Re-occurance within 6 months

[hollyp]

I was 1t diagnosed Nov 2014 and had standard treatment of carboplatin and plaxitel with debulking surgery after 3 treatments , in Feb. In May following final CT scan I was told I was 'no evdince of disease' with CA125 down to 7. Mid August I knew things were not right and went back and following CT scan which revealed granules of disease in the peritoneum, and Ca 125 risen to 107 I went back on to carboplatin and caelyx. During this cycle I have come to realise the gravity of recurrence so soon and the magic number of 6 months without recurrence is of major concern. Following a CT scan mid November the consultant was very honest and gave me some stats which although she emphasised that each person responded differently none the less the stats. caused huge anxiety. I understand that I am classed as Platinum resistant. The CT scan mid November suggested that the disease was not active but nor residing. Ca125 had lowered to 38. I am coming up to my 6th and final chemo treatment in late January which will be followed by CT scan and all other appropriate tests. Following my 1st cycle I was over the moo with the results and returned to fulltime work as a teacher. I have continued teaching full time, although following a couple of the chemo treatments I did have a couple of days off. Is anyone else posting on this forum in this situation? If so what has been offered following 2nd cycle of chemo when elapse was within 6 months?

I would be most grateful to know.

Meanwhile very best wishes for 2016. Positivity and the wonderful medical support and friendship extended via personal friends and virtual friendships is a huge help.

Holly.

[Lyndy]

Hi Holly..really sorry to hear that you have recurrence so soon. Have you been on Avastin? I can't offer words of wisdom I am afraid as I am still on shirts stage treatment but I know they use Avastin for platinum resistance . Hope you have better news soon xx Lyndall

[Lyndy in reply to Lyndy]

'First stage' sorry! Predictive 😆

[Hidden]

I would also suggest Avastin and asking your oncologist about it now. It does keep the little beasts under control. You should also be able to have Gem for a future recurrence but there is no point in worrying about that because it may never happen. Also remember that the bloods taken day of treatment may not have been back from lab when you saw your oncologist last. I think you just finish your regime at the moment, have the scan they order and hopefully you will get a good remission. The oncologist genuinely dont know because we all react differently and react to one drug a bit more than another. Try not to worry but do ask about Avastin which is a targeted therapy with little side effects.

[linderruth]

Hi, Holly. Maybe the problem is with your consultant. I was 3 C am starting second line after a limited remission, as well, and thus am also platinum resistant. (I had 4 iv chemo treatments, successful debulking surgery, and two ip infusions). I was also delighted by the initial results. I'm puzzled by the choice to return you to carboplatin. I had the same anxieties as you about the lower odds for platinum resistant patients, but my doctor was very encouraging--no promises, but lots of hope. I started last week on Doxil and Avastan. She said that the implants that showed up on my PET scan were the minimum size to be discernible, and that hopefully they won't be hard to get rid of. Depending on the results, even whenever I am back to NED she may keep me on avastan as maintenance for a while. My doc is a gynecological oncologist/surgeon who is also a published researcher on the subject of ovarian cancer recurrence and recovery, and she is extremely hopeful about an entire paradigm change coming in treatment. She said that a number of hopeful clinical studies are kind of logjammed at the NIH right now as they try to figure out a new approach to the trials. She didn't promise that there would be a breakthrough in time for me, but, you know, the longer we can hold on, the better the chances are that it could happen. Can you talk to someone else who can give you a more positive view of your prognosis? Statistics are so limiting.

[hollyp]

Thank you for your responses. Following surgery I was told that I could not have Avastin as the tumours had shrunk so much in size so I was not eligible for avastin. I fell ouside the eligible 'size'...I was in effect 'too' well. When the disease returned, because I had had such a good response to carboplatin the consultant decided that I should have a repeat of that with caelyx. I did ask again about avastin but was told that I was still not eligible. I have been told that there is a trail at phase 2 and my profile has been put fwd and I also read in the Marsden Winter 2015 magazine that another trial Phase 11 randomised OCTOPUS. I will pursue this option.

I realise that each person responds differently but classed as 'resistant' does appear more of a challenge and I had not read about other persons in this situation.

Thank you for your encouragement.

Holly

[cher10]

I had carboplatin & paxlotaxel for 1st line chemo after full hysterectomy & debaulking. I had a reoccrance within 14 months & this time was offered gemcitabin & paxlotaxel with some side effects to my veins so also had a pic line put in.

After 5 months of this regime I was offered a choice

A. Do nothing

B. Have 9 weekly sessions of carbo/taxel

C. Try for avastin but as I have nodules on my bowel it could cause perforations for the rest of my life while it works

D. Try Anastrozole - one tablet a day

E. Try 3 more sessions as top up of gemcitabin/carboplatin

I chose the daily tablet to have some quality of life as I am now classed as incurable but you never know there may be something on the horizon that may help me live longer than their prediction. I intend to prove them wrong....

Just remember we are all different & our bodies react differently to each treatment. Just try to remain positive & enjoy your life as much as this disease allows.

Take care

Cher X