Has anyone had any experience of, or knowledge of, the PROMPT immunotherapy trial currently being carried out in 4 hospitals in London and Oxford? My oncologist has put me forward for consideration in Oxford as I am now on my 4th line of chemo - diagnosed in November 2018. I know that acceptance for the trial is dependent on some signs of improvement with the current weekly Plaxlitaxel regime. If this does not work I am not sure what will be next, if anything, on the list of possibilities. I am generally very positive but beginning to get a bit rough around the edges and definitely in need a virtual hug!!
Honor
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Bluemoon3
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I don’t know about the trial Honor but will gladly send you a virtual hug and keep my fingers crossed that you can get access to it. Chemo has side effects down the line doesn’t it… was just thinking this morning that my balance isn’t what it was..probably due to chemo… but at least I can still get out there, even if I occasionally end up falling into a bush 🤪… keep going, chin up xx
Many thanks Lyndy for your swift response and encouraging words. I know what you mean about unexpected side effects. Despite walking over 100 miles at 70+ last month for Cancer Research I have been diagnosed with osteoporosis and balance is occasionally compromised. Hey Ho I can still hug my grandchildren!, thank goodness! Honor x
Balance compromised? Mine is all over the place! And my legs are heavy like logs. Walking is a difficult and a determined exercise. I would love to hear from others, and if they have found anything that helps. Have had carbotaxol as first line and presently on 400mg Olaparib. Also, a big HUG to Bluemoon.
The legs !!!! In this weather feels like dragging them along . Developed cysts on backs of knees too !!! Think this is the Olaparib. Got to keep going though . Best wishes
One of my Marsden doctors has prescribed diuretic drug for 2-3 days to help with heavy legs. Have not taken it yet because I immediately developed UTI and didn't think it would be a good idea with antibiotics and urine infection. Am waiting to be sure UTI has gone and then will give it a go. Have any of the heavy leg brigade tried diuretic or anything else to help with heavy legs?
Same with me about balance LOL defo chemo to blame. And am only finishing second line ))) Specially when tired in the evenings am walking like drunk woman on the streets.....
Hi Honor. Lockygill posted about this trial recently. I hope you can get on it. Looking at your history makes me appreciate the fact that Olaparib is still working for me. I was diagnosed at about the same time as you at age 69. You sound quite active despite everything. Sending hugs!
Many thanks Delia. Your hugs are much appreciated. So pleased to hear that Olaparib is still working for you. Long may it last. I had 15 months with nariparib so that was a bit of a respite to be thankful for on this rollercoaster! Take care of yourself and live life to the full. Honorx
I know nothing of the trial but send you a big hug or two
Ovacome run a Tuesday online exercise class that has some focus on balance with Sarah who has apart from being an expert in the area, had abdominal surgery herself, so seems to understand what we need from exercise, she also offers Q and A sessions at the end every so often too. Maybe of help?
If you're interested in Ovacome's gentle strengthening exercise classes that Catfeeder has mentioned, there is more information available here on our website: ovacome.org.uk/event/exerci... . The sessions take place every Tuesday morning with Sarah Russell, a clinical exercise and Pilates specialist for people with cancer.
Please don't hesitate to get in touch with us if you have any questions about the classes or if there's anything we may be able to help with. You can message us directly through this forum, email us via support@ovacome.org.uk or call our support line on 0800 008 7054. We're here Monday - Friday, 10am - 5pm.
Well I was diagnosed 6 years ago and would love for a ny french institution to offer me a trial. You are lucky to have this chance. There are substantive advances being made on the immunity front so good luck and big hugs from france
Hi Bluemoon3,First of all big hug, we all need one of those.
I came off the prompt trial about 2 months ago. It appeared to be working at first but then the side effects were too serious so I was taken off it. All the best, that drug does work for some.😱 Sue
Hi Sue Thank you for the big hug just when I needed it. Really sorry to hear that the trial didn’t work for you. I realise that Trials are not always the panacea but they at least give us a chance of a way forward. I hope that your team are now able to offer you an alternative plan. I am sending you a big hug too. You sound as though you have been on a n equally tough journey. Take care of yourself. Honorx
Hello everyone. Ive been accepted onto this trial at University College Hospital in London. My first dose is next week so im feeling anxious. Any advice or help gratefully received. Best wishes to you all.
Hello Ritabon. You are a stage ahead of me. I am on the 4th cycle of the required Plaxitaxel and the latest scan shows a great improvement, including the liver problems . Thank God. There was an indication of something on my lungs but my oncologist didn’t seem to be concerned about this. I have an appointment in Oxford on the 17th October as the oncologist there was waiting for the scan results before a final decision could be made I am more hopeful than before that I will be accepted on the trial but time will tell. I nearly opted for a London hospital but worked out that going by car to Oxford would be an easier journey. I would be really interested in keeping in touch with you about your progress to ‘swap notes’ if you are willing and if it would be helpful to you too. I have no doubt that this treatment will be offered to more patients who have reached a crossroad in the standard ovarian treatment. Hopefully our experience and participation in the trials will help to move this agenda forward . The Oxford oncologist was really positive and mentioned that there were several suitable trials starting, including for the vaccines, if this one does not work. That is really good news for all of us that there is more emphasis on this previously more neglected area of cancer research HOPE is such an important part of coping with this chronic illness. The very best of luck for your first infusion next week. Thinking about you and and sending lots of virtual hugs! Honorx
hello, sorry for the delay. That would be great and very comforting - I'm pretty apprehensive as you can imagine but i know i have to try this. I'll keep you posted. My name is Rita btw. Thanks for this Honor, i really appreciate the support.
First infusion rather uneventful but i do have a bit of breathing trouble which is common, apparently. Just had to slow down. Next infusion on 20th October.
Hello Ritabon. Good to hear from you and to know that the first infusion was uneventful …we can manage that kind of scenario! I have had what I hope is my 4th and possibly last Plaxitaxel cycle today. I go down to Oxford on the 17th when I am presuming that a decision will be made as to whether I am a suitable candidate for the trial. My latest scan showed an improvement so fingers crossed I will be eligible. Did you have to have lots of tests before the medics made a final decision? Take care of yourself. Honor
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