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Back Pain

CheeseQueen57's picture
CheeseQueen57
Posts: 919
Joined: Feb 2016

Merry Christmas!  For the past 3 weeks I have been suffering with back/hip pain to the point that I am having trouble walking. I finished with my radiation in October. Before this happened I did have some degree of arthritis and osteopenia deterioration in my back, but never suffered this type of pain. It seems to be a little alleviated by extra strength Tylenol ( I can't take NSAIDS because of Coumadin). 

This is really annoying!  We really wanted to plan a trip to Italy for spring but I would have a hell of a time on a trip like that. Also I'm afraid it might be related to the cancer. I'm scheduled for a pelvic MRI tomorrow. 

BTW, my eyes have still not resolved (swelling of optic nerves). The experts are pretty much stumped as to the cause although the tests they run show incremental improvement although I don't notice it. 

Lou Ann, I seem to remember you mentioning some back pain?

EZLiving66's picture
EZLiving66
Posts: 1405
Joined: Oct 2015

I'm so sorry for the back pain, Susan.  I sure hope it's not a recurrence, and yes, I remember Lou Ann had quite a bit of back pain.  I hope this clears up so you can make your trip to Italy!!

Love,

Eldri

Nellasing
Posts: 529
Joined: Oct 2016

That is SUCH a bummer- I hate that you are having to take those meds.   I hope they find out something useful as that test doesn't sound in the least bit fun- probably involves laying flat and no moving for a long time?!  That's hard when you are in such pain!

I have been having pain in my right hip and across my lower back.  I thought perhaps it was due to the way they positioned me for that long surgery or something?  Any old injuries flared during the side effects from chemo/neulasta... terrible pain.  I do have a ruptured disk between L4-L5 and hurt my tailbone so figured it might be kicking up old injuries?  I saw my chiropractor and he helped quite a bit but it still aches and burns.  I also get acupuncture.  Both those things keep me from having to take otc meds.  I saw my onc yesterday for my 2nd ck since chemo ended (YAY NED) and she decided to send me to PT.... oh joy!   My own fault for complaining about fatigue, pain and the weight that seems to be packing on from no where!!  I've gained 20 lbs since Oct 19- WHAT IS UP WITH THAT???  I am eating the same as always (all orgainic, lots of water, vegan, no meat, no dairy, no eggs)- not walking as much of course but still- just doesn't make sense.  I think it's lymph fluids but she didn't want to hear about that.

Anyhoo- prayers for you to overcome this and find relief so you can take your trip in comfort and peace.  (((HUGS)))  <3 <3

PS  I am still suffering from the blurry vision.  Since it's a "thing" I have been waiting for a few months to see if it clears before I go see the eye Dr.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Susan, I am so sorry to hear about this back pain and how it might affect your trip to Italy (I'm so jealous!). Hopefully the MRI will shed some light on the problem so that you can resume your plans accordingly. Please let us know what you find out. Kim

Red Corvette
Posts: 107
Joined: Jan 2016

Mrs. Red had moderate to severe back pain consistently since completing frontline treatment (chemo and brachytherapy). Her gyneonc put her through the usual scans and tests and the opinion after ruling out any cancer reoccurrence (thank the lord) is arthritis and some age related degeneration. She did have some back pain before the cancer diagnosis but not as consistant and to this pain level. They had her do some PT but no real improvment. At least she does get relief from stretching and laying down to take pressure off the back. I'm convinced,  my opinion only, that the chemo doesn't cause this stuff but exacerbates any conditions you had before. At least for Mrs. Red it's manageable but still annoying.

Red

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Good to hear from you.  So glad everything is going reasonably well for Mrs.Red, but hate to hear about the pain issues.  I do agree with you that chemo seems to exacerbate any hurt or injury that you had prior.

Hugs and prayers, Lou Ann

MoeKay
Posts: 270
Joined: Feb 2004

Hi Susan,

I just searched my test results file and can't believe I was actually able to find the report after all these years!  I finished radiation for EC on August 3, 1999.  I knew it was a couple of months later that I began experiencing lower back pain.  The pain continued for several weeks and the longer it lasted, the more I became convinced that I must have metastases to my lower spine.  I think the more stressed out I got, the worse the pain became.  I'm looking at my CT report dated November 9, 1999, and the report was normal.  Due to the nature of my complaints, the report's Impression section states "bone window settings were utilized to evaluate the sacral region and no abnormalities were noted."  I seem to recall that the pain starting to lessen in intensity not too long after I had the CT.  

In my opinion, I wasn't back to a relatively normal state physically and emotionally for at least two years after completing treatment, but the first year was really the worst.   Keeping my fingers crossed that your MRI tomorrow is likewise completely normal!!

Merry Christmas and don't stop planning that trip to Italy!!

Maureen

 

janaes
Posts: 800
Joined: May 2016

Cheese Queen, Just wanted to let you know i had really bad back pain that deceloped dering chemo.  I accually had some after surgery too.  It started getting better after surgery but then during chemo it got really bad.  I could walk but sure didnt want to because of the pain.  My chemo doctor did nothing about my complaints and neither did my gynocoligist.  I went and saw my GP and she ordered a MRI for my whole back.  It was interesting because they didnt find anything seriouly wrong and at first i was a bit upset about that but I will tell you just knowing that there was nothing serioulsy wrong gave me hope to just start small and do little exersizes and work on better posture and with time my back started feeling better.  Today ( three months after chemo my back pain is almost gone.  About 90% better.  I would check it out so you can get some answers.

Love, Janae

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I did and I still do.  After a Ct scan, an MRI and an E-Ray. My orthopedist decided it was an SI joint problem.  My Physical therApis agreed that it was.  I have had 3 injections and one round of physical therapy and it still hurts.  It does seem to be getting a little better.  My left shoulder also started hurting and that did turn out to be cancer related.  The tumor in my neck is pressing on nerves that run across my shoulder and down my arm.  For right now I am back on pain meds for that pain and it is helping my back, too.  Really didn't want to do that, but I needed a break from the pain.

i have tried ice, and a TENs machine, but the thing that does seem to help somewhat is heat.  I hope you get some relief soon.

Hugs and prayers, Lou Ann

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Lou Ann, did that essential oils mixture your pastor's wife made help with the pain at all?  I've never used essential oils for pain relief, but I find the idea fascinating.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I was a big wussy Sunday and missed church. It was below 0 with the wind blowing,  I am very interested in it though and hope to connect this weekend.  Lou Ann

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

I'm so sorry to hear about the back pain. I remember my oncologist asking if I had any back pain and I said no. I sort of wondered about why he asked that. Meanwhile my knee pain seems to be a lot worse. I had considered asking the oncologist if having knee replacement now would be ok as I'm NED, but I didn't. I'm a wuss because I just couldn't mentally deal with surgery, hospital and months of rehab. Maybe next late summer if I'm still NED and my hubby is doing ok.

CheeseQueen57's picture
CheeseQueen57
Posts: 919
Joined: Feb 2016

Merry Christmas!  Had pelvic  MRI this morning. They don't think it's a bone reoccurrence ( but can't be sure without a biopsy) but I have an insufficiency fracture of the right sacral ala, possibly due to radiation. Let the games begin!  I see orthopedic surgeon on January 6. 

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

Thank God they don't think it's a reoccurrence. Hopefully the orthopeodist  help relieve the pain.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

But that doesn't help the hurting at all.  More waiting.  Hopefully the orthopedic surgeon can help you.  I agree that I that radiation can cause a lot of the lower back problems we are having.  I know I have a stress fracture and some other kind of fracture, but they are on the other side from where my pain is.

Have a Merry Christmas

Hugs and prayer, Lou Ann

CheeseQueen57's picture
CheeseQueen57
Posts: 919
Joined: Feb 2016

So I saw the orthopedic surgeon today. He attributed the fracture to osteoporosis and said I need to see my endocrinologist and get on some treatment for that because I'm at 50% risk for another fracture. He didn't think the fracture was a result of radiation and he didn't think it was a reoccurrence. My advice to everyone is ha e a talk with you doctor about the state of your bones. Everything we've been through (steroids, chemo, radiation, meds, etc) destroys our bones. I'm just really concerned about "dead jaw", a rare condition caused by some osteoporosis meds. I'll guess I'll see what my endo says. 

I've got yet another UTI and I've asked for a urology consult. I'm trying to accumulate as many specialists as possible!

janaes
Posts: 800
Joined: May 2016

CQ, I wish you luck as you go forward with your ostioprosis.  It was discovered that I had ostioprosis after done with my chemo.  I have always had thin bones and dont know if i had it before treatment but in my heart i felt the chemo did something.  Those side effect to the ostioprosis meds scared me too. I got my self on a support group for that.  I cant remember where on-line the group was.  I am taking Alendronate 70mg right now.  My doctor really incouraged me to take it.  So far no side effects.  I watched it very carefully for sure. 

Nellasing
Posts: 529
Joined: Oct 2016

Isn't it so interesting that they don't want to admit that these treatments do a number on our bodies?   I will have to look up "dead jaw" I've never heard of it.  Is there anything they can do to help with the pain now? 

I'm so sorry you are suffering with another UTI- Glad you are going after a urology consult- maybe they can give you some answers? 

It's so good that you share these things- ie specialists... not many people understand that your gyn/onc is only there for you for the Cancer- they do not want to deal with you on any of the "effects" of the treatments but I know for me I had no idea where to even turn for some of these issues - let alone know that they came from the treatments- it kinda makes you think you are losing your mind or being a hypochondriac but seeing other people actually are having the same concerns helps you to get mobilized and get help- so THANK YOU and everyone else who shares!!!!

Prayers for you as you go forward- sure do hope you can come to a place of homeostasis.  (((HUGS)))

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Just wanted you to know I am praying for you.  You may be the winner of the most specialists award.  Hugs and prayers, Lou Ann

Just an UTI note.   Two times when I was in the ER, a PA came in with an antibiotic for an UTI only to have the doctor tell him I didn't need it as  most older ladies had low grade UTIs.  Wasn't sure that I like being classified as an older lady even though I was pushing 70 real had at the time.

MAbound
Posts: 1022
Joined: Jun 2016

Well, I think you're sending us all to look that one up!

Is there some reason why you are particularly worried about this happening to you when it's a "rare" condition? That seems like it means that it's unlikely to occur.

From what I've gleaned from a quick read, it sounds like the concern comes if you're taking drugs like Fosamax or need dental work that involves the jaw bone during chemo. You're done now, right? Hopefully, you really don't need to add another worry like this to the pile you already have! No point in "borrowing trouble" if you don't need to is my motto!

The worry about radiation induced osteoporosis has been one of my big worries too and a major reason I was trying to talk my way out of pelvic radiation before I finally agreed I really needed to have it. It's done now, so all we can do is deal with the aftermath as it crops up to smack us down. I've noticed my hips feel sore these days since radiation ended. Not terrible, but something new. I'm really hoping it gets better in time instead of worse. The battle just never seems like it's going to end, does it? 

 

 

CheeseQueen57's picture
CheeseQueen57
Posts: 919
Joined: Feb 2016

Fosomax stays in your body a long time. I was concerned about it when I was taking it years ago because I've had to have a decent amount of dental work (root canals, implants). And, of course, statistically, I have a good chance of needing chemo again (doctor says I'm keeping my port indefinitel!). Of course, I never thought I'd get cancer and need chemo but I'm glad I was off the Fosomax for years before this happened. It will be interesting what options my endo gives me. 

MoeKay
Posts: 270
Joined: Feb 2004

Have you had a recent DEXA scan to determine the current status of your bones?  I know you mentioned that you had osteopenia in the past, but do you know whether it has progressed to osteoporosis?  I wasn't aware that bone density could be determined by MRI, rather than DEXA. 

After I finished radiation in 1999, I had a normal DEXA, but my then primary prescribed Actonel.  His rationale was that I would probably start to lose bone density due to my hysterectomy and radiation.  I didn't take the drug because I thought it was not necessary.  That was before the osteonecrosis of the jaw and spontaneous femoral fracture issues became known.  I've had numerous DEXAs since then, and in one or two I had some slight osteopenia, which improved in more recent DEXAs after I increased my exercise level, calcium, and vitamin D.  This is after I was on prednisone for the better part of a year when I developed eosinophilic pneumonia in 2009.  I saw my primary yesterday and asked him when he thought I needed another DEXA, and he said that because my last one was quite good, I could wait three years. 

In about 2007 I developed hip and groin pain and had an x-ray which showed some osteoarthritis.  I ended up having a number of MRIs that showed what my then orthopedic surgeon (OS) said was a stress fracture of the acetabulum.  I was put on crutches for a number of weeks.  The MRIs improved and I was pain free for the next year or so.  Then the pain returned.  I went back and had more MRIs, which showed what my OS deemed to be a stress fracture of the hip.  I was put on crutches again for a number of weeks.  This time, the pain did not resolve after being on the crutches and/or several rounds of PT.  Ultimately, another OS said that I needed a hip replacement and that he didn't believe that I ever had a stress fracture.  He suspected that what was showing on the MRIs was a stress reaction to the hip arthritis.  I had a hip replacement at Rothman in 2011, and have been fine since.  I now exercise 5 or 6 days a week, including Zumba, step, weight-bearing exercise classes, and yoga. 

I guess the point of my long story is that I don't put a lot of faith in MRI findings as far as bone issues go.  Hopefully, your endocrinologist will order a DEXA, if you haven't recently had one.  Incidentally, I have a friend who is eleven years younger than me who has severe osteoporosis.  She went through menopause by the time she was 40 (she's now 58).  She was on Fosamax for a few years and it wasn't effective.  Her primary then prescribed Prolia, which is a once-every-six-month monoclonal antibody injection.  She's been on that for the better part of two years.  In the interim, she consulted an endocrinologist, who said she would have put my friend on Reclast, a once-a-year intravenous bisphosphonate, rather than Prolia.  However, the endo did not want to switch protocols until after my friend had finished two years of Prolia.  My friend recently had a DEXA scan which did not show any improvement in bone density from the Prolia, so I'm assuming her endo will be switching her to Reclast in the near future.  My friend has not experienced any side effects from any of the bone density drugs up to this point, although she does not have any dental problems.  I, on the other hand, am like you and have had root canals and implants, so I have the same concerns you do about these drugs. 

Good luck with the endocrinologist and urologist.  I know I had lots of specialists for a number of years after I completed EC treatment.  I've managed to significantly reduce the number of specialists over the years and I hope you can do the same!

MoeKay

CheeseQueen57's picture
CheeseQueen57
Posts: 919
Joined: Feb 2016

Thanks for the input MoeKay. A little history...I went through menopause at 39. So bone health has always been a concern. I was on hormone therapy for 5 years. Then discontinued that and started a variety of the bone meds. I remember being on Fosomax, Boniva, and Actinal. I've had multiple Dexas over the years, my last one December 2015 just before my cancer problems were Dx.  It showed some degree of osteopenia and significant changes since my last study. I was actually talking to my endo about options when got cancer DX. The orthopedic surgeon saod once you have a fracture, you have osteoporosis. 

CheeseQueen57's picture
CheeseQueen57
Posts: 919
Joined: Feb 2016

I have to admit, I've not really been good about regular weight bearing exercise over the years, and that's also probably contributed to the problem, with everything else. 

MAbound
Posts: 1022
Joined: Jun 2016

Thanks CQ and MoeKay for your posts about this; it certainly was not on my radar and I guess I'm still not understanding if having had cancer treatment puts us at higher risk for something like this if we do develop osteopenia or osteoporosis down the road and need to have it treated with one of the drugs you mentioned. I haven't had any implants, but I've had root canals and crowns. Guess I'm going to have to do some more learning about all of this. 

MoeKay
Posts: 270
Joined: Feb 2004

MA, I thought this fact sheet gives a pretty good overview of osteoporosis.  It provides a laundry list of risk factors for osteoporosis and includes some cancer treatments on the list:  https://www.womenshealth.gov/publications/our-publications/fact-sheet/osteoporosis.html.  

It looks like it might be a decent starting point for your research on the issue. 

MAbound
Posts: 1022
Joined: Jun 2016

Thanks Moekay for the link. Very interesting, but of course it's making me think of more questions than it answers. I've been reading some other interesting publications and getting the sense that the risk goes up when you need dental work while taking these drugs, especially while also being treated for bone metastasis specifically. That's the link with cancer treatments. The big thing is to be very vigilant about dental care to prevent gingivitis, cavities, abcesses, etc. so that dental work wouldn't be needed while being treated with drugs for osteoporosis with or without bone metastasis at the same time. Prolia also seems to be the drug that is the greater culprit for causing osteonecrosis followed by Reclast. Still looking into if there's lingering risk when not in active treatment and for how long after its done. Hope that helps put CQ at ease a bit now that she's done with frontline now, too. 

MAbound
Posts: 1022
Joined: Jun 2016

http://www.uptodate.com/contents/medication-related-osteonecrosis-of-the-jaw-in-patients-with-cancer?topicKey=ONC%2F96863&elapsedTimeMs=4&view=print&displayedView=full#

 

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