potentially a matter of life and death.

I have GOT to be able to get some exercise. Right now I can only hobble, at best. As a T2 diabetic I can't afford to take more prednisone, which blows up blood sugar, and I really need exercise to control my blood sugar at the best of times. My eyesight is bad, and I am afraid I'm developing retinopathy due to high blood sugar from all of the drugs over the past year and a half. Opioids are out, for obvious reasons. I also need exercise to combat chronic depression. I can deal with the neck and shoulder pain and waking up with a headache in a rack of pain every morning. But I have to be able to walk.

In a lot of ways I feel incredibly lucky: despite being Stage IV, all I have is this 5mm or so subcapsular liver node. Keytruda knocked back the lymph nodes. The liver node might even be dead. Things could be so much worse! But this ongoing pain is just debilitating and depressing. I can't envision existing like this.

Has anyone ever had the cortisone shot treatment, and did it work well?

Thanks for listening to my venting.

I'm so sorry you're in such pain, Boxhill. Yes, it's wonderful that Keytruda is working on your cancer, but quality of life is also really important. I hope you get that cortisone shot, or something that helps!

boxhill wrote:In a lot of ways I feel incredibly lucky: despite being Stage IV, all I have is this 5mm or so subcapsular liver node.

I’m really sorry you’re having to go through this boxhill - indeed I hope the treatments can help with the side effects soon!

Maybe a really stupid question - but given it’s so small and superficial, have they not discussed ablating or even wedge-resecting that solitary node?

Cheers
Rob