Oncologist rang about my scan results and I felt really upset as was expecting better. After the first three rounds of carbo /caelyx the three lymph nodes near my aorta had shrank over 50 percent. My final scan after 6 had only shrunk a few millimetres more. I feel rather disappointed and was expecting more. Parb inhibitors have now been mentioned to keep the disease stable either Niraparib or Rucaparib. They are discussing cyber knife radiotherapy at the MTD meeting on Friday but I don't think it will happen as they said it may cause more harm than good. I did have. s second opinion by Prof C at Hammersmith sone months ag in yes I'm in for, beo but because I had started chemo in April she would not consider surgery and she was not doing 2nd surgeries herself the.n re covid. I guess I'm just feeling deflated and upset and need some encouragement.
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Deflated, crushed, battered and lost. I know how you feel and am right here with you. I'm so sorry that you didn't get the results you'd expected. I had similar results this week. Midway scan showed significant reduction but later scan showed progression. Awful for us both that we've endured that treatment, with delays and issues along the way, only to come out the other side without the results each of us had hoped for.
I am at least glad to hear that you can still access the PARP, it seems. I've heard so many ladies have had positive responses to them and I'll keep every hope that you will join their ranks.
Thanks Gem, yes I suppose in the light of things I should be grateful that i've been offered Rucaparib, just a bit scary going on it, but just got to try it.
I know how you feel and hear you. It’s so hard to get difficult news. Please know my thoughts and prayers are with you! Keep your head up! There are new things they are trying daily, but it doesn’t make it any less hard to hear.
Sorry to hear that it hasn’t been as effective as hoped. It’s a lot of hard work going through chemo and if you aren’t rewarded at the end that’s very difficult to take. However, from what you have said there has been a response... and it may be that the treatment is still working away. If you can get on a Parp now that would be a good outcome even if it’s not quite the one you wanted. ❤️
Hi Lyndy thanks for replying.I'm going on Rucaparib next week, bit frightening when yu hear all about the side affects especially Leukemia but as the Oncologist said to me I'd be more concerned about the cancer at the moment!
I was deflated after my first scan on my trial as it showed only a couple of millimetres of shrinkage. However I know now that stable is good and that scan results need to be looked at over quite a long period of time as they can go up and down. Any shrinkage is good. So I think you should investigate what comes next but enjoy the present.
Hi. I had a similar experience with carbo caelyx and then went on Olaparib which shrank the tumor another 75% after a couple of months. So you may get more shrinkage from your PARP. Xx
Me too... it is so disappointing isn't it. Although things did shrink, and the chemo nurse was thrilled with my response, I expected more I think by the end, but there were still areas of cancer that hadn't shrunk and my CA125 didn't go down lower than about 51, although it had fallen from 1100 or so. I have started Niraparib now, but no idea if its doing any good yet - I know my CA125 started rising again within nine weeks of finishing chemo, unfortunately, so am hoping the niraparib will help, so its worth trying whichever one they decide to give you , otherwise its likely just more and different chemotherapy.
Hi Miriam, thanks for your reply, I realk do hope that Niraparib is successful for you. I am going on Rucaparib next week, just so frightening all the side affects, but if it works it's better than chemo I suppose!
I have to confess to you that I was very nervous about starting the Niraparib - I decided I'd start on 100mg a day instead of 200mg as prescribed, just in case I had some sort of reaction to it, like an allergy or something. I have had allergic reactions to various drugs down the years, and in my experience, the less of it you've taken if you have the reaction, the quicker it stops! I did manage to get the agreement of one of the oncologists to do it this way (because Niraparib thins blood and I'm on blood thinners already) but I'd have started with a low dose regardless of anyone's agreement. I had no awful reaction, but still waited for two weeks to see what my platelets were doing before going up to 200mg, which I've now been on about 9 days - the oncologists know I've now upped the dose. I wouldn't have waited two weeks were it not for the blood thinning thing, I'd probably have taken the higher dose within 5 days of starting once I knew I wasn't allergic to it; rucaparib does not have such an effect on platelets I don't think. So far, only minor side effects, fingers crossed, now to wait and see if its doing anything to the cancer...
This insidious disease knows how to knock the stuffing out of us, that’s for sure.
A reduction is better than a growth so that’s positive, hopefully the Parp inhibitors will keep you stable and give your body a chance to recover from the chemo and you get a good long break off treatment.
Try to organise yourself a nice treat, you deserve it.
Hi Christine, thanks for your lovely reply. This disease sure does knock the stuffing out of you! I am going to try and stay positive and hopefully when I start Rucaparib next week it may even shrink the nodes further or at least keep it stable. Good idea about the treat, will go on line and buy myself something nice. x
Thank you all for your lovely words of support. Next step is that I will be going on Rucaparib next week and now just grateful that the cancer is stable. I am.rather nervous about going on the parb especially when my Onc advised me of side affects. The one that really freaked me out was AML leukemia! Although it is 1 percent it is still very frightening but then she went on to say that she would be more worried about the cancer that I have now than the thought of getting leukaemia and I guess that put it into prospective. I think I'll be starting on the full doseage. Guess I'll just have to see how it goes.
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