Hi, im seeking some help. I had my surgery in 2020. Lumpectomy x 2 due to margins.
I have problems with chemo, peripheral neuropathy, and sadly it caused PF which i am being treated for with mycophenolate, i was on 40mg prednisilone but it was damaging my endocrin system it took almost 2 years to taper off.
The biphosphonates, caused my right femur to snap in two. I had a majot trauma and had surgery to screw and nail my femur, they said tight leg was going to do the same. They have pinned it now to ensure no trauma were it to break.
After having all of the above, and a few other unwanted symptoms, recurring UTIs. Fibrotic tissue on operated area restricts movement.
I have fought so hard, i love my family and try my best to achieve good health. Hide my pain.
The thing that is really really getting me is down for is that my skin is pouring with oil.
My surgery nurse said cera v. Wash and moisture. Ive been doing this. Ive used tea tree. Astringent. Just soap. It wont stop. It gathers behing my ears my chin and neck. And i wash my hair sometimes twice a day.
Also i have hair growing on my upper arms, across the right hand side of my tummy.
Which i never had before this year.
I have tried to research this.is it Leteozole. Which is hellish.
Is it any other meds.
Does it mean somewhere inside me has something wrong that its producing so much oil.
I feel dirty, smelly, and i am obsessed with being clean.
Can you as breast nurses offer advice, or ask if anyone else has had this.
I will be on letrozole until 2030 should God spare me. And mycophenolate for life to keep pulminory fibrosis dampened down.
While writing this ive had to clean my face twice, it actually stings my eyes.
Thank you for taking the time to read this. Its not a moan, im dealing with the hand i have been dealt, i just want to cope.
Just reading this I want to give you a hug - you have been through so much . I remember as a teenager I had very oily skin and severe acne right into my mid twenties . I’m thinking your problems must be a hormone imbalance particularly because of the hair growth ( so possibly Letrozole) and / or your body is out of balance due to have been on so many medications and having recently stopped some of them in which case it might improve on it’s own once it gets used to not being on steroids. If I was you my first priority would be to ask my GP for a Dermatology referral , by all means tell your treatment team as well as they may be able to get you fast tracked. Have you asked if there’s a possibility that your medicines could have interacted with each other to cause these problems ?
I can recommend Chlorhexidine wipes to carry around with you and dry shampoo for your hair ( forgive me if you have tried this already ) . Also a combination of D Mannose and Hyalofemne is very good for UTIs. I have had problems with my eyes in the past and The Eye Doctor eyelid wipes are very good for protecting your eyelids from a build up of excess oil and bacteria that might just possibly trigger inflammation.
Another thing to consider might be asking for a break from Letrozole to see if you get an improvement - then you would know if it’s that or something else. Or would they allow you to change to another AI ? I have a friend who couldn’t tolerate Letrozole but is ok on Exemestane .
Another thought - as Letrozole works on the endocrine system it maybe that an Endocrine specialist that might be able to help you but again you would need to be referred . I realise you’ve posted in the Ask The Nurse section but they might be able to discuss it more fully with you over the phone on 0808 800 6000. Xx
Thank you for your reply, i will make an appointment with my GP and
explain my thoughts to him. He may refer me to endicrinolgy, i was attending them, as they are the people who told my respiritory consultant and oncologist to get me off of steroids which were starting to have adverse effects. They were good, and explained we were in time for no long term edocrin damage to have been caused by steroids. Others have been to late to have been referred to them.
They also questioned why i was on biphosphonates, i should he having dexa scans, which they booked. They write to oncology who told them it was for bone strengthening and help stop reoccurrance.
Perhaps they spotted something then.
So i do trust them. And i will ask GP to refer me back.
Thank you.
I know ive had an awful time, everything is thrown at me, but i am very thankful i am here, i am a fighter, and i will continue to do so. The tiredness and the pain from letrozole and healing femurs is bad. But it reminds me that i am here and doing my very best.
Thank you, and God bless, keep up the good work
It sounds as though you’ve had a difficult time since your treatment for breast cancer in 2020. It’s understandable it’s getting you down.
As @JoanneN suggests the problems you are having with your skin and hair growth may be related to your endocrine system and it’s good to hear that your GP is considering referring you back to the endocrinology team. You could also ask your GP if a referral to the dermatology team would be appropriate as @JoanneN also says.
The tiredness (fatigue) and joint pain your describe in your post are common side effects of letrozole. It would be worth talking to your treatment team or GP about stopping your letrozole for a short time to see if your symptoms improve and whether an alternative hormone therapy treatment may be more suitable for you. It would appear that muscle and joint pain is also a side effect of mycophenolate so it might be useful to review this with your lung team.
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