Just a little moan!

[hereshoping]

Not really a moan. Diagnosed August 2010. Had chemo surgery chemo, remission for 13months, began Carboplatin in Feb this year, 2nd round had a bad reaction so couldn't have it. (My scan had come back with enlarged lymph nodes in upper abdo). So we decided to wait and see as my CA125s had halved. May 2012 began treatment again as CA125s rose and they are a good indicator in my case. Started on Gemzar and had my first 9 rounds. During the end of those rounds I began retaining fluid and became very short of breath. Was going to Perth in August for a holiday so we decided not to give me any chemo until I came back and My Chemo Doc said she would investigate the Gemzar further. When I saw her on the 6th Sept she said they had decided not to proceed with the next round of nine as it was causing the sob. My follow up scan had shown some fluid below my lungs and the radiographer had noted that it could be treatment related which it obviously was as I have been really good since I stopped. So, it was wait and see again which I have been doing but have been having symptons again so had a blood test and my CA125s have doubled since end of Julys test. Scan showed no more enlargement but lymph nodes haven't shrunk at all either. See my Oncology Doc on Wed so will see what he says. Next step will be oral chemo when I need it. Such a shame the carboplatin didn't suit me this time as it worked so well for me the first time round with the taxol and the first round I had of it this year it knocked my tumour marks down by half after one round. I can be desensitized to another platinum drug but that one we are keeping up our sleeve until absolutely necessary. Who has had oral and how did you find it. I know I will possibly lose my hair again but thats not a problem. Just wondered about the other side affects. Thanks for listening. Plus my pathology report said I have primary peritoneal ca. Chris.

[wendydee]

Hi Chris, I can't help except to say good luck with finding an answer. I know they have the experience and expertise to maybe give you some answers on the Ovacome helpline on 08453710554. They are not there till 10 on Monday though. There are also some bits of info on fact sheets on the Ovacome website that relate to treatment and chemo. But maybe you've been there. Anyway, just wanted to say all the best.

Love Wendy xx

[Hidden]

Hi Chris,

Sorry.. I am not much help... but sending you my best wishes love x G x

[sarah1963]

Hi Chris

You can moan as much as you like.

V impressed by you not allowing the chemo to get in the way of your holiday. You have to get your priorities right!

Thank you for giving us details of your treatment. I had never heard of 'Gemzar' and didn't realise that desensitivising was common or in fact oral chemo.

You sound very brave and I hope your meeting on Weds goes well.

Love Sarah

[Whippit]

Dear Chris

It's good to moan and perhaps you'd find a blog helpful that I wrote recently - Professor Hani Gabra's Presentation - Professor of Medical Oncology - Imperial College - 25 September 2012 - he explains that all of us become platinum resistent to some extent.

I thought you might like to ask your local hospital about Professor Gabra's research. I'm aware he's looking for 5 women to take part in the first trial this year, and then more next year. He has links with 12 centres of excellent across England and Scotland. I just wonder whether it's worth asking as his work may help you with the platinum resistance. I've noted recently more and more of us are being advised we can be desensitized to Platinum-based chemotherapies.

I think perhaps we're on the same path as my tumours had spread to the lymphs and I'm awaiting a 12 month check to see what's been going on. I've felt brilliant until quite recently when I've a few niggling aches and pains.

Good for you taking the holiday in Perth. I admire that and hope you had a really great time and put this out of your mind for a while.

Please let me know how you're getting on. Help really is at hand and it's coming soon.

xxx Annie

[hereshoping]

Thanks for your replies. I am ok and still working, enjoying my grandchildren, dogs gardening etc but sometimes its good to get down in the dumps and just be selfish with yourself. Gemcetabine is the Gemzar chemo. Before I went to Perth to meet my new grandaughter, I was struggling for the first time about this being the rest of my life but when I got back I had come to terms with it. There are alot worse off than me but I have listened to the advice of my wonderful Oncology/chemo Doc and don't minimize whats wrong with me anymore which I was doing and feeling a bit guilty about it. My grown up children are great and probably worry more than me and sometimes think I am not taking it seriously enough but you have to get on with your life. I laugh alot as there are funny things that happen during treatment and you meet some really neat people at chemo who I would never have met. One thing I did when I came home from holiday was go and make my funeral plans which horrified some of my friends and work colleagues but at 58 I think it is a good idea even if I didn't have cancer. I felt so great when I had done it and don't have plans to be take them up on it anytime soon!!! Ok, will let you know what we all decide on Wednesday. I am sure it will be wait and see again which is ok by me as I have a really good group of health carers here in Taranaki, NZ where I live and they don't muck around. Thanks for the blog and I will look it up. They want to keep the platinum one up their sleeve as it means when I have it I have to go to another city for a few weeks to be watched while I have it. OK. Thanks everyone. Hope you are all doing ok. Stay happy no matter what. Regards Chris.