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Prognosis..?

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Hello..

My name is Marisa and I live in London. I found this site by accident but it looks like the only REAL way to get any information regarding PPC; everything else being Ovarian based!
I was diagnosed in September last year with 111C PPC. I had 4 chemo's (usual blend!), surgery, then 2 more chemo's finishing in April. I went back to work and just had my first 3 month check last Thursday and all was well along with my CA125 being down to 9. Great...
Ok, so why do I feel I cannot really "let go"????
Do we really ever fully recover from this? I would love an Oncologist to be able to tell me the honest answer but I understand they cannot commit for fear of reprisal.
Be interested to hear any comments....

Thanks

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I too am from the UK - Nottinghamshire. I have stage 4 PPC and have completed 2 cycles of carbo/taxol. My CA125 finished at 116 this time round in March 2011. I beleive this is a chronic cancer. We have all been told it can't be cured and our treatment is seen as "paliative" rather than "curable". However It is 22 months since my diagnosis and I am feeling realtively "normal". I do accept that in time I will need more chemo and that will bring my CA125 back down again. And on it goes. I am hopeful of a long life on and off chemo. I have a friend with stage 111C PPC who, in September will be 4 years in remission. When she reaches 5 years in remission she will be classed as cured .... :)

So try to remain positive as I do and enjoy the gift of life.

Tina xx

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Hi Tina

Ok, thanks for that. It's encouraging to hear about your friend who has gone as long as 4 years in remission. I shall be 54 next week, do you think age matters? I have read lots about ladies in their 70's with PPC...
I feel very upbeat about things and have been so throughout really. I have tremendous support from family and friends and was virtualy given celebrity status by them during treatment!
I guess I feel a little "whats all the fuss about" kinda thing and yet still a little scared to become too complacent. Can it really be THAT easy to beat?? I suppose we are all individuals though and response to threatment varies accordingly. I have been treated by Guy's and St Thomas' hospitals in London and they have been very good yet I don't feel that they want to give away too much information...or maybe I should have asked more:)
I have read through comments that you've posted over time here and admire your knowledge and attitude.

Wishing you all the best,
Marisa

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Marisa: when you try to get information on PPC from the Internet, it's all doom & gloom. I think that a lot of progress has been made with this disease & the Internet has old statistics. Think of PPC as a type of cancer you can live with.

LQ

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Thank you LQ

I think this site is going to help a great deal!

Marisa

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Hi Marisa
I am 51 and was 49 when diagnosed. Yes I think age, state of mind, fitness and support all help to give you a fighting chance. I tolerate my chemo really well both times which is good news as it means you have the options to have that chemo again in the future.

Regarding information, I'm afraid I am the sort of person who needs to know EVERYTHING and I am constantly asking my oncologist questions. So if you are worried or need to know some thing just ask & it may be something I have already asked about !!

How was you diagnosed? I find that most oncologists operate in the believe that cancer patients don't want to know too much about what is happening to them so they tent not to volunteer information. If you ask, though, I am sure they will be tell you.

Love Tina xx

Best Friend
Posts: 222
Joined: May 2011

I had my mom dead in 6 months. I now realize that this cancer is really getting around to being one of the "curable" cancers. I too am a little skeptical. I don't wanna say that it all worked out too easy cuz at work on wednesday i was in tears cuz mom could not take care of herself to even get a drink. However, now this last chemo on friday was only taxol and so far so good. I guess maybe the carboplatin was worse for my mom. She isn't doin cartwheels but she IS sitting downstairs with us. Tonight she had dinner with us which she has been missin alot of sunday dinners. She ate two plates of spaghetti and meatballs. She has dreams of food. Ha! I am off friday so i have decided I am definitely goin to chemo with my mom to see results of bloodwork and ask some questions.
And yes, Tina, my mom may be in remission after 7 more chemos. So, i never forget something bad could happen, but i focus on her moving to the finish line to live free of chemos and stuff for hopefully a couple years atleast.

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