Last week I was given to understand that my CT scan showed overall stable disease. I had been expecting something worse as I have had increased symptoms. My CNS arranged for a telephone consultation to discuss my scan. It turns out my CT was not very good and concerning, and my CA125 had started to rise after 4 cycles of carbo/caelyx. I have been offered the DICE trial and TAK228 maintenance. I’m of course so disappointed as I have been on treatment since March 2017. Swings and roundabouts all the way. I’ve had a good cry and putting on my bravest face but dreading telling the family again. Not ready to answer too many questions as I don’t have all the info till next week. Any experiences would be good to hear. I’m most sad that this rotten disease impacts so much on my husband and family during this already stressful time. Can’t make any plans!
Cheryl x
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I don't have any personal experience of the dice trial but wanted you to know that I am sorry to hear your treatment has not worked totally. I am currently on 5th line treatment so understand completely what you are going through.......its hard very hard, but your family and friends and of course everyone on here are ready and willing to support you come what may.
You can search in the box on the top right hand side of the home page on here for "Dice Trial" and you will get lots of info. Good Luck x
The dice trial seems to be small with only 126 participants! I can’t read much into the info as it’s still such early days I feel. No idea what the expectation is going to be in my case. I have an appt on Thursday with the research sister and hope I hear something hopeful. My only recollection was that Laura had been on this trial. I know our individual circumstances vary so much but she fought so hard and it is sad that I can’t call on her expertise as she was always so knowledgeable.
Thank you as always for your support Lyn. We have to keep up the fight both for our own sakes and those to follow who may benefit even if we don’t. I’m grateful to still be here. X
I am so sorry, Cheryl, for what you are going through. Not easy to be in treatment since March 2017. I hope this trial will be very effective and gives you some peace of mind.
Here is a link with information about the DICE trial that may be useful and helps you with the decision clinicaltrials.gov/ct2/show...
Hi Cheryl, sorry about what you are going through. Iv’e been on niraparib since last July. I am on the lowest dose, because the higher dose was too hard on my blood counts. Hope that whatever you take, it will work well for you. Donna
Thank you Donna. Have had debulking, carbo/taxol, Avastin, carbo/gem/ olaparib and cedinarib, carbo/Caelyx. Several transfusions due to anaemia and platelets dropping. Plus clot in my heart that may or may not have been related to chemo. Team suggest it was viral. Not that word again😖Now set for weekly Taxol and TAK228 depending on which arm of the trial I’ll be offered. I feel like I’m running the optics at a cocktail bar!!! Irony as currently can’t tolerate alcohol! I wish I could make up my mind what I am prepared to accept if I don’t go for the trial and what alternatives are on offer. Appt on Thursday so trying to think what I want and need to know. I’ll keep posting anything that may be useful. XCheryl
Hi Cheryl, I know what you mean about all these different cocktails. It can be so confusing as to what might work the best. I had a blood transfusion also a few months ago, because my blood count was low. I was so short of breath and my hemoglobin dropped too low. I have a dr.’s appt. on Thursday also and I want to talk about my muscle aches since I had the covid shot. I am on Zejula and that shot made my leg ache. Zejula can cause body aches and so can the shot. We are doomed if we take it or doomed if we don’t. What a crazy life with all this medicine pumping into our poor bodies. Sorry about your blood clot in the heart. That had to be scary. Hope things get better, sending a hug; Donna 🥰
Thanks Cheryl! I live in the U. S. and I think it is much later now if you are in the U.K. Many gals on this site are living over there, because that’s where this started from. I don’t know how I found this site, maybe I was just using google one day and I came upon it. It’s nice to have others that are going through ovarian cancer and we can share our stories. 🥰 Donna
Absolutely Donna. I don’t know too many people who have an understanding of this disease. There’s always comments about cure and women’s problems. At least on here there is a chance of honesty and experienced discussions. Where are you in the US? Hoping you receive great care and support. X
Hi, I live in Michigan, the Great Lake state. Yes, this is a nice site to talk about all of our problems. I am 74, what is your age? Many are younger on here I believe. The older I get, these aches and pains don’t feel better. My kids and grandkids must think I am really old. We just had a new great granddaughter, that about makes me feel like I am getting old for sure. Haha! Take care, X🥰
I’m 67. 2 daughters with 5 grandkids aging from nearly2, 4, 8, 10 and 11. Not seen them much this last year. It feels like previous wasted time. Sometimes they make me feel old and other times keep me young. X
Hi Cheryl, ive just been invited to Dice phase 2 and would be great to hear your dice related story. Wishing you all the best and sending positive thoughts x
I’ve only been on the Dice trial for two weeks so not much comment to make at theMoment. I wasn’t offered the TAK 228 arm of the trial. A little disappointing but at least treatment is still ongoing. I had a biopsy requested as part of the trial which was taken on Monday. bloods today and 3rdchemo on Thursday. Then a week off.
Hoping to have a chat with my consultant to discuss my CT and forward plan. Fingers crossed that it stabilisesme for a time.
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CAN ANYONE HELP ME ON THE FITTING OF A PORT PLEASE
