Have I waited too long?

[Neona57]

I had a scan on 17th August which showed a recurrence in my liver and peritoneum less than 3 months after frontline carbo/taxyl. I have clear cell ovarian cancer. My onc offered me caelyx or the Niccc trial which would be either caelyx or nintedanib. The Niccc trial was still in the setting up process. Meanwhile I paid for a consultation in London and was sent to the UCLH research centre with the possibilty of being offered a phase one immunotherapy trial. My tumour sample was sent to UCLH for testing. However the hoped for trial is not starting yet and UCLH said they would try to match me to something else. However nothing has happened and Christmas is approaching. It is now 3 months since my scan and I don't know what to do. Is this a reasonable time to go without treatment or is it ridiculous?

[January-2016-UK]

I went from May to October this year without treatment, hoping for a suitable trial. However I was being monitored every month and with the CA-125 slowly rising each time, I was sent for a scan and so started weekly Taxol last month.

Whose care are you currently under? They should be able to advise you if it is safe for you to continue waiting or maybe start the NICCC trial if other trials are still not ready.

All the best!

[Neona57 in reply to January-2016-UK]

Noone knows how much it has progressed as I have had only one scan since my op in December when I was NED. They won't use my ca 125 as it was only 67 at diagnosis. I mentioned another scan and was told I would get one when the trial started. Feeling between a rock and a hard place. I'll try UCLH and my CNS and see if the consultants can talk to each other. I am still under the care of Truro but they are standing back waiting for UCLH.

[chrissapam in reply to Neona57]

I eventually...in reality was not too long...got hospitals talking to each other but I think it was largely nurse led electronic communication. Once they trust each other I think its generally ok. Suspect they don't like the idea of being undermined....like all of us I guess! Good luck! Chris xx

[January-2016-UK in reply to Neona57]

If CA-125 is not a marker for you, Another consideration is if you are having symptoms. If you are, a scan is usually ordered but you also really need to be given some idea of timescales, if for nothing else then to be sure you are not being overlooked.

Ask if the trials unit would be the one to order a scan, outside of the trial starting. It maybe your Truro hospital.

Everything may be fine waiting but you need reassurance that you've not fallen through any cracks.

All the best!

[lorraine71-Australia]

Hi, Since it's been 3 months since you had a scan could you have your 125 blood test and a scan to see what is going on arfter 3 month, this then would give your oncologist and yourself a better understanding of what treatment you could have. I think this is what I would like to know, talk with your oncologist you need to feel at ease with your treatment.

I can not give you advice on the trials or nintedanib, I have had a lot of experience with Caelyx this has been successful for me but as you know chemo can work for one person and not another.

I hope your treatment plan is sorted out soon ..take care Lorraine xx

[Neona57 in reply to lorraine71-Australia]

Hi Lorraine, unfortunately the ca 125 is not a marker for me but I would like another scan. Did you have caelyx alone or with carbo? I am told it has a low response rate with recurrent clear cell. I have been offered it as a single agent as I didn't respond to carbo ot taxyl at all.

[lorraine71-Australia in reply to Neona57]

Hi, I don't know much about recurrent clear cell I have high range stage 3.

True the 125 is not a good marker for all it has been for me with scans, when I was first diagnose it was 2500.

I'm on my 5th line of chemo in 3 years , I had single caelyx as my 3 rd line and carbo/caelyx as 5th line. I'm about to have my last one next week it will be my 8th treatment which has been 1 every 4 weeks, before starting carbo/caelyx my 125 had gone up to 1300 my last blood test it is now 54 and I still have one more to go, I've been lucky that it has worked for me.

My oncologist is giving me a break over Christmas then in the new year I will be going on single caelyx as maintenance at a lower dose.

Take care let us know how you go with your treatment,,Lorraine xx

[Jessica-DianeB in reply to lorraine71-Australia]

Hi Lorraine,

I'm so glad to here caeylx is working for you and I didn't realise you could have it as a maintenance drug. I'm presuming you are still platinum sensitive? If not, at what stage did resistance occur? Xx

[lorraine71-Australia in reply to Jessica-DianeB]

Hi Jessica, Caelyx as maintenance was not an opinion from my oncologist, Amanda she was like a lot of oncologist who are aware that too much Caelyx is not recommend.

I've had 6 round as 3rd line treatment with some success.

When she suggested Carbo/Caelyx for 5th line I was surprised,

As I said next Monday I will be my 8th treatment of carbo/caelyx. I'm pleased with the results. Amanda has keep a close on my heart results and all is good.

About 3 months ago I went for a second opinion to a prof at one of our largest cancer hospitals and he said if I was his patient he would put me on caelyx maintenance when I finish my treatment, he has ladies on maintenance going on 19 month with no problems.

He wrote to Amanda knowing his standing in the medical world here and in the USA she is pleased to put me on maintenance, I'm lucky I have a oncologist who is so pro active.

if you would like to read some information about maintenance, also on this site and others there are ladies on this treatment.

This whole chemo journey is a learning curve for us and our medical teams so awareness and research is the key .

Take care hope all is well Lorraine xx

ahcmedia.com/articles/10342....

ps Doxil is also called Caelyx

[Sunnylee]

I have clear cell since 2007. Has spread to my lungs but gemzar seems to be working for now. Last ct scan indicated no progression of disease. Hoping for same results next time.

[Neona57 in reply to Sunnylee]

I asked my onc about gemzar and he said it wasn't used much now-obviously he is wrong. I have read about others with clear cell who have had success with this.

[Sunnylee in reply to Sunnylee]

I live in Southern California. There are several patients at the infusion center on gemzar here.

[antheamary]

Like you i ended up waiting to start a trial. I stopped caelyx, not working then waited for my biopsy to be matched. Then they lost the biopsy. Then they promised 2 other trials. When i got to see them i wasnt compatible. Then i lost it. Couldnt stop crying. I was sent back to original hospital to plough on. Then i got a phone call to say they found my biopsy & i was compatible. So i know what the wait does to your state of mind i am very sympathetic.

[Neona57 in reply to antheamary]

Are you on the trial now and how are you doing?

[Nicky100]

It sounds like you are having quite a wait. And I understand why you are keen to start treatment or at least be given some sort of direction.

It would be really good if you could have your ca125 done and to compare this with your last one. this would be one very important step and, if you have a blood form, you could action yourself through your GP?

Secondly, I am wondering if your original Oncologist is in the loop of you going to London? Have they recommended this or did you seek an independent second opinion.

You have paid for treatment options in London and from what you say they are either not delivering what you hoped for or what they promised.

I would chase them and ask for some better answers.

You are right that you need some answers before Christmas for your peace of mind and an important ca125 result will tell you how long you might be able to wait.

Good luck. Nicky xx

[Neona57 in reply to Nicky100]

Yes my onc in Truro supports me in going to London and said that, in my position, he would be doing the same. However that was some time ago now. None of the onc's are interested in my ca 125 as it was only 67 when I was diagnosed with Stage 3C. I was feeling excited about going to London but am now completely deflated and think how much easier it would be to go to Truro. Am afraid that taking part in one trial may disqualify me from another but I suppose that that is the way it is.