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Horrific leg weakness and leg pain - anything help?
I've been on a Taxol/Avastin protocol for many months now. I recently ask my oncologist to give me a week off every month b/c the side effects of treatment 4 x a month were getting worse and worse. He agreed and we will see what the results are. The biggest and most problematic side effect is the excruciating thigh pain and weakness. I can now take only about 10 steps then I have to sit down and rest my legs. It's very debilitating as you can imagine. I am open to all and any ideas that may have helped you - I'm a think outside the box person. Also I rarely take painkillers so if you found one that actually helped with your leg pain please share. You never know, you might mention something I haven't tried yet that might actually help. I've tried acupuncture, massage, a compression leg circulation thing, Claritin (only a week or so into that), resting my legs in an elevated position, custom compression socks (helps a little). If you tried a supplement formula that helped let me know and anything else that helped. Thanks.
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@BellaDonna1959 Sounds like you are having a rough time of it with this leg pain. What does your team suggest? If they feel ceasing treatment will help and is safe for you to do so, it may be an option for you. Keep us posted on that.
I know you have listed a lot of things you have tried. In my head, I need a little more info. Like how recently have you tried any of these and in what combinations and times a week etc? If you were trying them one after another it may have not proved fruitful but perhaps finding the right combo for right now for you may be the solution. Are you up to explaining a little further so that we can possibly help you a little more? What meds are you dead set against and maybe why (that is your comfort level)? What meds have you tried or are open to trying as well.....all of it may help to give you better information to go back to your team with or food for thought. What is your activity level like on a daily basis as well. If you are in pain, I am imagining not much but I could be way off base. Let us know when you can so we can assist you with this better.
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@Strongwoman Thanks for the reply. I am not against pain killers - I just don't usually take them unless I'm at the end of my rope pain-wise. Open to trying them - if anyone has suggestions to ask my oncologist for them I will. I have done the compression thing several times a week- I put my legs in a sleeve and it inflates and deflates pumping the blood. I started it after a shallow clot formed in the summer in my calf (2023). I wear the compression socks most days and have for months now. The acupuncture I just started. Not much activity daily - because to walk much hurts. I do some couch exercises like ankle pumping back and forth and lifting light weights. I reached out to a physio clinic and will see them in 3 weeks. I hope they can help me safely exercise in some way to increase the bone and muscle strength in my legs and hopefully offer pain reduction and stretching. My insurance is very generous with P.T. thank goodness. I am just fed up with the lack of ability from the side-effects. The cancer causes me belly pain but that comes and goes - the leg pain is relentless.0
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@BellaDonna1959 I think you stated it well "I am just fed up with the lack of ability from the side effects". It can get most of us down, the chronic component to some side effects and pain. It is wearing on a body physically, mentally and emotionally.
I would probably say that a pain med may not be in order in your case (could be wrong), and that possibly a medication to assist with nerve pain might be considered. That is something to discuss with your doctor/team.
I would encourage you to persevere with mobility. I would do what you can (whether that be 10 steps or 5) and do it a couple times a day faithfully for a week or two. I would then start to build from there and increase slightly the steps or time (whichever you are going off of). Motion will help with the things you are concerned with mobility, muscle, strength and circulation. It will also give you a base to discuss and go from with physio (PT). The pumping action of the mechanical sleeve can assist with circulation and any exercises that you are doing are considered passive and good to stay with until you receive further instruction. The acupuncture, you will have to give it some time. From my experience they (acupuncturists) usually have a formula or guideline they work from....for example...a sprained wrist should usually take 5 treatments per se....Then they would know if they were on the right track OR to change up what they were doing. Do your best to hang in there until you get to that physio appt. 3 wks seems far away and I am sure it will pass by quickly.
Try an Epsom salt bath or even possibly a CBD bath bomb and see if you get any relief.
Hope some of this helps and if you have any more questions, ask.....as a community we will do our best to assist you with this.
Try some mindfulness meditation to see if you can be mindful and re-direct some of those feelings and find a place of calm. It will take practice if you don't meditate currently, be patient and go with the process.
Healing thoughts being sent your way. 2 -
@BellaDonna1959 I have also had some leg pain, although it doesn’t sound as severe as yours. I do experience some cramping in my thighs. My magnesium level is low, and I wonder if this may be the partial cause of the leg pain? I just finished 6 rounds of Taxel/Carboplatin in December, and am now only receiving Avastin every 21 days. I started taking magnesium supplements. I have also started using my recumbent bike in the lowest setting for 5 minutes. Walking does hurt, but I find that the less I do, the worse I feel. Perhaps you may also wish to look into cold water therapy? A friend of mine has started it for her very sore feet and finds it helpful. I’d be curious as to what your doctor and physiotherapist think about cold water therapy.
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@HorseGirl Thanks for the reply. I do take magnesium supplements but I've ordered a new brand because the one I take now is running out - maybe this new one will be more effective. I will ask about the cold water therapy.1
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@BellaDonna1959 How are you doing with things? Any resolution or relief yet? Your PT appt should be coming up soon, yes?0
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Just an update and thanks for all the suggestions. I am now taking Claritin daily and up to 6 extra strength Tylenol and it is helping quite a bit - but not consistently. Some days are better than others. My Physical Therapist is working on my core first but she knows I'm mostly interested in strengthening my thighs so I'm anxious to get to that stage. There has been some improvement and relief thank goodness. Still looking for more solutions and more permanent ones hopefully.1
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Nice to hear things are working out with your PT and that things are progressing along @BellaDonna1959
It sounds like you are happy with the results thus far and who you are working with. That is an important piece when it comes to getting better. I wish you continued success. 0 -
@BellaDonna1959 I feel you when it comes to leg weakness. I’m glad to hear that you are having some success with PT. I’m gradually getting stronger in my legs, but it’s definitely been a slow process.
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@HorseGirl Thanks for your post. I am happy to report that there has been some improvement. The magic combination for me seems to be 300 mg Pregabalin 2 times a day plus Claritin once a day plus XS Tylenol as needed. I would say that my leg pain has reduced 50% or so - I can take more steps and feel less pain and less heavy. I'm not back to normal but I suffer less. The tingling in my fingers and toes is down about 80% and I often feel more capable of using my fingers without dropping things. So things are better. I hope all of you suffering will find the answers too.
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Glad to see you found a magic combo for yourself @BellaDonna1959 Whatever works that allows you to function better is the key.
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I wonder why the thighs are so impacted, it seems to be a common side effect. I was adverse to taking anything until it got bad enough. I’ve been advised not to wait for the pain before taking Tylenol. Ask about an alternating cycle of Tylenol - ibuprofen every 4 hrs. The oncology nurses had lots of suggestions but each person is unique and what is safe for one may not be for you. I find Voltaren helpful but short lasting. I hope you find the combination that works for you.
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@belladonna1959 ive been doing carbotaxol since january…going into my 12th round coming up in a few weeks…i also used to get really bad leg pains…the one thing i started doing was i started taking the claritin they said would help like 4-5 days before chemo so it was already in my system and id keep taking it until the pain was at a 2 (maybe 3-4 days after chemo), i found that actually helped it go from an 8 pain to a 5.5 right away…and then they also started giving me IV mangesium since my levels have been extremely low my last few rounds and the pain and my come up have actually become a bit quicker? my doctor also said that slowing down the infusion (because i had another reaction after my 9th round, so i had to get it desenstitized) could have helped the pain not be as extreme as before.
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I've been taking daily Claritin for several months now and it has helped so much. I do have good magnesium levels at the moment. Thanks for your input - glad you also found relief.
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Glad you found some relief and have a clearer plan going forward. Empowered is how one may feel.
As for me, taking it one day at a time both diet wise and mentally/emotionally has helped. Today is my Hospice Day which is always nice. Had a great day with my sister yesterday and we found her grandkids some used clothing at a New to You store. So that was fun. We were able to send them home with my nephew yesterday and she was already trying them on……giving like a fashion show. So cute. Now we asked what they need for winter so we can start looking for that and get them prepared for the fall/winter season too.. Today my friend is coming for a visit after Hospice which will be nice. I have a tooth fairy man for her for her son and a couple of books and rocks which he collects. He will be over the moon. :) Now I have to go look for a couple of things before they come. My son said that at the Retirement Home he works at that they have a Respiratory Break out so have to wear masks again. He gets is but it is something different to be wearing masks again after such a large break again. Well off for now. Time to get ready and move along in my day ladies.
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