Niraparib stopped

[Missmuffet32]

Not posted a lot but read and follow everyone’s journey. And it keeps the demons from the door. Had ct scan yesterday and appointment with oncologist today. Not good news ca125 up to 150 tumours growing again. So they have stopped the Niraparib been on it five months ☹️. Having troubles with bowel obstruction so losing weight fast!!!! Going to start Paclitaxal in a week or two , weekly for three weeks off one week for 12 weeks to see if helps. Anybody else had this. She said the side effects were not as bad as three weekly. Help I feel I’m drowning here💦💦. Any replies will be greatly appreciated. Now making the two hours drive to tell my most lovely beautiful and caring daughters. I’m just gutted 😔😢 Miss muffet

[Hidden]

So sorry you got this news, you should be resting instead of driving but I do understand you are anxious to see your daughters. Eat small meals rather than large ones and eat what you want, I have also lost weight so told yogurts ice cream and Fortsip compact drinks for energy. Your doctor should be able to prescribe the last. Cheese, mashed potatoes with butter or cream. In fact any thing bad right now is quite okay, I mean it doesn't have to be healthy.

[Missmuffet32 in reply to Hidden]

Sorry not replied sooner. Still feel rubbish, but the hardest part was telling my girls. They are devastated and sad that it’s back but trying to remain positive for me. I know that they are not babies 42 and 36 but you’re always mum and worry about them. Hospital called starting Chemo on Monday morning. So I hope this helps . As long as this bowel obstruction eases off . Thank you for your thoughts. Hope you’re doing well x🙋

[Petrolhead]

So sorry that it has not worked for you. Here’s to the next lot of treatment 🤞. Try and keep up your spirits. If you need any info on what your GP can prescribe for calories then just ask as I give out these all day at work.

Best wishes

Fay

[Missmuffet32 in reply to Petrolhead]

Hi Fay thanks for advice, starting chemo Monday morning so fingers crossed 🤞 it will help me. Take care. 🙋

[Annr5h]

Hi, I know how you feel. I had my last chemo on Christmas Eve and was given Niraparib. My markers are raising too had scan last Friday and went to see oncologist on Monday but he said he’d not received my scan results but will ring me by the end of this week. So I’m now waiting to find out what’s going on inside. He did say there are a few options so watch this space. Your not on your own so Hopefully I can give you some comfort. It’s not easy and although everybody says your an inspiration and so positive. We do have our down days. That’s what’s good about this sight. I wish you well and I always say tomorrow is another day. God bless Ann xx

[Orsolini]

I’m sure eating more will help, easier said than done - i’m In the same boat losing weight 😟 I had weekly Taxol and I did find it relatively easy. Only start when you feel ready. Nicola xxxx

[Missmuffet32 in reply to Orsolini]

Hi 👋 Nicola, the hospital rang to say I’m booked for Monday morning for chemo. Did you have any sort of side effects? And did you loose your hair? Mines only just looking okay but hey I’m still here. I’m more worried about the bowels. Take care and I’m thinking of you. 🙋

[BeeWild]

Hi I’ve had weekly taxol and it is very tolerable. I carried on working but near the end I was more tired and got a little neuropathy. I also used the cold cap so kept my hair and again this wasn’t as awful as I’d imagined. It did get rid of the 2 tumours I had but the bugger raised its head again elsewhere so I’m now back on chemo x

Good luck with it and hope it zaps those aliens for you x

Bev

[Seasun36-uk]

Thinking of you & hoping the Taxol is very very effective xoxo

[Missmuffet32 in reply to Seasun36-uk]

Thank you so much, take care xx

[Solange]

Sorry you had a frightening scan result. Fingers crossed that the pacllataxil will help you and not give you many side affects. I so feel for you, having to go and tell your daughters. I always hate having to tell my family when I have a bad scan result. I had to tell my lovely family that some of my tumours have grown a bit though others have remained stable. Onco has said my body can take no more Chemo, though I would like to have at least tried. I'm going to try Tamoxifen, it's better than nothing.

Keep smiling, love Solange 😊

[Missmuffet32 in reply to Solange]

Hi Solange

Your very kind to spare a thought for me when you’re going through tough times too, it’s just “Crap” I hate what it’s doing to all you lovely brave ladies. My thoughts are with you 🙋😘

[Katiebairdie]

I’m like you. I was on Niraparib for y six months but it wasn’t working. I have been on weekly taxol for 8 sessions. It is much easier to cope with than the first time round. My only symptoms are a rash on my face and neck with lasts for about 36 hours.

I have been using the cold cap and after3 sessions I still have my hair. Amazed!!!

Sending love and best wishes.

Kathy

[Missmuffet32 in reply to Katiebairdie]

Dear Kathy

Returned from hospital today for chemo. Tried the 🧢 but it wasn’t for me. I couldn’t take it the pain and cold was too much after 90 minutes I couldn’t stop shaking and my temperature was down to 32.6 🥶🥶🥶🥶🥶🧢. But the taxol was no bother. Let’s see what happens next week. Hop your doing well. Big hugs 🤗

[Missmuffet32]

Hi Kathy

Thank you for your lovely words and wishes. Not tried the cold 🧢 cap as they said it did not work on full doze Carbo/taxol. So does it take long to go through? Not had rash before with it so fingers crossed 🤞. Glad you’re doing well. Best wishes Margot 🙋