The Colon Club

My medical team seems to be stumped on this one, so figured I would check with other patients to see if anyone is experiencing this!

I had surgery - my second liver resection - in mid-October. My recovery really kicked me in the behind, and I had a particularly rough go of it because my red blood count was low and seemed to hover there forever.

Now it's finally starting to rebound - hemoglobin is up to 10.5 - a few points higher than it has been, but still not in the "normal" range. My iron is a little low. So is my magnesium. Potassium low end of normal.

BUT my muscles and joints have been sore for about two weeks now. It's really pretty bad - I wake up each morning feeling like I ran a marathon the prior day. I can't write more than a few words with a ballpoint pen until my hand starts to bother me. It really hurts each time I need to get out of a chair or a car. I'm feeling it in my hands, knees, shoulders, elbows primarily. I feel less fatigued overall, but I'm still short of breath when I exert myself even a little - e.g. walk to the bathroom from my office - and I come home from work ready to crash into my bed. For a while I was thinking it was that my muscles atrophied during my recovery, and now they are sore because they are being used again - but if that's the case, would it last for two whole weeks?

They gave me a magnesium infusion yesterday; if that was the issue, the infusion hasn't helped turn anything around yet. Based on Dr Google, I was hoping it might have been an iron deficiency thing, but the medical team doesn't seem to think so, and now that I can see I'm just a little low, I'm not convinced either. (I might do an iron infusion anyway, figuring it can't hurt.)

Any other ideas what could be causing this?? It's been over three months since I had chemo, so I don't think that's at play.

Shingles? I’ve had it several times and in the later bouts I never had the blisters but my joints were really sore and I felt very tired, muscle pain like the flu. But 2 weeks seems like a long time (it only lasted a few days for me).

Chemo can cause many deficiencies. They should do a whole slew of blood tests. Some that come to mind that they don't always do routinely are B12 level, D3, thyroid, . My sister who is a cancer survivor had an extremely low B12 level and very low D3 level. They treated her for this and it has helped a lot. She too was very fatigued and had no energy. It could also be your low iron level. Some people can go golf 18 holes with a HGB of 9 and others can't even get out of bed with a level around 10. It's different for each of us. Low HGB can also cause shortness of breath and sometimes lightheaded feelings.

At any rate, I hope it resolves and your feeling better soon.

Deb

You're not on chemo right now, correct?

My first guess would be a magnesium/potassium deficiency. That played hell with my joints and muscles during treatment. The potassium infusions helped but not enough on a day-to-day basis. Finally, I started eating a banana (I hate bananas) every day and that seemed to keep things more stable. I also ate more sweet potatoes, avocados, and dried apricots - all of which are high in potassium. Coconut water is another very good source - just a glass of it has 600 mg of potassium, plus it’s a good source of magnesium too.

But I'm also concerned about your bile leak issue. Bile plays a big part in Vitamin B12 absorption so your leak could be creating malabsorption of B12. A B12 deficiency can cause all kinds of issues - have you been abnormally fatigued, had balance issues, or been breathless or dizzy a lot lately? A B12 deficiency can also lead to a reduction in healthy red blood cells (anemia) and you mentioned having low RBC.

You might ask for a B12 blood test to check your levels. Or ask if you can see an integrative medicine doctor and explain your symptoms to her/him. Or you could ask if it's okay to take a B12 supplement (ask if there are any contraindications with your current meds) and see if that makes you feel better.

One cool thing about Vitamin B12 (really, all the B vits): your body absorbs only as much as it needs, and any excess passes through your urine so it's safe to take higher doses.

Hope you figure out what's going on and feel better soon!
Juliej

No chemo right now, no.

Tomorrow I’m going in for labs and an iron infusion. I’ll ask them to pull B12 - that’s one I haven’t been checking. And I know someone mentioned one other thing, was it D3 maybe?

I know last labs, my magnesium and iron were below normal range. Potassium was super low side of normal. I’ve definitely struggled with potassium and magnesium from the beginning of my treatment - I take supplements for both. They’ve been low for so long it seems unlikely that they would suddenly have that impact, but maybe??

I’ll be interested to see if I’m low on anything else and how I feel coming out of tomorrow’s infusion...

I like bananas so maybe I should go have one!

ginabeewell wrote:No chemo right now, no.

Tomorrow I’m going in for labs and an iron infusion. I’ll ask them to pull B12 - that’s one I haven’t been checking. And I know someone mentioned one other thing, was it D3 maybe?

I know last labs, my magnesium and iron were below normal range. Potassium was super low side of normal. I’ve definitely struggled with potassium and magnesium from the beginning of my treatment - I take supplements for both. They’ve been low for so long it seems unlikely that they would suddenly have that impact, but maybe??

I’ll be interested to see if I’m low on anything else and how I feel coming out of tomorrow’s infusion...

I like bananas so maybe I should go have one!

Oh, no, a banana lover! Keep those things away from me!

I had super low potassium and magnesium all during treatment too. What's with us? Those giant potassium pills they prescribe are a real pain to swallow. That's why I started eating high-potassium foods, and actually they seemed to help more than the supplements! Of course, an infusion gave the best results but I needed something between chemo treatments.

I would ask for D test too. CRC patients are notoriously low in Vitamin D. I started out so low it was below the detectable range! Now Dr. K has me on a supplement and I get tested with my labs every 3 months.

Let me know what your labs today looked like. I'm curious...

Juliej

juliej wrote:
I would ask for D test too. CRC patients are notoriously low in Vitamin D. I started out so low it was below the detectable range! Now Dr. K has me on a supplement and I get tested with my labs every 3 months.

Let me know what your labs today looked like. I'm curious...

Juliej

No labs today! Northwestern thought I didn’t need them, and since MSK moved my stent removal procedure to this Saturday, I figured I would just ask them.

I am noticing less all over soreness now - maybe because I really pulled something in my shoulder / back. It hurts to breathe! I’m sure it happened because I’ve been hobbling around trying to compensate for my various aches and pains. Plus carrying my laptop in my purse - I really feel it when I sling the bag over my arm.

I am going to blitz myself with pain meds in hopes I can get it to go away enough to resume a normal range of motion.

Other than my shoulder, I’m feeling pretty good after my iron infusion.

Lots happening next week, I need to update my journal when I have a moment.

ginabeewell wrote:I am noticing less all over soreness now - maybe because I really pulled something in my shoulder / back. It hurts to breathe! I’m sure it happened because I’ve been hobbling around trying to compensate for my various aches and pains. Plus carrying my laptop in my purse - I really feel it when I sling the bag over my arm.

I am going to blitz myself with pain meds in hopes I can get it to go away enough to resume a normal range of motion.

Other than my shoulder, I’m feeling pretty good after my iron infusion.

Oh, carrying my laptop in my purse kills my shoulder! It's crazy I even attempt to do it, especially when I have a perfectly nice laptop bag.

Blitzing yourself with pain meds will help. And put some heat on it, like a heating pad or heated gel pack.

The iron infusion should give you some more energy. But keep eating those bananas!

Juliej

Most of the pain you've been having sounds like what I've been experiencing since May. But mine is definitely caused by inflammation caused by Keytruda, so the only thing that has helped me--the anti-inflammation drug Celebrex--probably won't help you. The other thing I finally did was aquatherapy: physical therapy in a 92 degree pool. The heat feels wonderful, and it definitely help limber up and strengthen the muscles affected by my immobility.