Has anyone been diagnosed with Paraneoplastic syndrome?

[caz54]

I posted a while back that I was on the Trioc trial, and had started to have problems with my balance. I was taken off the trial and have now eventually seen a neurologist who feels I have PNS ( the above) I was diagnosed stage 4 OC in 2014 and had debaulking surgery and 6 rounds of Carbo/Taxol I responded well, then went on Avastin.

Early this year my CA125 started rising, a CT scan showed I had two lymph nodes in my abdomen and I was offered the trial. I am now watch and wait, I would be interested to hear from anyone else who has PNS. What treatment you may have had, how it has affected you and at what stage you were diagnosed. I was told that commonly people who are yet to be diagnosed with cancer tend to diagnosed with PNS first. And others maybe a few months after a cancer diagnosis. Not years as in my case.

Caz x

[Bev155]

Hi Caz,

I am undergoing tests at the moment but everything is pointing to PNS.

Complete defaulting in August 2015 and then preventative Carbo/taxol.

The PNS has attacked the retina in my right eye and have just had a new blood test that will confirm retinal antibodies.

The doctors are talking about a plasma exchange to clean my body of the antibodies and the ophalmic dept have contacted my oncologist but my CA125 remains low.

I keep being told that I am very rare but I don’t want to be rare!

I am very scared that I am going to lose my sight.

I am in London where do you live?

Keep in touch

Bev x

[caz54 in reply to Bev155]

Hi Bev, Im sorry to hear that you are having to deal with this horrible diagnosis as well. I live just outside Guildford. Do you have loss of balance as well? I have problems with my sight but we havent began to explore that part yet, mine is more of an occasional disturbance in my eyes.

I had never heard of it before, and also do not wish to be rare! Do they think it can be repaired or just slowed down? I was told it is progressive.

Im not a its not fair person, but I am feeling like that right now!

My CA is also not too high 495 a few months ago, I am seeing my onc next week so will get an update on that.

Are you able to drive, work?

My thoughts are with you

Caz x

[Bev155 in reply to caz54]

Hi Caz

It has only attacked my right eye, I have been told that very rare as only in one eye and it is rare to have detected it so soon.

They don’t know!!

They say it could stay the same or get worse.

I am ok to drive at the moment but will get that confirmed again tomorrow at one of the numerous appts I have.

I have already had tests at Moorfields and having them repeated next week to see if any deterioration since August.

My CA125 is 12 and has been for about 18 months.

I will let you know if anything is new after my appt tomorrow.

Take care

Bev x

[caz54 in reply to Bev155]

Good luck, Im thinking of you.

Caz x

[Lilo83]

My mum has paraneoplastic syndrome. She was diagnosed with stage 4 ovarian cancer last year but responded well to chemo and was given the all clear. However at the end of her chemo she was put onto avastin to reduce the chances of the cancer returning. Within a few weeks of this she was wobbly on her legs which steadily got worse then her speech began to slur. After a few months she had a sudden, dramatic decline. In this time she was being batted between various consultants who were looking at pns but with no urgency whatsoever ever, until the sudden decline hospitalised her.

When I asked the question ‘could the avastin have caused this?’ I was told maybe, but we’ll never know. I’m perplexed at how no one seems bothered that something being suggested to patients as the holy grail of cancer treatment could cause this. Nothing like this was explained to my mum when she was put on it. I’m also very frustrated at the lack of information and support about this condition.

[PeterBerlin in reply to Lilo83]

Hi Lilo, same here, my mum also had ovarian cancer, surgery, 6 cycles of carbo/taxol and avastin and 2 more cycles of just avastin. Every time it got worse (wobbly legs). Now she is in the wheelchair and with 24/7 home care. At first she was diagnosed with Paraneoplastic Stiff Person Syndrome, now they think its a Progressive Supranuclear Palsy (PSP). I am fairly sure it had to do with the avastin but same as you doctors don‘t think so... How is your mum now?