Hi everyone, I’m starting on the Dice trial in 2 weeks, so far haven’t found hardly anyone in it.
If there are any of you lovely ladies on it, anyone got any information re, side affects, how long you’ve been on it, how successful.
In just over 2 years I’ve had 3 lots of chemo and a parp and none have been particularly successful, so running out of options 🤨
Hi Elf,
I have been in touch with you before about this, as I am closing in on the trial. I finished my last screening test, a CT scan today.
I had a fancy Power PICC Line put in yesterday at the Royal Marsden, so I am now ready for anything.
I won’t know for certain that I am in the trial until Monday, but they have already booked me in for the first infusion on Tuesday.
So, all things going to plan, I start Tuesday, 24 of September
I will post as soon as I start.
Best of luck to you,
Linda
Hi, I’m booked for a ct scan and biopsy next Wednesday and then start the trial the following Wednesday.
Let’s hope we get the real thing, at Southampton hospital where I am, so far they’ve only had 4 people go on the trial and they all got the placebo, so they have no knowledge of any side affects anyone has had.
Good luck next Tuesday, fingers crossed for both of us 🤞🤞x
Remember that in this trial there is only weekly Taxol or Weekly Taxol plus TAK228, the target agent and most people do well in weekly Taxol.
I, however, am preparing my refrigerator for bland foods and right now I am living on white bread and potatoes!
Best of luck to you,
Laura
Dear Laura, good morning. A question I would like to ask is will you be doing the infusions at the RM? I have been looking at this trial and I think I could be a suitable candidate - will contact my oncologist. All the best my dear for Tuesday. Anne
Yes, Anne,
I have to take part at the Royal Marsden.
Even though I think I will qualify, my CT was Friday evening, so I won’t know for certain Til late Monday or even Tuesday morning and I am booked to start on Tuesday!
I think we all are booked as we apply, getting us into treatment as swiftly as possible.
Hope to see you there.
Keep in touch!
Laura
Thank you so much Laura - difficult period for me at the moment. My oncologist wants me to start on carbo/caelyx on Tuesday followed up with Avastin. Have done the carbo/caelyx combination before and it was not very successful so hope the Avastin is the drug that is going to make the difference!! As you know we hang at straws, maybe the trial is a better option - even if I have to travel from Cornwall to London. Talk to you soon. All the very best for Tuesday. Anne
Hi Anne,
I wonder if you can combine a London Visit to The Royal Marsden with the COC people.
It does seem to me that a second opinion in London might be due you.
Can you get the train? How long does it take for you to get to London by train?
For me, it’s a straight shot to Paddington from Bath, hop onto the Circle Line to South Kensington and a five minute walk to the RM.
90 minute train and 30 minutes tube and walk - altogether 2ish hours.
Hope you get a second opinion,
Laura
Dear Laura,
Yes that is great that the trip is so short for you - it is about 5 hours from Cornwall, best to stay over night. However, I would like to thank you very much for the suggestion of a second opinion - that is probably what I need to do. Will try tomorrow to contact them both and get an appointment on the same day - probably not easy.
Start my carbo/caelyx on Tuesday, but hope it will not have too many side-effects and therefore travel would not be too traumatic.
All the very best. Anne
The problem will be, if you start treatment now, you will not qualify.
You have to be off treatment for 6 months for Carbo and one month for PARPS!
Caelyx alone might be okay...
Can you delay treatment until you see Susanna Bannerjee?
It would be best if your Oncologist will refer you, as mine did.
Good luck with this,
Laura
Ok Laura thanks for that information - so I would not qualify anyway as I only stopped Carboplatin in July and the big problem is I have started suffering from ascites just two months after finishing chemo so I am backed into a corner I think with not much to turn to other than Avastin and the possibility of joining the COC protocol.
Well at least it is very clear now.
Thanks a lot. Anne
Oh, Anne,
I might be wrong about the six months.
Please check and see, Okay?
I don’t want you to miss out AND check out Susanna Banerjee anyway, because she might have another trial in the works, plus, a second opinion would still be good.
Hugs,
Laura
I travel from Cornwall to London fortnightly- it is doable
Hello
I am starting the trial in Monday at the Marsden but the randomisation has put me in the weekly Paclitaxel only arm. So unfortunately I can't give any info in the effects of the TAK228. Good luck.
Belinda
Hi Belinda,
I am not even certain I have qualified, but I start Tuesday! Are you at the Chelsea branch?
I wish we were on the same day!
However, my Jazz singing American friend will be with me, so I will be entertained.
But, keep us posted on the weekly Taxol effects you experience. We like to know everything!
How did you find out which arm you were getting???
Best wishes,
Laura
I'm at Sutton, so will miss your jazz singing friend which is a pity! Once they confirm you are accepted they do the randomisation then and let you know before the first treatment as you have to fast if you are on the TAK arm. They'll call you for sure.
They also gave me the dates of treatment well before I'd been accepted, they are very enthusiastic. I had to push it back a week though due to prior commitments.
Will keep you posted!
Belinda x
Trial or not
