Yesterday was the Oncology appointment I have been breathlessly awaiting since my CA-125 started rising 6 weeks ago.
I have put the six weeks to good use, getting my bills up to date, organising my house, and getting my small business in shape for my husband to run without me.
I also had 2 more CA-125 tests to keep a check on myself, which showed a tripling in the numbers over this time. My CT Scan was last Sunday.
My family, husband and adult daughter, who is now living with us and is on her own path for risk-reduction surgery offered by the NHS for BRCA1 positive women, are ready to care for me if treatment becomes difficult.
I read up on therapies and new treatment options for BRCA1 positive ladies, feeling sure that I was experiencing a recurrence, but afraid my Oncologist would say let’s watch and wait. All three of us came to my appointment, so I had plenty of support.
The doctor looked concerned when we entered the room. I looked great and healthy, because I wanted to make certain she knew I was a good candidate for treatment.
My fear was that nothing would show up on my Scan, because I actually felt as good as I looked.
She surprised me by telling me that the scan showed multiple growths on my peritoneum. But thankfully, nothing on my lungs or liver or bowels or on any of the few organs I have left!
So good news/bad news.
I thought that the regime for first recurrence for BRCA1positive would be the same as first line: Carbo/Taxol.
So I was dismayed to hear that this was an unexpectedly early recurrence. It came as much as a surprise to her as it was to me.
I was totally clear at the end of my first line. She thought I was in the very best position a cancer patient could be.
So I am catagorised as an early recurrence, but luckily my BRCA1 positive situation, kept me able to have carboplatin again. Usually an early recurrence dubs you as “platinum resistant”. Phew.
But instead of Taxol, I will be having Caelyx. So Carboplatin and Caelyx will be the regime.
I did try to get another operation as well as weekly Taxol and my doctor said she will bring it up at Wednesday’s team meeting.
But here I am. Chemo set for two weeks away. I forgot to ask about the PICC line, but I will call my CNS tomorrow to arrange that.
Now that we know this is for real, it makes me sad, but resigned. The early recurrence designation makes me realise that I will probably be fighting this disease forever.
Oh, I WILL be getting Niraparib at the end of Chemo, although I requested Olaparib, but either one is a good alternative for me.
So, wish me luck and thank you for listening.
Kind Regards,
Laura
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Lindaura
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|Hi Laura Firstly.... stunning photo! How long since you finished first line chemo. If it's over 6 months then you are considered platinum sensitive, hence you are being given Carboplatin. My first recurrence was 4.5 years after initial diagnosis and my second was within 18 months of that. I am now over 5 years on from the second recurrence and on a trial for Olaparib. The point I am trying to make I suppose is that just because your recurrence is 'early' doesn't mean you cant go on to enjoy a longer remission next time round. Glad to hear you are being given the chance of a PARP (I'm BRAC2 btw). Take care and I hope chemo goes well (or as well as it can). Big hug. Kathy xx
I guess because my Ca-125 was over 60 at 6 months, and 11 at 3 months, my Oncologist considered that the cancer had started to return sometime in between, so she was offering the Carboplatin because BRCA1 folks are supposed to stay sensitive to it.
I am planning, too.
So glad you are on the Olaparib. How are you doing on it? Are your red cells okay?
They will only offer the Niraparib here and I have seen studies showing that the Olaparib is better!
Really sorry and surprised by your news Laura! Did you have Avastin after first line? If not that might be another possibility to explore. I think the Avastin really helped me have a long remission. Best of luck with your chemo...I will be watching you closely because I think I will also be under starters orders for second line this Friday xx
Sorry you’re back on the chemo train - you look great and I’m sure your overall good health will stand you in good stead for more chemo and then a PARP - sadly this disease doesn’t seem to play by the rule book so some do really well that you’d think wouldn’t and others surprise their oncs! Thinking of you and wishing you well x
I agree with what Kathy says and you mustn't give up or be down just because you are on the treadmill again. I've never really been off it and I still cannot believe that I'm still here just over a year since diagnosis. I thought I would be gone by now. I've never been off chemo yet and this last year nothing has worked for me. The majority of the work was done first off. Now I'm on a new one - Hycamtin - and I'll find out in December if that is doing anything. But, I feel fine and just carry on living with cancer - with the emphasis on the living part. You look so well and lovely in your photo that I'm sure you can do the same. There are many kinds of treatments out there so don't give up just yet. Big girl's knickers and all that. Good luck on carbo/caelyx and get some good skin lotion in as caelyx plays havoc with the skin. I'm glad to be off it early to be honest but apart from that I didn't get much else side effects. The anti-sickness meds worked well. There's loads written about it on the forum. Hycamtin doesn't give me any side effects whatsoever - not one - so is it working? Only time will tell. Love and hugs xxxxx
Well, all Saggies together. You know we are the happiest, most optimistic birthsign so I don't know how to be anything else. But, there are dark days of course. Try to ignore those in the end otherwise they take a hold. The car crash is fading into the abyss but the whiplash lingers but I'm having treatment for it with a mad french woman who doesn't stop talking the whole time and I'm supposed to be relaxing. I shall say something next time as I get a half hour's french lesson and I could do without that every bleeding time. xxxxx
By the way, if you look up Hycamtin you will see that it's made from the HAPPY TREE. How could it fail?
Not the news you want, but you are ready to tackle this again. I’m having Carbo/Caelyx for my first recurrence - there are lots of hints and tips about managing the regime on the forum. I’ve been lucky in that I haven’t had the potential skin problems - I use a number of moisturisers including Udderly Smooth, Nivea Soft and Aveeno which is prescribed by the hospital. The one that works really well for me is Nivea In-Shower moisturiser which you put on in the shower and rinse off - sounds unlikely, but it seems to do the trick.
Keep us posted as to how you get on - you look great in your photo!
Hi Laura, I’m happy to share my experiences, but do search for Caelyx on the forum, lots of people have posted their experiences and it doesn’t affect everyone the same.
I’ve had four of six treatments and to be honest, I have found this regime quite tough but not impossible. My major problem has been bowel related, no blockages, but constipation which I have pretty much sorted now with a regime of sodium docusate and Laxido (I had this problem with Carbo/Taxol too).
I have an anti-sickness drug called Akynzeo which I take on the morning of chemo. It lasts for five days; I have the usual steroids for three days and then take Domperidone for a further three days. I was warned last time that people who are prone to travel sickness (me!) may be more likely to have chemo sickness - not sure how true that is - I’ve not actually been sick, just feel nauseous and a bit dizzy. Fatigue in the first couple of weeks is hard, but for me wears off in the second two weeks. I had low neutrophils when I was due to have my third treatment, so I now have an injection which I give myself the day after chemo - not everyone has this - to boost them.
I have two treatments to go, and as my midway scan is showing reduction of lung nodules and stable disease in my abdomen as well as a reduction in my CA125, the last two are doable. If I have a good response, I should be eligible for Niraparib too. I haven’t lost my hair, nor has it thinned which it does for some people.
Because my CA-125 had already reached 68 from 11 3 months before and my scan showed multiple growths all over my peritoneum, the doctor considers that the recurrence started before 6 months.
At any rate, she is still giving me the Carboplatin, but instead of Taxol, I get Caelyx, which I have heard conflicting reports about.
Hope you are doing well and if you have any experience with Carlyx let me know!
That is a great photo, Laura... with a killer makeup, wow. I'm sorry about the recurrence news though. Glad you have your daughter live with you.. that way, you can support each other a bit. Crossing my fingers for the chemo to work, so you can get access to the parp inhibitor quickly and then enjoy a long remission. Hugs. Maus
No, sorry Laura. Just had Carboplatin, Paclitaxel and Avastin so far.. oh and Letrozole and Tamoxifen. But who knows.. maybe at some point I will ask you about your experience, if those meds are ever on my treatment plan. Fingers and toes crossed for minimal side effects, and the best results. xx. Maus
Hi Laura , I am currently on Carbo/ Caelyx for first recurrence . I have had four of six so far . I haven’t lost any hair at all but have had minor skin issues , dry itchy arms and legs . Also after about 10 days a few mouth ulcers for which I have a mouth wash although oncologist says warm water and salt is best for gargle . I haven’t had any sickness but have definitely felt more nauseous on days 4 to 6 .I take all my steroids to combat this and a couple of days of domperidone . There are references on this forum about the cumulative effect of Caelyx and I have definitely felt more tired after this last infusion . The doctors say this chemo does more of it’s work at the end of the treatment so I am expecting this tiredness to continue until the end . My ca125 dropped by half after first infusion but I know this isn’t always the case from this forum . One other thing I always wake up on the day after the chemo to a bright red face as if I have been under a sun lamp , it disappears during the day . Good luck with the chemo , you can do this . Beautiful picture by the way xxJulia xx
Amazing photo of you! Sorry to hear about the recurrence, it’s such a bummer when feeling well. It’s good you can still have carbo. I had carbo/caelyx 2nd line, main problem for me was a nasty rash on arms and upper body and some nausea, it was doable though. It was every 4 weeks so that was the upside, less hospital appointments! You have a very strong mental attitude which will stand you in good stead. Wishing you all the best
Some reason some take an age to appear on my page!
Wow you look amazing! Very glamorous x
Fingers crossed this combination of chemo works well for you and your side effects are tolerable x
I’m hopefully starting on olaparib on Monday as part of the CEBOC trial but that’s only because the pesky blighters started to reappear elsewhere just before I finished the chemo arm of the trial!
Good luck and here’s hoping we both get a longer remission xx
Boy, you have really been through the mill. I have to ask:
What was going on with you when you were first diagnosed?
Most of us, it seems, in the UK, had our surgeries half way through our Chemo, which was usually Carbo/Taxol. But you had yours before Chemo...
Plus, I don’t understand why they did not remove your Omentom in the fists place???? Most of us have it removed as a matter of course.
Except for your being in this trial, I would suggest asking for more surgery!
That said, I am putting a lot of faith in the Olaparib and wish I was having it, too.
But I will get Niraparib later (although I hear that Olaparib is best).
It is just evil that your cancer never seems to get zapped thoroughly.
But, I have to say, both the Surgeon and my Oncologist thought I was in the best position possible at the end of my treatment and were genuinely surprised when it came back in 5 months.
Have you had the BRCA test yet???
Just seems necessary for all of us.
Meanwhile, lovely to hear from you and I hope you get good results from the Olaparib.
Also, just to add that my Onc has moved quickly and Chemo starts 29 of October, exactly 2 weeks from my appointment, so I am quite elated.
I have entered the curious phase: Wondering how I will do when I am starting out in such a healthy condition.
Hi Laura yes they did my surgery first although I do believe I would of been better having chemo first as I had to have ascites drained prior to surgery and I think the recommendation is if this happens chemo first! I’m sure if that had if happened I wouldn’t now have a colostomy but I can’t change that now! I also had a very slow recovery as I was so ill before surgery despite being generally fit and well before this beast visited me! I ran half marathons etc!
I’m BRCA negative but am currently undergoing genetic testing for Lynch Syndrome as my sister had uterine cancer. Thankfully she has been clear for 10 years now following surgery and carbo taxol.
I did ask Prof Jayson andout more surgery he just said no but I am considering getting a second opinion.
I too thought my omentum had been removed in surgery and my appendix but it appears not!
I am really disappointed in my surgeon despite him being a Prof too, as I think he didn’t provide me with a good service.
I truly hope the olaparib works as I’ve only had 4 months off chemo in the last 12 months and I therefore do not relish more anytime soon as I feel my body has been battered! Prof Jayson has said there are lots more options for me and he believes he will get me into remission!
Here’s hoping we can both achieve this and tolerate the treatments xx
Good luck for your regime and I will keep everything crossed for you xx
I am disappointed with your surgeon on your behalf.
But, like you say, that’s water under the bridge.
However,
I strongly suggest another opinion despite the reassurances of Prof Jayson, about another surgery.
Like you, I was super fit and well, until 10 days before diagnosis. Felt great until I suddenly didn’t.
Had loads of Ascites and Pleural Effusion that crushes my lungs, which were full of blood clots, so totally unwell during first course of Chemo, and then Voila! a week after second infusion, the ascites and pleural effusion disappeared! What a relief.
Then all good, through surgery and beyond, until now if course, so who knows?
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Fingers and toes crossed for minimal side effects, and the best results. xx. Maus
2nd Recurrence - treatment options
Update 
Stopping Caelyx halfway through 
? Recurrence
