Taken off clinical trial

[Kim1958]

Hi ladies. Just got back from a fabulous holiday to Las Vegas! I went for my oncology apointment the next day to get scan results. They weren't good. One tumour has grown to 9.4 cm. I had pain in Las Vegas and knew something was up. So I've been taken off the clinical trial I was on (Javellin - caelyx and immunotherapy) because it is obviously not working. I started on Carboplatin yesterday. I don't know if this is coincidental, but today I am not feeling pain. I was having pain every time I breathed, but today I have none! I am feeling really down wondering if anything is going to work, but maybe the Carboplatin is working. I'm off to Australia on August 8th, so this will help keep my mind off of this. I'm so hoping the Carboplatin is going to shrink my tumours! Kim xx

[Nicky100]

Hi Kim...sorry to hear your news. This must be a blow for you. Especially after such a lovely holiday. Tr and cherish the holiday and sink yourself into the memories of it. But you have an amazing attitude and seem to be a go-getter! Keep up that spirit as it inspires us all. I know you might face some tough treatment now on Carbo and I truly hope that it goes OK for you? Are you feeling OK enough to travel to Oz? That is amazing!

Lots of love Nicky xxx

[Kim1958 in reply to Nicky100]

Thanks Nicky I do try to keep positive, but yes it was a blow. I feel great and my oncologist wants me to go on the trip as it will keep my mind off of this. I'm really looking forward to it! Kim xx

[Nicky100 in reply to Kim1958]

That is actually great that they have encouraged you to go. I hope you have a fabulous time. Xxxx

[Kim1958 in reply to Nicky100]

Thanks Nicky! I know I'll have a great time! I am fortunate because I have an amazing, kind, and caring oncologist. Kim xx

[ZenaJ]

Hi Kim, so glad you had a good time. Pity to come home to that news but Carboplatin is good. I'm sure it will work.

You have a great time in Australia and let us know what happens when you get back.

Zena x

[Kim1958 in reply to ZenaJ]

Thanks Zena. I had carbo/taxol before and the combination worked well, but my oncologist has put me on carbo only this time. I'm looking forward to Australia. It will be good for me. Kim xx

[Katmal-UK]

Hi Kim

Sorry to hear that you have not been able to continue with your trial. Hopefully the Carbo does the trick! Enjoy Australia xx Kathy xx

[Kim1958 in reply to Katmal-UK]

Thanks Kathy. The trip will help take my mind off of this. I'm really looking forward to it! Kim xx

[Lily-Anne]

My pain eased with carboplatin, it comes back about five days before next infusion, which has to be a good thing. Will they not remove your tumour considering the size?

LA xx

[Kim1958 in reply to Lily-Anne]

Thanks for the info Lily-Anne. My oncologist says they won't remove the tumour because it is in a difficult area. Did the carboplatin work for you? Kim xx

[Lily-Anne in reply to Kim1958]

I've had 2 doses. Third was cancelled will find out tomorrow if going ahead. Dose due to increase as levels went up

Xx

[Kim1958 in reply to Lily-Anne]

I hope you will be able to get your third dose. Thanks for the info. Kim xx

[January-2016-UK]

Glad you had a good holiday in Las Vegas. Sorry you had to come off the trial. How long were you on the trial? I came off (arm A, avelumab only) in May having been on it for six months. As yet, I've not had to start new treatment. Good luck with the carboplatin and best wishes for your trio to Oz.

[Kim1958 in reply to January-2016-UK]

Thanks so much. I was on the trial for 5 months. I got the news on Monday and started Carboplatin on Tuesday. This trip comes at a good time as I need to keep my mind busy. I'm so looking forward to it!! If you don't mind me asking, why haven't they started you on a new treatment? Kim xx

[January-2016-UK in reply to Kim1958]

I recurred only in the lymph nodes and the current size of the nodes is too small to start a new trial. It does seem a bit odd that the growth was such that I had to leave the trial but not enough to start a new one. I think it's because the nodes reduced a lot initially but eventually started to grow again. My CA-125 is also much reduced from initially, although slowly increasing, and I am symptom free.

One thing I'd like to ask you is that I thought the trial was for platinum resistant patients and yet your team have started you on carboplatin. Did they say why?

[Kim1958 in reply to January-2016-UK]

That makes some sense, but I hope they get you on another chemotherapy drug if your CA 125 continues to rise or you get symptoms. Good question about the carboplatin. I didn't ask as I was so upset at the time. I did well on it before, and we think that when my initial treatments were ended, I still had microscopic cells, so the cancer didn't ever go away but continued to grow during the 3 months I was off treatment. I will ask my oncologist when I see him again. Kim xx

[Hidden]

Hi Kim. It's winter here in Oz. I hope you're going to the north where it's warm. I live in Perth (West coast). I was out early to go to the hospital on Tuesday for my infusion & the temp was 0.9c. Had a lot of rain. BUT the sun always wants to shine, so wherever it is you're headed, I hope it succeeds. Best wishes. Pauline

[Kim1958 in reply to Hidden]

Thanks Pauline! I am going to Brisbane where it is 24 - 26C apparently. That is summer weather for we Canadians so it will be perfect! I hope to get to Perth one day. I've heard it is beautiful! I'm visiting friends in Brisbane. There were five of us that got to be really good friends on a tour of the U.K. and Ireland two summers ago, and the couple in Brisbane invited us all over. So it will be a great reunion. I'm really looking forward to this trip. I really need it!! Kim xx

[Hidden]

Hi Kim

I'm having good tumour reduction on carboplatin, so I really hope you have a positive response too. My response was very quick - about 60% reduction in size in 9 weeks. Glad to see you are coming over to visit us in Australia - Brisbane is great at this time of year, perfect temperature. Hope you have a great time, Dawn

[Kim1958]

Hi Dawn Thanks for telling me about your reduction. Your post really made me feel so much better. I hope I can have the kind of reduction you have had! That's wonderful!!! I noticed the day after my first dose (Tuesday), my pain had disappeared. I get the odd twinge, but nothing like the pain I got every time I breathed. It makes me think that the carbo must be doing some good! I'm very much looking forward to my time in Brisbane. It will definitely give me something to focus on other than cancer! Kim xx