Parul: Hi, My name is Parul Bhatia. At 41 I was... - My Ovacome

My Ovacome
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Parul

Parul33
Parul33

Hi,

My name is Parul Bhatia. At 41 I was diagnosed with ovarian cancer. I had surgery and was on chemo( carboplatin and taxol). I got allergic to taxol and resistant to carboplatin. Then I went private to royal marsden hospital. I was give nabpaclitaxil and avastin and was then on maintenance dose of avastin. After a year some lymph nodes were enlarged so the doctor stopped avastin and gave me Cayley and carboplatin. After three cycles the CT scan showed a mixed response. Some lymph nodes had gone smaller and some bigger. Do this was stopped. Now I am off treatment for 6 weeks and a scan will be done in mid August to decide the next course. Anybody in my situation? Please help by responding. Also does anybody know about alternative treatments

12 Replies
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Hello Parul,

Welcome to the forum. I was diagnosed at 38, and am also a private patient at the Royal Marsden. I had carbo/taxol and was allergic to taxol, then I had carbo/gemcibitine/Avastin but whilst I had a really good response to treatment, the Avastin did nothing for me and the cancer came back after 5 months. Now I am waiting to see if I’m eligible for a clinical trial at the Marsden (ONX0801). If not, I’m also going to be trying nabpaclitaxel.

Would it be worth asking about clinical trials? Or maybe a PARP inhibitor if you have had a partial response to carbo/caelyx?

Good luck!

Vicki

Hi Parul, I had successful surgery but chemo did nothing for me and the cancer returned during frontline. I was offered caelyx but I decided to pay for a consultation at the London clinic and am now on a clinical trial called Patriot- the drug AZD6738 which has kept me stable for 6 months so far. I go to the UCLH Research facility but the trial is run by the Royal Marsden. There was an article on the BBC news page about alternative therapies - it said that conventional treatments were more successful and that alternative therapies should be used with care in case they interact with conventional treatments. However I think eating well will always be a good thing although there is no proof that any particular diet makes a difference. I am thinking of trying Reflexology in the hope it might help my kidney problems.

If your cancer was hormone sensitive - the tumour can be checked for this - hormone therapy may help to hold back the growth for a while. I am currently taking Letrazole with little in the way of side effects, &see my oncologists in a couple of weeks to see if it's working. I realise these drugs are not for everyone. Also, as others have suggested, there might be a suitable clinical trial. It's scary I know when things don't respond or there is a mixed response. I had a mixed response to Taxol, &Caelyx was discontinued after 3 infusions because all my tumours were still growing. But there are other options out there. Good luck. Di

Welcome to the party 🎈

I am apparently platinum resistant. Not that I am confident of that particular assumption. I’m waiting for the day when they test sensitivity before they give the drug. Like hair colour!

Do you have a solid or fluid tumour? Do you have any mets? Or confined to lymph nodes? If it’s confined I’d be asking about pros and cons of surgery

Do let us know how you get on

LA xx

Thanks a lot for your replies

Hi Lily,

It’s currently the lymph nodes

I am having pains in my groin on the right and the right thigh is swollen. Had anyone experienced this. I have a history of few lymph nodes involved in the right pelvic area and I am very scared. They have ruled out a blood clot and my CT scan has been pushed forward to tmrw. Am very scared. Anybody in my situation

Hi,

Does anyone know about the various clinical trials for platinum resistant ovarian cancer

Hidden
Hidden

Cancer research, Ovacome and Target Ovarian cancer all have clinical trial databases which you can search. Different people find some work better than others.

The most comprehensive search engine I've come across is smartpatients.com/

You have to join the community but you can end up getting a wider range of interesting results ( perhaps for the future, is always my thought)

Parul33
Parul33
in reply to Hidden

Thanks I will have a look at the website

Hi if you read my posts I’m platinum resistant on CEBOC trial doing well but it’s only being run at the Christie I’m afraid

Parul33
Parul33
in reply to BeeWild

Thanks I will mention to my oncologist

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