TRACC Part C Trial

Hi Craig

I'm on Capox just had 4th IV and touch wood it's not been that bad. I found a snood scarf very useful too quickly pull over my mouth and nose in cold air. Also the side affects gradually decreased over the three weeks although initially each IV the affects were stronger. Gloves a  godsend on brass door knobs and cutlery and then anything. Drink warm water too initially.

lLastly thank you for the information on the trial I found that really interesting and informative. Sorry you didn't get to where you wanted to be but as you said that's the way things go on this journey.

Wishing you all the best. 

Ali x

Hi Craig My husband was also offered this trial but if he was chosen to have the reduced treatment it meant 6 months of oral chemo Instead of 3. He has now finished treatment and is so pleased he didn't choose the trial as he found the oral chemo muh more debilitating than the IV and the thought of having  it for another 3 months filled him with dread. 

I don't mean to put anyone off trying the trial as everyone's experience of symptoms to the drugs is different but we nievely thought the oral chemo would be a walk in the park compared to the IV but for him it really wasn't. 

Well done for getting organised for your treatment good luck and he didn't lose any of his hair which was a bonus. 

Take care 

Hi Craig,

I m a medical writer and I'm involved in writing clinical trial results for publications in scientific journal, although I work on rare blood diseases rather than cancer. 

I was initially diagnosed and treated for stage 3 colorectal cancer in 2019 and it spread to my lungs in 2022. Had chemo + radiotherapy last year, further spread, although still within the lungs last Dec. so back on chemo. I would really like to participate in a trial, although my onco reckons there's nothing I am eligible for at the moment, but I'm going to check just in case. In the meantime, I'm following the CoC protocol, taking supplements that have been shown to help fight cancer, and fasting 72 h around chemo, so throwing everything I can at it based on scientific evidence and agreement with my onco.

I think you will really benefit from your participation in that trial, even if you are in the SoC arm as you will be closely monitored. These randomised trial are often followed by an extension phase whereby the SoC group has the opportunity to join the treated group, but that would depend on the preliminary results and length of study (e.g. how many cycles they are doing).

Best of luck,

Cecile

Hi DIFarmgirl,

Thank you for the reply.  I took a bit of tine before deciding to participate and decided I would give it a go.  There seems a slight variation to the treatment your husband would have received as I was told that if I was in the test arm and my bloods were negative I would still only have three months of oral medication and the treatment period would only extend should my future bloods show a positive result at which point it would be an additional 3 months of the combination of IV and oral meds.  I was told that this happened in less than 3% of cases so it seemed worth while.  If any additional bloods and scans become too much I can still opt out at any time.  

Like you said on another post knowledge is power though and I’ve found the lived experiences people share on here every bit as helpful as the information I’ve been given by the doctors and nurses. 

Hi Craig,

I'm sorry you didn’t get the path you wanted from the trial. The information you have posted about it is very interesting and will definitely help others if they are offered the trial in the future. 

As Kettleson said, warmth is definitely the way forward after CAPOX, I don’t think I would cope without my snood! I had my second infusion today via PICC and it was a breeze at the time. I’m hand and leg tingling is definitely worse this time but manageable.

The thought of chemo is definitely worse that it is I’m my experience (I may change my mind yet).

Hope all goes well.

Rachael x 

Craig 

It looks as if we are following the same path,(8 weeks post surgery last Monday) I elected to take part in the trial and have also  been given the standard path, like you still happy about taking part as people in the future may benefit from the findings.  The only difference is i start my Capox IV treatment on Monday 12th.

I'm a bit apprehensive about it all as its the great unknown and everyone reacts differently ( so everyone tells me), so i'm keeping busy going walking everyday to try and keep / get fit. Brought Snoods gloves etc. and looking for as much advise as i can get . 

I would just like to thank everyone that posts . replies on here just reading the posts makes you realise there is lots of help / advise out there. 

Hi Alverstoke1,

I started my second round of CAPOX on Friday  2/2/24. My main side effects are cold sensitivity, I would advise taking a warm drink for your journey home after each treatment. I have freezer gloves for getting things out of the fridge or freezer which help greatly. I never realised how cold wet washing is until I started treatment! I also find the cold makes my legs tingle so often have to wear thick warm trousers when going out. 

Any questions, please ask.

Rachael

Hi Craig,

I am also on Tracc Part C and was randomized into the standard CAPOX treatment (same as yours), I started chemo Jan 23 and finished in April.  Aside from dealing with the Oxy cold, I did have some nausea so I advise taking the anti-nausea pills as soon as you feel anything, or even proactively. Rounds 1-2 were a breeze except for dealing with the post-oxy coldness. 3 was OK, 4 was quite tough with diarrhea but it was manageable with just Loperamide. I was able to work except in-hospital days and 2 days where I felt very tired in round 4. I hope it's good for you too.

I think joining the study and being on the control group is a win-win. Treatment is no different, but I do feel that being on the trial has been beneficial for me personally - it gave me a sense that something good would come out of it for other people, and I think that made the experience better and gave me motivation to stick to the chemo. Also, it's important to realize this is for people on the risk boundary between being offered adjuvent chemo or not.

I did think I would be able to access the results if I wanted to but apparently they don't test many of the blood samples immediately and just bank them, but will do if there is a remission.My bloods are taken by the research team, who are awesome, and they are very much on hand for any questions I have in general. After a year of quarterly, the cadence has dropped to every six months. 

My 1-year post surgery CT scan was clear, as have been the regular CEA (blood tumour marker) tests (which are still every 3 months).

I have some post-chemo symptoms which linger - photosensitivity, and also my hair did thin a little but it's come back mostly, hard to tell at my age :-) Maybe my hearing isn't as good as it was, hard to tell. 

Interestingly enough my blood samples are sent to a town in California where I often stay as our company HQ is there :-) 

There are occasional updates about the study on twitter - account name is TraccStudy - and they . 

Best wishes, Ian

Alvertstoke1 and Craig, one thing I remembered is that the first cycle was scarier than the rest because I didn't know the risk of infection were, and the bloods at the end of that cycle showed my immune system was still strong. That gave me a lot of confidence to get out more in the subsequent cycles. I did buy one of those antiviral nose sprays, and that also helped me feel better about being out-and-about. 

Hello Craig and everyone, I'm sorry you didn't get on the other arm but it's still really good you're involved and hopefully that perhaps still means more surveillance and more VIP treatment for your blood. Please can I ask you and others did your Oncologist suggest the trial to you or do you research trials yourself? I've done some googling but as you mentioned this here I thought I would ask. I am BRAF so I'm conscious there aren't so many options in terms of immunotherapy at the moment. Thanks very much