I have been invited to take part in the Import Low clinical trial for my rads. I am having 15 sessions starting soon. Is anyone else taking part in this trial?
Hi Dolly
I was scheduled to have 20 rads sessions (45 Gray total) but have decided to stop them at 15 (37 1/2Gray) as don’t want side effects - my choice - have to see Rads head to explain myself (probably get told off, but I don’t care).
Jo xx
Hi
I am joining the Import trial - at least my boob will be checked very well for the next few years!!
Hi i have been invited to join this trial too. Like Dart Dolly i need 15 sessions too. Starting within the next week. Can you tell me which treatment you joined and how is it going?
Hi
I am on the arm that has full dose to the affected area and a lower dose to the rest.
Hi i am on the ‘treatment 2’ which is standard treatment to partial breast. I am going to Clatterbridge to be measured up tomorrow and hopefully find out when the treatment will start. Would you like to share any tips for the newbie?
Thanks
Hi dozlyn - I started rads on tuesday - 4 down , 11 to go!
Wear loose oldish cotton shirts/tops as they put marker pen on you every day and it rubs off onto your clothes. Use lots of moisturiser/E45 before you go - at least 3 times a day so your skin is in tip top position, make sure you can easily get your arm up above your head as it needs to stay there for 10 minutes or more. Mine is usually up for 30 minutes as they have to mark up 2 areas for the trial! No deodorant etc during the treatment weeks and use only baby soap as some other soaps, shower gels etc contain miniscule particles and they cause reactions.I was also told to drink at least 8 - 10 glasses of water a day, but not tea or coffee with caffine in it as it dehydrates you! They did not mention alcohol taken internally.
Also had my boobs photographed on my first treatment - hands on hips and hands on head, with a grey blanket tucked into the waist band of my trousers! Very sexy!!
Hope your treatment goes well
Angela
Thanks Angela
My text to my friends when i came home yesterday was ‘felt tipped,tattoed, photographed U tube here I come!’.
Being honest is was ok. Just another experience in this rich taperstry of BC.
Thanks for the tips on the clothes. I haven’t actually used deodorant on that arm yet. I will buy some baby soap today.
I only drink Red Bush tea that is caffine free so i hope that will be ok. But i should and always mean to drinks lots of water but will now make it a must.
I start my rads on 22nd. Please keep me posted how you are feeling. Although i have a wonderful family and great mates i dont want to talk about myself to them constantly (although they would listen attentively). I feel sometimes weepy for no logical reason and i hate crying!
Good luck with your treatment too.
Hi dozlyn
I have had 4 treatments so far, and the only problem i have is that my arm aches being in that position for ages - the treatment time is about 5 or so minutes but because they are doing 2 areas on my boob it takes them ages to set up. It takes them sometimes nearly 30 minutes to get me in position!! You will also ens up with felt tip marks every day - or I do!
The weepyness (? spelling!) is natural - you have been through a major trauma and your body takes a while to get used to it I am being treated at Christies in Manchester - not so far from Clatterbridge.
Good luck when you start!
Angela
Hi kharga
Hows it going i have now had 3 sessions only another 12 to go.
I feel very tired today and my boob aches a little.
How are u feeling?
I actually live in Warrington so it takes longer to travel (about 40 mins) than it would if i was going to Christies.
But it has been found and treated quickly so that is a big bonus.
all the best
Dozlyn
I was born in Clatterbridge hospital…what a small world this is…now living in the west country.
How soon after op do you start using E45 cream???And di any of you use Arnica before your ops…I’m told it saves some of the bruising, and my surgeon has said to go ahead and use it if i think it will help, but i don’t know what strength to get or how much to use! I will be having 4 or 5 weeks of radiotherapy apparantly,so all your advice is useful!
I started using E45 3 weeks before rads, and only started getting pingk on wednesday - treatment number 12, and it fades by evening. Last treatment on monday and pink still fading by evening!
I had 15 sessions. I also had no bruising post op1
All done and dusted today - still only slight pinkness, usually when my skin gets hot!
I can have a day to myself tomorrow!!
Well done Kharga how do you feel now?
I another 10 to go.
I am looking forward to the end.
I have to go to phyiso sessions on my arm tomorrow too.
Enjoy your day.
Dozlyn
Hi Dozlyn
It is great having the day to myself!
Feel slightly tired, but I was driving 25 miles each way for treatment.
My skin pinkness is fading.
Good luck with your other treatments
Kharga
I have finished my rads today. Afternoons to myself from tomorrow.
The treatment has been a dream. The staff at Clatterbridge have been professional throughout. Treating me with kindness every time. I could not have wished for a smoother 3 weeks.
Even the 35 mile each way journey was great. Music on full blast … with just my thoughts for 2 hours great!
To all those just setting out i wish your journey to be a plain sailing as mine has been.
Belive me at first i was worried/concerned with what lay ahead but now i am here i could not have been treated better.
I am due to start radiotherapy in January but have been asked if I want to take part in the Import Low trial too. Reading the comments here it seems I’m not the only one. How did you decide whether or not to take part in the trial?
Hi Jenny
sorry for the delay in answering i have not been on for a while.
I was put forward by my consultant and onoc as my cancer was grade 1, I had none of my lymph nodes affected and the lump removed was only 13mm.
My family had big resevations about me going into the trial but said the final decision was mine. There are 3 choices that the computer makes on the patients behalf based on the degree of cancer.
As my earlier posting said I had ‘treatment 2’ which is standard treatment to partial breast.
My family wanted me to have the full treatment and i was worried at first as i thought the rad would only be in the area that the cancer was removed from but most of my breast was treated anyway… i have the suntan to prove it!
I wanted to have the least invasive form of rads and this to me was the best option…for me
I was tired and sometimes weepy during the treatment but i think that was the fear of stepping off into the unknown.
I am a month from the treatment finishing and i feel great …sometimes tired …but i have also learnt to say NO when i dont want to do something which i found difficult to say but a friend who had lukemia told me its a word i needed to learn.
I still dont have feeling under my arm where i had the nodes removed from…but i can live with that. I miss being able to sleep on that side as i get pins and needles when i do…but i can live with that.
Do feel free to post and ask any more questions because i needed to know as much as possible before i started treatment and i felt very alone at times even with my family around me.
Where are you having your treatment?
good luck
Dozlyn
Hi Dozlyn
Good to hear from someone in a similar position! I made the decision to go ahead with being part of the trial, after talking with family and people involved with the trial. I’ve been put in for treatment 1, which is the standard dose to the affected area and a lower dose to the rest of the breast. Like you, I was happy with what I was given. I’m having my treatment at the Marsden (Surrey), starting on 7th January, so you are a bit further ahead than me. Also like you, mine was grade 1, no lymph nodes affected and only 7mm. Glad you are feeling OK now that the treatment has finished. Are you on Tamoxifen? I started that a couple of weeks ago - have felt hot but otherwise no bad side-effects (yet!).
Good luck as you settle back into normality…
Jenny
Hi
this is my first time joining in on the chat. I am starting rads on the 5th jan . I am slightly worried about how my breast will look and feel once the course is finished . I am having a course of 15 plus 4 boosters .I can cope with the sunburn and cracked skin , its the shrinkage and lumpiness that worries me , that they say can happen . Can anyone give me their experiences please .I have been on Tamoxifen for 2 months , havn`t noticed any side effects as yet . Dieting hard and exercising hard so not allowing any weight to go on .
Karen