Side effects - Taxotere + Cyclophosphamide

Hi 

Of course you are right everyone is different. I had both E/C and Docetaxel. I was ok with the E/C but the Docetaxel was brutal. I had periferal neuropathy so i couldn’t feel my feet and fingers for several weeks after chemotherapy, my finger nails and toe nails fell out, all of my body hair. Bone pain and fatigue,  I felt like a balloon that someone had let the air out of. Completely exhausted.

After chemo I waited for my hair to grow, I have some hair but not enough to cover my scalp, no eyelashes, eyebrows. PCIA is permanent, if you don’t have hair after 6 month’s then you won’t, it’s forever. When I researched, things could have been different because the evidence is there. I am upset that I don’t believe that 3% chance of alopecia is correct. Consent has to be informed and I don’t believe that I was informed. This research was done in my own hospital. What is the point of research, breast cancer patients like us taking part if it’s ignored.Every percentage point in these studies is a real woman, a patient at my hospital in the North West of England living with PCIA.

https://abstracts.ncri.org.uk/abstract/long-term-hair-loss-in-patients-with-early-breast-cancer-receiving-docetaxel-chemotherapy-3/

https://pubmed.ncbi.nlm.nih.gov/33350015/

I’m so happy for you that your hair grew back, it’s really hard for people to understand how you feel if it doesn’t. I would just say, if you wake up tomorrow morning and your hairline has moved back 3 inches, your eyebrows and eyelashes have gone and the person looking back in the mirror isn’t you, how would you feel. I had and still have wonderful nurses and breast surgeon, oncology is the problem. The evidence is clear. Sorry to go on but I’m angry. I had the right to be informed.

My oncologist has said the same thing to me. That no one he has ever treated with the same drugs have had permanent hair loss. And I'm so glad that despite all medical personnel telling you not to use Google, I did. And it led me to those studies. 

I fully understand this! I would feel exactly the same. No one that's only on the advising end would ever understand how it feels to a woman unless they have faced it. Yes, you want to be rid of cancer but you also want a quality of life afterwards and to be able to look in the mirror again without flinching. We all deserve a fighting chance at that. Again, my heart bleeds for you. I have asked them to reconsider the regimen to Taxol. I know it still has its consequences but I pray it's not as grave. You're a hero in my mind. I salute you 

I don’t understand why oncologist are saying that they haven’t seen women with hair loss. In the Clatterbridge/ Christie study 500 questionnaires were sent out 386 women replied, all from my hospital in the North West of England, most with PCIA. Read Shirley Ledlies book about her treatment 18 years ago called Naked in the wind. The same lies are being told then as now.This drug makes the manufacturers 3.6 billion a year. Why wouldn’t they protect their product.

I’m sorry that you weren’t informed. I know when I signed my consent it was mentioned about hair loss but I too wasn’t told it could be permanent that was what I had read when doing investigations like you. It was scary but I decided what would I rather have, my life or no hair and my life won. My hair on my scalp is only just starting growing I have a light fluffy covering. I have no eyebrows and just the odd eyelash which hopefully the serum will help. No hair down below or on my legs and underarms. 
This is the website in case you would like to try the 3 serums too to see if it helps. 
https://www.uklash.com

Sorry I now understand what PCIA is, I thought originally it was a medical illness not permanent chemotherapy induced alopecia. 
How long has it been since you finished your chemo ? 
I still look in the mirror at the moment and could cry too. The reflection whilst it’s me doesn’t look like me.  I’m lucky and have a very supportive family. Whilst not only are they supporting me but 2 others that have just recently been diagnosed too with bowel cancer. 
Thank you for the websites I will have a look at those.