Went for my first scan results yesterday after starting Rucaparib four months ago ,not the results I had hoped for ,it's not working ,so stopped taking it ,now on watch and wait for next six weeks ,then a scan , likely chemo again . I'm so tearful and sad ,I feel like I'm running out of time , so far I've had six cycles of chemo , surgery three more cycles of chemo ,nine month remission ,then six cycles of chemo ,then four months of Rucaparib.Can anyone give me some hope or am I getting near the end of the line .
Cheryl.x
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Hi Cheryl, I don’t know the answer re treatment lines but I’m sure lots of more knowledgeable ladies will be along shortly. In the meantime I just wanted to send you hugs. Thinking of you.
Hi Cheryl I am so sorry to hear Rucaparib did not give the result you hoped for and I can imagine how you are feeling. Were you offered the option of chemo now rather than watch and wait, or maybe you are ok with having that 6 week break? It may be worth asking what else you can try, what about Avastin or the possibility of a trial? If you don't feel you can take the 'watch and wait' 6 weeks it may be worth contacting your onc for a further discussion. It's always difficulty to think of these things when you are in the room. Sending you a big but gentle hug and positive vibes. Kathy xx
Thank you Kathy , oncologist said another option would be a hormone tablet ,but only 20% successful rate and dreadful side effects ,so decided to wait ,my head's spinning so I'm going to phone my cns to run through it again ,we go on holiday on the 14th so at least I can drink wine while I'm not on treatment .Cheryl xx
Good idea to speak with your CNS. When you don’t get the news you are expecting it’s so difficult to think of everything you want to say and ask. I hope you enjoy your holiday and as you say at least you can treat yourself to some wine. Do let us know how you get on and have a lovely holiday. Xx Kathy xx
I am in the same boat. Have consultation with my onc in a couple of weeks to get scan results, but from the way I am feeling, I don't think Rubraca has worked for me either.
Hi Cheryl,So sorry to hear about your current situation....I am sure there will be some other treatment they can give, write down all your questions and ask them, even if some of them seem unimportant, thats what I do, hope there is another solution. Enjoy your holiday. Sending big hugs.
Thank you for the support ,I'm speaking to my cancer specialist nurse this afternoon , I've blanked on everything that he said yesterday ,so she will put me right .Cheryl x
So sorry that this treatment hasn’t worked for you Cheryl,it’s devesta to hear that news.I’m the same when I have my telephone consultations ,I just can’t remember what was said and I just ask stupid questions,so I’m glad you could talk to your nurse.
I hope you feel better about it in a couple of days and can focus on having a holiday.
Hi Cheryl. That’s really a bummer about rucaparib but you still have several options for chemo and possibly trials. Try to focus on your holiday and being treatment free for these six weeks. Enjoy every minute you can. I know it’s difficult with this beast! Hugs.
Thank you Delia ,I'm trying to be positive ,but keep seeing palliative care looming , I know in a couple more days I'll be up for the fight again,just on a real downer today ,thanks for your support.Cheryl xx
I'm so sorry to read this. It's just completely rubbish. I hope you are able to recharge in the next few weeks and that further options exist ( I'm sure they do) . Sending lots of love, Sara xxxxxxxxxxxx
Would it be worth getting a consultation with Prof Gordon Jayson at Manchester. Have read so much about this man (google him). He has been recommended on here. I am in the same boat. Rucarapib has not worked and lymph nodes still showing low activity at last scan. Am on watch and wait. Go for another PET scan on Friday. Dreading results. If my onc unable to offer something will try and get an appointment to see Prof Grayson. Let us know how you get on. X
Hi Cheryl I am sorry to hear Rucaparib didn't work for you & you sound like you are totally deflated by this news. I just wanted to let you know I am thinking of you & hoping that something else will be offered to you which will give you better results. I know its easier said than done but don't give up hope yet, stay strong. I am having one more chemo for first recurrence before I have a Ct scan in a few weeks time & then it's the dreaded wait for the results but I am trying to put it to the back of my mind for now at least. All I can do is send you lots of hugs & good wishes Xx💐
Hi Cheryl I'm so sorry to hear about your disappointment with your recent treatment.It is so difficult to hear it is not working.I'm sure there will be other options available to you even if it means seeking a second opinion as many ladies on here have done.Take care,enjoy your break without treatment.Thinking of you xx
Starting 7th year. Stage 3c. 6 carbotaxol surgery 3 carbo plus 17 avastin. 1 yr remission. Barbo gemzar didn't work. Surgery. Caelyx didn't work. 8 months txol did work then stopped. Started carbo platelets too low. Working to bring them up. We will see. Other than that I feel fine. But it's a slog for sure. Hugs from paris
I'm sure drs still have treatment ideas. I have reached 13 years after several different treatments, Even a few years on some of the hormone tablets helped for me, although others didn't. Di
I decided to say yes to hormone tablets rather than not give any of them a chance - in other words, could be better than nothing. Letrozole was the best for me, only caused a small reduction in tumour size, but kept it stable for 2 years, which I felt made it worth taking it. And I took Exemastole for 1 year. Ohers were less help. Di
I think I said no to hormone tablets after my oncologist told me about the side effects ,going on a long awaited holiday on the 14 th so didn't want to start something new while away ,but I think I may give it a shot when we're back ,how did you find the side effects.x
Thank you Liz ,I'm a bit calmer now and I've spoken to my cns , I'd forgotten what my oncologist said ,if there's no change after the next scan maybe watch and wait ,any changes it will be carbo and caleyx , can't spell it 😀 so I'm trying to enjoy my break and will take it from there. X
Sending you hugs and good vibes from Down Under Cheryl. Our team mates have offered you some suggestions and I hope you are ready to tackle this setback full on.Jill xxx
What a rollercoaster ride for you lovely. Glad you’re feeling stronger today. Hope your team find something that will get you back on the road to recovery. Take good care please xxx
Hi Cheryl,So sorry that you find yourself in this position. I hope that you enjoy your break away in Devon.
It is so disappointing when these drugs don't work, & wonder what is coming next.!!
I could be in the same position as my bloods last time were 63, so I am expecting them to go up again on the 13 Aug. I feel really well at present which is good,but suspect underneath all this there is a problem somewhere. I am guessing i will have to have a scan if this is the case.
Hi Cheryl, so sorry about your scan and the medicine not working well. It can really take a toll on us when we hear negative things. I have a scan on Monday and I am going to be nervous about the results. We can’t help it. I have been on Niraparib for a year now, but I had to take some breaks off for my low blood counts. The side effects of this can be troublesome with low hemoglobin and having a blood transfusion. This happened one time, don’t know how long I can go on this. My nurse told me only 2 years, because I could get blood cancer. I wonder about all of these drugs what they are doing to us. We are doomed if we do or doomed if we don’t! Nuts! Anyway, just sending a hug and my best wishes, Donna xx
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