Battling ovarian cancer (recurrance): Hi, My name... - My Ovacome

My Ovacome

14,172 members16,664 posts

Battling ovarian cancer (recurrance)

Grace-53
Grace-53

Hi,

My name is Grace and I am new here.

After the 1st hysterectomy and debulking, followed by a round of chemo (carboplatin and paclitaxel), I was in remission for 11 months. A CT and PET scan then showed some nodules. These were removed by a key hole surgery and I am currently receiving chemo again, to deal with smaller scattered bits of cancer in the abdominal cavity. This time it is cisplatin and gemcitabine, with Avastin thrown in recently too. I am about half way through the second round of chemo, but my CA125 is not going down. It is still very low compared to other people (it was only 16 when I had my operation and now it is 30, going up little by little despite the chemo). I am worried that I became resistant to the drugs and am thinking about enrolling myself in the cantrixil clinical trial. I live in Perth WA and the trial is in Sydney, Brisbane and Adelaide. I don't know how to work out the logistics of it. The cost of flying in/out will also be a factor. Not sure which hospital to choose either. Have any of you been in this situation? Any other thoughts?

Warm hugs to everybody.

Grace

15 Replies
oldestnewest

Hi

Welcome to the party 🎈

Cantrixil is a phase one study. Are you sure you want to have a previously untrialled drug when currently your status sounds quite stable. The trial is currently working on the most tolerable dose before it moves to ph1 leg2

I was told by a drugs company researcher that phase one is generally only advised for advanced disease

However that’s only my opinion. I would call the drug company and ask for their feedback and the feedback of a second opinion

Good luck

LA xx

Hi Grace

Sorry you are in this situation. I am also facing my first recurrence but haven’t started treatment yet. I went to a specialist centre to see if I could do a trial and by the by got a second opinion on the treatment proposed for me by my non specialist hospital. You could try this route too which might help you decide if this trial is a good idea xx

Hello Grace,

Welcome to this supportive forum!

Sorry to hear about your recurrence. I can’t comment on the hospitals in Aus, but some ladies on the forum are from Aus.

I think a second opinion would be a good idea. You need to have confidence in your treatment. Lily-Anne is very knowledgeable on trials and some may not be suitable?

Sending best wishes on a sunny English Autumn day xx 🌾🍁🍂🌞

Hi Grace sorry about your recurrence and your not responding to treatment I’m in exactly the same boat only I am on a trial! I think LA is right the trial I am on is phase 2 so dosing and probable side effects were more or less worked out.

Are there any specialist cancer centres in Perth? I would research the best ovarian cancer specialist in Aus and have a consultation with them before you decide what to do next x treatment is arduous without the travel on top and a 5 hour flight each way to Sydney will not be easy whilst your having chemo etc and may not be a good idea if your immune system is affected.

Visited Perth a couple of times as my niece lives there, it’s beautiful and fish and chips on Cottesloe Beach whilst watching the sunset will always stay in my memory as special xx

Let us know how you’re doing and welcome to this great group of people who are a great support and knowledge xx

Take care

Bev xx

Yes I recurred during frontline chemo and am on a clinical trial in London. I travel over 4 hours each way to the hospital. It is hard but has been worth it so far.

Hi Grace, I've been having treatment for 4 years now had most chemo my oncologist suggested I go on the trial for cantrixl, this is not chemo so I had to go off chemo , Cantrixl is a drug to make cancer more sensitive to chemo. it is by Ip port.

It was Phase 1 I did 7 weeks and had to stop it was effecting my kidneys. It was a hard drug.

I had 5 recurrences over 4 years and found Caelyx was the most successful chemo for me ,my history is when I go of chemo my 125 goes up .

I think you still have options with treatments, if your current treatment is not working.

As for the Cantrixil trial I went to Westmead Hospital for treatment I think it is now in 2nd phase,talk to your team about other options before deciding.

Take care and you can ask me any questions if you need to ..Lorraine

Hi Loraine,

So Cantrixil has not produced any positive result at all?

You said you managed 7 weeks - ho many weeks is full course?

Was it Cantrixil alone, or Cantrixil plus standard chemo?

Do you live in Sydney?

Please let us know how you are doing.

Warm hugs

Grace

Hi Grace ,Cantrixil was not good for me It was phase 1, it was Cantrixl on its own I did 7 weeks and found it hard going, the fatigue was the worst and it is by IP port ,I have a port in my chest this is for chemo I've had it now for over 2 years no problems.

The ip port was very uncomfortable I could feel it when I walked.

The course is 9 weeks and then they will introduce the chemo with the Cantrixl this would go for 18 weeks in all, at the 18 weeks it is hope results will show up.

But it's still early days with the trial, in the time I was off chemo doing the trial my 125 went to 300.

After this I went back to my oncologist and we tried chemo it was not working, so my oncologist told me no more options ,i have been of all treatment and in palliative care, to day I picked up my 125 it is now 2000, I'm hoping this second opion I'm having to morrow will give me a option.

I live in the blue mountains and go to Penrith for treatment to morrow I'm going to see a prof at Randwick Women's Hospital, I've heard good thing about him ,

how are you going hope the treatment gives you good results..Take care of yourself Lorraine xx

Thank you ladies for taking the time to respond. I understand that to go on the trial, I have to either complete or stop the chemo treatment I am on at the moment. I think it's a little early for me to make the decision. I may still respond to the treatment, now that Avastin has been thrown into the mix too. I must say that with Avastin, the side effects are much worse than without. Feeling very weak right now.

About Cantrixil trial - it looks like they are done with phase 1A (worked out the maximum tolerated dose) and are now in phase 1B, which is testing the drugs efficacy on a small group of people).

Will keep you posted. All the best to you all.

Hi Grace ,I think it is a good idea you are going to keep up with the treatm4ent you are on and as I said there are still options for you.

The trial was the hardest treatment I had in 4 years, my oncologist has told me I have no more options and have me on palatine care now, but Monday I'm going for a second opinion just for my own peace mind.

Take care Lorraine xx

Looks like you're doing it very tough. Hang in there.

Love

Grace

Hi Grace. I had a recurrence 11 months after first line treatment with Carboplatin/Paclitaxel also. My CA125 had gone down from 750 to 10 with first line, however started moving up ever so gradually, until at 11.5 months it was 57. They also picked up some nodules, and stranding in the peritoneum, plus a large cyst. They have decided not to operate just yet, rather to monitor. I have just started (today) my 5th cycle with Gemcitabine/Carboplatin, and this appears to be being effective, (fingers crossed), with the CA125 now at 12 for last two tests.. I have 2 more cycles to complete. Gemcitabine badly affects your bloods. I have had two blood transfusions in the past few weeks, and Likely another next week when the effects of today are felt. Each cycle it gets a little worse.

If you are only at 2 cycles, you might need to give it a little longer before deciding if is not working, mine only really kicked in at 3 cycles, and then it went down with quite big reductions.Avastin is not funded in Nz, but my Oncologist did say it is commonly added in with the Gem/carbo for second line. In my case he did not think not having it would be too negative. (Hope not anyway),As long as the CA12% is not going up, you should hang in there a little longer. Take care Therese

P.s. I am stage 3c high grade serous, and I also had a debulking operation last year in between two cycles of chemo.

Welcome to the club nobody wants to join but we’re glad exists when we need it! You will find great support and advice here. I can’t advise about the trial you are looking at but would agree it seems early to be looking at a phase 1 or 2 trial when you still have quite stable disease and several other approved drugs to try. Get the best opinion you can from an oncologist who specialises in treating ovarian cancer both with approved drugs and trial drugs, if possible.

Have you had a scan? Sometimes ca125 can go up for other reasons.

Good luck and keep us posted how you get on.

Madeline xxx

Hi Grace. What a fabulous photo. Don't actually have any advice, sorry, but wanted to wekcone you and wish you success with treatment. xx. Maus

You may also like...