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Hip and bone stiffness

I finished treatment (Herceptin) in September (one year mark). I’m on letrozole. Had my post treatment scans and they were good. I told my onc I was having hip pain and it’s really bad and overall bone aches. She said she didn’t see anything on the scans to make an appt with the ortho. So I see her tmrw. It’s every day. I too used to work out constantly and thought it would help with the pain but the hip pain stopped the workout a couple months ago. if I sit for any period of time I have to stand for a minute before I can take a step. once I’m walking it seems to better but laying down or sitting is not comfortable. Arthritis has been tossed around and bursitis. Someone mentioned how they were sick of being in pain…that’s how I feel. It just consumes my life. I want to get out and enjoy being cancer free but the pain prevents me from wanting to do anything. Hopefully the ortho will figure it out. The onc didn’t seem to concerned about it. I can’t take advil Tylenol aleve forever!
take care – thanks for listening :)

  • Post #1
  • Mon Nov 12, 2018
Hi, I'm Sandra G L.

I have had hip, knee, and occasional other joint and bone pain since I completed chemo almost 2 years ago… My shoulders and ribs also bother me quite frequently… All tests and scans since then have come back showing no cancer and I, like you, would like to just get back to my active life with little or no pain… I was an avid hiker, dancer, and loved to ride my bike… Now even if my hikes are much shorter than pre-cancer, I am so sore and stiff the next day or so, I can hardly get out of my chair… If I dance to only one or two songs, I can barely walk the next day because of knee and hip pain… I have found I can tolerate bike rides of up to 5 miles, as long as I stop and take a break every once in a while… My hips and knees seem to do ok with the pedaling motion, without becoming too sore or stiff afterwards… I try to stay on mostly level ground, as uphill is more difficult… If I don’t overdue the bike riding, I find it actually loosens up my joints and lessens the pain for a while… The only thing that seems to help me with the pain is Ibuprofen and I try not to take it unless I have to.. I take 2 Tylenol PM about 30 minutes before I go to bed and that seems to take the edge off enough for me to fall asleep… I also work jigsaw puzzles, listen to very peaceful calming music, read, and sometimes meditate to help distract my mind from thinking about the pain and sometimes I actually “forget” about it as I am absorbed in these activities.

I am absolutely certain all of this is a result of the chemo drugs and the Neulasta shots I received after each chemo, as this is when I first started noticing the pain and it was quite extreme at times. It would especially kick in a couple days after the Neulasta shots and be quite horrible for up to 5 days… Sometimes my ribs would hurt so bad, I could barely breathe and I ended up in the ER one night because I thought I was having a heart attack… I am thankful it is not like that anymore.

I don’t know if any of this has been of any help, but want you to know “I hear you”…

  • Post #2
  • Tue Nov 13, 2018
Hi, I'm Paula R.

I have been on letrozole since 2013. My debilitating joint pain almost stopped after 12 months (and it wasn’t a particularly gradual reduction in pain) and was gone after 18 months. The first year I lived on ibuprofen to function and I considered stopping the drug. It was almost like a light switch being turned off when my body decided to accept it. I tried to stay active and I’m sure that helped. I’m now glad I persevered to have a reduced chance of recurrence. Joint pain is a recognized side effect …. but hopefully you will be one of those that has a reduction in pain after a while.

  • Post #3
  • Sat Nov 17, 2018
I'm Diane, and I'm a survivor of Stage 3a Breast Cancer

I completely understand everyone’s complaints of joint and bone pain! I had 3a breast cancer. Did everything the oncologist and surgeon suggested. Chemo, neulasta , 33 rounds of radiation, partial mastectomy, Herceptin for a year, started on letrozol, changed to anastrozol because of joint pain, that was horrific. Back to letrozol, no better, back to anastrozol. My husband wakes me because I cry in my sleep. I read a post on here from a woman that fought her insurance company for the actual drug Arimidex rather than generic anastrozol. I did the same 3 weeks ago. It has seemed to kind of ease the stiffness a bit….I pray for better results. I’ve been going to an ortho because I can barely walk. He ordered steroids and Celebrex. I hate meds. Never even took an aspirin before this but… Shoulders, hips, fingers. Everything just aches. My arch dropped in my foot. He wants to do surgery but I would be down for 4 months non weight bearing. Enough is enough. I used to power walk 5 miles a day and do yoga daily. I went from 135 lbs to 185. A few months ago I signed up for a yoga class because I became afraid to excercise alone anymore. I had to leave classes because the muscles in my back locked up so bad I couldn’t breathe. I felt I was in a vice. I can’t even stand on my toes to reach things from a high cabinet. I move constantly because when I sit I stiffen up. So with all of my bitching being said, I take a hot shower every morning and bathe in epsom salt Every night which really does help. At least 2 lbs and throw in lavender essential oil to calm the bitter bitch that has reared her ugly head in my body. I stopped the steroids and Celebrex. It gives me heart palpitations and makes moodiness worse. I take align, gummy multi, calcium, d3 and I tried omega 3 pills but gag. So now I just eat the fish and try to eat right. Oh, I tried a vitamin that contains hyaluronic acid. I asked my pharmacist if that was OK and she said yes. Thankfully I did some research myself and found out that hyaluronic acid taken internally is food for cancer. So note to self, although we do not want wrinkles, want our hair and nails to grow back pretty, we still do not want cancer so stay the hell away from hyaluronic acid. . Sometimes you just can’t help how crappy you feel. Bengay is one of my best friends now too. Thank God I have a stupid sick sense of humor that my husband can appreciate because I would have divorced myself when I started the 5 year drug. I felt better through chemo but I’m happy I’m able to be a pain in the ass mom to my kids. I pray I can continue to be for quite some time

  • Post #4
  • Mon Nov 19, 2018

Gosh – it’s amazing how there are so many going thru similar crap. i went to the ortho and she said it was bursitis. the xrays were fine. she gave me a cortisone shot which has been amazing and anti inflammatory/pain meds. I’m starting the anti-inflammatory “diet” which is really just the right way to eat. no white food (flour bread sugar etc) nothing we don’t already know. it’s just doing it! I’ve gained so much weight since treatment. i have no motivation to workout. My mom is here for 3 wks and she’s making me walk 2xs a day – haha so hopefully that will get me motivated and back in the gym. i don’t take any supplements. I’m just not sure they work – i used to believe in them but when i was sick i kept hearing there is no research that verifies they make a difference – so i just don’t know. there’s research for stuff and research against stuff – it’s endless. my PLAN is to get back to a clean diet – mostly plant based and exercise! Research does show that works :) I need to try to give myself a break and try to understand the damage my body has sustained. I’m grateful to be alive and I hope each of you find some relief – whatever it is that works for you. I think we gotta just keep being strong and keep fighting to get our life back. it’ll never be the same life but God spared us for a reason and dammit…I’m gonna keep fighting! God Bless you all :)

  • Post #5
  • Mon Nov 19, 2018
Hi, I'm Anna D J.

It is very frustrating to tell my drs. about my joint and bone pain and they act like they have never heard of this happening before! I am taking Exemestane 25 mg (Generic for Aromasin) to lower estrogen to prevent the cancer from coming back. All of these types of meds (I’ve tried several of them) have side effects.

  • Post #6
  • Mon Nov 19, 2018
I'm Sandra L S., and I'm a survivor of Stage 1 Breast Cancer

I found the bone and joint pain horrific with letrozole switched to an Astro ole. It’s been a tad over a year on it and not more than minor improvement over the letrozole. Why doctors don’t acknowledge or prewar us of this awful side effect makes no sense to me! Now I have also developed Osteoporosis from them. Not sure if I can do five years! Argh

  • Post #7
  • Wed Nov 21, 2018
Hi, I'm Kim J R.

I’ve been taking Letrozole for the past 21/2 years. I also have lots of back pain. People don’t seem to understand. I’ve worked for Knox County Schools since 1998. I have been removed from my job since April and placed in another position I will be taking Letrozole for another 2 years. I’m happy to be alive and also to have a job. I’m blessed with an understanding husband.

  • Post #8
  • Sun Nov 25, 2018
Hi, I'm Frances N L.

I am grateful to be alive, but resentful that my doctors were not forthcoming and truthful about the side effects of the medications. They mentioned joint trouble as a possibility, but certainly did not give me any statistics nor mention the potential severity. I feel they had a medical responsibility to give me enough information to make my own informed decision about whether I wanted to invest 5 years of my life and end up so debilitated I can hardly walk. I started on letrazole and was switched to Exemestane. I completed the medications 6 months ago. My doctor became indignant when I told him that if I had been given factual information into the potential side effects, I might not have taken the medications. At 79, I think that was a choice I should have been given. As a registered nurse, I know physicians could be more forthright in giving us choices. I question whether they are looking at survival statistics rather than real patient outcomes and thus their clinic success rates for competitive marketing.

  • Post #9
  • Sun Nov 25, 2018
Hi, I'm Judith F.

I hear all of you. I was diagnosed in 2012 with Stage 2A, grade 3 with 1 lymph node involved. Had a lumpectomy and Pet scan showed everything was clean. Only was able to tolerate 3 of 6 rounds of chemo but did the full year of Herceptin and did all of my radiation.I was given the generic Arimidex to take and found that I had worse hot flashes that I did when I went through menopause and terrible hip pain. I thought about it and decided to buy a pill cutter and cut that small 1 mg pill right in half. That helped so much in that the hot flashes subsided and the pain was reduced greatly. My onco was not very happy to hear that and could not understand since it was only 1 mg. I offered to share it with her and she what she thought about the side effects. She was not too happy with that comment but made my sister smile. I continued for the five years only to then find out that they now want me to go 10 years. I opted out. Some doctors are more understanding than others and you must remember that they are only human—- well sometimes I think they are robots that are following a set protocol and don’t know what to do when you question them or their procedures.Someone did say to try Vitamin E to help with the hot flashes and I found that it did help.I wish I had a magic wand and could give you an answer that would help everyone but we are each different with our type and size of our cancer that there is no one answer that works for all. I also had an issue with stomach cramps for about 6 months and neither my family doctor, my onco or the ER doctor could figure out was wrong. It took some time but found it was a combination of my Arimidex and my cholesterol medicine I was taking.Switched both but had to go back to Arimidex when the Femora nearly knocked me to the floor with joint pain but everything is good now. I am coming up on my 7 year anniversary but just dealing with the normal stuff a 60 year old woman deals with. So hang in there and if you don’t like what your doctor tells you, ask questions and keep reaching out and you will find new ideas. Some will work and some will not but keep your head up as it will get better.

  • Post #10
  • Sun Nov 25, 2018

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