Hi everyone

Hello all,

I know I hav not been actively on line for a while but have been reading everyone else's contributions. Things have been hairy since November where I stopped after 6. rounds of weekly topetecan as there was no improvements.

Since then:

Was refused on a biological trial due to an admin error.

Had one dose of weekly taxol which left me in and out of hospital.

Have had numerous drains of fluid.

Was told by palliative care doctor well it's not going to get any better.

I am feeling well at the moment although I need a syringe driver with metochlopromide that's infused obverse 24 hours so I'm limited.

I'm taking a day at a time and hopefully will move back home after nearly 8 weeks at my mums ( going to live with ur mum does not help) and my dream kitch is nearly done. I was wondering if any ideas on oral chemo as I would like to discuss this as the next option. Stay well ladies and keep up the good fightxxx lots of healing prayers for you all

17 Replies

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  • Hi Parvinc

    I am sorry to hear that you haven't been having things easy lately. I hope you can move back into your home soon and enjoy your dream kitchen. I am sorry but I don't know the answer to your chemo question but someone will, i am sure. I just wanted to send you a big cyberhug and say good luck with finding the next stage in your treatment.

    Love Wendy xx

  • Dear Parvinc

    I'm really sorry to hear you've had such a lot to cope with. I don't know anything about oral chemo and hope someone has some ideas for you.

    It is indeed tough moving back to your parents' home. Do you have a date fixed for your lovely new kitchen to be finished so you can move back. I hope that will cheer you up as much as mine has. I've got a little space by the window where I can put a reclining chair and look at the garden and watch the birds on the feeder just outside. It is a very special place for me and my favourite spot in the house. I hope your new kitchen gives you as much joy and you have better experiences with your oncology team.

    xxxx with much love Annie

  • Dear Parvinc

    How lovely to hear from you, I was aware that you hadn't been on for a while and was only thinking about you earlier. I'm glad to hear you are staying strong and taking each day as it comes. You have obviously gone through an awful lot...and still are!

    Do hope your kitchen is done soon and you can go home and enjoy it.

    Good luck with whatever comes next, please keep us posted.

    Love Linda xxx

  • Hi Parvin

    It is really good to hear from you again.

    Sorry things have been so rough for you. That is really too much about the biological trial and the admin error!

    I can't really offer any help on oral chemo. I do know that sometimes when other drugs haven't been working people are given tamoxifen, and that sometimes has good results.

    Best of luck

    Monique x

  • Hi Parvin,

    Lovely to hear from you, be assured that even when we don't hear from you for a while you are still in our thoughts, (we just don't like to be intrusive) but I am glad you have given us an update, hope it won't be too long now before you move back home.

    Love and best wishes x G x :-)

  • Hi Parvin,

    so sorry to hear you have been having a rough time lately, sending you positive thoughts and hugs,

    Jan x

  • Sending best wishes. I am on the Rotterdam Regime and part of that is an oral capsules Etoposide. I don't know yet how effective it is as I have one more treatment to have next week and my scan April 4th. Will post my result when I get it. The oral capsules then continue 21 days on 7 days off for 6 to 9 months depending on how the body copes with toxicity.

    Good Luck with finding another treatment.

    Love and hugs

    Hilary xxxx

  • Hi Parvinc

    Good to hear from you. I was wondering how you were doing. Sorry you've had such a rough time and hope you will be able to move back home soon and enjoy your lovely new kitchen.

    Love & best wishes

    Mary xxx

  • Dear Parvinc ,

    Keep the thoughts of going home to your band new kitchen in your mind and lets hope your return home will not be too far away now ...

    So very sorry to hear that things have been very tough for you of late .

    Take care now x

    Love Jan xxxx

  • Hi Parvinc,

    This is the first time I have contributed on this amazing site but I just wanted to let you know the oral treatment that I am on is cyclophosphamide daily plus Avastin every three weeks. After 8 cycles my CA125 has dropped from over 2500 to 39. Hope you find a treatment that works for you soon and enjoy your new kitchen.

    hugs

    Janice

  • whoooah - Janice, everyone will be wanting to get in touch with you to find out about Avastin. That's an amazing CA125 drop. You're obviously on a regime that suits you very well. I'm really delighted for you.

    Loads of love, Annie

  • Hi Annie

    Thank you for your wonderfully supportive comment you really are a true inspiration on this site. Hope you are doing well and that you don't get too snowed in over the next couple of days!

    Take care

    hugs

    Janice

  • Hi Janice

    I went straight to the weather forecast to see if snow is likely. Just rain today in Cardiff but it looks as though it might brighten up during the week and we can look forward to some sun which always cheers me up.

    As you're quite new to the site you might not have heard about Members' Day on 18 May in London. You might be interested in that.

    xxx love Annie

  • Hello,

    Sorry things have been so rough for you. Are you thinking about getting a second opinion? I hope the new kitchen takes your mind off things for a while. I don't know anything about oral chemo, although I have heard of women who are on it.

    I am thinking of you.

    Cx

  • Thank you lovely ladies I'm overwhelmed by all your comments as usual. I'm hoping after the house is back in order to go back and see where to next. I keep being referred to the palliative care team at the hospital and the local hospice. I'm hoping my medical team don't know more than I do but at the moment I am feeling so well ignorance is bliss. I have a syringe driver which is giving me metochlopromide 24hours a day as I really suffer from sickness and eating. I'm going to ask for a scan in April and then will face the music. Thanks again ladies I feel awful that I dnt blog often but sometimes you feel that what you want to ask or say has been said. A veteran to the site it's coming up to 3 years end of may here's to a few more eh.

  • Hi Parvinc

    Sorry to hear you're having a bad time. I'm like you with this site, I read every day but usually someone has already said what I wanted to say and the ladies on this site are so eloquent, but I just wanted to send good wishes to you. Enjoy your nice new kitchen.

    Love and hugs Chris x x

  • Hi Parveen

    So sorry that you are going through this. Wow , 8 weeks with your Mum , I'm sure you will be delighted to get home and into your new kitchen. You have been through so much , have you had a satisfactory explanation or an apology for the admin error re your treatment.

    I know what you mean about feeling a veteran , I also first started using it in March 2013 and then there were only a few posts a week. It,s sad there are so many people out there , but this site is just an amazing resource.

    Take care of yourself

    Charlie xxx

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