Hi everyone, forgive me for disappearing, but this has been a bit of a saga, as you will see.
Well, these are very weird and difficult times, so quitting my weekly train trips to London is a good thing.
However, giving 6 months to the discomforts of the Dice Trial, only to have it fail, is pretty disappointing.
I would have thought that weekly Taxol alone would destroy my cancer, but no, and the nasty TAK228, did not help either.
But, it did slow the progress, so I am not too bad off. I started the trial with a CA-125 oh 198 and half way through, it was down to 29, but I have ended up at 160 and spread in my peritoneum. So far lymph nodes are clear, as well as lungs, bowels, etc, but the cancer keeps growing.
Despite the threat of the Coronavirus, I took my friend Kelveen and my husband along on the train to London just a week and a half ago, for the final reckoning with the consultant.
There wasn’t much the consultant could tell me besides the trial was over for me and there were no new trials I could qualify for. She told me that my Bath consultant had proposed a regime that the London doctor agreed with and so I will happily return to her.
It will be Carboplatin and Gemcitabine.
Anyone with experience with this combo, please let me know.
We still had a gay time at the Marsden, a bit tearfu, but we managed to have a last fabulous lunch at Cafe Roma, and with no more infusions, we got home early.
So. About that Coronavirus:
My husband has been paranoid about it since he first heard about it months ago. Nagging me to wear a mask on the train, and to keep away from people in general.
There were no confirmed cases in Bath, but of course, there were no tests either.
So, my husband is a bit of a hypochondriac and a few days after our visit to London, he began to feel ill with what he was certain was the Coronavirus. He went into self isolation, but he had already touched every surface in my room and our kitchen, etc.
I felt healthy and strong, being off chemo for nearly two weeks, when suddenly, last Tuesday evening, I began to feel not so well. I had a slight cough, a slight fever and was just not quite right.
My husband forced me to call the emergency Chemo line.
After much discussion, they said it was prudent to go into the special unit, set up that day at the Royal United Hospital here in Bath. The Respiratory Assessment Unit.
I went in, garbed in mask and gloves, they took me seriously (I was their second patient) swabbed me and tested me for Covid-19. Asked lots of questions, gave me blood tests and a chest X-Ray. Kept me overnight and the next morning, informed that I had pneumonia and suspected Covid-19, but the results would not be back until the next day.
They pumped me full of antibiotics, put me on oxygen and in the meantime, we waited.
I felt pretty good, though. My worst complaint is some new agonising pain in my right shoulder which came out of nowhere.
The next day, I felt even better and by the afternoon, they could take me off the oxygen, but then the doctor came in to tell me I had indeed tested positive for Covid-19.
Ha! No, they would not test my husband or daughter.
But now the worst had happened to me, I had the virus!!!! and I was going to be okay.
In fact, they discharged me from the hospital that night, loaded down with meds, and told me that I only had to remain isolated for one more week!
And that’s the end of my story so far!
Virtual hugs to all,
Laurs
🥰🥰🥰
Written by
Lindaura
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OMG I can’t believe you already got the virus and lived to tell the tale. And hopefully will be immune going forward. I’m sorry the trial didn’t work but hope the new chemo will kick the cancer’s butt. Take care!
I can’t wait to get started, but this Virus probably will set me back a few weeks.
Virtual hugs, 🥰,
Laura
I’ve done Gem/Carbo twice, second and third line treatments, both times I’ve had a complete response. I also had Avastin with it. I worked two days a week throughout. I was tired but pretty much ok.
It must actually be a relief to know you have already had COVID-19 although not pleasant at the time. Why would they not test your husband or daughter?
Just wanted to answer why they would not test her husband and daughter - this country does not test anyone any more, we stopped about two weeks ago, UNLESS you are ill enough (and now, lucky enough) to get admitted to hospital, at which point they will test. I am deliberately restraining myself from making any further comment about that particular policy...!
Hi, Ministers are being tested and the gorgeous Idris Elba has been tested due to close proximity to a confirmed case. I get that people are not being randomly tested but it does seem very much one rule for one.
It's a pity they don't test health workers when they feel unwell- every day, more go off into isolation because they're unwell, but don't know if its Covid19 or not unless they get ill enough to be in hospital. Which seems utterly ridiculous to me...
Note that Idris Elba was tested in America, not here.
There's some controversy about it in the States, cos most ordinary people aren't being tested there either... occasionally, this feels like a nightmare I can't wake up from😗
It's a bit easier for me - I know my cancer is going to kill me and I've lived with that for a couple of years - Covid 19, I guess, will just do it sooner. I was considering some chemo in around 4 weeks' time, depending on the latest scan, but [Edited by moderators] I doubt that will now be on offer, but it might not have done much anyway. What's very annoying is not being able to see any family or friends while I'm awaiting the inevitable... but hey ho, what can you do, its just how it is. We're universally all in deep doo doo right now aren't we...
I’m in the same boat, finished third line in December and although I’m on a PARP it doesn’t seem to be stopping the rise of my CA125. We discussed starting weekly Taxol at my last oncology meeting two weeks ago, I wasn’t keen and this has probably put pay to that.
I’m entering my fourth year so know days are limited. Like you just gutted I am not getting to spend them with my loved ones and friends. My priority this year was travel if possible while I could to see friends who are further afield.
Hopefully people will listen to advice and do what they can to reduce the impact, not convinced mind.
I think we'll end up on lockdown, given the number of people out and about in various resorts today. I'm staying in mostly, not because I'm worried about getting it, more not to pick it up and spread it... But its no way to spend one's last few weeks or months, is it,really. Still, if this pandemic had happened 5 years ago before my cancer, I'd have been freaking out about it, ha ha, so swings and roundabouts I guess😊
JUST READ YOUR POST. COULD THE RISE IN CA-125 BE CAUSED BY SOMETHING ELSE? ARE YOU BRAC POSITIVE? HAVE YOU BEEN SCANNED OR DID THEY OFFER A DIFFERENT PARP DRUG/
DON'T GIVE UP. THERE ARE MANY TREATMENTS OUT THERE.
It didn’t ever go back to its usual 8, it went down to 20 but only for a very brief time. I may be becoming platinum resistant, hence the suggestion of weekly Taxol. I opted not to be scanned at our last meeting, we said we would wait 4 weeks. 😬likely to be much longer now i would say.
I’m super positive but realistic. I’m brca negative. I’m also on tamoxifen.
My oncologist isn’t taking my ca125 now, we are just waiting for symptoms to become too much. X
JUST WONDERING HOW YOU ARE DOING. I HOPE BETTER AND TREATMENT IS WORKING. THIS STUPID VIRUS ISN'T HELPING TO ISOLATE PEOPLE WITH ALL THIS TO DEAL WITH. LET ME KNOW HOW YOU ARE.
Oh my goodness, what a shock and how frightening! I’m so, so glad that you have come through safely and will be immune.
I’m really sorry that the trial didn’t work out for you, that must’ve been gutting. However, with this next lot of chemo, let’s hope you annihilate those evil little cells.
You sound like a very strong lady; kick it’s arse once and for all!
All the best to you and many thanks for sharing your story.
It’s good to know that even with our challenged immunity, Covid- 19 can be thrashed too.
Everything crossed for you that the next chemo will sort it. It’s very frightening when things don’t work out as you’d hoped but you have a strong spirit and you’ll find a way somehow. Your immune system is strong and can beat this too!
So sorry to hear the trial has not worked, glad to hear you kicked Covid 19 butt! What a tower of strength You are 💪, Good luck with any future treatment x
My dear Laura! What are the odds?! I had been thinking of you, never expecting to hear any of this. I’m sorry that the trial wasn’t for you, but, I’m sure that this next treatment will get results.
God love your husband and friend for escorting you. Glad you had a nice time before you got hit with this virus. Shows you how truly strong you are to get over it as quickly as you did!
Stay well and continue staying strong!
You are a great inspiration to all of us.
Please keep posting with updates so we know you are coming along.
I am so happy you are feeling well. You are always so positive!!! Love it!
I am doing well. My last scan revealed an enlarged nodule on my thyroid. Never made it to bloods or ultrasound but having a video visit with my dr tomorrow morning. For today....I am making sauce with rigatoni and sausage. We shall eat for today!
Oh gosh Laura, how scary you have had the virus and come out the other side. but at least they won't be able to put your chemo off as they now know you're immune!! Sorry to hear about the trial, I know you put so much into it. You really are such a determined lady, take good care of yourself and let us know how you get on, vickie x
I think that too Laura, I am holding out for this antibody test and then I'll ask for my mum to be tested and if she has had it then they can restart her chemo! I've heard they are screening all footballers and politicians. Why are they not testing all the cancer patients? Take care lovely x
Wow you really have been through the mill! At least you can now concentrate on getting better... knowing you don’t have to worry about the virus! I hope carbo gem treats you well ... very best of luck with it! xxx
It is easy to beat the virus. A lot of us are quite healthy except for this nasty cancer, but of course, because of the cancer, I could get the test and immediate care.
Wow! What an amazing - and uplifting story. I’m really sorry the Marsden trial didn’t work for you - I was ineligible for the trial
I went for and am quite glad now as decisions would have made about continuing with the travelling. I’ve been on Carbogem since January and although I was quite energetic to start with, it has now started to affect my blood. I have an injection to give myself to boost neutrophils and white blood count after the second chemo in the cycle. I take a drug called Akynzeo an hour before chemo to stop sickness - it reputedly lasts for three days. It means I don’t have to take Ondansetron which tend to turn my bowels to concrete! After the third cycle - sixth infusion, my platelets dropped down and my haemoglobin was low and after this cycle I’ve had to have a transfusion. But I’ve got through 4 cycles - both gem and Carbo are divided equally over two Fridays, then I get a ‘week off’! Only two to go then I can properly hunker down to self isolation!! I’ve still got my hair although my eyelashes are a bit fragile.
It’s eminently doable and my CA125 has gone down from about 1200 to 700 which is quite low for me. Next time I see my consultant I’ll get the result of my mid cycle scan - hopefully the tumours will have shrunk.
I am aware of and apologise for the slightly garbled, out of order post here. This is due to having a very small glass of a ginger liqueur (to aid digestion, you understand!) which was probably a mistake, but may give me more than the two hours sleep I had last night. I’m delighted you survived the virus and long may you carry on beating the other bigger too! Xx
I’m only in for a line flush next week and apparently that may be farmed out to a Phlebotomy hub somewhere in the community. I wish we’d taken up the training for Tom now, but he wasn’t keen. What time are you there? I’ll have a look for you if I’m allowed.
Cinzano is definitely medicinal! One of our social distancing activities will be reducing the contents of the drinks cupboard - I’m not as bothered about my liver as I thought at the moment!! Catch up soon, love Ali x
I am ashamed to say that my lot did a booze buying trip to the Asda last week so that is on supply we will not be running out of any time soon. Is stockpiling alcohol socially unacceptable?🤪
I mentioned a dose reduction last time I saw the team - they’re keen to keep going at this rate as it seems to be working. I’ve only got another 4 treatments to go (two cycles), so I’m happy too as long as they can support me with the blood and white cell booster. Just like you, I want to hit the cancer hard. I have also convinced myself that fresh blood and white cells may help me fight the virus if it comes my way - not sure this is a medical fact - it’s just as likely a large whisky will work!!
Stay well, looking forward to hearing how you do. Best wishes, Ali x
Omg I cannot believe what you have been through the last few weeks. So sorry the trial did not work for you but so glad you survived the Corona Virus. How tough are you?
I too am currently on Carbogem but have a mix first week, then the second week Gem alone and then a week off. There are 6 cycles planned and I have just completed number two. The first week knocks me out a bit but the second does not seem so bad. So far my bloods are behaving apart from my magnesium levels but I am on supplements now. Overall as Ali says very doable.
I don’t like that they only allow for 6 cycles. If it works, they should keep going until all the cancer is gone!
On Carbo/Caelyx, I did great, with a CA126 of 15, but there was a tiny bit of tumour left and I was so anxious to start on Niraparib, thatI ignored it, thinking the Niraparib would take care of it.
Wow! How lucky are you? I am terrified of contracting the virus, as we know we are in the vulnerable category. I checked back to find your age, as I presumed you were quite young, and discovered you are the same age as me!
How fortunate that Bath had just set up their facilities as nearer London hospitals are already nearing capacity. I have been told that they are concentrating their efforts on younger people, and older are more or less being left to suffer at home.
Once again, well done. Hopefully you are now immune.
It’s a great relief to actually get tested for the virus, as I had been travelling on the train, hanging out at the Marsden, and even if I didn’t have it, could be a carrier.
Anyway, the combo of cancer and pneumonia made treatment direct and swift.
Plus, like many of us here, I was super fit and well, before getting knocked back by this evil disease.
Besides, I thought I was 47 years old, until I saw my real age on my first hospital discharge notes.
Hi Laura, what a trial. (No pun intended.) We have 66 cases in NZ as at today, with 64 of those travel related, and the other two (not confirmed yet), indicating that they are the first community transmissions, which is frightening in itself, however more so as unfortunately one of these is in my town, which is very small.. Anybody with a suppressed immunity or is over 70 is asked to self isolate. This all so weird and troubling.
In terms of carbo/gem, I had this for second line . It pushed my CA125 down to 13. I did have issues With the Gemcitabine. It is very tough on your bloods, and I needed 4 transfusions along the way. I managed to complete the series, but had to also have a treatment break near the end. Unfortunately I ran out of luck again, and the beast came back. CA125 started going up at 7 months, when I went on monthly watch. I held out on treatment for a further 5 months, my CA was by then 217. We probably waited one watch too long, as within the month I developed Mets on the liver. I have just completed third line of carbo only, and again it has pushed it back to 13. I had a scan last Thursday, and have an appointment on the 3rd to get the results. I am thinking he will ring me tho, as a lot of medical consults are being done by phone to reduce risk. I also have to travel 85 kms for my appointments. I have my fingers crossed for a good scan result. Best of luck for your new treatment, and positive that you are still carbo tolerant. Therese xxx
Sorry to hear the trial failed, & that you had the Coronavirus, but at least you have had it & come out the other side, though I’m sure you have concerns about your family. My husband went into hospital on Monday with heart problems & a raised temperature, so was tested & put into isolation, & I was told to self isolate at home. It took till yesterday to get the results of his test, they said it was because they were getting so many things to test, but I was finally told yesterday afternoon he was negative, & I was able to visit in the evening. Di
The worst thing about being in isolation at my wonderful hospital is that they have awful food for the patients. This is mysterious, because they have a perfectly good cafeteria and coffee shop with a range of tasty and healthy choices.
So, when I am stuck in hospital, my family brings me edible meals.
Laura you are amazing. My wish would be that in some weird way having being exposed to this virus has done something good & halted, or better still, killed the cancer cells! Best of luck xx
Hi Laura ... I typed a reply to you the other day, but now having a look and it seems it didn't go through (was doing it on the phone, so who knows where it went). Just wanted to say thanks for taking time to reply. When I had my recurrence almost 2yrs ago I had that same niggling ovary sensation on one side only. Because of that I asked for earlier appointment (I had let it go on for a few weeks as some days it didn't feel as uncomfortable as others). My CA125 & PET scan showed one para aortic lymph node was involved. I think maybe we all get niggles there at times, so I'm not saying this to worry you more - but maybe it's a reason to try and get an earlier phone appointment? However, there didn't seem to be a rush in my surgery to have it removed - from the time it was confirmed to surgery was almost 2mths (plus the 6wks or so before I did anything about it). It's the waiting that is often the worst part. Please stay well. Sending hugs from Australia xx
Wow Laura, you are one strong woman! Now you've dealt with Covid 19, kick that damn disease back. Your immune system must be good. I hope the next treatment is successful for you. Nicola x
I wondered why you;d not been on for ages, glad to hear you're still trucking on. I hope your family does not come down with Covid19, or if they do, they recover well. There's something to be said for knowing you've had it, it means you can go out and about,after your quarantine is over. This staying indoors is driving me mad already...
Hiya Laura- sorry to hear you have been having such a rough time- but wow you are one tough cookie!! Just wanted to send best wishes for your new regime and say take care.
Great timing with the virus. l have long been a believer it would be better to get covid19 sooner rather than later. Thanks for giving everyone your good news.
Really sorry the cancer story is less inspiring. I had this regime for 2nd line and although l needed a couple of blood transfusions along the way l found it very doable. Just fatigue towards the end. I recently posted about my need to commence 3rd line chemo this past week.
Wishing you well and good luck with the new treatment. Love Sylvia X
Wishing you well with the cancer treatment and glad that your brush with Covid-19 was dealt with and not too bad - the world is such a scary place at the minute that I can’t decide what to worry about more - I’m facing recurrence but won’t know until they biopsy a lymph node and that is up in air as clinics being cancelled left right and centre - fingers crossed for us all x
Oh Thank God Laura. At the same time reassuring for us all on this site that Covid19 not necessarily a death sentence - we can get through it!! So sorry to hear abt your trial. I do wish there were more trials for us all but with loads of good luck for your new treatment plan. Best wishes. Gwen Xx
I HOPE THIS NOTE FINDS YOU FEELING A BIT BETTER. WANTED TO SHARE MY EXPERIENCE WITH YOU ON THE CHANCE SOMETHING IN IT WILL HELP YOU.
I HAD GEM/ CARBO FOR MY RECURRENCE AND THEY DECIDED TO STOP IT BECAUSE THEY SAID I DIDN'T NEED ANY MORE OF IT. IT DID WORK!
HAD SURGERY AND SHE COULDN'T GET TO TWO "SMALL SPOTS" ON THE COLON.
TO ME EVEN ONE CELL ISN'T SMALL WHEN IT'S IN YOUR BODY. THE PET SCAN SHOWED THAT ONE WAS COMPLETELY GONE AND THE OTHER ( ORIGINALLY 8MM.)
WAS NOW 3 MM.. THEY PUT ME ON LYNPARZA (OLAPARIB). CHEMO ENDED LAST MID NOVEMBER AND I STARTED PARP 12/21/19. JUST HAD ANOTHER PET SCAN AND NOTHING SHOWED UP. IF I REMEMBER CORRECTLY, YOU WERE ON NIRAPARIB AND TOLERATED IT WELL. YOU'RE ALSO BRAC POSITIVE. HAVE THEY DISCUSSED TRYING
OLAPARIB AFTER YOU COMPLETE CARBO/GEM? I FOUND CARBO/GEM TO BE LESS
DEBILATATING THAN THE TAXOL WAS. LESS HAIR LOSS AS WELL. MY PROBLEM IS THAT FOR THE FIRST TIME IN MY LIFE I GOT PNEUMONIA OR PNEUMONITIS. HONESTLY, I DON'T KNOW THE DIFFERENCE AND NEVER ASKED. THAT WAS JULY,2019 ABOUT 2 WEEKS AFTER STARTING CARBO/GEM. NOW ON PARP GOT IT AGAIN IN JANUARY AND REFUSED TO STAY IN HOSPITAL. I GOT VERY HIGH DOSE
AZITHROMYCIN AND WAS FINE IN A WEEK. DRUG INFO SAYS PARP CAN CAUSE PNEUMONITIS. GEMZAR TELLS YOU TO LET DOCTOR KNOW IF YOU HAVE ANY RESPIRATORY PROBLEMS, WHICH I DO. I MENTION ALL OF THIS TO MAKE SURE YOU
DON'T IGNORE ANY RESPIRATORY PROBLEMS WHILE YOU ARE ON THIS CHEMO.
I HAD IT IN THE PERITONEAL WALL ALSO. I HAVE ALWAYS WONDERED AND WILL ASK SURGEON AT MY NEXT APPOINTMENT WHY THEY DIDN'T DO IP CHEMO.
WOULD THIS BE AN OPTION FOR YOU?
YOU'RE A VERY STRONG LADY AND THE GOOD NEWS IS THAT IT DIDN'T GO ANYWHERE ELSE. WANT TO MAKE A PINKY BET THIS WILL WORK? I THINK IT WILL.
Wow! You're the first person I "know" to have the virus. No wonder we didn't hear from you for a while. Glad you've recovered. I suppose you could have caught it from another diner in the restaurant instead of the train or hospital.
Sorry the trial didn't work out. There'll probably be others further down the line. I had cisplatin and gem (together with a trial drug) and found it very tolerable. My hair thinned which I think is the gem. I did have a blood transfusion right near the end as haemoglobin was quite low and I'd planned a trip to Bruges. I also needed one injection for low neutrophils two weeks later as I was going to Amsterdam. Yes, never do what I did, wake up in the early hours and armed with a debit card and think, whoopee, my chemo will be finished in a couple of months, where can I go if I have to fit it in with weekly clinic visits? Disregarding completely that would mean travelling when it's quite cold. Snow in Bruges even. The chemo worked but once it had stopped things slowly came back as the trial drug didn't do much.
OMG well done for over coming the virus🙏 Just been told after 3 caelyx not working! Tomorrow on penbury hospital for a stent to go in my sigmoid colon as I keep getting close to a blockage! 20 days of what felt like my worst labour pains😂 then onto taxol! Not sure if anyone has any experience in this procedure as well as good results! Trying to keep pecker up ! What next there’s no let up! More worried about going in hospital 😬 all the best Laura xx
Wow Laura you are one tough cookie. I have not heard of anyone recovering from Covid 19 whilst immuno suppressed. You give us all hope. Thank you.
I'm so sorry that the dice trial did not work out for you especially when it involved so many trips to London when you weren't feeling at your best, but you gave it your best shot. It might have worked and you won't be left wondering if you should have tried it.
I was on carbo/gem until 3 weeks ago. I found it the most doable of any of the treatments so far and was even able to drive myself to and from oncology on the week when I had Gem on its own. I wish I could have continued on it but unfortunately my nodules and lesions kept growing. I hope it is successful for you as it has been for lots of ladies on this site. Sending a big virtual hug Sian xxxxx
WOW you are one strong lady who gives us all hope. I thought getting the virus would be a death sentence for us but you have proved otherwise thank goodness. Looks like a number of us are going to get our chemo cancelled as they don't want us to go to hospital. Strange to think there is something out there worse than our cancer - who would have thought it a few weeks ago.
Good luck with the carbo/ gem, I hope it works for you. Keep us informed - I hope you know how much you are loved on this site. Jenny xx
Dear dear Lindaura, it’s inconceivable that so many dreadful things can happen to one person. Especially one who cares and helps so many of us I. Our time of need. At least now you have had the virus and come through it you can continue with more chemo, which I pray works for you.
I started on Niraparib approx 4 week ago without side effects. However after 2 weeks my platelets had dropped to 9 so had to have a blood transfusion. Platelets rose to 49. The oncologist rang to defer my pending appointment for 2 weeks and said no more treatment because of coronavirus and low immune system. No even on a lower dose. Next appointment may well be by phone as they naturally want to keep us away from the hospital. I’m praying the blood tests can be done at home or the GP surgery. I’ve already posted all this a few days ago and it seems chemo is being postponed for the unforeseeable future For many other ladies. All extremely worrying when you know tumours are growing inside us and we feel we’re dying on the outside.
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Can anyone feedback information on the DICE trial please? 
