When chemotherapy may have come to an end

[Gemimablackvelvet]

Carbo/caelyx Chemotherapy. Just nearing the end of my 5th cycle since a recurrence of stage 3c OVC when the CT scan showed 3 large tumours in my upper abdomen. The 3 month CT scan revealed a reduction of 50%. Good news in my mind but the oncologist cannot in any way promise to shrink the tumours altogether. After a reduction from 100% caelyx to 70% I seem to have managed the side effects quite well this last couple of weeks but I fear there is less of a chance of shrinkage with the weaker dose of caelyx. The tumours were originally 12cm, 6cm and 3cm with speckles across my upper abdomen and my CA125 was 46. Niraparib has been mentioned but surgery ruled out. Can anyone give me any advice or hope please. I've apparently had this beastly disease for almost 2 years now although only diagnosed and treated May 2018 with this one recurrence after approx 7 months stable disease.

Angela

[delia2]

Hi. I’m similar though my tumors are not as large. Was ned for 7-8 months after frontline. I’ve had 3 carbo caelyx and am having a scan next week to see if it’s working. My oncologist said they’ll be happy with shrinkage and as long as I remain platinum sensitive (meaning positive results from chemo but not necessarily eradicating the cancer) I’ll go on Niraparib and I assume when that stops working on another chemo. I’m not thrilled with the idea of ongoing treatment but you shouldn’t assume you have no options. There are plenty if you’re willing. Maybe after chemo they would reconsider surgery? I don’t get the thinking about surgery except for low grade people. At least you’re almost done with chemo! ❤️

[Gemimablackvelvet in reply to delia2]

Th

[Gemimablackvelvet in reply to delia2]

Thank you for taking the time to reply Delia. Your points were all very inspiring and I must admit I feel a little more hopeful this morning. I see the oncologist on the 16 Jan last chemo Jan 20

My love to you

Angela

[Lyndy]

Hi Gemima

I don’t have direct experience but always promised myself that I would seek out second opinions when necessary and I wonder if you are at a crossroads now when someone else might bring new thinking? My oncologist is rather shy of discussing surgery options but we know they are out there..

And parp inhibitors.. what are they doing to get you this treatment? I think you need some answers. Good luck xx

[Gemimablackvelvet in reply to Lyndy]

I think you’re right Lindy I’ll just have to wait and see. My oncologist is very good to me but I never feel very confident when I leave his office. He’s quite matter of fact and explains everything fully.

Thank you for replying

My love to you

Angela xx

[Doglover1410]

Hi, I was diagnosed the same Oct 17, surgery then 6 chemos. Did a trial for immunotherapy, but CA 125 started to slowly rise Sept 18. Started Caelyx Oct 18, then on Niraparib since April 19 (luckily the trial was pulled which made me feel so much better that it wasn’t something I’d failed at!!)

Feeling good, CA125 was 9 this week....not counting my chickens but cautiously happy right now!!

It’s very doable, I started on 200 and had no side effects (I was regularly quizzed over ‘really? Nothing?’!!!

Whilst my man was away they put it up to 300 but my bloods started going down and had to have a transfusion in August(although still no side effects!)...3 weeks off and then back on 200.

I take mine in the morning so if I go out I don’t have to take drugs in-front of friends just to remind me!!

Good luck and keep us posted x

[Gemimablackvelvet in reply to Doglover1410]

Hi Doglover,

that all sounds good and encouraging. I love to read these posts at night as it helps me to sleep. Thank you for replying and all the best with that remarkable CA 125. May it continue to drop

My love to you,

Angela xx

[mrstadpole]

Hello Angela

Sorry to hear of your recurrence. I am in a similar position to you and I'm due to meet my oncologist tomorrow with a view to starting carbo/caelyx Tuesday.I'm BRCA 2 positive so I'm not sure if that makes a difference although I have read that parp inhibitors are good.

What kind of side effects did you experience?I was okay on my first lot of chemo 2 years ago, so I'm hoping the same will happen this time.

Wishing you a good outcome Ann xx

[Gemimablackvelvet]

Hello Ann my first , second months of Carbo/ Caelyx was a little harder than Carbo alone. A little burning of hands and feet. The usual constipation and very little nausea. The third month proved more difficult ie hands and feet peeling, under bust soreness and mouth ulcers. So they reduced the Caelyx to 80%! . Still problems to the so the 4th/5th month down to 70% which has been much more comfortable . I have my last chemo on 20 Jan. I have to add a 3 month CT scan revealed 50% shrinkage in all 3 large tumours. CA 125 down from 46 to 16. Next CT scan mid Feb. Perhaps I’ve already said that!

I’ll keep everyone informed

Love Angela xx

[mupash]

SO SORRY TO HEAR YOUR NEWS. BUT THERE ARE SO MANY OPTIONS OUT THERE.

I DON'T KNOW HOW PARP DRUGS WORK IF YOU AREN'T BRACA POSITIVE. HAVE YOU BEEN TESTED? ALSO, FROM WHAT I'VE READ FROM OTHER MEMBERS, AVASTIN WORKED FOR MANY. SEE WHAT OPTIONS YOUR ONCOLOGIST OFFERS AND WHAT ABOUT A SECOND OPINION FROM A LARGE INSTITUTE?

WISH YOU THE BEST OF LUCK!

LEE