Here is my update after a really thorough appointment with my Oncologist in Bath, with lots of input from my husband and daughter.
We all discussed the options and decided, together, not to pursue surgery at this time, as my new growth is very small and weekly Taxol would be the mop up after surgery anyway. So we will keep that on the back burner.
My Oncologist works closely with Susanna Banerjee and thinks the trial drug that goes with the weekly Taxol, TAK228, sounds promising, if I get that arm. If not, it will be weekly Taxol in Bath.
So, I am off to London today to sign up for the trial.
BTW: my last scan showed very slight progression, but my CA-125 went from 59 to 86.
I have been off Niraparib for 10 days! I am feeling fit and well.
I shall keep you posted.
Hugs to all,
Laura
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Lindaura
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Even though I don't get the chance to post regularly here, because my 2 small children keep me very busy (my 2 year old has a beautiful name: Laura ;), I want to let you know that you're an inspiration to me (and surely to many others), so keep on writing to let us know how you're getting on.
Wishing you luck in London today Laura. Sounds like either arm of the treatment should work well and I guess you will know rather quickly which arm you are on. Glad you had such a good meeting and that the family made the decision together! Looking forward to more updates! oxoxox Judy
I’m glad you’ve made a solid decision that you and your family are comfortable with. I hope you get the trial drug! At least in a trial you get close monitoring. By the way I saw an article posing the question of retrying Paros on people who were resistant to them. Trials may be coming in the future pairing them with other drugs in people like you.🌼🌸🌻
I heard that, too. I am not the only BRCA Positive person to be resistant, so there are trials in the offing. I have to be off a PARP for six months, before I can take part, so hence I am going for Taxol now.
Glad to hear your appointment in London has gone well. 🤞you get the arm of the trial you want and good news that your local oncologist is so supportive. Think you're brave to have a go at the cold cap. All the best Judith
That sounds promising Laura. At least surgery has not been withdrawn as an option in future. I’ve started Carbo/Gem/ Avastin for my second recurrence after Olaparib disappointedly failed - I’m Braca 1. I am very interested in the trial you are joining. Perhaps you could tell me over what period weekly taxol is being administered? Hope you get the TAK 228, albeit with journeys to London.
Weekly Taxol will be given for 3 weeks in and one week off. I think the tablets are added for two weeks during each cycle and the trial lasts for just six months.
There will be trials coming up for us BRCA positive ladies who are determined to be PARP resistant, but we have to be off PARPS for six months first.
Did Olaparib work for you at all?
How long were you on it?
Hope you tolerate your new regime and that it is effective, too.
I think we have to be hopeful whatever - it gives us a way of living with this on a bit of our terms at least - and by trying everything we know we’ve given it out best shot x
Hi, Laura! I must have written my response and then never sent it? I'm a bit scattered at times. I am doing well. I feel stronger than ever. So far, bloods are ok while on Zejula...will be one year on October 1st. Enjoying my granddaughter, Miss Ellie and just working and taking each day one at a time. I saw in one of your responses that you are a pop singer! How cool is that?! Do you still sing?.....By the way.....you still look young and beautiful.
XOX
Marisa
Hi Laura,
Hope all goes well and you get the arm you want.
I have just started carbo again for second recurrence, one step forward and two back!
I see that Niraparib was not your miracle drug either.
Did you ever have weekly Taxol?
My doc put me down as Platinum resistant, but I don’t think that’s true. Still, it will be good to have a break, so I can hit it again if ever I need it.
Now, the scales have fallen from my eyes and I realise that this is a battle that keeps on giving.
I will get through this, but another will make its presence known, so I am prepared to use all the tools available, even one at a time, and further trials in London also.
I wish you good luck on your ongoing Chemo. Stay healthy!
Yes I am BRCA negative. I had Carbo Taxol alongside Avastin three weekly, but could only handle two rounds of the proposed six before Taxol and Avastin were dropped.
Continued with carbo only for last four, and again for six rounds after recurrence.
I'm so happy that you made your decision and plans are in the process of being put into action.
It's great that the trial is now near to reality and my big hope for you is that it goes to plan.
I also made a decision not to use the cold cap in 2011 and this year forward few reasons. I react badly to the cold in winter with blue hands etc and the thought of feeling even colder put me off.
I wish you success in your latest treatment . You inspire many people with your wisdom and insight into this disease. I love your precise answers.
hi laura I had cold cap ,very doable ,ive just got my scan results,5weeks on niraparib at mo but ca125 now 220 scan showed 17ml on surface of liver and a nodule on spleen bowels ok at mo stable no fluid feeling well, consultant gave me all clear to fly to America 18 October with kids plus a letter ,problem getting insurance for cancer side , part of me thinks take a chance what a dilemma ! if my consultant is prepared to write a fit to fly letter im thinking hes putting himself on the line if I had problems.
any one else having a rise on ca125 while on niraparib , staying on it for a while to see if any effect , if not more chemo and I want second surgery which hes agreed to , so ladies what shall I do regarding my holiday with kids and anyone had luck with insurance in America. good luck laura it will work im sure xxx
you seem like a strong, beautiful lady and certainly inspire me to carry on with treatment. I'm 75 years old but still have a lot of living to do. I have a lovely little family and some truly close friends which as you know is a very important part of having the will to live as long as possible. I was diagnosed with stage 3c OC May 2018 after constant visits to the GP from February 2018. After Chemo and debulking in September my CT scan showed stable disease until a rise in CA125 to 23 this July. A CT scan showed 2 tumours, one very close to my liver and some peppering of cancer on my peritoneum. I'm now starting my first cycle of Carboplatin and Caelyx. Not lost any hair yet, however I'm prepared. Small price to pay for life.
I pray your trial is successful and look forward to reading further posts from you.
75 is the new 55, as far as I am concerned. We are vital women and have a lot of living and giving to do.
Carbo/Caelyx was very doable for me, although I spent the first week after infusion in bed, babying myself and being waited on hand and foot by husband and daughter.
Then I would pop out of bed and resume an almost normal routine, walks every day, and because there was no chemo fig, I could drive my car!
I did not lose one hair from my new blonde coiffure!
Dear Lindaura, thank you for your words of encouragement. Today has been so dreadful. My only brother passed away this afternoon after an 18 month painful fight with mouth cancer. I'm devastated. Trying so hard to forget my own problems in spite of chemo side effects and really bad constipation. I just want to curl and die tonight but I have to be there to support my dear, long suffering sister-in-law. She's fought so very hard for David to no avail.
This part of our lives has come as a shock. Our siblings and beloved cousins are all getting older, too.
More and more of us are suddenly getting cancer.
A lot of heartbreak is facing us, but we have to stay strong.
Meanwhile, you have got to get that constipation under control, whether you use docusate sodium, lacido, lactulose, Senachot or whatever, set up a regime. My daughter does everything each night, staggering the scenechot one night and lactulose the next. A glass of prune juice each morning.
thank you once again. I can't believe you replied so quickly. I've been awake since 4am and breaking my heart over coffee, pears and prune juice.
If there is one thing this diagnosis has done for me it's made me a more caring, more understanding and more generous lady. Until 2018 I thought I was going to live forever. Now all I want to do is spend money on my friends and family, constantly thank them for their strong support and see them as often as I can. I had to cancel a holiday to Portugal last month and a planned holiday to Disney, Florida in October because the insurance company refuse to cover me whist having treatment. However, I insisted on both occasions my daughter and family go without me despite strong protest. I have also insisted I cover 90% of the cost. It helps me get over the disappointment. My husband, Brian and I will be quite happy to take our future holidays in England. I don't need to spend money on myself as I feel I have everything that money can buy. I have had a difficult marriage due to my husband's "lifestyle" but once more this diagnosis has changed him considerably. He's practically given up alcohol (which frankly has made him a different person) and given up golf altogether. He rarely leaves my side and even allows me to have my friends and family round whenever I wish, something that has been a major problem throughout over 40 years of marriage. His job as a high ranking Police Officer took preference over everything and made him extremely anti social (except with his colleagues, both male and female) I have said far too much now and I can't understand why I've burdened you with this Saga. This morning I needed to pour out my feelings (without feeling
disloyal) to someone who doesn't personally know me.
If you're still awake and I haven't bored the pants off you I wish you all the very best with your treatment, long may it continue.
Keep fighting and posting. It seems a lot of us need to hear from you.
That was one of the most fascinating responses I have ever received. Unusually deep and endearing as well.
It is true, that I too planned to live forever and had not even noticed that I was no longer 26 years old, until I saw my actual age on my hospital discharge papers.
I was a pop singer and a performer for half of my life, so looking good and feeling young was my normal. Until this hit like a ton of reality filled bricks.
I must urge you, however, to disregard the English obsession with travel insurance.
There are no insurance police to stop you from travelling without it.
What’s the worst that can happen?
You have to cancel your holiday due to sickness.
Otherwise, if you get sick while on holiday, all hospitals around the world , even in the USA, will treat you. So there.
Meanwhile, I think that it is great that your family has pulled together, as mine has.
This disease does have a silver lining.
Also this Ovacome Forum has been a source of great support and wisdom, as well as tragedy and a constant reminder of our fragile hold on life and our own good health.
Good morning Laura, looks like you have become the "Matriarch" on HealthUnlocked. You're certainly becoming someone who everyone turns to in need of help and empathy. That's usually my role amongst my friends and family but I'm not on a par with you especially since this dreaded diagnosis.
About holiday insurance, I know many cancer patients risk going without it but my oncologist was adamant I shouldn't travel without it as there was a chance of sepsis etc.etc. which could cost approx. £100.000 in America. My recurrence involves 2 new tumours, one 3cms the other 5cms, plus some peppering across the peritoneum and a second operation was ruled out. He said the carbo/caelyx may or may not work but he would look at the results after the 3 months and maybe try something else if necessary. I didn't feel very positive after leaving his office but I appreciate he cannot give me any definite answers. I feel I'm repeating myself here (an age thing) My CA 125 had only risen to 36 before my first treatment so like you I'm not confident CA 125 is an efficient marker.
Well done you! I did a trial in London for a drug taken alongside weekly taxol and it gave me 10 months extra. It's the way to go if you're accepted and they keep such a close eye on you, you'll be in good hands. Best of luck Gina x
Hi Laura, I have also just signed up for the DICE trial and am having all the screening tests this week at the Marsden Sutton. Will let you know if I do get on! Good luck, fingers crossed for you.
I'm not BRCA1 positive. I have platinum resistant clear cell (now stage 4b - was stage 3c at diagnosis). I'll also stay with the paclitaxel only arm if that's what I get, luckily I live fairly close to the Marsden Sutton so the weekly regime should be ok. Caelyx was the other option for me, but Dr Banerjee thought this was a better of the two.
I do hope the travel will be ok for you and side effects not too bad. Let's see how things go.
It's been a year on Zejula. My CA creeps up a few points and then goes down one or two points just to make me crazy. Went for test yesterday and it went to 18 from 19. I know that sounds insignificant, but, I had recurred at 22 so I am always on high alert. Feel I can exhale for another month. Other than that, I feel stronger than ever. Don't know why. Could be the supplements I'm on with Nutritionist. She has me on all sorts of stuff to combat any side effects and keep the cancer cells from growing. I don't know how long this strength and energy will last, but, I will take it for now. Comes in handy chasing my 2 1/2 yr old grand daughter. lol. I work full time and then take her on Fridays.
I am very excited for your new treatment. I know you will do well. I am one of your biggest fans as you are always so positive and strong! Good luck and let us know how you make out.
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