3 yrs and still suffering.

Knotknotme_55

Actually it's almost 3.5years now

After undergoing Mastectomy, 6 rounds Chemo and 6 weeks of Radiation-5 days a week. I feel worse every day. I am on Tamoxifen too. So tired of pain. The more I walk or move the worse the pain. Feels like marbles (broken marbles) in balls of my feet and muscle pain in calves and behind knees. Physio says it's CIPN (Chemo induced Peripheral Neuropathy)..My Dr just kept saying it's something you have to live with. This is 3 years after treatment I finally found out what it was called and basically nothing to do about it now. Had I known what it was when going through treatment Physio may have helped they say. Now it's experimental and hope for the best. Sometimes cramps so severe I literally fall if not near something to grab. I take Calcium, Magnesium, vitamin B, Omega 3, Potassium, Glucosamine, Vitamin D, (all separate pills so getting dosage according to pharmacist and Dr's). Scared to stop any in case it helps a little bit because pain is unbearable. Feels better if I lay on couch. This pain is constant and worse when walk, stand, sit too long. So needless to say it is worse all the time. I can't be a couch potato for rest of my life. The cure sure seems worse then the Cancer sometimes but I am glad to be alive. Any suggestions or ideas? Don't want sympathy (I feel sorry for myself enough to last me a life time. Lol) I try so hard to stay positive and happy. Some people that know me, know me well and know that it is not the real me anymore. That or I am just so used to faking a smile and how I feel that the real me is kinda a real fake now. I don't know anymore. I just go day by day.

Thanks.

pupmom

Please talk with your doctors.

Moderators

Hi Knotknotme-

We're so sorry to hear about your pain! And we certainly understand your feeling like you're not yourself. Have you checked out out forum on pain? There's some good info there, and tips from other members: https://community.breastcancer.org/forum/136.

We hope you find something that offers you relief!

The Mods

Bonnie7

Hi there,

So sorry to hear you are feeling so much pain! It's horrible after treatment that we don't get to feel 'normal' again.
I went through various supplements too, you may find a simple blood test will tell u if u are deficient in anyway (ie magnesium/potassium) to save u taking anything u don't really need (a one a day multi Vit tablet may suffice!) Cod liver oil (ingest) and magnesium oil (apply to aching muscles) may be worth a try too???? You can even try a bath of Epsom Salts once a week and get a little 'me' time at the same time!

I can relate and empathise with you, I am sure many girls on the site will too! Don't give up, keep looking for alternatives/options to ease yr pain.

Take care, hope this helps even just a little! Xx

VioletKali

I stopped(quit) chemo November of 2014. I made it through 4 rounds before deciding that my quality of life was far more important than quantity of life. I was dx just 3 weeks prior to my 32nd birthday, as a reference.

I too had a bilateral MX, and I attempted the AI's and Tamoxifen as part of continued treatment. I ultimately could not handle the continued pain, fatigue, and general feelings of unwellness that treatment brought. I discontinued ALL interventions and decided that I wanted to live my life in peace, and whatever happened would happen. I decided that I would not regret any decision I have made, even if it eventually leads to recurrence. I admit that even in that case chemo would not be something I would be willing to entertain.

That is *my* story. I cannot tell you to stop treatments and such, but I can tell you that I experienced reduced quality of life and I understand what it feels like.

yoga_girl

Knotknotme_55

Search: What is Peripheral Neuropathy; or select the link below for quality of life options

https://community.breastcancer.org/forum/136/topics/844633?page=2#idx_45

badger

((knotknotme55)) that is a gentle hug. Welcome to BCO, the best club you never wanted to join.

I started active treatment in 2010 so am seven years out. Had bilateral mastectomy but no reconstruction, and six rounds of chemo but no radiation. Five years of tamox and two years of anastrozole with three more to go. IDK if it's treatment or age but I get those wicked foot & leg cramps and know how it feels. They were bad at first but have lessened with time. My footwear of choice is running shoes.

There's a lot of good advice on these boards and I hope you find some relief. Best wishes!