i had a low dose of topetecan -40min infusion yesterday and touch wood it went fine and i feel ok so far. they are looking at 3 weeks on 1 week off every friday. sadly i will lose my weekends but a small sacrifice for hopefully a treatment that works. good news i hear caelyx is being manufactered again ready for next year - my onc told me that on thurs no good for me i know but good news for some of us on the site. the kitchen has been delayed due to needing structural engineers report because our house is on original marshland-damn!! and will need a raft structure for the foundation but heho i am allowed to retire on ill health grounds so that is a relief. my onc gave me my medical report to send to my emplyers and that was quite shocking, i felt quite numb to see 6-12 months life expectancy and 20% sucess rate of treatment in black and white but i know that no one knows that for sure and seeing people such as greybadger on her 6th line of treatment i am determined to keep going. My son has got his first job after finishing as his training as a barrister and on 11th October i was soo proud when he had his call to the bar. i cant wait to get the house just as i want it a dream since we moved in in 2004 and a necessity since 2007.So ladies, keep fighting the good fight and enjoying cake and lots of laughs. xxxx Parvin
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So nice to hear your update, and things seems to be going well. and how nice to hear about your son you must be very proud.
I know what you mean it all seems so hard to take in when the prognosis is in black and white... even though you already kno... and things have not changed... But like you said they don't know for sure..sending you best wishes love x G x
Hi Parvin
Good to hear from you again. Hope topetecan will work well for you.
Congratulations to your son, can imagine how proud you feel.
Great to have an update! And great to hear about the treatment. And your son! Shame about the kitchen but heigh-ho one bad = some good. As for that prognosis take heart from the facts a colleague at CAB gave me when I was diagnosed. I got AA under special rules, applied for on my behalf by my lovely Macmillan Nurse, and was depressed becauseit involved the worst case scenario prognosis. My colleague, who specialised in benefits, told me she had lots of clients who got benefits under special rules (terminal with 6 months life expectancy) who had been getting them for over 7 years. It is the exceptions that prove the rule and we have to believe that we are the exceptions! That way we go on living fully to the very end! you just have to see that kitchen finished!
Lotsof very positive vibes pulsing in your direction!
Great news about your son. You must be so proud. Hopefully your kitchen will be sorted soon and you will get your house finished. I am still waiting to get the money together to do mine (ended up using our savings when I was first diagnosed as I stopped work).
I am currently on topetecan and after my first three my ca125 has dropped by 100. I have just started my next 3 so hopefully ths same drop again. I was told there was only a 15 to 20% chance it would work but it seems to be. So fingers crossed for you. The side effects are minimal. I get a little sickness and I have been getting back pain but aparantly that is the tumors shrinking behind my lungs so not too bad. No sign of losing my hair yet after 4 doses.
When I was first diagnosed I was given 6 to 12 months with no chance of surgery when my onc put in a letter. It is really scary reading it though isn't it. Well here I am 2 years later having had treatment and surgery still going strong. My onc now says that I have about 2 - 3 years now. So you never know. I treat prognosis now with a pinch of salt. In some ways it is handy having the prognosis in a letter because I am much better off financially due to mortgage, benefits etc having the proof from my onc.
I wish you lots of luck with both your treatment and your kitchen.
Hugs Jackie xxx
Hi Parvin
Just wishing you all the best for the new treatment and visualising you defying all the gloomy predictions.
Love
Linda
Hello Parvin,
Thinking of you and wishing you all the best with your treatment, you hang on
It is lovely to hear your news, and you must be one proud Mum! Such a joy, I would imagine! Just remember the statistics are often just that, an amalgamation of other women's experiences, not yours ......... Keep thinking of your health, how to build yourself up physically and emotionally, and all those wonderful things that you have to look forward to BUT ..........you don't need to include the actual process of work on the kitchen on the list, just the finished effect You sound like a really determined lady, just keep looking forward and concentrating on when your chemo is finished, then you can start making some retirement plans ....such fun!
What a roller-coaster couple of weeks you've had. Congratulations on your son's first call to the Bar. You must be very proud of his achievements. I also hope you can get the raft situation sorted out for your kitchen so you can go ahead with your dream kitchen. I think we're level pegging on that one - our foundations were of earth and the house built on an ancient river bed. We ended up digging down about 6' and having to replace the drainage pipes but it was worth doing. The structural work is now complete and though I don't have my kitchen in place yet I can already feel how much more warm and comfortable it's going to be.
I was shocked by the news you've been given. I'm just hoping what was written is to help you get your early retirement sorted out and will make your employer get on with it and make a generous settlement for you. Are you feeling well? They do say that it is a very good indicator of well-being with cancer. I'm hoping this is the case so you can look forward to a very long and happy remission.
I hope the Topetecan goes well for you. Isn't there also talk of Avastin being available for women who are platinum-resistant? Will you lose your weekends because generally you feel low after the chemotherapy sessions? Perhaps the Topetecan won't have too many side-effects.
Good for you for getting on with your plans and your hopes for the future. I'm right with you on that score and I'm willing for a successful outcome for you.
Glad your treatment is going well and many congratulations to your son. You are right to be so proud.
Try not to worry about your Oncologist's report. He will have had to describe the worst possible scenario to be sure of securing your early retirement. This doesn't mean it will happen that way. We'll all be cheering you on. Carry on making your plans. Looking forward to hearing about your kitchen as it develops.
I was told on Friday that Caelyx is now being made again butthat's no good for you so lets hope Topotecan works
Don't worry about your onc's report I'm sure it's just to make sure you get your early retirement.
You are just the same as you were before you read that report.
Love Marilyn
Hi Parvin, keeping positive and having something to look forward to helps keep us focused. It was wonderful to hear about your son, and planning the kitchen gives you another thing to think about. My daughter graduated this year (2nd time around) and when she started her course I was sure I wouldn't see the ceremony, so I was so proud on the day..
Stay positive, take each day as it comes.
Good luck
Viv
Urgh. Remember that your prognosis is based on statistical averages, not you. There is every chance that you will buck the odds. Please make sure that you also apply for the benefits you are due - DLA, etc. You have earned them.
It is wonderful news about your son.
I am thinking of you and hoping that this treatment will work. Take care of yourself.
Congratulations on your son's fabulous achievement. I am sure you must be elated!!
Please keep being positive and keep having lots of laughs. I know the medical report made you feel numb however take it as a report to your employers to give you what is due to you. I hope it helps you get all the benefits and support that you are entitled to. Try not to think about it too much since it will make you feel low.
Enjoy your family and look forward to your new kitchen.
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