My Experience with Breast Cancer and Its Aftermath

Hi there - so sorry to hear this - I certainly can recognise what you mention above here too - a year post full ALND clearance here and six months out from 25 days radiation - I find exactly the same - debilitating cramps - legs and feet often at night - which I think may be low magnesium - so a spray might help (obviously check with your team) lymphodema (again here ) i find only shifts with exercising - not easy when you're so whacked even brushing your teeth feels effortsome - but the over arm physio does really help - I've made myself a little exercise routine here that even if it takes me all day to do helps to do - but just wanted to send very best wishes and please know you are NOT alone and what you are experiencing is very real - really is 

Hi Nabs,  I had full node clearance and radiotherapy 17 years ago. I did have to wear a sleeve but eventually it seemed to sort it self out. I’m not sure how but I was working full time and teaching kept my right arm in constant use. I never carried anything heavy in that hand and physio for me was added in to PE. Warm ups I gradually seemed to need my sleeve less and less. It is still quite early days for you but moving and massage are your best friend. 
Be kind to yourself. contact the Lymphedema team they will help. 

Hi, sorry this is a bit of a saga…..foot and ankle cramps are what I’ve been left with (for years!) after my first brush with bc in 2018, I only had surgery (mx with implant recon) and Letrozole for 3 years, tamoxifen for 2. Those cramps gradually came on during that time, and continued though lessened gradually in the year when the hormone therapy ceased. But then the beast recurred, behind my implant! Surgery May 2024, it had crept into one lymph node.  And yes, last September (so a year ago now) I began the hormone busters (Exemestane this time, Onco felt tamoxifen had ‘let me down’) again following full removal of implant and bc which had begun to spread to chest wall. I’ve had 3 weeks of radiotherapy this time too. So yes, the foot and ankle pain, stiffness and cramps has returned with a vengeance, often disturbing my sleep rhythm from around 3 am onwards daily.

i noticed it was not quite as bad if I ensured I walked (but not to excess) and drank plenty of water; but was still waking me loads. I then tried magnesium capsules, over about a week, not really much difference. Next thing to try was tonic with quinine (not all tonics have it in their mix); quite a difference but not complete. I was due a meds review with GP so asked him. He felt quinine tablets were worth a try; I checked with the hospitals senior pharmacist as I’m also on Abemaciclib. She said to go for it; upshot is that the daily night cramps have significantly eased in number and severity so I’m getting some better sleep at last. 

Hope that might help someone?

hugs xxx

I have a similar story, just one side though. Diagnosed in May 24. HER2+ so chemotherapy , lumpectomy in November followd by radiotherapy in January. I have had joint pain, rib pain, breast lymphoedema, cramps,  peripheral neuropathy and fatigue. I contacted the late effects team and they have been brilliant with physical and moral support. Do you have a late effects team in your hospital, it would be worth asking.

I've had Quinine Sulphate tablets from my GP which really helped with cramps.

Good luck.

Thank you for sharing your experience. I take magnesium but not tried the spray.  I will give it a go. 

Bless you and thanknyou. I saw Lymphedema team  a few days ago. I am now making sure I keep on top of massaging through out the day. 

Bless you. I will check about the late effects team. 

Bless you and thank you, very helpful.  I was on Tamoxifen for 3 years, and since April I have been taking Letrozole.  OMG the cramps and spasms have intensified. I am taking Amitriptyline but still get cramps and spasms. Fatigue is worse now. I feel tired all the time.  I have an appointment with GP and will ask about quinine.

Have you could considered changing your hormone blocker? I was offered anstrasole as a alternative.

Worth trying the tonic before you speak to GP about quinine as it’s only because the tonic started to work for me over a week or two that I decided to ask. I used to have one of those little cans each evening! 

Hugs xxx