Thanks @melclarity for your expertise! No wonder my calf muscles felt so awful and tight...like I'd run a marathon. And I wonder why I was never given an explanation by the chemo oncs despite constantly complaining when we went through our 'side effects meetings'. Well, actually, I have dedicated my energy divested in wondering about why I wasn't told certain things during the 'chemo process' to finding answers elsewhere, otherwise I get 'irritated' and that doesn't help me. I will certainly try the magnesium and Bs now that the chemo is on it's way out of my system post Xmas. C too. I am seeing my rad onc this week and will ask if I can start on these vitamins with rad or do I have to wait. I also want to go back on my turmeric...from Doug English Turmeric Life in Qld. I like the turmeric bars with ginger.
@poodlejules - hmmm, you have had everything I have. Not to be a scaremonger, but I had the deep cramping in my left leg after my first chemo. I was woken with it every morning. I told the chemo oncs and they said it was from chemo. I also told them I had dull chest pain and a dry cough. This continued for 9 weeks. Every meeting I was told it was part of chemo. When hospitalised with febrile neutropenia, at a different hospital that was closer to my home, the young reg. didn't like the feel of my leg and pain in chest. She ordered tests and the next day they said I had a DVT in the cramping leg and a PE in my right lung. They said that part of the clot breaks off from the leg and travels to the lung. If it is small enough it goes through you "Y" bend lol to either side. If it's too big, it gets stuck and you have a bigger problem! Thank you young Dr! I was put on fragmin, an injectable anticoagulant for 6 months. I do it myself, am. and pm. Apparently it doesn't dissolve the PE but it stops it from getting bigger. I still have questions about the PE. Apparently it leaves scarring. I was lucky the young Dr found it, as it is potentially life threatening. I could have been complaining till the cows came home - or didn't! The scan for the DVT is called a doppler ultrasound and very easy...just lubricant on leg and scanner moved from top of leg to bottom. You can hear your veins ☺I did start getting cramping in the other leg but the doppler utrasound showed no DVT. Maybe just needed magnesium. So it's good to take side effects seriously and this has taught me to be more assertive.xxx
Herceptin and pain in the legs, especially at night.
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viking1
Member Posts: 288 ✭
Hi, I finished my chemo last Monday (3 rounds of FEC and 3 of Docetaxol 3 weeks apart) and my Herceptin injections were started with the Docetaxol, so I am now awaiting my 4th sub cut injection (I need 17 all up and they are 3 weeks apart too). With chemo 5 I took panadol, 2 tabs 4x a day for pain relief mostly for scar tissue pain from my total axillary clearance and a bit of bone pain in my legs in the first week after chemo. Since my last chemo I had some really sore bone pain in my legs at night, keeping me awake as I thrashed around. I tried the panadol, magnesium salts in the bath at 11pm, and codeine 30mg. I also have a couple of temgesic tabs in case the pain worsens. They seem to work best but I'm scared of running out as I only was prescribed 7. Apart from that I have a sore throat, and everything tastes awful. Even icy poles! My left eye won't stop twitching. Do you think that once the chemo is out of my system I will have a better idea as to whether it is docetaxol causing the leg pain or herceptin? I was wondering if it is the herceptin, is the pain cumulative or should it wear off? Seems weird that it is largely at night when trying to sleep even tho I have been in bed in the day sometimes, just resting. Maybe I should stick to panadol in the day and temgesic at night if it gets too sore? I could literally get out of bed and pace in pain with this aches in my leg bones...is that anyone's experience? Ta xx
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Hi viking1 I had similar to you but 4 rounds AC & 4 Docetaxol with the hercepton starting with the dox and continuing after. Did not have eye twitching but had the very dry eyes / throat / skin etc Developed a really shit rash at end of hercepton. Had pretty crappy all ovr pain with the docs / hercepton, and a milder version continued all the way through hercepton - the leg pain at that stage was the worst - and as you said when you first went to bed is when it happened, for me it stopped when I warmed up so I went to great lengths to keep warm - and as I was sick of taking painkillers I did manage it with a heat pack / and the heater on at night. My onc said it wasn't the nercepton but the after effects of docetaxol - I disagree - It didn't stop till well after hercepton finished (I'm sorry can't remember how long). Once it was under control I realized I also had shoulder/ arm pain as well, but the legs overrid that pain for a while. My arms / shoulders still give me a bit of crap.1
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It could be chemo but restless legs can also indicate deficiencies, such as low iron, low Vitamin D. So its definetly worth discussing eith tbe oncologist. Neuropathy can cause lots of weird pain. My hips used to really give me a hard time. It did settle and I had no issues on herceptin regarding pain.1
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Thanks guys. The magnesium sounds the go as I am taking plenty of VitD - the naturopath at the chemist suggested 5000 IU on chemo plus Calcium. Interestingly, my oncologist said don't bother taking it (on my first visit). On my last, she said she couldn't understand why I had no nail problems and my hair was growing back on docetaxol. She was the chemo onc who told me not to bother drinking lots of water as she didn't, only in tea and coffee! Meanwhile my chemo nurses were keen on me drinking my usual 1-2L a day. So I am exploring what you are trying and have found to be useful as sometimes the info from the 'top' is maybe textbook but not experience based. Found chemo nurses best as they see everything. I wondered about the eye twitch! Thought I was just tired! But it came on suddenly and won't go. Since chemo started my nose continues to run like a tap. But stops when I have been in ICU with neutropenia. I will put my bolster between my legs @Joannie! Thank you! I also read something from @melclarity re her exercise physio saying chemo tightens the muscle sheath ... is that right Mel? That would account for muscular aches and pains. Think the bad pain I have either from docetaxol or herceptin feels more like my bones are aching, not muscles. Heat does help with sitting in hot bath waist deep so bloody lymphoedema isn't set off in right arm! Oh dear, I sometimes feel I am just bits and pieces cobbled together! xxx0
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Hey @viking1 I had FEC 4 times 3 weekly and then Paclitaxel (Taxol), it caused havoc the longer I was on it. I had muscle, nerve and bone pain, all of it. The first night I think after infusion I had restless legs guaranteed then it would settle down. I had twitching, eyes from time to time and my face! The pain you are experiencing sounds normal, because I was drug sensitive I used to on a bad day take 2 panadol osteo and 2 ibuprofen together. I'd suggest as you said take something that gets you through the day and something for night. It does dissipate once treatment stops thank goodness!
Yes I mentioned that chemo shrinks the sheath over the muscles so causes pain and tightening so it requires stretching exercises and it helps alot! I'm 2.5 yrs post treatment now and this is still a problem, but it causes cramping in my back as a result not so much the muscle pain.
Magnesium is good for muscle pain, but I actually take it as its much more than that, it services over 300 enzymes on a cell level, so after being through chemo, it helps the body rejuvenate at a cell level. Vit D very important too, and C for absorption.
I didn't take any supplements through Chemo as it was difficult to know if any interrupted the chemo. The other thing I found too was that chemo was eradicating the entire system so figured what I would put in would be depleted. Most don't recommend supplements through chemo for this reason.
Once finished is when I saw a Kinesiologist which was amazing and put me onto Magnesium, from there I saw a Naturopath with the same recommendations. I see neither now LOL, have kicked butt and finish with my Exercise Physiologist this week. I am stronger than I have ever been...taken 2.5yrs but am happy as i had to learn to walk again from treatment.
Hang in there, take what meds you have to, to get through the treatment, it will all stop but unfortunately residual stuff will remain for sometime after. It all takes time and thats what they don't tell you is the recovery. so be kind and gentle with you. Hugs Melinda xo1 -
Hi @viking1 I only have 2 rounds of herceptin to go . I get the twitchy eyes and runny nose, and it literally changes the sound of my voice (deep and croaky) for about 4 days after I have the infusion. I've also had trouble with deep calf pain in one of my legs, so much so that I thought I had a DVT! Went to the docs and it turned out to be leg cramp which I'd never experienced before and felt different to foot cramps which I get when I exercise . I was taking magnesium so upped the dose and started drinking tonic water (get the diet one as the regular is full of sugar) as the quinine helps with cramps too.It went away so something worked
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Hi viking1, Magesium and Vit B complex helped with leg cramps. Like you, wasn't sure which drug was responsible. However finished herceptin 3 weeks ago and still get restless legs, especially at night. Think Ill go back onto the magnesium. I didn't know about the tonic water so ill try that too.1
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Geez@viking1 you've been through the ringer. And thanks,I'll keep an eye on things , my mind went straight to a DVT as I'd had a plane trip to Perth then a long drive of 5 hours , then the pain, mainly at night......better to be safe than sorry.....good luck with everything and try to have a great Christmas!!1
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You have a great Chrissy too! I'm in Perth...you must be in Albany lol. I didn't even think of DVT ... you spotted the possibility, well done! I think the whole experience is going to turn us into lay nurses! Pity I didn't know then what I know now. I'm going to turn into the worst patient ever out of self preservation!0
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I'm in Melbourne,had a short break in Perth but then flew home and did the 5 hour drive here a couple of days later. And yes I agree, I'm sure my doc rolls her eyes when she sees me walk in !1