Fighting for better Options: Hello everyone, This... - My Ovacome

My Ovacome
12,536 members15,048 posts

Fighting for better Options

Lindaura
Lindaura
74 Replies

Hello everyone,

This is my update from my disappointing realisation that even though I am BRCA 1 positive, Niraparib was not the saviour I had hoped it would be.

Yesterday, I met with my Oncologist, bringing along my daughter and husband for back up.

As expected, my CA-125 continued to rise, from 33 to 59. That is a slow trend compared to my first recurrence, when it doubled every week.

I therefore presumed that the Niraparib was slowing progression and asked to have the Niraparib dosage increased, as I have few side effects and am on 200 mgs.

My Oncologist poopooed this idea.

She also told me that I could not switch to Olaparib, another option I was entertaining. That I could not qualify and if Niraparib didn’t work Olaparib would not either.

I am having another CT scan next Thursday, and a follow up appointment with my Oncologist two weeks later.

Yesterday’s appointment was for me to be prepared for the likely outcome and to discuss my options for treatment.

My main interest is having a second surgery and then chemo for clean up. Again, my Oncologist said that this was not an option. However, I kept pushing, as I am strong and healthy, had no problems from my debulking surgery, no adhesions, no hernia, and my scar has all but disappeared - alnd the cancer is concentrated around one spot in my peritoneum.

So, finally, she promised to advocate for this at the next MDT meeting, but had little faith in my surgeon agreeing.

However, she had some hopeful Options: She said that she could organise the following, if I so chose:

1. Refer me to Prof F, who might agree to operate.

2. Refer me to the Royal Marsden, where they are trialing Olaparib combined with weekly Taxol.

So, crushed, but hopeful, I went on an eating binge all afternoon.

But today is a new day and I am ready and willing to fight on.

In other news, I talked to Penny in the waiting room, whom I met on this forum. It was heartening to see how cheerful she was on weekly taxol and that she is doing well on that regimen, which will be my fallback option. I am grateful to this forum for introducing me to a fellow battler living in my town.

Sigh...

Keep up the fight!

Laura

74 Replies
oldestnewest
Pendle99

Hi Laura,

It was so lovely to see you too. A fellow warrior. And you recognised me despite me modelling the 'very thinning but not quite bald' hair look. Obv I forgot to blow dry it and add the essential volumising hair products 😂😂.

Keep fighting gorgeous. You are so very strong. Unfortunatley, I am not eligible for the trial Dr B mentioned to you. I just have good old pleural effusions, comedy CA125 numbers and no measurable disease.

Keep me/us posted as to what you plan and remember this is about You and you are not a number!

Pen xxxx

Reply
Lindaura
Lindaura
in reply to Pendle99

Thanks, Penny,

You are adorable and far too young to be joining this battle.

My daughter Jane was very pleased to have seen you. It’s good for us to have fellowship among warriors.

Hugs,

Laura

Reply
lyn1987

Hi Laura - so sorry your appointment didn't go according to plan. Here's hoping that prof F and the Marsden come up with a new plan. Good Luck x

1 like
Reply
Lindaura
Lindaura
in reply to lyn1987

Thanks, Lyn,

Fingers crossed my own surgeon will relent.

Keep up the fight!

Laura

1 like
Reply
lyn1987
lyn1987
in reply to Lindaura

Have you investigated HIPEC - not sure if it is available everywhere but I have read that the Christie in Manchester use it. You could get a second opinion from the surgeon at the Christie who I have read is very willing to operate when other surgeons have declined. I forget his name but hopefully someone on here can enlighten. Good Luck x

Reply
Mptelesca

So sorry you are going through this, Laura. It’s just a bump in the road. As you know how strong and positive you are, you can push through this. You feel and look great. That’s 90 percent of the battle. Our medical professions have to and will find the right cocktail to rid you of this.

Who knows, perhaps the scan will be clear. If they do see something that is located in one area as you said, surgery should be an option.

Between now and then you will be worried, however, I know you know how to work through this with your positivity and kick ass bravery.

Fingers crossed. Let us know. Please.

Xox

Marisa

1 like
Reply
Lindaura
Lindaura
in reply to Mptelesca

Thank you Marissa,

I already feel stronger after your remarks!

Hope you are also doing well,

Hugs,

Laura

1 like
Reply
Mptelesca
Mptelesca
in reply to Lindaura

And there’s my lovely, strong Laura! You always give the best advise and are so supportive to everyone.

I am well, thanks! Just going through some non medical issues as I once heard, you are as happy as your saddest child. When life happens, good or bad, it truly makes me forget the health battle we are fighting.

Xox

Marisa

1 like
Reply
Caleda4

Hi Laura,

Sorry to hear that the treatment you havhad has not worked. However you are a tough lady & I think that if you get a second opinion & maybe go for the op if offered or Olaparib plus taxol.

Take care, Love your upbeat nature. xx

Reply
Lindaura
Lindaura
in reply to Caleda4

Thank you,

Strangely, I do not feel so upbeat, but I am pretty energetic.

And focused too.

Keeping up the fight,

Laura

Reply
Caleda4

Sorry spelling meant to read have had.x

Reply
Birdsong222

Hi Laura

Thanks for the update. Good that your CA125 is only increasing slowly this time. I assume you are otherwise symptom free. I love your inner strength, this will always see you through the disappointing times. Really pleased that your consultant came up with some options, sounds like she is on your side. Keep pushing for the treatment you feel is right for yourself.

How lovely that you met another OC lady to chat with face to face. I've never come across anyone with oc, not even at the oncology out patient clinic or whilst in hospital.

This awful disease has no easy path and often feels like its up hill all the way. Walk the walk and show us the way Laura.

Sylvia x

2 likes
Reply
Lindaura

Thanks, Sylvia,

It is both wonderful and frightening meeting another one of us in the flesh. Our stories can be heartbreaking. But our journeys do tend to intersect and a smile from a knowing friend can be really supportive. Everything is just so tenuous and you never know when the rug is going to be pulled out from under you.

I hope all is well for you.

Keep up the fight!

Hugs,

Laura

1 like
Reply
LittleSan

Keep going Laura. It does at least sound like your Onc is a good advocate and you have great options open. A second opinion re surgery I feel is wise. I would have 100% faith in prof F. Keep pushing there are so many options out there these days. I'm doing well on my trial. Just had the last of 18 weekly Taxol with Cediranib daily tablet and at my last review 3 weeks ago my ca125 was 180 from 10,780!!! I hope the results of my CT bears good news too.

Take care and keep us posted.

💐😘

2 likes
Reply
Lindaura
Lindaura
in reply to LittleSan

Wow! You have crazy numbers! What our friend Penny would call “comedy” numbers!

Glad to hear you are doing well.

I just hope one of these options pans out for me.

Hugs,

Laura

Reply
LittleSan
LittleSan
in reply to Lindaura

Oops just edited my typo. My ca125 was 10, 780 which I suppose is a comedy number still! They avoided telling me how high it was at the time and I swerved asking. I think I suspected it was horrendous and it would have scared me witless! xx

1 like
Reply
Lyndy

Good for you for challenging and getting some options on the table!

Hope it does work out for you xx

Reply
Lindaura
Lindaura
in reply to Lyndy

Thanks Lyndy,

Sometimes we just have to fight.

I just hope something good comes out of all this.

Hugs,

Laura

Reply
sticky3006

Thank you for the update and good to hear that you are pushing for another opinion. Even if the 2nd opinion is the same as the first I think it’s imperative you have another dr’s view of the situation. You sound like a tough cookie so stay on the ball and keep reading. Knowledge is power my grandma always used to say! X

Reply
Lindaura
Lindaura
in reply to sticky3006

It’s a shame, because I really like my Onc, but I am afraid that she is stuck on protocol.

I know she’s knowledgeable. I just wish she was willing to push the envelope a bit more.

Thanks for the encouragement,

Laura

Reply
Seasun36-uk

Hi Laura,

Wow! We all need more of your tenacity when facing our Oncs!

If you hadn’t persisted, your Onc would have closed the surgery option!

Well Done Laura & keep up the fight!

Linda x 🤺

1 like
Reply
Lindaura

Thanks,

I went in to that appointment ready and willing to do battle.

Not sure if I really won anything, but I am hopeful.

Hugs,

Laura

Reply
bluepeterella

Sorry things have been disappointing but at least there are plenty of possibilities for you now. It’s great that you have an oncologist who you can discuss all these options with. The taxol with oliparib sounds interesting , and surgery by the Prof not to be sniffed at! Good luck with finding the right way forward x

1 like
Reply
Lindaura

I am hoping for surgery and wish our guy here would be willing to do it.

It’s not like the cancer is in a difficult spot, wrapped around a vital organ or something.

They are just sticking to the protocol. It says “no second surgeries”, so no is the simplest answer.

But not a satisfactory one.

I will go to the prof if I have to. She can only say no.

Thanks,

and keep up the fight,

Laura.

Reply
Seasun36-uk

Hey Laura,

Did the Onc explain why no second surgery? Lx

Reply
Lindaura

She just said they think a second surgery is an unnecessary risk. They think a chemo regimen would be safer.

I disagree. I’d like to talk to the surgeon myself, so if I get no again, I will try to speak to him directly.

Hugs,

Laura

1 like
Reply
Tesla_7US
Tesla_7US
in reply to Lindaura

Second surgeries can be highly effective and save you the damage of chemo. They are not unusual here in US because insurance will pay for them.

Reply
Coldethyl

Sorry that things not working out as you’d like but you sound to have options and it’s good your onc is prepared to mention surgery at the MDT- fingers crossed the scan shows minimal disease and that you have a good plan to work with going forward x

Reply
Lindaura
Lindaura
in reply to Coldethyl

Thanks, Ethyl.

Just hoping for an honest evaluation of what the very best treatment is. And how I am doing right now and how I will fair in the near future.

Hugs,

Laura

Reply
Clar0805

Sorry it’s not worked out as planned. It sounds like there are some good options there for you to investigate. I felt reassured when my doctor said it’s a tricky cancer but there’s lots of things we can throw at it ... I guess the trick is to find the right one for you. Good luck going forward xx

Reply
Lindaura
Lindaura
in reply to Clar0805

Thanks so much Clare. I guess I want more suggestions from my Oncologist that sound both effective and tolerable.

Hugs,

Laura

1 like
Reply
delia2

So sorry the PARP has failed you! However you do have some good options and a supportive oncologist. Wishing you the best.

Reply
Lindaura
Lindaura
in reply to delia2

Thanks, Delia,

It’s true. At least we do discuss options, even if I think they get dismissed too soon.

Hugs,

Laura

Reply
WoolyHat

Keep up the fight, Laura! You are mighty!

1 like
Reply
Lindaura
Lindaura
in reply to WoolyHat

Right back at you,

Warriors all!

Hugs,

Laura

Reply
gmc920

Thinking of you Laura, and rooting for you to keep fighting and advocating for the best treatment. You are strong and inspiring!

xx Gina

1 like
Reply
Lindaura

Thanks, Gina,

This disease makes warriors of us all.

Hugs,

Laura

Reply
Lind58

Wishing you the best❤️ Your strength truly radiates

1 like
Reply
Lindaura
Lindaura
in reply to Lind58

Thank you, Linda.

Sweet words make me smile.

Hugs,

Laura

Reply
Fred22

You are definitely doing all the right things. I will be thinking of you and sending every good wish. For what it’s worth, my Ca125 is also rising 3 months after finishing front line chemo and last month I asked my surgeon (at the Marsden) whether he would operate again if this proves to be a recurrence (as was worried because I’ve heard that they often don’t want to) and he said ‘definitely ‘. I was very reassured. So the Marsden could be a good option on all fronts. Wishing you all the very best. Fionax

Reply
Lindaura
Lindaura
in reply to Fred22

Thanks for that Fiona.

Can I as who your surgeon is?

And have you been happy with your treatment there?

One thing about our local hospital is that they do respond quickly, even if not always in the manner that I wish...

Thanks again,

Laura

Reply
Fred22
Fred22
in reply to Lindaura

Hi Linda. My surgeon is John Butler at the Marsden in Fulham. I’m very happy with him. Slightly less enamoured with the oncologist who I don’t find very patient friendly always but am pretty sure I’m getting good treatment really. JB is fab. I like him as a person and have felt right from the beginning that he really cares! I would have full confidence in him re another op. Let me k ow if you have any other questions and I’ll do my best to answer them.

Fionax

Reply
Di16

Sometimes a 2nd opinion helps. A couple of years ago, my oncologist contacted the surgeon who had previously operated on me. He was very unhelpful, refused to consider further surgery, because of the risks involved. So the onc contacted a surgeon at another hospital who said that although it was risky it was doable, & he was willing to operate. I hope you get the treatment that is best for you. Di

Reply
Lindaura
Lindaura
in reply to Di16

Thanks, Du,

You have certainly persevered. Where did you wind up going for second surgery - and I know you’ve had further ones.

Are you still with the same team?

Hugs,

Laura

Reply
Di16
Di16
in reply to Lindaura

I'm normally treated at Addenbrookes, but had my last operation at the Norfolk and Norwich Hospital. After a follow up appointment with the surgeon, he referred me back to the medical oncology team at Addenbrookes, where I'm still being treated. Di

Reply
Lucidalil

Hi,

I am sorry the part didn’t work for you. I am BRCA1 breast cancer in 1999, ovarian 2013. (Marsden patient since 1999)

I trialed olaparib In 2013 for 2 years , although blind trial I did have the drug I found out later. It worked well for me then giving me Ned for 2.5 years.

I was on it as part of the octova trial last year and the year before having taxol first which went well for 8 months then switching to olaparib which unfortunately stopped working for me after 7 months.

The good news for you is the Marsden do a second op in certain circumstances I didn’t have one but a friend of mine here did and is doing very well.

I am off to the drug development unit next week to see if any trials are available for me .

I am still 3c after 6 years have been trending at good shrinkage with chemo then grows back over time. Although my marker has gone from 22 to 680 this time my tumours have just tended to go back to the size they were and luckily no new growth. Onwards and upwards 😁😁

Reply
Lindaura
Lindaura
in reply to Lucidalil

Thank you for those encouraging words.

Interesting that the Marsden seems to be beckoning to me.

I have not done any research on London hospitals, but I guess the time has come.

I am being referred to a prof there, whose name I forgot, who is running a similar trial to your first one.

It’s still disappointing to hear that Olaparib stopped working for you, as you are BRCA1 positive.

Can you tell me the name of the prof you saw there?

Thanks and very best wishes,

Laura

Reply
shortfriends

Hi Laura (mighty warrior and inspiration to us all!) I am sorry you are having to go through this and hope you get prof f if necessary. I anyone can do this it is you! You have all your sisters behind you, sending you positive vibes, lots of love and hugs.

Pat xx

1 like
Reply
Lindaura

Thanks so much, Pat,

I feel very supported and I am girding up my loins in preparation!

Hope you are doing well.

Hugs,

Laura

Reply
Harrygirl

Hi Laura,

Good for you for being your own best advocate! I share your frustration with your Onc’s insistence on sticking with protocol when this disease certainly doesn’t stick to one!

I hope you have a productive discussion with the 2nd opinion dr, and that someone agrees to another surgery for you.

Fingers crossed for your lovely strong self and big hugs,

Christine xx

Reply
Lindaura
Lindaura
in reply to Harrygirl

Thanks Christine,

All these words if encouragement make me feel even more determined.

Keep up the fight,

Laura

Reply
ellseybellsey

Hi Laura, I am sorry to hear your appointment with oncologist didn’t go to plan, I watched a video of Prof F on YouTube yesterday she was discussing surgery for reoccurrence, she has said she wouldn’t refuse surgery if she is positive that it is only small progression, or in single site.

Ellsey xx

Reply
Lindaura

Thanks so much for that.

I just hope I fit her criteria and she has time for me.

Best wishes and hugs,

Laura

Reply
Nikkimcmahon

My hospital wouldn’t do surgery on my second recurrence.I remembered watching a hospital documentary a couple of years ago which followed surgery by prof F on a fellow member nicky100, I asked to be referred to her for a second opinion in November last year and after a consultation amazingly she agreed to do the surgery. She is a fantastic surgeon and such a lovely lady with a really caring and committed attitude towards her patients. The op was a success and I am now waiting to start the maintenance drug Niraparib. I would definitely recommend her, she’s based at the Queen Charlotte and Chelsea hospital Hammersmith.

Good luck Nikki

Reply
Lindaura

Thanks so much, Nikki,

Your story gives me strength!

Hugs,

Laura

Reply
Litchick

Hi Laura,

Sorry to hear you didn’t get the best news at your consultation but I’m hoping that the MDT listen openly to your case . Well done you for being your own best advocate but I want to rage against the injustice of we OC women having to fight our corner when we are vulnerable .

Sending you very best wishes . xx

Reply
Lindaura
Lindaura
in reply to Litchick

Thanks for that.

All patients, no matter what their issues or problems, in every country, need to be strong and as informed as they can be. It’s almost always a battle just to get listened to.

Hugs,

Laura

Reply
Purple-iris

Hi Laura

Sorry you are having to deal with a recurrence but keep pushing for the treatment plan you feel is right for you.

I’d definitely get a second opinion re possible surgery and trial drug options at Royal Marsden , even if you then decide to stay with your team.

Sounds like your hospital need strong women like you questioning their treatment options to push them to make sure they are considering all the options, especially at present as protocols are changing and treatment is becoming more and more individualised.

Love and best wishes Kim x

Reply
Purple-iris

ovacome.org.uk/Pages/Catego...

You’ve probably already seen it but this is the link for the talks on members day by Dr Susana Banerjee, Consultant Medical Oncologist at The Royal Marsden NHS Foundation Trust

And Professor Christina Fotopoulou, Consultant Gynaecological Oncologist at Queen Charlotte's and Chelsea Hospital

Met ladies at the event who spoke very highly of both. X

Reply
Lindaura

Hanks so very very much for that.

I could not remember Susanna’s name! She’s the one my Oncologist likes and Fotopoulou

Is the surgeon I must chase myself.

Hugs,

Laura

Reply
Lucidalil

Hi again Linda,

I don't think we can name names but my oncologist is the one mentioned in the post above at the Marsden. Lovely lady who is very approachable 😀.xx

Reply
Lindaura
Lindaura
in reply to Lucidalil

Thanks. Reassuring to know.

More hugs,

Laura

Reply
janwen52

Hi Laura

Sorry Niraparib has not been the answer for you. Similar problems for myself but I am a little ahead of you and have today opted for third line chemo (carboplatin).

Wishing you well, keep on fighting.

Best wishes

Janet

Reply
Lindaura
Lindaura
in reply to janwen52

Yes, my journey began almost exactly two years ago, 5th of August 2017. Still fighting. Glad to see you are too.

We shall be warriors.

Hugs,

Laura

Reply
marylondon

Best wishes Laura for not leaving a stone unturned . We all admire your determination & strength .

Mary

Reply
Lindaura
Lindaura
in reply to marylondon

Thanks, Mary,

This cursed disease keeps taking our sisters away and I am heart broken that it is so relentless.

I think we have no choice but to fight on.

Hugs,

Laura

Reply
Bettyxxx

Hi Laura

I had second surgery with prof F in jan 2018 after recurrence, we went just to get a second opinion and she blew us away, after meeting her there was no other choice, her stats for stoma etc are much lower than the national average . She expects a lot of you and takes no prisoners but she is so lovely. I still keep in touch with her and she has given advice on my further care a couple of times, i cant speak highly enough, message me if you want any further info and good luck in your journey

Love

Diane

X

Reply
Lindaura
Lindaura
in reply to Bettyxxx

Thanks so much, Diane,

Can I ask: did your Oncologist refer you to Prof F or did you approach her yourself first?

I would like to get this referral started, but my next appointment with my Oncologist is not until 5 of September, when I will know what our MDT team has decided.

I know that’s only 2 and a half weeks away, so I guess I should be a patient patient, but....

Anyway, I thank you again and hope that you remain healthy and strong.

Keep up the fight!

Hugs,

Laura

Reply
Bettyxxx

Hello Laura

We rang and asked prof f’s secretary how long for a private appointment and we saw her the next day. My consultant agreed to a second opinion from her and they forwarded all the scans and things. I didnt wait for my mdt meeting i just said i would like to know what my other options were elsewhere and they were fine with that. So by the time the mdt had met we had 2 options. I think we have to be our own advocate and if you want another opinion then you should go and get it xx and once i made my mind up i was not a very patient patient 😂😂 my team are lovely and i am very happy with my care but sometimes they need a nudge to look outside the box xx

Good luck

Di

Reply
Lindaura
Lindaura
in reply to Bettyxxx

Thanks for that encouragement, Di.

So many have bravely gone for that second opinion and I shall also.

You have also given me that nudge.

Hugs,

Lay

Reply
Nicky100

Hi Lindaura, it sounds like you’ve got some options on the table and you’ve done good research. There are some incredible teams in London that you should talk to who’ll give you hope and really up to the minute advice on treatment.

If you need any info do pm me. There are things you can do to help yourself I promise! xx

Reply
Lindaura
Lindaura
in reply to Nicky100

Thanks, Nicky,

I feel pretty well armed to take in my team and look further a field if necessary.

Keep up the fight!

Lay

Reply
maggie22

Hi Lindaura

This is just to let you know that Olaparib was not the saviour I was hoping it to be. Hopefully it will work better for you than me. I have a BRCA mutation and was on a trial and my cancer markers were just increasing. I was taken off this an put on taxol, but again my cancer markers were going up. I have been refused surgery to remove the cancer which is behind my ribs, as I have lymph nodules under my arms so the surgery would not make me cancer free as they wont operate to remove the nodules. To give me breathing space as I found taxol extremely difficult I am on tamoxifen for 8 weeks. I was told tamoxifen has a 20% success rate for ovarian cancer.

Early November I meet with my oncologist and would appreciate help with questions. In 2011 I had debulk and carbo, 2018 had chemo again, radiotherapy , 2019 , the trial for Olaparib and taxol. Not sure what is open to me and where to go from here

Fingers crossed it works for you.

Reply
Lindaura

Oh dear, Maggie,

That is a LOT of bad news to take on board.

It looks to me as though you need something more. Perhaps a trial, but perhaps something else.

Where are you located?

I am in England and like you, the PARP did not save me, so I am currently on weekly Taxol combined with a trial drug I am involved in at the Royal Marsden.

But, like you, it is all too rough, and currently taking a break from treatment.

But, at my first recurrence, I had Carboplatin combined with Caelyx and I found that much more tolerable and it shrank the cancer growth right up.

Maybe check that out.

There will be a bevy of clinical trials coming up for us BRCA positive ladies who have proved resistant to the PARPS, but we have to be off the PARPS for 6 months first.

So, be prepared to wait. Look up trials in the UK Clinical Trial gateway and keep up the fight!

Hugs,

Laura

PS: the research head here is Susanna Banerjee

The Royal Marsden

London

Reply

You may also like...