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Joint pain

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It has been just over a year since my last chemotherapy treatment and I have been experiencing joint pain that seems to be getting worse not better.  I walk everyday and do Pilates and yoga a few time a week but some days I can’t do anything without pain.  Has anyone else experienced this or is it just me ?

Comments

  • Flowergirl
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    Hello @MollyM... sorry to hear you are experiencing this recent difficulty. So hard to determine and perhaps best to have a mention with your DR team as you indicate it seems worse not better. Hoping for the best for you....I found that those side effects from chemo can come and go as well as linger or get more bothersome by other issues as well.
  • jen_k
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    Last time I had chemo (paclitaxel) two weeks ago, I had this crazy foot pain. It was if my inner bone/nerves were made of an ice- fire melting zinginess. It lasted 2 - 4 hrs most evenings for a few days that chemo.  Helped by warm bean bag texture to feet. Then it was gone. Came back once again this week. Hope it doesn’t come back!!
  • I finished chemo in July 2016 and still have some numbness in my left heel. Occasionally will throb a little, but otherwise not particularly bothersome. I did have restless legs as well as leg pain during chemo. Heating pads and heat rub ointment helped. Let your doctor know what you experienced.

  • Jule_P
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    Hi Molly. I definitely got joint pain after chemo in 2011 and again this time. It went away after a year or two last time. Keep moving! Using RMT, yoga, heat therapy, acupuncture also worked. 
  • HorseGirl
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    I had 6 rounds of Carboplatin/Paclitaxel along with Avastin (Sept-December 2023). Now I’m just on Avastin every 3 weeks since January 2024. The joint pain is crazy! The stiffness/pain in my hands, feet, knees, lower back and hips are causing mobility issues. Walking hurts! Thinking of asking my oncologist for some pain meds. NSAIDS are not helping at all. Has anyone here had better luck with dexamethasone or some other prescription pain reliever?

  • Strongwoman
    Strongwoman Moderator
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    @HorseGirl I am sorry to hear you are experiencing this type of pain. I am going to tag both @MaryCatherine and @Petra as they have both posted before on Avastin and the same type of pain you are experiencing. They may be able to assist with things that have been tried or asked of their team to help with this. I would definitely go back to your team to explain your symptoms to see if they have anything advice or meds to help. An anti-inflammatory or possibly better pain med may be in order???? Document how mobile you are, how long the pain lasts, type of pain (acute/sharp or chronic/dull) and how it is affecting you in your daily life. Those keys will all help when you speak with your team. I hope some of this helps and perhaps the other two gals may have some helpful tips in the meantime.

    Take care

  • HorseGirl
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    @Strongwoman thanks so much for your reply. Some days are diamonds, and some days are coal. Super stiff this morning, and was attending my grandson’s hockey tournament so I actually took 5mg of Dexamethasone. Has helped considerably. Not something that I’d take on a regular basis, but as I had to drive an hour from home, figured hydromorphone might impact my ability to operate a motor vehicle. Decided to wear my abdominal support band to manage my incision area that has a few small hernias. Feeling okay now! Was trying Tylenol and naproxen previously and it has NOT worked one little bit! Will consult with my oncologist and ask about the Dexamethasone or other alternatives. I have used Dexamethasone to treat severe inflammatory issues with my horses with good success (veterinarian prescribed). The stuff I took today was left over from chemotherapy. ☺️

  • Petra
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    Hello @HorseGirl I don't have much to offer in the way of suggestions for pain relief, but I did want to let you know that I too experienced significant joint pain on Avastin. I had 3 rounds of neo-adjuvant chemo, then debulking surgery and then began receiving Avastin every 3 weeks along with the 6 rounds of chemo after surgery. After chemo ended, I continued on with Avastin for a total of 17 rounds, and was put on Olaparib as well.

    I began experiencing the joint pain during chemo and Avastin, prior to the addition of Olaparib, but it seemed to get worse once I started on Olaparib.

    The pain came on quite suddenly and was quite severe. It started in one shoulder - it was almost like having a frozen shoulder - and then moved to my hands, my feet, my neck and my hips/pelvis/lower back. Every morning I was so stiff and sore that it was hard to get out of bed, and walking was intensely painful because every joint in my feet was sore. My achilles tendons were inflamed as well, and tender to the touch. My finger joints were stiff and sore in the mornings, but they eased up after I flexed them around a bit. My neck was so stiff that I had to turn my whole body to look around. I couldn't shoulder check in the car because I couldn't turn my neck that far. I found that I was most stiff and sore after I had been sitting for any length of time, and that movement made me less sore, but even being less sore I was still hobbling around.

    My oncologist didn't think the joint pain was related to any of the drugs. Her opinion was that it was most likely menopause related joint pain. She said that there are estrogen receptors in our joints, and that the sudden drop in estrogen levels after the surgical menopause was probably causing the pain.

    I trust her opinion, but was hoping that at least some of the joint pain was a side effect of the drugs, because I didn't love the idea of living the rest of my life with that kind of pain, and thankfully, I have indeed had a slow and steady reduction in joint pain since I went off Avastin at the end of February.

    It's been a gradual process, but I'm definitely experiencing less stiffness and soreness. Yesterday I woke up able to move my finger joints without pain for the first time since the joint pain started.

    I didn't take anything special for the pain. Just Tylenol Arthritis once in a while. So I don't have anything to offer in that regard. I just wanted to let you know that you're not alone, and that there is hope that the pain will diminish once you are off Avastin.

    Best of luck, hang in there….

  • Strongwoman
    Strongwoman Moderator
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    @Petra I find it so sad that many Docs fall back to "surgically induced menopause" as an answer to symptoms being felt by many of us. I feel that by reading your post that it had way more to do with the medication than menopause and thusly why you are now feeling a reduction in symptoms. Thank you for sharing your experience with @HorseGirl I know she will appreciate the feedback and reassurance. How are you doing these days with your own journey?

  • Strongwoman
    Strongwoman Moderator
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    @HorseGirl Well if it works for now that is great. Be careful as I think it is hard on the stomach but ask when you see your Oncologist. So nice that you are able to go and watch your Grandson's hockey tournament. Those benches are not very forgiving either. A nice bath when you get home would be nice too! Might help those aching joints and if you can find some at a local cannabis shop, you could put a CBD bath bomb in it to help too!

    Have a good night and chat soon!

  • Petra
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    @Strongwoman I have to say that I was disappointed by my oncologist's take on my joint pain. It seemed like a pat answer that didn't take into account the possibility that my symptoms were in any way drug induced. The longer that I was on Avastin the more certain I was that it was causing at least some of the pain, because the pain would get worse in the middle of each 3 week cycle. I'm happy but not too surprised that the pain is easing up now that I'm off the Avastin.

    It'll be a year at the end of May since I finished front line chemo, and so far so good. I haven't had any scans since prior to surgery, but my CA-125 numbers are staying stable around 10, and my other blood work looks good, so I'm taking that as NED, at least for now. My hair has grown back into a cute little pixie cut, my joint pain is diminishing, and I am for the most part able to live life with almost pre-cancer levels of vigor and energy.

    It's been an emotional ride, that's for sure, and I was surprised at the intensity of feelings that emerged once I was finished front line treatment. I guess it makes sense to feel all the feelings AFTER the crisis is dealt with. I went through a few months feeling a lot of anger and irritability and that really surprised me. I gave myself lots of space to feel those feelings, and was open about how I felt, and got a lot of support and validation, and without me doing anything other than that, those feelings seem to have subsided. The hardest part now is living with the unknown. It was such an unexpected diagnosis, and it's taken a while to fully and truly integrate the fact that it actually happened to me - funny I know, given that I was going through chemo and all, but the brain sure is good at being in denial - "yes, I know I have cancer but it doesn't really seem really true that I do…" - and now the job seems to be to integrate and work with the possibility of a shorter life span than I had expected.

    I was absolutely terrified when I was first diagnosed, and the thought of recurrence is still scary, but I have a more nuanced understanding of the nature of the disease than I did at the beginning, and I realize that even if I do have a recurrence, I will have time to process it.

    This forum has been enormously helpful to me in that I have been able to read about the experiences of others. It has given me a road map of sorts, and I have found comfort in that. We're all different, our bodies all react differently, research and drug development is ongoing, and the map constantly changes, so I can't know what my exact story will be, but I do have a clearer idea of what the different paths look like, and I find that very helpful.

    I thank you and all contributors to this forum from the bottom of my heart for your willingness to share your experiences. Please know how much it means to me, and I am sure to countless others.

    Much respect and love,

    Petra

  • HorseGirl
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    @Petra so many things that you have said ring 100% true for me…anger and irritation at being some hobbling old woman! Grrr! I wasn’t sure if it was the Avastin or the fact that I’m 59 and overweight (which doesn’t help the joints), so I started to pay more attention. Definitely the Bevacizumab is causing this in my opinion. As for menopause, that happened for me in my early 40s (super early)… and I’ve got the chin hairs to prove it! So I’m not buying the estrogen joint pain explanation. Definitely has joint stiffness’s prior to treatment, but this is on another levels. The good news is some days are diamonds, some days are coal. So if I do anything one day, like ride my horse or do stuff in the garden the next day, I am totally trashed. My hands are swollen. My feet are swollen. I took it easy today so tomorrow, I ride.!!!! Hurrah!!! And then soak in the tub and lie down because this is a roller coaster. I was NED in January, and my CA-125 is steady at 12. Avastin until July and then another CT scan. Love, love, love connecting with you and @Strongwoman. It makes all the difference!

  • Strongwoman
    Strongwoman Moderator
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    @Petra I am happy to hear how your journey is going. NED and tumour marker levels low = GREAT NEWS!!!! Yes, it is funny how our bodies adapt physically to what we go through and then watching how long it takes our brains to catch up and process. I sometimes think it can handle only so much at once. It sounds like by validating your feelings and allowing them to come forward that you were able to grieve and move on. For this is what this whole process is, a grieving process of some sort. It will take time to adjust and believe you are NED and what that means with your ability to do things again. Be patient with yourself and plan away…….plans can always be cancelled. Please stay in touch during your NED status while enjoying your new norm. Summer will be a new adventure for you this year. ENJOY it all!!!!

    Hey @HorseGirl how are you doing these days? How has the pain been? Are you waiting to hook up with your team or calling in before an appt? Whatever your choice is, I hope the pain subsides and becomes more manageable. Do what you can when you feel well and then relax and heal on the down days. One day at a time is all we can do. Make plans but know they can change and that's okay too.

    Take care both of you!💕

  • HorseGirl
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    Hey @Strongwoman I’m feeling pretty good these days. As previously mentioned, I took 5 mg of the dexamethasone on Saturday. Wow! It really worked well. Felt pretty good into Sunday and even Monday. Joint pain has subsided considerably for now. Did some gardening on Monday, so today was pyjama day. Going to try riding this week and see how it goes.

  • Strongwoman
    Strongwoman Moderator
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    Good for you! Glad the Dex lasted that long for you as well which should decrease the amount of times you take it. Gardening, never ending work. I was walking around yesterday showing my friend what we had done and said…looks like I have some weeding to do again. Especially since we are getting mulch this weekend and if it isn't done, hubby will just dump the mulch over it. Love the help but wish he was more patient with it as I don't move as quick as before. I want to get it done today if at all possible since I am going for a pedi/mani with a friend tomorrow, Priorities eh? I just hate doing my feet and it bothers me to be bent over for too long due to the tumour locations. Plus an excuse as to why I need to get them done! ;)

    Horse back riding. So nice, we have a horse farm next to us and I often see them out riding. I would love to go but if the riding lawn mower bothers my insides, I think the riding would be the same. They are nosy little things though, those horses. We come out to do anything near them and they are like "hey what are you doing". I often talk to them if they are close enough as well. So nice. So glad you get to go riding still even if it is periodically. Anything to bring that sense of normalcy back to your life @HorseGirl

    Well, enjoy your day! Keep on trying things intermittently, document how you feel before, during and after and then see if it changes over prolonged period of time. Chat again soon.

  • HorseGirl
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    Ah yes! Mulch, need to get at that today.

  • Strongwoman
    Strongwoman Moderator
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    Ya, apparently ours arrives today. Hubby says to me last night, "better get weeding" I replied back "it will get done when it gets done" I have a mani/pedi this morning with a gf and that trumps weeding any day. Besides which I can only work so long out there anyways. Told him this morning two beds are already prepared and he can start on them. Silly men! Like he can't weed himself. It will look nice when it is done though.

  • HorseGirl
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    @Strongwoman how are you doing? Did you ever get those weeds done or did hubby break down and do them? I planted Zinnias and wasn’t sure if they’d break through the mulch…but they did! Speaking of weeding, I can’t keep on top of them! I had an Avastin treatment last week and have been pushing myself through the joint pain doing gardening/weed whacking…today I was a stiff, sore coach potato. Everyone tells me to “rest”, but I pace myself. I want to do stuff as long as I’m able. One more Avastin treatment in 2 weeks and then a CT scan and CA-125 test. Trying to control my anxiety about it all. Some times I pretend that this isn’t happening, and that I’ll be fine. I saw a woman at the grocery store yesterday who didn’t recognize me… my hair is short and gray, not long and brown/blond as before. I felt kinda bummed out about it. At least I have hair for now, until the next chemo round cometh. Hopefully it’s not happening soon. I get twinges in my right side, and feel fearful, but I just try to ignore it. What choice is there?

  • Strongwoman
    Strongwoman Moderator
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    @HorseGirl Sounds like you are doing what you want when you want which is great. No matter how you are feeling. Yes, hubby did all the weeding and put the mulch down as well. I have hardly had to weed this year and it has been great.

    Sounds like you are working through your treatment regime and will be coming closer to knowing what next steps are soon enough. It often feels like we don't have choices and that we do because we can and because it is what we know to do. When our bodies start to fail us that is when we have difficulties. Difficulties accepting that it is what it is and that it may be our new norm. I don't like it when I tire easily compared to before. It makes it hard to accept for sure. Our ever morphing bodies, whether it be hair or what we look like physically. For those that don't come around very often to know the changes and why well to H#$# with them. Don't explain yourself. Carry on with your head held high and let them try to figure out what is wrong and why. We do enough explaining to last us a lifetime. You are doing amazing. Keep being you and do what you can when you can. You are an inspiration to us all,

  • HorseGirl
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    @Strongwoman I am trying to be realistic about this disease. Although currently NED, I realize that will likely change at some point. For now, I just keep on going because I still can. I haven’t been riding due to heat, bugs, and body aches, but today was cooler so I pushed through! My hands hurt as I brushed the dried mud off my horse, and saddled up, but in the end it was worth it! A much-needed hot Epsom salt bath helped alleviate the aches and pains afterwards. Today, the ladies at the hardware store asked me how I was doing and I told them the details. They saw me last fall when I was feeling pretty sh*tty! It was heartwarming to see the smiles on their faces as I bounced in with my short, sassy grey hair! Lol Last fall I’d struggle in and lean on the counter while they gathered up what I needed, and they’d carry it to my car. Today, when they asked if I needed them to carry a big bag of BBQ briquettes to the car, it was great to say “Thanks! I’ve got this”, as I hoisted them on my shoulder and strode out. It’s the little things that are satisfying. I was so scared this time last year, and sometimes I still worry, but I feel that I’ve been given a gift…to appreciate the here and now, and celebrate what I can do instead of worrying about what I can’t. You are always in my thoughts @Strongwoman.❤️

  • Strongwoman
    Strongwoman Moderator
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    That is a great way to look at things @HorseGirl and glad you can look at it in that way. We don't know what tomorrow brings for any of us. Best to live in the here and now for today type of model. It's all we have. I am thankful every day to be able to do the things I do an function on my own as well. Small things to be grateful for