At the start of the journey and doing the trial

I am so glad I found this site, in that awful time between diagnosis and scan results reading all your stories really helped!
So I have joined this club that nobody really wants to be in!
I was diagnosed start of March, stage 2 (I didn’t ask anymore staging as not sure I wanted to know) and I know I’m lucky that it’s still confined and hasn’t spread anywhere else. Although my PET scan picked up something on my kidney, they aren’t thinking it’s cancer as it’s not vascular but it’s totally freaked me out, they have told me not to worry but will be checking it out.
Has anyone else joined the trial on offer, where you have 6 weeks of chemo before the standard treatment?
I have been selected to have the extra chemo which I know is a good thing but it kind of feels like I have volunteered to double my treatment and make myself more ill, also interested to hear from anyone that has used a cold cap as (and I know this sounds so vain) I’m scared of loosing all my hair!
Wish you all well with your journeys, my chemo starts the 26th!

Well I have started treatment! Had my hair cut short before the chemo which I found slightly traumatic but I know it’s for the best.
Found out by accident that I am stage 2b, I have now asked that I’m not copied in on all the letters that are sent as I find them full of information I don’t understand and don’t want to stress about.
I had my first of 6 chemos on Tuesday, the cold cap was actually fine to wear and the treatment itself wasn’t scary, all the staff seem really nice. Unfortunately also had to have a blood transfusion the following day but again that wasn’t to bad, to be fair I sit with my feet up and people bring me coffee so win win.
Only had slight nausea and headache, kept under control by the anti sickness meds, my biggest problem is my sore mouth (started before chemo due to my iron level’s) but again the hospital have given me mouth wash etc and today I managed to eat something other then ice cream or yogurt :joy:
Took great comfort in getting the first session out the way and marking it off on the calendar, 1 step down and at least I’m on the way :blush:


Well done Gizzy! That’s a great start - especially that you know the blood transfusions aren’t too traumatic, as with your iron levels this is likely to happen again. How great that they are keeping such a good eye on you. You are on the way! Xx

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Go @Gizzy !! I’ve no doubt you’ll smash it! I found it helpful to keep a diary/blog on here. Do keep us updated x

Thanks Jacks and Shammy, I have looked at your stories while lurking on here and it’s such an unbelievable help knowing I am not alone in this.
I do intend to try and keep up posting through treatment, best of health to you both xx

Well it was chemo round 2 today and what a disaster that was, had all my pre chemo meds then started the chemo and had such a bad reaction to it I had a seizure (anyone reading this please don’t panic, it’s the stronger chemo for the trial not the standard one that caused this)
It was possibly one of the scariest experiences I have ever had one minute I was fine next I was gone :grimacing: all I can say is I’m so grateful for the doctors that were right there to fix the problem, took a few hours to recover and now feel like I have been hit by a bus :joy:
So now I have lots of stuff to take before next week to ‘hopefully prepare my body better!’
Phew what a day :joy: still onwards and upwards I guess :blush: x

WOW, Gizzy - how frightening, although it sounds like you knew nothing about it until afterwards. That must be some strong drug! Glad they got things under control and thank goodness they can prepare you better for the next session and hopefully this will not happen again. Hope you’re feeling better soon. Xx

:astonished: oh my goodness… and youre still so upbeat! Youre amazing!

Aren’t our Docs great? Glad youre feeling ok now. Onwards and upwards!

Big hugs xxx

Oh @Gizzy sorry to hear today didnt go too well. Keep positive👍 and like you say,onwards and upwards.xx

Thank you all of you :kissing_heart:
I am grateful the staff there were so good and swift, I’m tired today but hey I have a 2yr old and that’s tiring enough :joy: going to spend the rest of my week building my strength up now the meds are helping my tongue, I was so excited I ate a sandwich today :joy: little things but positive steps :joy: wishing you well with your journey’s xx

I am so cross, I have been waiting for today for a telephone consultation from urology about the cysts they found on my kidney, I expected some answers and what I got was a phone call from someone who’s English wasn’t great, didn’t know any of my history and didn’t even know I had a ct scan with dye over 2 weeks ago. There was absolutely no point in this consultation as he literally knew nothing and couldn’t tell me anything. :rage:

@Gizzy Hi Gizzy, just want to say thank you for replying to my topic, especially when you are dealing with so much yourself. Sending hugsx

@Nadine66 your welcome lovely :blush: it’s a strange journey for all of us on here!
On the plus side I ate a bag of crisps today so was so excited about that given my tongue issues :joy:
Have had phone calls from both my trials nurse and cns nurse today which made me feel better and have taken that many steroids I’m sure I rattle so that hopefully tomorrows chemo goes better and the only side effects I get this time are feeling a bit :nauseated_face::joy:
I will keep my fingers crossed :crossed_fingers:t2: you get good answers soon xx

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So we tried the chemotherapy again today (strong trial version) I took loads of extra drugs to help my body accept it and unfortunately I had an even worse reaction then last week, so my consultant has said she doesn’t want to put my body through it again, disappointed that I haven’t been able to get through this extra treatment but I know it’s not my fault.
So I have had my planning scan and will be going straight on to chemo radiation in a week or so when I have recovered from today.
On a positive note my treatment will now all be done by the end of June and I get to keep my (now somewhat shorter!) hair :blush:

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It’s for the best, Gizzy! You were very brave, but trials are just that - they’re not proven treatments and you’ve made an absolutely HUGE contribution because you’ve highlighted reasons why some people may not be able to tolerate it, and given the researchers priceless information. Chemorads is gold standard and you will beat this. And you get to keep your hair - this is WIN/WIN! Hope you’re really rocking your new look as well. Xxx

Thanks @Jacks133 you are totally right and like you say at least I have made some contribution to this research, there is nothing else I can do and the reaction was completely out of my control.
The chemo has definitely had some impact because I just washed my hair and definitely lost more then normal but I know this will stop and I can now focus on chemorads! My hospital is over an hour away so I’m going to get some good tunes and sweets ready for the journey’s :joy: and make the most of the time before it starts! Xx

@Gizzy good luck :smiling_face_with_three_hearts: