Joint/Muscle Pain on Xelox

[larway]

Just finished my 2nd cycle of xelox. I am wondering if anyone else experienced joint and muscle pain. I have ankylosing spondylitis so that may be the culprit but my meds that I take for it don't seem to be helping so maybe it is the chemo? I have been having trouble sleeping because the back and hip pain is keeping me up. I had some Norco left from my LAR surgery and they help but I don't want have to take pain meds everyday to be able to work.

If you experienced it, what did your onc give you to alleviate it? I start round 3 tomorrow and I am going to talk to him about it.

[BrownBagger]

I'm on my 7th round of Xelox and I've noticed that it can do strange things to my nerves. I get random pain, especially in my leg muscles. Might be low magnesium levels causing cramping. However, I think it's just the chemo messing with my pain centers. Fortunately, at least in my case, the pain doesn't last long and seems pretty random. Some old surgical scars, for example, flared up the other day. Next morning the pain was gone.

I'd do the usual stuff--drink more liquids, take mag supplements if your levels are low.

Good luck!

[Jack&KatiesMommy]

Yes. I had this pretty bad. My oncologist said that it was not the Xelox. He said he could test me for rheumetoid arthritis....but I never had that done. I would wake up at night because the joints in my hands hurt so bad...I could barely move them in the morning. My hips and leg joints hurt so badly, I felt like I was 80 years old. I thought I did have rheumetoid arthritis. However, about 2 1/2 years after completing my Xelox regime (it is the Oxy that causes this not the Xeloda...because I am still on the Xeloda only)....all of the pain is completely gone. 100%. It gradually got better over the 2 1/2 years....but it took that long.

I searched on this board at the time of my pain and could find no other reference to this issue...so I figured that the oncologist was right. Thankfully he wasn't and it was not a permanant conditiion. I took nothing for the pain, other than ibuprofen when it was really bad.

Cynthia

[larway]

No worries. The CRNP (dr wasnt in today) told me I shouldnt be hurting and cut me off mid sentence like I was a junkie looking for a score. I was so pissed off I almost got up and walked outbefore my infusion. I didnt ask for pain meds and dont want any just wanted to know if its chemo related or something else. But hey at least I know I shouldnt be hurting.

[Soccermom2boys]

Yes. I had this pretty bad. My oncologist said that it was not the Xelox. He said he could test me for rheumetoid arthritis....but I never had that done. I would wake up at night because the joints in my hands hurt so bad...I could barely move them in the morning. My hips and leg joints hurt so badly, I felt like I was 80 years old. I thought I did have rheumetoid arthritis. However, about 2 1/2 years after completing my Xelox regime (it is the Oxy that causes this not the Xeloda...because I am still on the Xeloda only)....all of the pain is completely gone. 100%. It gradually got better over the 2 1/2 years....but it took that long.

I searched on this board at the time of my pain and could find no other reference to this issue...so I figured that the oncologist was right. Thankfully he wasn't and it was not a permanant conditiion. I took nothing for the pain, other than ibuprofen when it was really bad.

Cynthia

So glad to see this thread and your post because I too am suffering post chemo with incredibly sore muscles and joint pain. Not loving the idea of it taking two and a half years to get better, but good to know it gets better! My upper arm muscles are always so sore, like that feeling you get when you get a tetanus shot right in that muscle tissue. So hard sometimes to reach out with my arms just so. And my thigh muscles are equally sore--really kicks in after I go for long walks or running, but since it hurts anyway I figure may as well just live with it and walk and run regardless. This is what I love about this forum, you can always find someone(s) going through the same issues as you, that you aren't crazy!

[larway]

I knew others would have had the same thing, this place is sometimes better than the cancer center for getting answers. Me and the nurse practitioner haven't gotten along since day one, she wouldn't even ask the dr. if I could have an anti-inflammatory she said see your rheumatologist. I told her my rheumy wouldn't touch me because he said he didn't know how it would impact chemo and my ileostomy and told me to check with my oncologist. UGHHHH! I have to be able to work, two kids in college and one getting married in March but being in pain all day makes my work suffer.

My back and hip pain is so severe that my legs will go to sleep having dealt with lower back pain for 20+ years I know that it is inflammation but no one will treat it because I am on chemo and my chemo dr. want treat it because his NP says I don't need it. I am frustrated to say the least and if I didn't have just 4 cycles left I would be doctor shopping.

[WriterGirl1969]

if I didn't have just 4 cycles left I would be doctor shopping.

As someone with only 4 cycles left, I would *still* be doctor shopping (and am in the process of getting a 2nd opinion even as we speak). Don't let them dictate your pain. They're not the ones that have to live through it. If they were, they'd be a lot more understanding.

--Tracy

[larway]

As someone with only 4 cycles left, I would *still* be doctor shopping (and am in the process of getting a 2nd opinion even as we speak). Don't let them dictate your pain. They're not the ones that have to live through it. If they were, they'd be a lot more understanding.

--Tracy

I am really considering it. I like my doctor but me and his nurse practitioner dont communicate very well. When she told me they dont treat pain because it isnt related to my treatment I nearly lost it. I am an easy going guy but she makes me angry almost everytime we talk and she is the person I see the most. I tried explaining to her that my regular dr. And my rheumatologist wont touch me bc they dont want to give me anything that will react with the chemo she kinda scoffed like I was lying.

I may not change doctors but I will not be discussing my side effects with her again. She wouldnt even change me from steriods to a non steriodal appetite med when I told her I am only getting about 4 hours of sleep at night, which is my normal reaction to steriods.

I am seriously considering telling them that I am done with oxy. I have used all of my fmla and have to work, two in college and a daughter getting married require it.

[WriterGirl1969]

I am really considering it. I like my doctor but me and his nurse practitioner dont communicate very well. When she told me they dont treat pain because it isnt related to my treatment I nearly lost it. I am an easy going guy but she makes me angry almost everytime we talk and she is the person I see the most. I tried explaining to her that my regular dr. And my rheumatologist wont touch me bc they dont want to give me anything that will react with the chemo she kinda scoffed like I was lying.

I may not change doctors but I will not be discussing my side effects with her again. She wouldnt even change me from steriods to a non steriodal appetite med when I told her I am only getting about 4 hours of sleep at night, which is my normal reaction to steriods.

I am seriously considering telling them that I am done with oxy. I have used all of my fmla and have to work, two in college and a daughter getting married require it.

UGH! That ticks me off and they're not even my doctors! Can you tell your doctor that your nurse practitioner is refusing to treat your pain and/or eating issues? If he sides with her, I would *definitely* change doctors. If not, maybe they can not have you seeing her most often as you are now. My ex-husband used to get steroids all the time, and sleeplessness is a very common side-effect. I'm really kind of stumped that someone like me would know that and a NP wouldn't.

It's really sad, but we truly have to fight to get proper care. Don't let them push you around. A good doctor will understand and talk it through with you, even if they disagree. If they don't even listen, then how would you even know if you're getting the best care and treatment? I will echo what others have advised, and say find a doctor you can trust. This is *your* life after all. Do what's best for you!

Sending LOTS of hugs and prayers,
--Tracy

[MissMolly]

Pain and its treatment, or more likely pain and its lack of treatment, is going to be a point of more discussion in the days and months ahead.

In March 2016, the DEA in collaboration with the NIH and CDC released a comprehensive report called the "National Pain Strategy." The aim of the report is the curb the widespread and growing reliance on opiates/narcotics and to prevent the number of deaths associated with overdose.

The effects of the National Pain Strategy on ordinary people, as well as long-term chronic pain patients, is already being felt.

Any individual who is prescribed a narcotic/opiate in an amount of 120 mg morphine a day, or of another drug with a morphine equivalent of 120 mg a day, will be required to adhere to strict federal monitoring and diversion protocols.

If you go to an ER, you can no longer expect to receive an opiate/narcotic to relieve pain.

If you undergo a surgical procedure, you can expect far less generous dosing of narcotics post-operatively. And you can expect even more frugal prescribing of an opiate/narcotic at discharge and the days/weeks at home recuperating.

I had a 92 year old neighbor who fell and fractured her hip last month. She was provided with one day of IV narcotics. Day 2 she was told that plain Tylenol would be sufficient for her pain. My elderly neighbor was beside herself - in both physical and emotion pain.

Nik wrote a post where she described an ER visit a few days ago where she was provided with an ineffective dose of IV dilaudid, 0.5 mg as opposed to a 1.0 mg dose that she was familiar .

I receive Palliative Care (care and comfort) due to compromised and fragile health. Even under the auspice of Palliative Care (which is generally generous in doing whatever it takes to keep patient comfortable) the narcotic prescriptions that I am provided are under careful watch and oversight.

My sense is that people are going to hurt more now in our present medical reality than would have been the case 2 or 3 years ago. It is a difficult political and societal climate to be an individual with ongoing and/or chronic pain.
- Karen - .

[larway]

I had an epidural and Tylenol in the hospital when I had my resection, no narcotics. I don't necessarily want pain meds but they wont let me take any anti-inflammatory meds because they are worried about loose bowel movements. I have an ileostomy, all I have are loose movements. My pleas fall on deaf ears. I was told to call if I experience neuropathy in my hands or feet that doesn't go away. I called yesterday to let them know that my fingers have been tingling and numb since Sunday morning, no response. I like my doctor but his staff leaves something to be desired.

[larway]

Pain and its treatment, or more likely pain and its lack of treatment, is going to be a point of more discussion in the days and months ahead.

In March 2016, the DEA in collaboration with the NIH and CDC released a comprehensive report called the "National Pain Strategy." The aim of the report is the curb the widespread and growing reliance on opiates/narcotics and to prevent the number of deaths associated with overdose.

The effects of the National Pain Strategy on ordinary people, as well as long-term chronic pain patients, is already being felt.

Any individual who is prescribed a narcotic/opiate in an amount of 120 mg morphine a day, or of another drug with a morphine equivalent of 120 mg a day, will be required to adhere to strict federal monitoring and diversion protocols.

If you go to an ER, you can no longer expect to receive an opiate/narcotic to relieve pain.

If you undergo a surgical procedure, you can expect far less generous dosing of narcotics post-operatively. And you can expect even more frugal prescribing of an opiate/narcotic at discharge and the days/weeks at home recuperating.

I had a 92 year old neighbor who fell and fractured her hip last month. She was provided with one day of IV narcotics. Day 2 she was told that plain Tylenol would be sufficient for her pain. My elderly neighbor was beside herself - in both physical and emotion pain.

Nik wrote a post where she described an ER visit a few days ago where she was provided with an ineffective dose of IV dilaudid, 0.5 mg as opposed to a 1.0 mg dose that she was familiar .

I receive Palliative Care (care and comfort) due to compromised and fragile health. Even under the auspice of Palliative Care (which is generally generous in doing whatever it takes to keep patient comfortable) the narcotic prescriptions that I am provided are under careful watch and oversight.

My sense is that people are going to hurt more now in our present medical reality than would have been the case 2 or 3 years ago. It is a difficult political and societal climate to be an individual with ongoing and/or chronic pain.
- Karen - .

You are exactly correct. I have a friend with chronic back pain he was taking off pain meds and given a pain patch which has left him missing work more often than not. The reason he was given was the crackdown in Alabama on doctors prescribing opiates. Several pain clinics in Alabama have been raided by law enforcement and my childhood physician surrendered his license because he refused to justify his prescription writing to law enforcement. He was semi retired and probably would have relented had he been younger but refused to comply on principle.

I was diagnosed with ankylosing spondylitis when I was 21 years old. I was playing college athletics at the time and getting to see the best doctors. I was misdiagnosed as having mono for two years before I happenchance to meet a doctor whose roommate in college had the same thing. He had me tested and within a month I was on meds and pain free.

I took Indocin (and I took all the NSA's that were later found to kill you) for almost 17 years before it really started to irritate my stomach. I found a doc that helped me find an alternative treatment plan of daily cardio and stretching along with a study on a low starch diet and got off the anti inflammatory meds, I never really took pain meds other than over the counter and the occasional ultram. But now most of the foods that I ate are off limits bc of my ileostomy and my exercises are off limits due to the risk of hernia again bc of my temp ileo. I assume that the nonsteriodal anti inflammatory meds must have negative reactions combined with Xelox but surely I am not the 1st patient to have an auto immune inflammatory disease and take chemo.