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What is causing my muscle aches and joint pains?
I was diagnosed stage 4B HGSOC in October 2022, have been through front line treatment, finished chemo in May 2023, now on Lynparza (Olaparib) and Avastin (Bevacizumab) for maintenance.
I've been experiencing joint stiffness and muscle aches since starting on maintenance. The degree of pain fluctuates from day to day, some days worse, some days better. I wake up every morning with very stiff and sore fingers, this usually resolves within a few minutes. Other than that, the most painful areas are shoulders, neck, and pelvis/lower back. I have also been experiencing pain in my feet bones (!) after walking. Sometimes it's hard to tell if it's muscular pain or joint pain. If I sit for any length of time, I experience extreme stiffness when I get up and move around - picture me hobbling around bent over - which eases up after a few minutes.
My oncologist initially thought it was most likely a side effect of Olaparib, and that it might be also be a side effect of the suddenly lowered estrogen levels from surgical menopause.
I'm wondering if there are others out there who have experienced joint and muscle pain with Olaparib or Avastin or the combo, and whether the pain diminished after stopping the drugs.
I\m really hoping this isn't a symptom of menopause, and that this discomfort will be time-limited.
Any and all comments/suggestions/advice/thoughts/feedback appreciated!
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@Petra It looks like you were left hanging with this one. I know from other posts there have been some commonalities regarding your symptoms and others. Have you tried typing either drug into the search bar to see what comes up on any threads? It is so tough when we don't feel well and when those symptoms affect our daily lives. Muscle/joint pain is hard and can be very sore and uncomfortable.
Due to my own surgery, if I have been sitting for any length of time, when I go to get up, I am hunched over for a bit until I walk around more. I find I can't lay on the floor on my belly without discomfort.
I regularly have muscle and joint pain and am sadly learning to live with it. I have had to learn to compartmentalize symptoms and categorize them as severe, moderate and mild with how they affect my quality of life.
Hoping you get some answers soon and that the symptoms either calm down or go away all together.
Take care0 -
Thanks for the reply @Strongwoman.
Things could be a lot worse, so I'm grateful for that.
It'll be interesting to see if things change once I'm no longer on bevacizumab and then when I go off olaparib.0 -
@Petra My fingers are crossed that as time goes on after coming off both drugs that your body will adapt and hopefully for the better.
Hope you have a nice weekend.0 -
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Hi @Petra It has been quite some time since you posted last and thought that I should check in with you. The holidays and lead up to it, can be so busy let alone any treatment one is going through and how one is feeling. So, how is this January finding you? Are you in treatment? If so, what and how are you feeling. How are you filling your days these days? I am so happy to be able to see the snow.....from the inside today....as it looks brighter even though it is cold out. I am thankful I found some lined leggings as I have been living in them these past few days. Find them warmer than track pants. Enough of me, let me know how you are, when you can as I think of you often. Take care....
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Hi @Strongwoman, thanks for checking in
I'm doing really well, and so grateful for that.
I finished frontline treatment 8 months ago, am on maintenance meds (olaparib and bevacizumab) and so far so good! Bloodwork looks great, CA 125 staying in the 10-12 range, and not much in the way of side effects other than occasional fatigue and the joint pains - which are quite manageable.
It's been an intense and remarkable time, this whole ovarian cancer journey.
I don't post on the forum, but I do still follow the discussions, as I feel so emotionally connected with what everyone is going through. I have no idea what will happen for me, whether I will have a recurrence or not, and if I do, what treatments may be available, and I am profoundly grateful that the forum and the support exists, should I find myself back in treatment.
Thank you for everything that you do 0 -
That is amazing @Petra I am so happy for you! Sounds like the maintenance meds are working and am thankful for that. It's okay that you don't post often and glad you follow along from time to time. If you don't mind dropping me a line now and then to let me know how you are, I would really appreciate it. I would like to know.
Your welcome, the pleasure is mine and fills me with so much purpose!
Take care 0 -
As I struggle with joint pain and stiffness, I find myself scrolling through these posts. @Petra I had Bevacizumab concurrently with chemo x6 last fall, and have been solely on it x11 since January 2024. I swear as time marches on it’s making me so tired and sore (joint and muscle soreness). My BP has gone up too, so I plan to call my gynaecologist/oncologist tomorrow about what’s going on. Maybe I’ll be able to skip my 12th and final one for now. Have an appt scheduled with GP for blood pressure issues. Annoying.
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I hear you on how tiring it is to be feeling ongoing joint and muscle soreness. It really does take a mental and emotional toll along with the physical 😓
While I was on both Bevacizumab and Olaparib (after front-line chemo) I wasn't sure what was causing the joint and muscle pain, but now that I've been off Beva for 4 months, I'm pretty sure it was the Beva. I am happy to report that the stiffness and soreness gradually eased and now I'm pretty much pain free in my joints, except for very transient stiffness first thing in the morning. Sounds like you're coming to the end of your beva infusions, and I hope you find that your stiffness improves over time as well. I would love to hear an update from you on that.
My BP elevated significantly on Beva as well, and I had to be on an antihypertensive, and thankfully my BP went down to normal almost immediately after my last infusion, so I'm off those meds which is great.
Fatigue has also improved, and I'm just generally feeling physically way better. Fingers crossed you have the same experience!!
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@Petra I appreciate hearing back from you so quickly. Glad to hear that you’re feeling physically better after completing Beva. Since my debulking surgery on August 2, 2023 it’s just been an infusion of some type every 3 weeks for the last year, and it’s getting OLD. 🙃 I’m hopeful that it’s likely the Beva causing these side effects. I have one more treatment to go and then a CT scan in September, so I’m feeling more optimistic about my BP and energy becoming more normal. Very rarely I take a dexamethasone pill left over from chemotherapy, and it works wonders! I have used dexamethasone for my horses in certain circumstances primarily related to airway issues. It’s a very powerful steroid, so not something that one might want to use regularly, but when I’m really unable to function it’s quite a miracle worker! Probably shouldn’t post this here lol.
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I'm completely with you on how annoying and tiresome it was to have to go for bloodwork and infusions every 3 weeks, and I am here to say how amazing it felt to be able to stop that. I am now on only the daily oral medication, and having bloodwork every 3 months. Clinic visits are now just bloodwork and a brief visit with my oncologist. My beva infusions ended in mid Feb, and I'm about 14, 15 months since ending front line treatment, coming up to 2 years since diagnosis, on olaparib, so far NED and slowly starting to feel physically well again.
The emotional/psychological piece is a whole other story - this whole thing as I am sure you are deeply familiar has been a huge disruption for me, for my sense of self, for my ability to plan for the future, all that stuff. Now that I'm feeling physically more my self again, I'm finding myself grappling more with the complicated mix of emotions that seem to be emerging after the tunnel vision focus on survival has lessened. All good, very, VERY happy to be doing as well as I am, super grateful for the treatment I have received, glad to be here to be grappling with anything!
I wish you all the best as you continue on the post front-line journey 💞
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@HorseGirl Sounds like you received some reassuring advice from @Petra regarding what you are feeling joint wise. With one more treatment to go, it sounds like symptoms may start to ease off for you gradually as they did for @Petra That will be wonderful for you, indeed.
As @Petra stated, the emotional/psychological piece to it all is another story and is something we all work on differently as individuals. Unfortunately there is no magic one piece fits all for us on that front. Time and patience is usually what it takes and a whole lot of soul searching. It is great when one is deemed NED and even that comes with some elation but some pull back of thinking "is this real". One day at a time and you will get there. Every day we wake up is a new day and a new adventure for us all. We have no idea what our bodies are going to do to us but we can try our best to fill the day with things we want to do and with the people we want in our lives as we find our way back to what is to become our new "norm". Hang in there. It does come. Be patient. 🤗
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Thanks for your unfailing encouragement and support @Strongwoman. I popped a Dexamethasone a few days ago, and it’s really helped me through this rough patch. I just spent the night at our cabin with my 12 year old grandson and two of his friends! Being able to share my love of the outdoors is my “legacy” of making memories with him. Note: They are in the tent…I got the cabin to myself! Ha ha
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Great pic! Looks like everyone is having a great time @HorseGirl and what you needed too! I think it is awesome your Legacy includes making memories with your grandson. This is the stuff they don't forget and stays in their hearts forever!💖
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