Cancer stable and on prohibitor : Hi there Is... - My Ovacome

My Ovacome

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Cancer stable and on prohibitor

Lesinbeds profile image

Hi there

Is there anyone on Niraparib who does still have the cancer? Mine in behaving at the moment! I have been on Niraparib since August and my CA125 remains good! It’s 11 at the moment! The worst side effect is the not sleeping and I do feel bloated sometimes. When this happens I stop the Niraparib for a couple of days then will start to take it again. Thank you my friends 😊 stay safe and keep well x

12 Replies

I’m much the same as you, Lesinbeds. I’ve been on Niraparib since May 2019. I had to reduce the dose to 200g in Dec 2019, after needing several blood transfusions, due to low Hg, but since then it’s been great! I frequently wake at 4 am, and struggle to get back to sleep, but it’s a small price to pay, I think. Stay well & safe! x

Lesinbeds profile image
Lesinbeds in reply to Flora3

Hi FloraI was on 200g but have been lowered to 100g. My CA125 has kept low so fingers crossed it’ll remain like that! We have to take one day at a time and think ourselves lucky that this wonder drug is going it’s job.

Take care xx

Hi there, I've been on niraparid for nearly 2years and me ca is also steady at 11. I feel well, do have sleep problems but I can cope with that. I was diagnosed in may 2019, had surgery, then 6 rounds of chemothe, followed by avastin but ca crept up again so back on six rounds of carbo and taxol again. After 6 weeks I was out on niraparid and here I am, so I am not complaining. I am classed as stage 4, am brca positive and was told that I would be responsive to parps, however ijt doesn't stop me worrying about recurrence, but I think we all worry about that. I enjoy my grandchildren and when this dreadful covid goes I shall look forward to socialising more.. Keep well and keep up this enduring battle, we will do it!!!

Joanie

Hi, I'm just about to go down the same route and its nice to hear it worked for you - chemo, surgery, chemo, Avastin but CA125 has risen. More chemo next..

Hi. I've been on Nirabarib since October 2017. The lowest my CA125 got to was 18, through chemo never brought it below 50. At the beginning of last year, the figure started creeping up very gradually and when in September it hit 35, I had a CT scan that showed a new 2cm tumour. My oncologist kept me on Niraparib because the tiny remnants of tumour I'd had when I started the parp inhibitor hadn't grown at all. I had a further scan just before Christmas and nothing had changed from the September scan, and my CA125 is also stable at 34. I feel ok at the moment, so she has recommended watch and wait, and to have a further scan in March. As I'm just days away from 5 years from my original diagnosis, which turned out to be 3C, and 4 from my 1st recurrence, I'm happy to still be here and doing as well as I am - long may the Niraparib continue to keep the beastie under some form of control.

Lesinbeds profile image
Lesinbeds in reply to Numi

Numi .. That is fantastic! And congratulations 😊 it is so reassuring when you hear other people are doing well. I do worry, which I know is natural! How long I’ve got! Which is horrible I know! I think the lockdown doesn’t help with not being able to do things to take my mind off it! I think what’s made me feel worse it the last time I saw my consultant I ask about life expectancy and she said 5 years from diagnosis and I can’t seem to get that out of my mind. My other consultant said I’m doing really well and that he has a patient been on Niraparib for 10 years. They have said if it does come back I can have more chemo and there are other trials so from that it is positive.That is so amazing for you that it has not grown! I am so pleased for you. I think our bodies want to kick the arse of this cancer! Us women are little warriors. Please take care and keep in touch 😊

Kkaren profile image
Kkaren in reply to Lesinbeds

Hi there. I was just reading your reply and I also worry myself sick about this five year expectation. However when I changed consultants the new one said to me that a cancer diagnosis is not the death sentence it once was. As others have said new and different treatments being developed all the time. I also saw a comment from another lady on here who said ‘remember it is a manageable and treatable disease’. I took a screenshot of that and look at it often. I also try and reassure myself by thinking of the amount of ladies I can think of who have had breast cancer and are still here years later. If you google that it also mentions the five year rule. I just wonder when that stat was introduced as it must be long out of date by now . Just wish scientists were as quick off the mark with this as they were with the Covid vaccine!! Stay positive

Hi lesinbeds, I am not NED and have cancer still in 3 lymph nodes. Finished chemo in Sept 20 for 1st recurrence and had good response and shrunk them by over 50%.I am now on Rubraca, although had to come off for a month as platelets dropped so on a lower dosage of 800mg per day. Hope to have a scan soon to see if stable. Fingers crossed.I am BRCA neg. Please keep positive and forget your oncologists remarks about expectancy. You are not a statistic and everyone's cancer and journey is not the same. Enjoy life for today and don't worry too much about the future. There is always new treatments being developed and trials etc and someone once told me that your body reacts to how your mind thinks, i,e stress etc, and this is true. I know it's easier said than done, if we're honest we all go through these horrible thoughts in our head, but think of the nice things to do when we get out of this lockdown, and think about taking a nice break somewhere and seeing friends. No-one can predict what will happen to any one tomorrow. You stay strong!. xx

Lesinbeds profile image
Lesinbeds in reply to win_56

Thank you for your lovely words and reassurance. Most of the time I feel positive and my husband says I’m amazing! You wouldn’t think there was anything wrong with me! So I’ll remain positive and look forward to and cope with what the future holds and what comes my way. You keep well and stay safe .. thank you my friend xx

win_56 profile image
win_56 in reply to Lesinbeds

You too keep us posted. All the very best going forward. 🤗

Hi, yes me!! Started on 200mg just before Christmas but that played havoc with my bloods. I’ve now been reduced to 100mg. I too find that there are some nights I just cannot get to sleep. I read and listen to music to try and make myself sleepy. Inevitably you fall asleep just as you are due to get up. Funnily enough I hadn’t experienced bloating until this morning when I look slightly bloated so I am really reassured to see that others have experienced this also. Do you have indigestion type symptoms? I feel I gurgle like an old coffee percolator but not every day. Onwards and upwards x

Found you 😘 xxx

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