Update rising Ca125 on Niraparib: Morning lovely... - My Ovacome

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Update rising Ca125 on Niraparib

Welshandproud
Welshandproud
44 Replies

Morning lovely ladies and thank you to all of you who replied to my previous post.

I had my ct scan on Wednesday and my consultant appointment yesterday. My oncologist was brilliant and very sympathetic. She gave me time to talk and really listened to what I had to say. She had a look at my scan and said that she would need to see the radiologist's report and measurements but that she could not see any ascites, which was a relief. She did say that my hernia is now very large with a loop of bowel sticking through. Unfortunately it is too big to operate. She thought that the patch on the liver looked like it had grown a bit.

She suggested me coming off Niraparib for a week to see if that made me feel any better. I am sticking on the steroids for another week as they are helping so much with the joint pain. She will see me again next Thursday to go through the scan with me

We discussed the next stage if,as we expect, the cancer is back. It would be weekly taxol for 18 sessions in 3 weekly blocks with a week between each block. I explained my worry about going back into chemo so soon after the last time but she said that the anxiety about whether I should or not was likely to affect my quality of life anyway and that at least the taxol was likely to give me further remission. This made sense to me.

I'm exhausted and worn out but I feel so much more reassured after my appointment. My onc also said that she will tell me when she thinks that more treatment are likely to be unhelpful but that we certainly aren't at that stage yet. A reason for hope xx

44 Replies
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Differentforgirls

Bless your heart.

Life is such a rollercoaster with this horrendous disease.

Glad your oncologist listened to you & gave you reassurance.

You take good care.

Happy weekend xx

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Welshandproud

Thank you. I ferl so much better for having the time to talk through my concerns with my consultant and she was so understanding. I wish you a happy weekend too XXX

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1916

Afternoon.

They sound like they are on the ball , I've just been left for 2 weeks tried to get earlier but can't do. I hope it goes well for you .

My problem is I only stopped chemo in august so I don't know where that leaves me.

Anyway your hospital sound really good sending lots of love.

Ann xx

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Welshandproud
Welshandproud
in reply to 1916

Thank you Ann. Yes I've been really lucky with my team. When is your next appointment? I hope you get some news soon. Sending you lots of love xxxx

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1916
1916
in reply to Welshandproud

Hi.

I'm not due until 19th Nov. But am waiting on a ultra sound in the view of drain

I never had asites first time round but I feel so ill at the moment I can't eat I've told them all this still haven't moved my appointment forward. Really impressed with your team.

Sorry I've done this on the back of your post.

Best wishes thanks for asking , with love.

Ann xx

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Welshandproud
Welshandproud
in reply to 1916

Hi Ann. Sorry I've only just noticed this post. I hope that things are improving for you at the moment. Please keep pestering them to get an earlier appointment. You shouldn't have to suffer like this. I remember the pain of ascites when I was first diagnosed. Sending you a big virtual hug xxxxx

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Artgreen

I’m so glad you’ve got such an understanding onc. Knowing that there are other routes to try is reassuring. I’m going to ask mine about melatonin in December as again it looks like it has been very successful in shrinking m as by different types of tumours. I will inform him I’m on the fenbendazole too as well as the agnostic drugs he is aware of.

Very best wishes

Alex x

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Welshandproud

Thank you Alex. Yes I'm very fortunate with my Onc team and I felt much more reassured after my appointment yesterday. You certainly sound like you've researched some new treatments. This gives us all so much hope for our own future plans. Please let us know how you get on. Sian xxx

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delia2

I’m so glad your consultant took time with you and was reassuring. That makes a big difference. I’m sure you dread the taxol but it should do the trick. Gentle hugs!

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Welshandproud

Thank you Delia and sending gentle hugs back to you too xx

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Maus123

Gah.. you could probably have done without this new round of chemo, Sian. Big hug for you. And it's good you have a great relationship with your onc. She seems to really look out for you.

Best of luck with weekly Taxol. Maybe you can start already at picturing the next holiday that follows? The last one looked brilliant.

xx. Maus

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Welshandproud

Thank you Maus. Yes I'm dreading more chemo but planning a holiday sounds like a very good idea . The idea if not being allowed to travel is one of the hardest bits for me. I get very claustrophobic when I can't get away. I will just have to armchair travel for a bit xxxx

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Lindaura

Dear Sian,

I am so glad your Oncologist is ready to start treatment soon, but I hope you get a bit of a rest first.

I was feeling super on Niraparib, but like you, my cancer progressed, albeit slowly.

And I do not have that awful hernia you have.

Anyway, what I want to say is: that I have learned that we are NOT supposed to feel like he’ll during treatment, and weekly Taxol is a great cancer destroying regimen , but not a walk in the park.

What I learned was that you must alert your team if you feel too awful to walk up the stairs. You might need a lower dosage. We are all so different. One dosage, even if we all weighed exactly the same, does not work for everyone. Be sure to let your team know if you are too unwell on it.

In the meantime, I wish you all the best,

Laura

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Welshandproud

Thank you so much Laura. You speak some very wise words. I hope to be able to put off my chemo until after Christmas if I can. I will also ask for dose reductions if necessary. Good luck to you too with your treatment. How are you feeling?

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Lindaura

I am happy that I now know I have three good days each week, but disappointed that I have to take the trial drug during the rest week, as that has nearly the same side effects as the taxol.

Good idea to put off treatment until January.so you can enjoy the holiday,

I hope all goes well for you,

Hugs,

Laura 🥰🙏🏼🥰

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Welshandproud

Thank you Laura. I'm sorry that the trial drug still has to be taken in the rest week. A week off side effects would be so welcome for you. Make certain you do nice things on your good 3 days. You deserve it. Sending lots of love xxxx

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LittleSan

Your consultant sounds like a gem. Enjoy your short reprieve in treatment and get those batteries recharged for chemo. Xxx

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Welshandproud

Thank you little San. She really was particularly brilliant last week. I am very fortunate xx

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Dee345

Hi Sian, I was on weekly Taxol for about 10 months along with Avastin every 2 weeks. I had shrinkage of tumors until about the 7 month point, then stability, then progression. Mainly what I want to say is that it was one of the easiest regimens to tolerate for me and I had come onto it straight from a really tough chemo / immunotherapy trial which didn’t work. Sending best wishes for the best possible outcome D xx

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Welshandproud

Thank you so much Dee. I'm really pleased that you had such a good response to the weekly taxol and that it kept the bugger away for so long. I feel encouraged by your experience. Thank you. I'm sorry that it is back for you now. What treatment are you on now? Sending lots of love xxxx

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Dee345
Dee345
in reply to Dee345

Currently I’m on a trial of Prexasertib through NIH. (National Institutes of Health in the US). It’s still early days so I’m keeping my fingers crossed. xx

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Welshandproud

One are crossed for you too XXX

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Welshandproud

I meant mine are crossed xxx

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marylondon

Your Oncologist sounds a gem . Can understand that you feel emotionally & physically exhausted with it all & apprehensive about more chemo . I’m in the same boat with recent lack of good response to Niraparib & then Carboplatin x 3. I’m due to start weekly Taxol next week so you are not alone . It’s a worry about how the bloods will be affected but onwards & upwards !

Mary x

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Welshandproud

Dear Mary Thank you for replying when you are going through so much yourself at the moment. Sending you lots of love and best wishes for your weekly taxol. We are in this together xxxx

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bluepeterella

Sorry that you are facing more chemo but lots of positives there and thankfully no dreaded ascites! I do understand how life shattering it feels to be facing chemo again though.

I am wondering whereabouts in Wales you are and if we share the same lovely oncologist?

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Welshandproud

Thank you so much yes it all feels a bit intimidating though I'm very relieved about the ascites. I am Welsh and spend a lot of time in Swansea but I live in Cheltenham now. My lovely oncologist is at Cheltenham General. I'm glad that your oncologist is lovely too xxx

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PhillipandBettykid

Great you have such a good oncologist who listens. Mine is like that too. The tiredness is the worst isn’t it? I am on Rucaparib this is my second month and struggling with nausea and fatigue. So glad that they have a few options up their sleeve for you. Hope having a rest from Niparib helps. So hard to make decisions when you are cream crackered. Pob bendith

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Welshandproud

Thank you Betty. I'm glad that you have a good listening oncologist too. It makes such a difference. I never mind waiting when clinics run late because I know that my team will be giving someone else that bit of extra time they need.

I'm sorry that the Rucaparib is wiping you out. Have they given you anything for the nausea?

Sending you lots of love xxxx

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thomas62

Hi Welshandproud, So sorry to hear abt your trials and tribulations on Niraparib. And yes, very hard to make decisions when you are nauseus, exhausted and emotionally drained. Now enjoy your short reprieve and recharge your batteries. Best wishes. Gwen Xx

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Welshandproud

Thank you Gwen. That is so kind of you. Xxx

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Maxjor

Having a consultant that really listens and has a plan is reassuring. You sound confident in the plan and I do think that helps get your ready for treatment, however soon after the last. If it works, its worth it, yes? Wishing you luck when it's "scan reading time" and that there is a chance for a longer break. oxoxo Judy

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Welshandproud

Thank you Judy for your b at wishes. Yes I do really have confidence in my team and my oncologist has a plan that she thinks will work.

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Cropcrop

You’ve been on a proper up and down ride of late but it’s such a relief you have such a good oncologist along for the ride with you.

We are truly blessed when we get somebody who is very knowledgeable, forward thinking and a good listener too, too often they forget the person living within the disease criteria so it’s such a pleasant change for us all. My onc always asks me if I need to ask anything at all and there have been occasions when my questions have seemed (to me) to be irrelevant but they have been listened to and given due consideration and answered so I totally understand that you must be so relieved to be able to have input too.

I hope the taxol is kind to you and hard on the disease, I did weekly taxol for 18 weeks and found it to be as easy as we could ever wish chemo to be.

As always, we are all here for you, I send you love and hugs and the bestest wishes possible, take care lovely ❤️Xx Jane

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Welshandproud

Jane you really are so kind. Thank you. I like you am always grateful to my team for taking the extra time to talk through my concerns with me. It means that I know that they really do care and that means a great deal to me. I'm glad you've had positive experiences too.

I'm so glad that weekly taxol was good for you. I also had weekly taxol as frontline treatment with 3 weekly carboplatin and avastin so that was a bit different.

Thank you so much for your support . Xxxxx

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CarolynA

Hi Sian. I am sorry Niraparib hasn’t been good for you but so pleased you have such a good oncologist. We are following similar paths as I remember we were both starting carbo/Caelyx at the same time in January. I do wish you well. Take care. Carolyn x🌸 ps am posting my own story of woe shortly.....

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Welshandproud

I think I've replied to your post before seeing this one. Life really does suck sometimes. Sending you lots of love and virtual hugs. Sian xxxx

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CarolynA

We’ll travel the road side by side and be stronger for it! Take care. Love Carolyn xx 👭🌸🌼

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Welshandproud

Teal sisters unbreakable xxx

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Seasun36-uk

Dear Sian,

Whether it was Dr C or Dr E, it sounds like you had a very profitable & open discussion, with plans in view. Yes there is hope my friend! Also if I remember correctly, you tolerated first line treatment well?

Hope the next appointment goes well & I agree, doing something (chemo) is better than not, (hard as it is). You are a strong positive lady 🙂

Sending a huge hug (or 3!) xoxo ❣️❣️❣️

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Welshandproud

Hi Linda it was Dr C who was so incredibly sympathetic on Thursday. Thank you souch for your best wishes. I hope you have had a really good holiday and I love ok forward to catching up with you when you're back xxxx

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jools53

Hi Sian, just got results from bloods! Ca125 650 so niraparib not working! Ct scan Thursday to see what’s going on! Nervous, feel so well, just gutted, so onto the next regime! God give me strength xx

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Welshandproud

So sorry Jools. This Niraparib doesn't seem to be as effective for us as we had hoped. Good luck with the scan. Let us know how you get in. Sending you lots of love xxxx

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jools53

Ok scan shows increase spread on liver surface, and more thickening around bowel ! Sigmoid area ! So I’ve ask to send scan to Christine foto!

Looking at surgery and maybe mop up if needed! Otherwise it’s chemo again! Was told if a parf does not work then other parts won’t! Ca135 700! So here I go again! Positive side same two areas no assites lymph nodes clear , seeding in peritoneum still s as ! Not sure what’s coming or what to expect pain wise! Very diligent with bowels ! Working hard not to constipated 😂

Anyone else having similar progression! Feel good though! Just s as another fight 😘😘😘

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