Looking for advice

[Calluv]

After not finishing final 4th infusion of carboplatin because of bad reaction again ( had reaction on 3 but finished after I was bombarded with antihistamines ) my ca125 was 31 after 5 but 35 after 4. Now 3 weeks later it’s 55 but I feel fine and look well. My only problems are all related to getting over the poison in my body from the chemo.

Doc has said I have 3 choices

1 try Caelyx

2 do nothing and wait and see

3 talk to a dr Jim Coward he has recommended about a trail he apparently was at the Marsden in England and I’ve seen this hospital mentioned on this blog. He is at the Mater in Brisbane, Australia now

My doctor, Keith, said he didn’t feel it was necessary for me to start more chemo at this time as he knows how opposed to it I am because it’s so damaging and I’m not showing any symptoms. I tell him it’s because of my naturopath and bio resonance treatments also the supplements as well that keep my bloods so good and my immune system is very healthy. He always laughs at me but he says it’s fine if that makes me feel good. I’m not BRAC positive and I have no idea what a trial would be like can you still do your natural therapies

Has anyone dealt with dr coward

Thanks for any info

Cheers

I was diagnosed serous carcinoma stage 3

Sept 16 and had debulking radical hysterectomy and 18 weekly taxel with 6 carboplatin then recurrence last September with laparoscopy and a little more debulking then 4 rounds of 3 weekly carboplatin

[Hidden]

I was on watch and wait for 6 months and it was harder than I had anticipated, constant anxiety about a recurrence really got me down. My CA125 was slowly rising but I had no symptoms, when it finally hit 1080 some nodules showed up on my scan. I then started carbo/caelyx, I have just finished 6 cycles and am going to be starting a trial in a few weeks which is aimed at halting the progression. I think you need to do your research into what is available treatment wise, in time you will be able to make an informed decision at what you believe is best for you. We are all different and respond to treatments differently, if you were to consider a trial you would have to discuss natural therapies with your allocated clinical trial team. Good luck x

[Tesla_7US]

Calluv, has your tumor material been genetically tested? That could yield results differing from a blood gene test. You could have somatic BRCA or be HRD+. This is very important to know as therapies are available for certain mutations.

[AusTig]

Where are you Calluv? I am in Brisbane and know patients of Jim Coward and they are happy with their treatment. But many of us are happy with other doctors here. He has a number of trials and tends to think outside the box. If you want to discuss further pm me.

[Calluv in reply to AusTig]

Hi there

Thanks for your reply

I’m in Ormiston, down at the bay

I’d love to speak more or met up

Happy to give you my number I’m not sure how this message works though

[Hidden]

Hi Calluv. When my OC recurred, I wanted to get straight back onto chemo ASAP as I knew my OC likes to travel around my body & I didn't want to give it that opportunity, as every site it would rest on would give it a little place to set seed & do some travelling. However my onc wanted to watch & wait. He explained that the chemo would be just as effective if started later, as it would sooner. Also, he said, the sooner started, the less weapons he'd have in his armoury for later times. As luck would have it, my onc then went on long service leave & I saw his partner, who was starting a trial & was I interested? YES I WAS. So I began Carbo/Caelyx/Avastin. The 6 months of carbo/caelyx put me straight into remission (Caelyx wasn't easy & had to be reduced by 10%) but it did a fine job. I'm still here 8.5 years after initial diagnosis & 5.5 years after starting treatment for recurrence. So for me, I believe I made the right choices (a leap of faith). The fact is, Calluv, you won't know what will work for you until you've tried and so you're going to have to put your faith in something & cross your fingers. I'm still on the avastin (now 5.5 years), so that's been my godsend.

A nice lady from our OC Support group put her faith in blueberries. I'm sure they're good for you but they were not life-saving for her. Sadly, we lost her.

Staying on the avastin has needed me to stay within the rules of the trial e.g. blood pressure, urine, ca125 etc. so I'm doubting that a trial will allow you to stay on your natural therapies but can't be sure, of course.

I know I've confused you here but there simply is no way of being sure.

I wouldn't mind helping you out with your fish & chips. They look very attractive for a natural therapy. Good luck with whatever you decide. Pauline (Perth W.A.).

[Calluv in reply to Hidden]

Thanks Pauline

He fish and chips were good, lol, I was having a pre Christmas lunch with my cousins at the Sirromet winery.

As you can see I’m not doing the whole food thing although I’m not a junk food person and cook and eat fairly healthy food most of the time. I’m just feeling very over things at the moment and so sick of any cure they give you making you feel sicker than before you start it. At the moment I feel fine. I’m know this sounds stupid from a 68 year old women but I wish I could talk to my Mom as I know she would have some great advice on what to do.