Hi Angie, 

Although I’ve visited the chat forum I’ve never actually posted anything but I saw that you are going to start FEC T so thought I would share my experience with it . Before I started I was really worried but It was not as bad as I had feared and I actually found the T part more comfortable than the FEC .For me the biggest thing was the tiredness, I was wiped out for 4 or 5 days after each one  . I was very lucky and although at times I felt nauseous I was never actually sick ( They give you lots of anti sickness meds ) . I had several side effects but nothing drastic and it says a lot that already only a couple of months later I am struggling to think of them . Heartburn was one of them along with very sensitive finger tips and toes ( I still have a bit of neuropathy in my feet ...it feels like I’m walking on a stone under the ball of each foot ...not painful but just feels a bit weird ) I started to lose my hair straight after the second session of FEC ( I chose not to use the cold cap ) . I had my op in March ,finished the chemo at the end of September and have just finished 5 weeks of radiotherapy. My hair is just beginning to grow back . I’m still very tired but that is as a result of the radio as well and it is still early days. I hope that you also get minimal side effects and that your treatment goes well ....good luck ! 

Jackie

Hi Angie, 

Although I’ve visited the chat forum I’ve never actually posted anything but I saw that you are going to start FEC T so thought I would share my experience with it . Before I started I was really worried but It was not as bad as I had feared and I actually found the T part more comfortable than the FEC .For me the biggest thing was the tiredness, I was wiped out for 4 or 5 days after each one  . I was very lucky and although at times I felt nauseous I was never actually sick ( They give you lots of anti sickness meds ) . I had several side effects but nothing drastic and it says a lot that already only a couple of months later I am struggling to think of them . Heartburn was one of them along with very sensitive finger tips and toes ( I still have a bit of neuropathy in my feet ...it feels like I’m walking on a stone under the ball of each foot ...not painful but just feels a bit weird ) I started to lose my hair straight after the second session of FEC ( I chose not to use the cold cap ) . I had my op in March ,finished the chemo at the end of September and have just finished 5 weeks of radiotherapy. My hair is just beginning to grow back . I’m still very tired but that is as a result of the radio as well and it is still early days. I hope that you also get minimal side effects and that your treatment goes well ....good luck ! 

Jackie

Thank you Twin Two and Jacqi for your replies. Doing everything to prepare for chemotherapy, but I know that you can never be prepared enough for this whole life changing process. 

Trying to decide on cold capping; however,  I hear it only works for some, but not for others. How often would I actually wear a wig? Bald is beautiful. Though, it’s winter now, so I won’t dare to test that theory so much.

Wish all you ladies continued success in recovery. 

xx 

Angie29

Hi angie

I'm glad to hear you are doing well. Try not to worry, take it one day at a time..I hope you dont mind but im just hoping you may have some tips for my mum whom is starting her radiotherapy soon, did you hear any tips along the way? Could you explain what happens or what to expect to help put my mums mind at ease? 

Thanking you, geraldine x

Hi Angie29

I see you  were undecided about trying the cold cap. I tried it for the first cycle, it takes a little while to get used to it but it is manageable. I was surprised at how much hair I have lost, it started on day 13 and  I'm losing more hair each day, I'm not sure I will have any left by cycle 2. As soon as I get my wig  I think the rest has got to go. I don't know how often I will wear the wig but I guess once I've got it its an option. 

Do whatever feels right for you on the day, keep in touch.

Evie 18

Thanks Angie,

with regards to cold capping I chose not to because it adds to the amount of time you have to spend at each session and also because I had also heard that some people still lose their hair ( my sister in law used it and lost most of hers ) I also decided not to have a wig ....I feel more like me with a hat or scarf than I would have in a wig . I go commando at home ( my lovely hubby said I remind him of that one in ‘Snowhite ‘ when I asked him which one ( visions of snowhite in my mind) he said ‘Dopey’ ! Lol Good job I love him .....having a sense of humour helps get you through most things !. My hair is just beginning to grow and as soon as it is even all over ( even if it is still really short I intend to ditch the headgear when I go out too ....I find it very itchy ) of course everyone is different and what suits one person doesn’t suit the next so the important thing is to do what you feel most comfortable with .....

                                   jacqi

Hi Geraldine ,

I have just finished 5 weeks of radiotherapy. I can’t speak for anyone else’s experience but I can tell you what it was like for me. Firstly the staff were all amazing ! I had a pre meeting with a nurse who explained exactly what would happen and then was ‘measured up’ ( everything is measured down to millimetres) while laying on the same sort of platform as for a CT scan, there is an adjustable neck rest, knee rest and footplate which is set up ready for you each time . I then had 3 little pinprick tattoos put on so that they could line everything up accurately each time ....these didn’t hurt .The machine is like a CT scanner really but without the ‘doughnut’  The machine that delivers the radiotherapy slowly swing over to different positions then stop to deliver the correct amount. I had to hold my breath while the machine was working but was told that if I needed to breathe it was fine and that the machine would automatically stop. The staff leave the room once everything is set up ready to go and talk via a microphone . I felt absolutely nothing during the treatment . The effects didn’t really start to show until about the 12th one ,when my breast and under my arm started to feel a little swollen and tender....this has increased as time has gone along during the 25 sessions ( sore but not unbearable) and the area has become red and itchy but they gave me cream which has really helped. They told me the effects peak between 7-14 days after the last treatment so I think they will start to decrease in a couple of days or so. I was advised to moisturise the area from the beginning and have been doing this with E45 cream . Please tell your Mum not to worry ....Radiotherapy sounds scarier than it is, the staff will help her through it and before she knows it she will be the other side of it ......wishing you and your mum all the best 

jacqi x

Hi Angie,

As far as our hospital is concerned they've seen no benefit from the cold cap, but I don't know how long it's been available here.  I chose not to use it as I get hemiplegic migraines.

Like others I coped very well with my hair loss.  I often went out completely bald, but wore a scarf if it was sunny and so I risked burning my scalp.  I have two wigs, a fake hair one and a real hair one.  I have worn both, but the main purpose of the real hair one was for big events where we will be looking at photos in years to come.  I don't want to be looking back and my first thought be "oh, that's when I had cancer".  Also, I'm an identical twin and my toddler nephew acted a bit different when I was bald (he thought I had "magic hair" that I could "take on and off" :D, he wasn't scared, but I think me suddenly being so different to his mum was strange for him).

Admittedly it's been a case of "blink and my head has a good covering of hair".  Everyone is different, but of course in winter you are going to have to do things a bit differently and consider temperature etc.

LJxx

Thanks everyone for head wear advice. My oncologist also mentioned that cold capping works for 50% of women, so I’m not sure I want to spend 2.5 hrs extra to save my hair, if it still would fall out anyway.

TwinTwo, thanks for advising on wigs. I’ll likely get a wig for going out or special occasions with photos and rock the bald look now and then. Well, at least at home.

Like you said Jacqi, it’s good to keep a sense of humor. Thanks for making me smile regarding the Snow White reference! 

Evie18, hope side effects are not too heavy as you continue with chemo. I’m also curious if I’ll wear the wig that often. But it is handy for special occasions. 

Ger73, congratulations on your mum finishing chemo! Jacqi gave a great description of pre-treatment preparations. Radiotherapy should feel like a breeze I’m sure! Although, it is an every day event. I drove myself to all the treatments and didn’t have any serious side effects. However, I did have delayed fatigue after my last treatment. Also, I used lots of lotion all over after each treatment as well as coconut oil, especially for my reconstruction latissimus dorsi flap wound to keep skin from drying out. I did burn a little, and now have a dark tan, but I believe that should go away in a few months. Other than the annoyance of going every day, radiotherapy went by very quickly and was rather painless.

It’s so nice to be able to talk and share in this forum. 

xx

angie29