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Neuropathy vs muscle aches post chemo
I am day 8 post my first chemo treatment (Paclitaxel and Carboplatin). I am stage 3 high grade serous carcinoma and prior to chemo had total debulking surgery (midline laparotomy, total hysterectomy, bilateral salpingo-oophorectomy and some resection around a few lymph nodes). Three days post chemo I had some minor tingling in my toes and fingers however the worst symptom is 'constriction' in both my calves and a bit in the wrist on my left hand. That pain has made it difficult to walk. I spoke with Oncology Nurse who asked if I had any swelling, heat or redness in hands/feet. I do not. I was told to monitor and update my Dr. for my next pre-chemo meeting.
I'm trying to determine if I have neuropathy OR is it just weird muscle cramping? It's hard sometimes to separate these side effects.
Seeking input from others who have experienced similar side effects. With thanks in advance. This is a learning process!
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Always navigating, aren't we @Alwayslearning ?
Trying to determine what this pain or discomfort is and is related to this or that. It can be exhausting at times and frustrating.
You may have a bit of both, neuropathy and swelling. Our bodies react to what is put in them and sometimes it is instant and other times can be delayed. Does any type of action/exercise help to alleviate the pain/discomfort? I would encourage you to 'move' your body even if it is painful or hurts. Not to a point that it is excruciating but may be uncomfortable. Inactivity will only worse symptoms. Try some short walks or range of motion exercises by rotating feet/hands in a circle. You could try heat/cold compresses to see if that helps. If you don't already, grab a notebook from the dollar store and start writing down how you are feeling and what you did and/or ate in a day to keep track of it. This is helpful when you go to your appt because of the brain fog that comes and that we sometimes can't recall exactly the details we need to.
This journey is definitely a learning process. When you go to your appt, if they have any tips/tricks, share them here. It may help someone else too.
In the meantime, I hope that some of this subsides as the days go on and that you have a good discussion with your team in the near future.
Take care
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Thank you @Strongwoman. I have been documenting everything (by hour, what I did, what worked and what didn't etc.), so have lots of information I can share with my doctor. Other than elevating my feet, there doesn't seem to be anything that really alleviates the constriction pain in my calves. I've tried Lidocaine lotion (I read that somewhere as a possible option), but it doesn't really do anything. I appreciate the suggestion to keep moving. I'm trying to do that, even it if means pushing through some pain.
If I learn any new tips/tricks at my next appointment I will definitely share.
Thanks!1 -
Interesting that Lidocaine was an option for the leg pain. Have you tried a CBD product like a bath bomb or cream?
Yes, moving is very important. If you think about heart patients and the extensive surgery they have, well when you come in the next morning they are sitting in a chair and soon after that, they have them up and moving. Our bodies are meant to move and like it.
Hoping that some of this diminishes with time and does not stay.
Keep up the good work in the meantime. 2 -
@Alwayslearning have you tried massage on your calves? What about hot compresses or stretching? I too have experienced some really tight muscle cramps in my calves, and in other parts such as my hips, shoulders, neck and hands. I attribute this to inactivity so I’ve started to move more. At first, I was really sore, but now I’ve adjusted and can do more. I try and do most of my planned activities in the morning when I’m feeling the most rested. But as soon as I stop moving, I stiffen up. Usually after 3pm, I’ve had it. I lie out flat for a while and then take a hot bath to help unwind. Are you taking magnesium? Perhaps ask your doctor if that would possibly help?
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@Alwayslearning How is the leg pain now? Have you found anything that helps? How did you appt go and did you find out anything that you are ready to share?
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Hello @Strongwoman and @HorseGirl
I'm four days post chemo infusion #2. My feet have been tingling the entire time however so far so good no leg cramping (fingers crossed). I did put ice packs on my feet and hands during the Paclitaxol portion of the infusion time. My Gyn Onc and another one I know both said it's a 'myth' that the ice works however, they said do what works for you as there's no harm in it. So we shall see how the weeks unfold. In addition I was told to take B12 which I am. I asked about magnesium however my Doc warned me about side effects of that and said to try and get the nutrients through food as much as I can.
As recommended, I'm trying to keep moving as much as possible to keep the blood flowing. Oh, and we own a Theragun (not sure if people are familiar with those…really good for massaging muscles). I've used that a few times. May or may not help but not harming.
Will keep y'all posted. Stay well.
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Exactly! You need to try and do whatever you think will help and go from there. It is the only way you will know if it will help you @Alwayslearning Myth, heresay, whatever……try and experiment. You will find what works for you.
Glad to hear that you are finding ways to deal with the neuropathy and are moving. Remember our bodies are meant to move. It may be difficult at first but baby steps and patience. It will come. 💖
Yes, many of my former patients have purchased a Theragun. They aren't for everyone but those they work for and like is good. You may want to try a CBD bath bomb and see if that helps. Most of the cannabis stores have them. I know I have used them when I have been aching and generally uncomfortable and it helped a lot. Something to think about…..
Please keep us posted and so happy to see you engaged on the forum.
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@Alwayslearning good on you to keep moving! That was a challenge for me, but my strength is returning. Our individual experiences have similarities and differences, and I found it really helpful initially to consult with others through this forum. @Strongwoman was a wonderful support for me prior to my debulking surgery last August, and continues to support me if I’m feeling anxious. Are you also on Bevacizumab? If so, that may be contributing to the leg cramps? I had it with the chemo, and am still on it every 3 weeks. It can cause DVT. I found that the chemo effects really started to kick in hard for me around day 4 and then started to subside around days 8-9. I sometimes used a walker to steady me, even in the house! My oncologist questioned me about neuropathy at every visit, so she reduced the Paclitaxel by 20% once I mentioned the effects. I didn’t have any issues after that with numbness or tingling. It’s interesting that your oncologist didn’t recommend magnesium. By the time I reached #5-6 chemotherapy, my magnesium levels were very low and my doctor recommended supplements. In fact, every time I see her she asks me if I’m taking magnesium!
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@HorseGirl I am not on Bevacizumab. I did forget to mention that my Paclitaxel and Carboplatin were both reduced by 10% from 1st infusion in light of the PN. My magnesium levels are good so likely why she wasn't concerned.
I will tell you one story though..my Neutrophils were 0.8, three days prior to my 2nd infusion. I had to do bloodwork the morning of the infusion. If they were not at 1.0 or higher, there would have been a delay of a week and blood retest. I asked if there was anything I could do physically to increase them e.g., increase protein intake etc. Sadly the answer was no. One of my husband's relatives who had personal experience in this area participated in a laughter & music therapy session as a way of improving Neutrophil counts. While the literature was mixed on results, she saw a dramatic rise in Neutrophils. So between my first blood draw and my 'day of', I watched a lot of 'belly laugh' comedy shows and listened to podcasts that made me laugh. The morning of my infusion, my Neutrophil count was 4.8!!! That's a HUGE increase over 3 days. One just never knows the power that some things can have on our general well being.
Stay strong everyone and thanks for sharing the learnings!
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@Alwayslearning what an interesting story! Sounds like laughter truly was the best medicine in your case! Keep us posted on how you’re doing. ☺️
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So interesting @Alwayslearning thank you for sharing that. The power of laughter is probably much greater than we even can imagine. I had something similar when I was doing chemo. I went home and started taking more of my multi vitamin both day and night. The next day, it was up enough that I could have my treatment. I do like how you handled it better. Nothing better than some good belly laughs! 🤣
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