Thanks and update

[CarolynA]

First of all thank you so much for all the support and helpful answers to my recent post. It really made a difference. I had the meeting last week with the palliative nurse who was kind and understanding, although there were inevitably questions she couldn’t answer. She is trying to arrange an early meeting with the oncologist to answer all my questions, possibly mid September, as he has said that he will consider giving me Niraparib if I want it. (He had said originally it would make me too unwell based on my chemo experiences. I finished chemo last month). The nurse in the meantime has suggested I consider whether I want quality or quantity of life. So these developments have flagged up more questions! 1) how do you decide between quality and quantity? I find this really very scary, and 2) what is your experience of Niraparib? The nurse handed me a sheet of information on it and it said to avoid busy public places. Do I take this to mean supermarkets, trains, concerts etc?? One minute I feel panicky, then I try to be calm, I seem to be all over the place. Help and advice, once again, would be so welcome. Hoping you are all enjoying a good weekend as best as you are able. Thank you again. Love to all Carolyn x

[Rachael47]

The quality versus quantity is a hard one. It depends on so much. For me, at 72 it is of less consequence than for someone younger who has everything to go for, ie young children and grandchildren. Also, I think the choice very much depends on how you feel at the time you make it. During my last set of chemo I swore that if I had a future recurrence I would go for the Quality choice, because I felt that life was not worth living if the long-term future was equally awful. Since then I have felt extremely well on Rucaparib, and am not so sure.

I guess this isn't all that helpful. Wishing you well whatever you decide.

[CarolynA in reply to Rachael47]

Hi Rachael. This is helpful, thank you so much. In the midst of all the angst and nightmare, it is good (though sad, of course) that someone out there understands the situation. Thank you again for your words. Take care. x

[Lyndy]

Sounding more positive Carolyn. Do you have to make a decision right now? Surely it also depends on if you go on the parp and how you get on? I am just thinking about those who have written about this choice before and seemed at peace with their decision. Maybe you are not yet at that point? Sending love 💕

[CarolynA in reply to Lyndy]

Thank you Lyndy. Not sure I am feeling more positive, it’s just the shock of the original oncologist meeting has started to wear off. I was hoping to finish chemo then gradually start feeling better and getting on with life. But that seems to have disappeared. It’s all a bit surreal still. Thanks again. X

[Lindaura]

Everyone reacts slightly or extremely different to every drug and chemical we use in our arsenal against this disease.

I have been exceedingly healthy on Niraparib, and have not had to avoid public places, because my blood results have been strong.

The first month on Niraparib, you will be watched closely, with a blood test every week, but if you tolerate it well, you go to once a month.

I know Niraparib has slowed progression for me, but it has not stopped it and I am going to have to try something else soon.

Meanwhile, I am living a healthy life in all other ways. Socialising, working, dining out, and feeling pretty darn well.

I hope you feel better soon and that the Niraparib works better for you than it had for me.

Don’t give up the fight!

Best wishes,

Laura

[CarolynA in reply to Lindaura]

Thanks Laura for your helpful reply. I am pleased Niraparib has slowed progression for you and hope you get another drug to continue this. How long were you on it? Pleased to hear also that you are enjoying life to the full. It’s so good to be able to ‘talk’ to people who understand! Carolyn x

[Lindaura in reply to CarolynA]

I have been pretty lucky in not ever experiencing any pain. My only symptoms were diarrhoea and extreme breathlessness and bloating.

Once that was under control, after Carbo/Taxol, I began to feel okay and better and better each day until first recurrence.

When I started Niraparib, only 5 months ago, I felt on top of the world, 95% of my old normal.

Now, I am more like 85%. But still energetic.

Hope this regimen does the trick for you.

Hugs,

Laura

[CarolynA in reply to Lindaura]

Thank you so much Laura. This makes me feel more positive. Do you know what other drug options you have? Take care. Carolyn x

[bamboo89]

You really do need to consult with the oncologist to get some clarity in regard to Niraparib. It's why you've been told you'd need to avoid public places if you take it that's the question - likely your white cells or your neutrophils are very low and have not recovered from the chemotherapy, and may be reduced further by the Niraparib, but the oncologist should be able to explain why there's an issue. If you really cannot go out in public (presumably because of the risk of infection?) when you're taking Niraparib, that will definitely mean a reduced quality of life, so possibly that may be what the nurse means when she says quality or quantity - in other words you may live longer on Niraparib, but you won't be leading anything like an ordinary life. Many or even most of us eventually have to make a choice between deciding to make the most of the time we have left feeling as well as possible without treatment, or have more treatment and not feel very well or be very constricted, with a reduced quality of life. So at some point, its either shorter and sweeter, or longer and much less sweet for some of us...and yes, it is absolutely surreal, hard to get your head around.

I'm 69, Stage 4b and have two types of OC because of differentiation; I refused chemotherapy after my initial surgery in January 2018, and am now at a crossroads, being offered chemo once more because there is active cancer growth. Nothing in me so far feels I want to have the chemo, though I keep expecting to wake up one morning in a blue funk, screaming 'give me chemo immediately' rather than die, but so far, nope, hasn't happened; on balance, being between a rock and a very hard place, I find I still prefer the relatively slower paced, more gentle but inevitable decline towards dying offered by the palliative care service, because it was always going to get me one way or another anyway. After all, ultimately, no one gets out of here alive, do they.... I daresay I would have felt differently had I not had two types of cancer, was younger and it was all at an earlier stage, but as it stands, I have already had 17 months of being very well indeed, far longer than anyone expected given my refusal of adjuvant chemo following surgery and the type of cancer I have. That time has not been quite as it was before because I have a huge incisional hernia which can be a little restrictive, but otherwise I have led a totally normal life since surgery up to now.

I will just add this; my younger sister has had two heart attacks, and the second one has left her not as she was previously - she also has other non fatal but painful conditions. She told me yesterday that wherever she goes, she 'drinks in' what she sees, things like the sky, cloud formations, the beauty of nature, how the waves run onto the beach, the activity of animals, as if its the first time she's seen them, with wonder and a sense of unreality, because she is aware she probably does not have too much time left. And she doesn't even have cancer, so it comes to us all eventually, one way or another.

Compile your list of questions and see what the oncologist has to say; more information might mean more clarity so you can make a decision you're more able to come to terms with, one of which might be trying the Niraparib to see how it goes. Good luck...

Miriam

[CarolynA in reply to bamboo89]

Hello Miriam. Thank you for such a wise and helpful reply. I am so pleased that you have lead a good life since diagnosis and you sound so calm and positive. I hear you saying ‘live in the moment and smell the roses’ but first I will ask the oncologist more about the risk of infection in my case. Thank you also for sharing about your sister, wise words indeed. Good luck with your own decision. Carolyn x

[bamboo89 in reply to CarolynA]

Absolutely speak to the Oncologist - it might definitely be worth trying Niraparib, no need to 'smell the roses' just yet. I'm doing that not really because I want to, but because kismet, fate or the universe has decided for me, really, I've been given a one way ticket, and acceptance is more or less all that's left, other than making myself unwell in an attempt to fob off the inevitable for what might prove to be only 3-6 months anyway. I dunno, talk about sod's law; you think you're more or less in control of your life for years and then you find that, ultimately, you are not! It's a hard adjustment to make....but I focus on all the health things that I didn't get or have happen to me during my life, and consider myself lucky to have come this far in many respects, it could have been so much worse. Keep us apprised, if you can😊

Miriam

[CarolynA in reply to bamboo89]

Oh Miriam was an inspiring post! You are one amazing lady. I realise now that I must like control, as not being in control is making me very uncomfortable. As you say, it makes adjustment so difficult. Please keep well and keep posting! Take great care. Thank you again. 🌸 Carolyn x

[Maxjor]

I am not sure how they could ask you if you prefer quality over quantity for a drug you haven't tried yet. You may tolerate it well, and not feel anything like chemo. So before you have to decide how you feel about that, shouldn't you be given the opportunity to try it and see how you feel on it? Also with Niraparib (more than Olaparib), they will start or go to a lower dose (start lower if you weight under a certain amount--in the U.S. its below 170) and if you can't tolerate the starting dose, they can lower it too and wait to see how your blood work (and you) are doing. I was on Olaparib with the first week only having its challenges (nausea and fatigue) but it all eased up pretty quickly and I had a little over a year taking just pills which was quite nice. Wishing you luck with your decision and please keep us posted. oxoxxo Judy

[CarolynA]

Hi again Judy. Thanks again for this, it’s always good to hear from you! You make a good point about making the decision on a drug that I haven’t yet tried. Did you only take it for a year because of recurrence? And did you go back to iv chemo? I am still waiting to hear about a new meeting with the oncologist which is a bit worrying, so I may need to chase it up. Take care and go gently. 🌸 Carolyn x

[shortfriends]

Hi Carolyn, I am sorry you about this upset you are having to deal with. I agree with the comment that you cannot tell until you try the drug first! Do you feel up to asking for a second opinion? a new pair of eyes might come up with an entirely different solution. Are you near any cancer centres where you could go and talk it through with someone independently? I am not surprised you are confused at present, don't give up! Keep posting here as well where there are many experienced people who have had to make similar choices and can understand as well as empathise with the distress you are experiencing. Don't make any decisions until you are at peace with the decision (as much as you can be!) I was not advised to avoid busy places but I do or I wrap a scarf round my face to avoid germs, I don't know if it does any good but I feel better! lol Will be thinking of and looking forward to hearing how you get on.

love

pat xx

[CarolynA in reply to shortfriends]

Hello Pat. Thanks again for a lovely reply. I am not near a major cancer centre and two hours away from the nearest Maggies Centre. But I have made some progress! I now have an extra appointment with the oncologist to discuss in detail about my suitability (or not) for Niraparib. A palliative nurse will be in the discussion so that I have that support. I have also talked to an oncology health nurse at my nearest cancer hospital where I am a patient and where my oncologist is (50 miles away). She was really helpful and understanding , but at the end of the day it will be me who makes the decision and I still don’t know which way to go. Hopefully it will be clearer after the meeting in mid September. I love the idea of wrapping a scarf around the face particularly as we head towards the colder months. Hoping that you are as well as possible. Thank you again for your helpful replies. Love Carolyn x

[shortfriends in reply to CarolynA]

You are welcome. It must work as I haven't had a cold for a long time and I use public transport. From what I see on the news it seems to be very common to wear a mask in Japan so maybe I will try that next, will match it to my chemo turban LOL. Hope you don't get too stressed waiting for September, if you want to chat when you have a panicky wobble please feel free to email me on [e-mail]. Will be thinking of you till then.

big hugs

pat xx

[CarolynA in reply to shortfriends]

Hi Pat. I have just written you a lengthy reply, pressed Send, and it totally disappeared! So a short reply instead. Loved the idea of colour coordinated mask and turban! Thank you also for your email address, which I may well use. The panics are getting less but still take me by surprise occasionally. I will try and email you direct again later. Hoping that you are able to enjoy a relaxing and sunny Bank Holiday weekend. Carolyn xx