Pain management

Oh I forgot to add, I am getting Zolafonic acid infusion twice a year for 3 years and Letrozole once a day, thanks again

Hi Berniechef, I am like you and I still have post mastectomy pain and it seems like it can last for years. I had my op in july 2022 with full node clearance and I am still in horrible pain. I have pregablin, nortryptiline and I have tried capsaicin cream which I can't get at the moment and I haven't had much relief at all. I read this article recently and it seems like there are a lot of woman in pain post surgery. https://www.cancer.org/cancer/managing-cancer/side-effects/pain/post-mastectomy-pain-syndrome.html. I am also on Letrozole which is giving me severe joint pain in my knees. I wish that I could give you something that would make the pain a little easier. Jxxx

Hi Berniechef

Am like you I finished my radiotherapy in feb 2023 and been in terrible pain in my left breast and unable to move my arm as also had lymph node removed . Am kn pregabalin 3 times a day and Amitriptyline 3 at nightAlso I use Deracool which stops the burning pain this seems to be working.I have got fluid in my breast so having physio with a lymphatic consultant this has helping. I Also have zometa infusion every 6 months And Letrozole every day

hope this h  we lps xx

Thank you for your reply, it's a total bummer, been trying to ignore it but recently it's been getting worse. My husband has to help me turn over at night when I've totally stiffened up, it feels as if my ribs are broken but there are not. Going back to the doctor to see if they can suggest something. It just doesn't feel right, sometimes I wish they had just taken the bloody breast away as it is all lumps and bumps and I don't know if it's just the after effect of the radio or something else, only time and my next mammogram will tell. I hate the weight gain with the Letrozole and the chemo tummy but hiho I'm still here to moan about it, hahaha (satcastic laugh) just got to get on with it and hope for the best. The numb toes drive me crazy at times, feels like when you were a kid and got chillblanes from the cold fire. Stay strong, live life and always be cool, xxx

Cool name... Cupcake, everyone likes sweet things. I hope things get better for us all, stay strong, positive vibes to all, xxx

Hi hun it is so hard having to deal with continual pain after everything we have been through. Th doctor will be able to prescribe you something to help with the nerve pain although I am on pregablin and it is not really helping. Like you at night I can hardly move as I am so stiff and sore but I am still using my v shaped pillow which does help. The weight gain because of the letrozole has been getting me down too and I am not able to exercise much as I really need to get both knees replaced. I'm not sure as to whether the neuropathy is due to the chemo or letrozole or both. I really hope they can get you sorted with something to make you more comfortable. I remember the chillblains when I was younger too. We are showing our age. Lol. Jxxx

Thank you, I was just having a right good old moan about it-getting it off my chest-no pun intended hahaha, going to doc's today so fingers crossed, another tablet another side effect. As the average white band sing 'let's go around again' hiho such is life, sending positive vibes, xxx

Hi Berniechief, janicol and cupcake 06, sorry to hear you are all having pain issues or neuropathy issues. I have only had neuropathy and to help I was given lidocaine plasters and Doxepin cream. Both have helped a lot. Apparently Doxepin does come in tablet form too but I have been able to manage with just the cream version. The lidocaine plasters I apply at night, they are leave on for 12 hours and remove for 12 hours. The Doxepin cream is applied 3 times a day. 
My neuropathy is still in my feet but it has improved. Mine was chemo induced but at the moment I have Phesgo too until February next year and this also can cause neuropathy. This is perhaps why I am not completely free of it. 
I do find at night me feet try to find the cold spots in bed as I find this works better for me. During the day I opt for flip flops as I find them more comfortable that my feet being in shoes/trainers. 
I hope you all manage to find something that will give you some relief as I know how down one can get.

Wishing you all the best, hugs from cuffcake x x x x x

Hi, just back from doc's, they have upped my dose of Gavapectin to 1x3 daily iif this doesn't work then 2x3 daily, we will have to wait and see, tablet lottery time, suck it and see, fingers crossed

Hi Berniechef, brilliant I hope that helps and gives you some relief

Hugs from cuffcake x x x x x