Muscle and joint pain after chemo

Jenda, I am sorry to hear you are having so much pain.  I don't know if where you live or if your insurance will allow it but how about an alternative treatment like accupuncture?  Try to remember, you just subjected your body to a  lot of chemicals!  Please don't be too hard on yourself.  Hopefully you can find some relief.

bluesmama said:

I'm 42.

It's been a strange trip for me for sure. But honestly, I'm feeling good today. I take it day by day and make sure I go to therapy once a week to decompress.

I thought I got away with just a simple hysterectomy two years ago but now I've got bigger scars! So while I'm not happy about the bone pain, constipation, fatigue, chemo brain, gum disease, and pending hair loss... it's been pretty mild so far on the carbo-taxol. Now, I may change my mind after the last infusion come March. Hope you're feeling better.  

Hello Jenda:

 Misery doesn’t love company when you’ve been diagnosed with any kind of cancer, much less the kind we have on this board.  Your pain is understandable, and not unusual for having been exposed to so many chemo treatments.  As to your remark to “BluesMama”, debulking is performed as a precautionary measure to stop the further spread of the cancer.  So any “non-essential” organs that can be taken out are usually removed.  Monitoring our CA-125 count is secondary in that it is an indicator of tumor activity.  Anytime it is over the customary count of 35 and continues to escalate is time for a scan to see what’s going on.  In my case, it was already Stage IV because there were innumerable tumors throughout the peritoneal fluid in my abdomen.  But even before surgery was even thought of as a possibility, I had to undergo chemo treatments that consisted of 6 treatments of Carboplatin/Taxol (each session 3 weeks apart).  It’s been my experience that while some tumors were reduced in size, others “cropped up” when a scan was performed.  So we do the best we can, but with no guarantee of results.  What Stage IV Ovarian Cancer patients can most hope for, short of a miraculous healing, is a long period of time without a sudden rise in our CA-125 count.  It’s called “Progression Free Survival” (PFS).  I had this discussion with my oncologist again last week when I had my 5^th of 6 treatments this go round.  I said to him, “And as a Stage IV the most I can hope for is hopefully a long period of time in between further spread of this cancer.”  He agreed.  Yes that’s the goal.  I do hope you have an oncologist who is “leveling with you.”

 Now as to bad news, when I had a PET/CT scan in October 2016, the cancer had spread to my windpipe, plus the fluid in the Peritoneal Space around my lungs is increasing but not greatly.  There is increased tumor activity near the gastric area and more in my pelvis.  Now the good news is that although I was originally diagnosed with Stage IV Peritoneal Carcinomatosis and Ovarian Cancer Stage IV in November of 2012, I am still alive and now beginning my fifth year.  I can’t count the times I wondered “how much longer—how much more?”  But I’ve never become despondent to the point that I said, “Life isn’t worth it.”  Anytime I have questioned my longevity, the Lord has reminded me that He will let me know “when” and my time isn’t up yet! 

  And to be honest, this last series has taken a toll on me as well.  Originally I was left with Neuropathy in mostly my ankles, and when I lie down flat on my back, my feet and ankles feel numb.  Now this time around, I also have the “numbness and tingling” in my fingers, plus tongue sensitivity.  I’m keeping my teeth brushed and gums massaged and using the Biotene toothpaste and oral rinse at least every 4 hours.  So I haven’t had any mouth sores, and I’m thankful for that.  But sorry to say, you will just have “unexplainable pains” that crop up out of the blue.  I write down those instances on the calendar and tell my doc about them. 

 In the last two weeks, I called and they made an appointment for me to come in because my left leg was red and swollen and felt hot to the touch.  This can be a sign of a blood clot, but it wasn’t.  But an ultrasound is the only way you can tell for certain.  So keep a check on that.  But even as I am writing to you, I have some pain in my left breast, some pain in the center of my back, and a sharp pain in the top of my head.  I’m just saying, no telling where you will hurt with this type of cancer, and especially while you’re on chemo.  This series has been harder on me than others.  My body is naturally weakening with time, because I’m not getting better, I’m slowly progressing downward, but who won’t take 4 years and counting and thank God for it.  I do.  Yes, it can be depressing.  And after a continuous period of one little thing after another, I have thought to myself, “Just how much of this do I want to tolerate?”  After all, there will be a time when stopping treatments will be a decision that I will make.  But at the slightest sign of feeling better, I think to myself, “Yes, I can do this again!” 

 Painful it is.  Discouraging it is.  But how many choices do we have?  With my next treatment, I will have endured 18 treatments of chemo, plus targeted radiation, and Cytoreductive surgery, in which my ovaries, fallopian tubes, omentum, spleen, gallbladder and portions of my intestines were removed.  Ever since the intestinal “remodeling”, nothing has been regular and bowels vacillate between diarrhea and constipation.  But that’s better than intestinal blockage, so we have to “look for the silver lining” amidst all the things we don’t like. 

 As for the .8 WBC and they still gave you chemo, I am surprised!  My oncologist would NOT have given me a treatment at that low level.  Your body has been subjected to a torturous routine, as has others of us here, but the choices are few, and the treatment is standard for Ovarian Cancer.  To say we’re sorry to hear of your troubles is an understatement.  I can only tell you that others of us have similar problems and yet we hope that the torture treatment will result in a long period of time when we can catch a second breath and continue to enjoy some of the things and people we most love in this life.

 It hurts to read your story, and for us to tell you that you’re not alone, isn’t helping your pain.  But we do “feel your pain.”  This last week, I’ve been walking around the house with 2 canes—that’s how weak I am.  And all of a sudden two days ago, I ate a high-protein bar and suddenly became sick and nauseous.  I did take an anti-nausea pain but I couldn’t think of eating anything.  I stayed in bed for the better part of Saturday and Sunday.   Now it’s Monday, and though my fingers and tongue are still tingling, I’m down to “one cane!”  And today, I think I’ll make it a bit longer.  This gives new meaning to the expression “out of the BLUE”!  One minute we’re just fine, the next minute, we wondering, “What’s happening?”  We may not always be able to tell you what you want to hear, but we really are here to commiserate with you, ‘cause there’s lot of aches and pains in our little world. 

 We can and do pray for one another, and we will pray for you as well.  How much more is a question we find ourselves asking all the time, and we’re always hoping that the “more” will be worth the pain we’re enduring.  That’s our goal—feeling normal and pain free if only for a time!  Welcome to our family.

 Love Loretta, Age 77 & hopefully will reach 78 on February 12, 2017!

I was diagnosed in 2009 with stage 1c, did six rounds of taxol/carbo, the last few treatments were painful. It's been 7 yrs and my ca125 jumped to 93, so back in for testing this next week.