I hope you all are doing well in your own personal battles.
Meanwhile, I have just entered the 6th cycle of the DICE trial, where I have been on the trial arm of weekly Taxol and three days of the trial drug, TAK228 each week for five months.
This trial has not been a walk in the park for me, and even with reduced dosages of both drugs, it has greatly impacted my quality of life, which would be fine if the trial worked to stop the progress of my cancer.
But, after a promising start, with my CA-125 dropping from 143 in October to 29 in December, it rose to 53 in January and 91 in February.
My last scan showed my very small nodules increasing in size. My next scan is in 3 weeks.
The trial has definitely slowed progression, but not stopped it. I see no point in continuing it, as it makes me feel lousy five out of seven days each week.
My question: it looks like my cancer is confined to three small nodules in my abdomen, which are measured precisely for each scan.
Can I send a request myself to Prof F for her opinion on a second surgery? Or do I have to get a referral from my Oncologist or GP?
Thanks for listening,
Hugs to all,
Laura
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Lindaura
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Hello Laura that is very disappointing! My friend has recently undergone Hyperthermic Intraperitoneal Chemotherapy - HIPCC - It is chemo that is pumped straight into the abdomen, it is used for Ovarian Cancer amongst others. It is not available at all hospitals but I think the Marsden use it. Have a chat to your oncologist. Good Luck x
I’m so sorry to hear your news especially with the way the trial has affected your quality of life. I hope you can get surgery or radiation. I know there are trials in the US to combine PARP inhibitors with other drugs to get them to work when they didn’t on their own. Best of luck! Xoxo
Thank you for asking Laura, I am doing ok at the moment,(I think )
Off to see the prof on the second of March for my three month check up , always feel anxious about it . You always inspire me with your strength and positivity.
I wish you all the very best . They do the HIPPC at the Christie hospital in Manchester 😘😘
Because I was referred to Dr B at the Royal Marsden, for this trial, I don’t feel that we have the same relationship as I had with my local Oncologist in Bath.
I have a great rapport with my research nurses though.
I don’t have any advice I’m afraid , but I’m sure you will come up with something new to try. I’m sorry this hasn’t worked for you, but something else will...keep fighting!
I feel I am at same crossroads as you my dear. Really sorry to hear that the trial did not work, most disappointing is not strong enough.
I am in the middle of filling out a form my insurance company as given me entitled "Expert Medical Opinion Enrollment Form" where international doctors, licensed in the States, after seeing your medical records will give you their opinion of what and where you could go. It is probably grabbing at straws, but better than sitting here doing nothing.
Yes in fact I have researched it a bit - sounds as if it is quite heavy, but as I said previous what is not heavy in the world of oc when it comes to treatment.
I believe my oncologist advised me against it as he tends to with all I come up with, but I tend to take it with a big pinch of salt!!
Anyway it gives me courage to battle on when I read this forum and I thank all you ladies out there and especially you Laura.
Oh Laura, I'm so, so disappointed for you. As you say though, if it is contained to 3 small volume areas, then surgery would appear to be an option. I'm afraid I don't know the answer to the pathway for a referral to the amazing Prof F but I'm sure your Spec Nurses do.
Love, strength and healing Laura; you are strong, determined and will achieve a better outcome than you have at present. Big hugs.
Sorry to hear this trial has made you feel lousy & not worked very well to boot. I can’t help either with your question (I’m in Australia) but wanted to say I had second surgery about 18mths ago to remove a nodule (a lymph node) with no further treatment, so maybe really discuss if surgery is possible? I was also told by another oncologist after I had surgery that radiation might have been an option to. So fingers crossed there is something else that will work for you. All the best .... Ruth
Sorry to hear of the lack of progress. It does wear you down. However you are a tough lady and will not ever give up. Taxols in general are very good anti cancer drugs but need constant supervision. I presume your Onc nurses take your weight, BP, and do bloods before every infusion. Its easy to be overdosed if they do not . Further lengthy treatments on Taxols tend to cause resistance as the cancer cells develop proteins that fight the Taxols. I say this so you are aware and can speak to your Oncologist about it. Keep on and best wishes.
JUST WONDERING HOW YOU ARE DOING. READ ABOUT YOUR SITUATION AND IF IN 3 SMALL AREAS WOULDN'T REMOVING THEM BE A GOOD OPTION? I AM ON OLAPARIB AND DON'T REALLY KNOW YET HOW IT IS WORKING FOR ME ( ON LOWER DOSAGE). I KNOW YOU ARE BRAC POSITIVE AS I AM AND I'M TOLD IT WORKS WELL FOR US. IF YOUR DOC THINKS IT WOULD BE APPROPRIATE CAN'T YOU GET IT OUTSIDE A TRIAL?
All avenues are worth pursuing! At my recurrence I was also told I had nodules and that because they were small and scattered, surgery wasn't an option. I've since read that nodules refer to thickening of the peritoneum but not sure if I understood properly.
This was all before I also read about the intraperitoneal chemo which sounds made for these instances. I do hope they find it's the right thing for you anyway.
I'm sorry you're still having problems, Laura. Back in November I had Radiotherapy on my pelvis as it seemed that some small tumours were blocking a lymph gland, causing me to have Lymphadema. It looks as though it has helped a lot and my leg is much improved. Maybe Radiotherapy could help you?
So sorry to hear the news Laura--I agree with you that I would suffer if I was seeing a good outcome but why do that when you are not and you have no QOL. I just wanted to add to your notes when you see your doctor that I was trying to get into a trial where a trial drug was known to make PARPs work or work again when given in combination. You may want to ask if there are any trials with this drug called Prexasertib. I ended up not qualifying due to "not enough tissue to retrieve from my tumor(s) for the pre-trial testing. But all oncologist I have spoken to said its a very good drug and at the place I was trying to get the trial, the oncologist told me it was making the PARP work again in 33% or patients where it had stopped working. It also is known to be a good drug on its own--but not approved here in the U.S. Wishing you luck with your steps. Hugs, Judy
You are one amazing lady who always inspires the rest of us. I am sorry to hear that the DICE trial hasn't been as good as you would have hoped. It has bought you more time but if it knocks you out for 5 out of 7 days I can certainly understand why you are not continuing.
I'm afraid I can't aid anything to what your options might be going forward but just want to add my support and hope that you find the right option for you to buy lots more time.
Please let us know how you get on - we are all thinking of you and sending hugs and love.
Hi, Laura. Wish I could give you a great, big hug! You have been brave about starting something new and, at least, you know you can move on from that drug making you feel so ill. Get your body back and go on to the next thing. Before you even posed the question of surgery, I thought the same thing myself. If they know precisely where they are and how big...they can go in and remove. I hope you do ask and it all works out for you.
As far as I understand, your GP or Oncologist can refer you to Prof F.
I’ve heard that she can look at your scans ‘on line’ first too, so that she has an idea of whether surgery would be a good option for you (which it sounds like it would if your nodules are small/few). That’s just my opinion Laura.
You’ve been so brave trekking up to London when you’ve been feeling rough etc. I really wish you the best.
Sorry to hear you have been having a bad time on the DICE trial. You are always so supportive and inspiring to other ladies on here. Sorry haven't any advice but sending hugs Lesley x
Very disappointing for you. In the possibility it was the trial drug causing you to feel so unwell, would you be able to continue with just the weekly Taxol in the hope that it will keep things at bay while you research an operation or other treatment options.
Hi Laura, sorry to hear your disappointing news. I’m hoping that the information from others who have different experience and knowledge of what’s out there will help as you consider what next.
I’m just sending some strength and a virtual hug to help you take the next steps.
Bit late with my reply but IP chemo has always seemed popular in the US with what seems like promising results. I did ask my oncologist about it a while ago but she felt some of the risks outweighed the benefit. I do always wonder though why the UK lags behind other countries with our survival rates. Is it because we are much more cautious and other countries will try new treatments and push boundaries? If I were offered it and needed it I'd go for it but I know this is just something you're currently exploring. It's a difficult situation when it's our bodies and we want to do everything we can to keep on going. Sometimes I feel the medics don't understand our desire and need to look at other treatments. They often seem content to treat us all the same without thinking outside the box. Good luck.
So after talking to my nurse today, I am thinking I should aim for these options:
1. Targeted Radio therapy to zap the three nodules.
2. Hipec treatment to kill every thing in my abdomen.
3. Surgery referral to Prof C F at Wueen Charlotte
4. Back home to Bath for Carbo and Gem.
These are talking points now when I meet up with Dr Banerjee at my final clinic after my last scan- so just three more weeks away and only one more week if taxol, but two more weeks of TAK228.
Still, I can handle this and gear up for the next battle.
I'm so sorry to hear the DICE trial has not stopped your disease, but it does feel like since it is in specific nodes, there should be further treatment options. I'm glad you have outlined treatment options with your nurse specialist, hope whichever you go for give you back your quality of life.
You are always an inspiration, Laura. I'm sending you big hugs and all the very best wishes.
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