Painful legs post breast cancer

hi 

well done on getting through that lot, I did surgery, chemo and Herceptin in 2015 > 2016.

I feel, looking back, there was a few things the team glossed over when spelling out the benefits of chemo etc. The wretched tiredness, skin problems, toilet issues, relationship crises, family trauma ... I could go on.

Chemo strips everything out of you, I watched my vitamin and mineral levels decline to practically nothing over the six months treatment, with potassium bumping along the bottom for the final 6 weeks, that in itself caused problems with close motor control, which I only realised when I couldn't pick a small bar of chocolate off the table, I had to slide it to the edge and drop it into the other hand, then wrestle with the wrapper. 

The NHS do have pages dedicated but don't cover deficiencies only overdose, I sent them a note to see if they'd fix it.

https://www.nhs.uk/conditions/vitamins-and-minerals/vitamin-e/

they still don't, how annoying 

Vitamin deficiencies are tricky to pin down, we all know about scurvy and vitamin C but did you know lack of B vitamins can cause lips to crack? Vitamin D is useful for all sorts of skin replenishment but we get so little sun in the UK. Breakfast cereals are actually a good source of additional vitamins since you're not overloading your liver with bulking ingredients used in pills. We also used a vitamin D spray, that was quite good and easy to use. Attempting to address vitamin and mineral deficiency using diet alone is a full time job, or so seems it to me. I try and eat plenty of fresh vegetables, organic preferably and make sure you have nuts and seeds as well as beans and pulses, tricky for me because I don't like them, it's a chore to eat them. I used to hide stuff in porridge, that was useful. 

Obviously we do need to be vigilant to secondaries and I was given the briefest of explanations, just watch out for headaches, tummy ache, breathlessness and bone pain and any sign of any of these ought to be checked out. When is your next follow up appointment? I'm asking this knowing full well that I only had an annual mammogram but I was given an open access team to contact if I had any worries. I called in once, for a skin rash, and felt like I was overreacting the way they shrugged me off.

I'm not a medical professional but I'd put 50p on tamoxifen causing some of the issues, probably your hips, which are reasonably well documented and another 50p on you lacking something in your diet for the leg cramps.

Add to that weight and exercise, I try and walk 6000 steps per day but realised I needed to up that to 8000-10,000 if I wanted to lose the extra pounds I'd gained over the winter. Walking briskly gets the circulation going and allows the repair systems to work efficiently, resolving any joint and muscle issues.

Herceptin can also cause low moods but I didn't hear about that until I was on the last jab. 

When you say cramps in your legs which bit? My feet cramp up if I haven't been out walking, and that does feel like a circulation problem. I'd only had cramp in my calves before. I also get restless legs on flights which is a nightmare but doesn't stop me seeking the sunshine. 

Carolyn

xxx

Dear Carolyn

Thank you for your very helpful reply. Like you I am on annual mammograms which I don't feel are enough really. I have open access to the breast team but with the Covid, I haven't been able to get anyone to talk to.

The cramp starts in my toes and goes up my legs. It is so painful. Some times I get it in my groin which is weird.

I feel like we are not given enough support once we have finished treatment. They need to tell us that it takes years to get over the side effects. I feel that once you have completed your treatment, they don't want to know.

I get restless legs as well which again no one warned us about. I think the only way to find out the truth about post treatment, is to talk to groups like this.

Thank you once again and take care.

Regards

Caroline

I get the same from Tamoxifen. It was instant when I started taking it. I get stiff and achy and sore especially in the evening. I find yoga stretching every morning really helps. Keep moving, exercise also really helps!! I was quite fit before, so I'm finding this new me quite annoying and hard to accept.. I'm like an old lady at 48!! 

yoga

I'm going to have to give it a go, lots of people say it helps

 @gummybear1

hugs

Carolyn

xxxx

Hi Flowerhappy

Why does no one tell us about this side effect? They warn us about the hot flushes but not the painful joints. I know what you mean about being like any old lady, sometimes I am so stiff and sore, I have to shuffle.

I will definitely give yoga a try

Thank you and take carex

Hi Gummybear1,

Diagnosed with ca in 2018 and have had the works. Initially put on Tamoxifen, but now on 2we break ready for switch to Letrazole. On Monarch E clinical trial and at trial clinic they did say they were reluctant to swap me to Letrazole because incidence of joint pain is higher. Since starting Tamoxifen I have had terrible joint discomfort/pain esp in my hips and shoulders. Limbs are heavy if I do anything strenuous and at 51yrs old, I feel about 90. Combined with the general fatigue from Tamoxifen and abemaciclib, the trial drug, it is very difficult to cope with.

I have found that a daily walk, as brisk as possible, helps. I do now have heel pain and have shock absorbing insoles from podiatry. I am seen by a muscular skeletal physio at my local hosp. I was referred by my Macmillan physio who I was seeing as radiotherapy triggered an old shoulder injury and Tamoxifen triggered a pelvic problem from pregnancy 17yrs ago.

Just been told by the trial clinic that I can try glucosamine with chondroitin so been taking that for past week. Hoping that I get some help from that as find myself hobbling and stiff.  Have been on since Tamoxifen and have 6monthly IV bisphosphonates. 

Looking to take early I'll health retirement from my job as a hospital matron as there is no way I can manage that with the fatigue, joint pains and multiple other side effects. 

I think people assume that one the chemo is over, you get back to how it was, but we know that's often far from the case. Outwardly I probably look well with my hair growing back and weight getting back to normal etc, but it's a struggle.