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my mom
My mom was diagnosed at the same age as you with pleural effusion as her only symptom. We live in the US near Chicago. She also has had breast involvement. Unfortunately, they weren't able to remove her breast tumor when it appeared and her breast involvement has spread quite a bit. She has been fighting this disease for over 2.5 years so far and has been in chemo non-stop. Many people, however, do have remission, which is what I hope for you.
The best of luck to you. Be careful what you read - most of the info out there is outdated.
Eileen0 -
hi
There is hope. I think it is ever changing. A good moment,then a bad moment, and so on. My mom is 62. She had three rounds chemo, than surgery, than 3 more rounds chemo. Her last check-up she was in remission. So until the end of March she is gonna live life and enjoy it and she is even going back to work twice a week. She had to go on disability because unlike you, chemo was horrible for her. I am pretty sure her battle will someday resume but she has had a ca125 of 3 since November. Welcome!0 -
hi
There is hope. I think it is ever changing. A good moment,then a bad moment, and so on. My mom is 62. She had three rounds chemo, than surgery, than 3 more rounds chemo. Her last check-up she was in remission. So until the end of March she is gonna live life and enjoy it and she is even going back to work twice a week. She had to go on disability because unlike you, chemo was horrible for her. I am pretty sure her battle will someday resume but she has had a ca125 of 3 since November. Welcome!0 -
Your Momeward said:my mom
My mom was diagnosed at the same age as you with pleural effusion as her only symptom. We live in the US near Chicago. She also has had breast involvement. Unfortunately, they weren't able to remove her breast tumor when it appeared and her breast involvement has spread quite a bit. She has been fighting this disease for over 2.5 years so far and has been in chemo non-stop. Many people, however, do have remission, which is what I hope for you.
The best of luck to you. Be careful what you read - most of the info out there is outdated.
Eileen
Hi Eileen
Thank you so much for your post. I do wish your Mom well. It seems the pleural effusion is not an uncommon first sign of this disease. The chemo your Mom has been on for 2.5 years - is that Taxol and Carboplatin or does it get changed around? It seems a long time. I do hope she will have a remission very soon.
My thoughts and prayers are with you both.
Julie0 -
HiBest Friend said:hi
There is hope. I think it is ever changing. A good moment,then a bad moment, and so on. My mom is 62. She had three rounds chemo, than surgery, than 3 more rounds chemo. Her last check-up she was in remission. So until the end of March she is gonna live life and enjoy it and she is even going back to work twice a week. She had to go on disability because unlike you, chemo was horrible for her. I am pretty sure her battle will someday resume but she has had a ca125 of 3 since November. Welcome!
Thank you for your response to my post. Wonderful to hear your Mom is now in remission and that she is going back to work too! That is great news. I am awaiting my first CA125 test result since the first chemo treatment and hoping it will have taken a dive! When first checked was 550 and the following week 650 then chemo. I had it all checked out 2 years ago as part of a full check up and was 11 so I know the PPC has developed in the last 2 years. All the best to you and your Mom and enjoy all those good times.
Julie.0 -
CA125 resultBest Friend said:hi
There is hope. I think it is ever changing. A good moment,then a bad moment, and so on. My mom is 62. She had three rounds chemo, than surgery, than 3 more rounds chemo. Her last check-up she was in remission. So until the end of March she is gonna live life and enjoy it and she is even going back to work twice a week. She had to go on disability because unlike you, chemo was horrible for her. I am pretty sure her battle will someday resume but she has had a ca125 of 3 since November. Welcome!
So thrilled and excited. My CA125 test after first round of chemo has dropped from 658 to 191 so a fabulously massive drop. So good to have some good news. Had my second round of chemo today and so far all OK. Julie, Gold Coast, Australia0 -
CA125 ResultJulieL said:CA125 result
So thrilled and excited. My CA125 test after first round of chemo has dropped from 658 to 191 so a fabulously massive drop. So good to have some good news. Had my second round of chemo today and so far all OK. Julie, Gold Coast, Australia
Hi Julie: That is great news! I have secondary peritoneum cancer from gallbladder cancer so my treatment is different from yours - more like the treatment for colon cancer (oxaliplatin + irenotecan + 5FU pump). Things are going well - off chemo since Nov 4 after 1 year and 3 months of it - to see where we go next - more chemo? surgery?
I love the gold coast. I am a Canadian but have been to Australia several tlimes - Lamington National Park for 3 wks and then Tasmania for 3 wks etc. I'm a birder and Australia has wonderful birds, especially for a Canadian!
Keep up with the positive spirit.
Cheryl0 -
CA125 resultwestie66 said:CA125 Result
Hi Julie: That is great news! I have secondary peritoneum cancer from gallbladder cancer so my treatment is different from yours - more like the treatment for colon cancer (oxaliplatin + irenotecan + 5FU pump). Things are going well - off chemo since Nov 4 after 1 year and 3 months of it - to see where we go next - more chemo? surgery?
I love the gold coast. I am a Canadian but have been to Australia several tlimes - Lamington National Park for 3 wks and then Tasmania for 3 wks etc. I'm a birder and Australia has wonderful birds, especially for a Canadian!
Keep up with the positive spirit.
Cheryl
Hi Cheryl: Thanks for your post. Interesting to hear of different treatments - amazing how many different combinations but that can only be offering us all the best opportunities! All the best with your journey.
Yes we love the birds here too - grew up in NZ and couldn't believe the magnificent colours in the birds here, Lived in Melbourne for 30 years and had wonderful variety of parrots in the garden daily. Here we are little more urban and not quite so many in the garden but don't have to go to far to see them. We love Tasmania too. Think it is a little treasure. Talking of birds, we had an amazing holiday in Botswana in September (just before my diagnosis) and amazing birds there - along with fabulous animals.
Keep smiling - love your little dog!0 -
different chemosJulieL said:Your Mom
Hi Eileen
Thank you so much for your post. I do wish your Mom well. It seems the pleural effusion is not an uncommon first sign of this disease. The chemo your Mom has been on for 2.5 years - is that Taxol and Carboplatin or does it get changed around? It seems a long time. I do hope she will have a remission very soon.
My thoughts and prayers are with you both.
Julie
My mom has been on many different chemos over this time period. She typically goes through 6-8 rounds of the same chemo and/or chemo combination and then they switch her if her number goes up or she is having symptoms. I wish you well! Thanks for your thoughts and prayers!
Eileen0 -
Hello Julie
Thought I'd message you as I was diagnosed with PPC in November 2009 with plueral effusion. I was unable to breathe because of the fluid on my lungs and ended up having a total of 7 chest drains over a period of a year. Same as you when they tested the fluid they found the cancer cells. I am 51 years old and also fit and well. When I was diagnosed I was a runner.
This is a wonderful site with so many lovely ladies offering support and help. Over the last 2 years I have come to terms and have learnt to live with cancer. I know in 99% of ladies this disease cannot be cured but it can be managed and treated just like any other disease. The beginning bit is the hardest and then getting your head around how your life will change. I used to resent that - I lost my hair, didn't work for 6 months, stopped running (my hobby) and put on weight. I spent a lot of time being angry which is part of the deal of being told you have cancer.
But now, 2 and a bit years down the line I have just finished my 4th chemo and I am FREE OF SYMPTOMS and feel well. My CA125 is still raised (495) but it's OK as I am alive, back at work, my hair has grown and started running again.
Take Care Tina xxxx0 -
Good news!
Hi Julie, I am a daughter of 41 and my mum was diagnosed with ppc stage IV in february last year. I write to you as I am "half" australian (my father) and I know there is another lady on this forum (AussieMaddie) that comes from your country. Mum is doing well. She is in remission after 8 rounds of chemo with carbo/taxol and is now recovering her strenght eating just hormones until next check-up in february. Mum is 62. At the moment she is in Bangkok for vacation and though life can be tough, the support you get from this board and family and friends is a gift in itself.
Love,
Sophie0 -
Hi SophieSOPHIE333 said:Good news!
Hi Julie, I am a daughter of 41 and my mum was diagnosed with ppc stage IV in february last year. I write to you as I am "half" australian (my father) and I know there is another lady on this forum (AussieMaddie) that comes from your country. Mum is doing well. She is in remission after 8 rounds of chemo with carbo/taxol and is now recovering her strenght eating just hormones until next check-up in february. Mum is 62. At the moment she is in Bangkok for vacation and though life can be tough, the support you get from this board and family and friends is a gift in itself.
Love,
Sophie
I wish your Mum well - terrific that she is holidaying in Thailand at the moment. Am sure she will have a fabulous time there. I do wish her well for February check up.
I am continuing to plan to take a trip to Italy and London (for the 2nd week of the Olympics) July/August 2012 which was booked ahead of my diagnosis! Good to have something to look forward to!
Lovely to hear from a half Aussie! This seems to be a pretty rare cancer and with our small population few and far between here. Hi Aussie Maddie!
Yes I agree about the support from this board - a great help!
Love & best wishes,
Julie x0 -
Well done Tina!Tina Brown said:Hello Julie
Thought I'd message you as I was diagnosed with PPC in November 2009 with plueral effusion. I was unable to breathe because of the fluid on my lungs and ended up having a total of 7 chest drains over a period of a year. Same as you when they tested the fluid they found the cancer cells. I am 51 years old and also fit and well. When I was diagnosed I was a runner.
This is a wonderful site with so many lovely ladies offering support and help. Over the last 2 years I have come to terms and have learnt to live with cancer. I know in 99% of ladies this disease cannot be cured but it can be managed and treated just like any other disease. The beginning bit is the hardest and then getting your head around how your life will change. I used to resent that - I lost my hair, didn't work for 6 months, stopped running (my hobby) and put on weight. I spent a lot of time being angry which is part of the deal of being told you have cancer.
But now, 2 and a bit years down the line I have just finished my 4th chemo and I am FREE OF SYMPTOMS and feel well. My CA125 is still raised (495) but it's OK as I am alive, back at work, my hair has grown and started running again.
Take Care Tina xxxx
I just read your post and what an inspiration! I have followed you on this forum and this news is excellent! I am so happy for you that treatment did good and you are free of symptoms. Well done and keep the faith an spirit up. Great to be able to run again and well hair is good to. But the best is as you say - to be alive.
Good luck on the running and I hope to see updates in future.
Love,
Sophie0 -
Hi Julie & SophieJulieL said:Hi Sophie
I wish your Mum well - terrific that she is holidaying in Thailand at the moment. Am sure she will have a fabulous time there. I do wish her well for February check up.
I am continuing to plan to take a trip to Italy and London (for the 2nd week of the Olympics) July/August 2012 which was booked ahead of my diagnosis! Good to have something to look forward to!
Lovely to hear from a half Aussie! This seems to be a pretty rare cancer and with our small population few and far between here. Hi Aussie Maddie!
Yes I agree about the support from this board - a great help!
Love & best wishes,
Julie x
I too am
Hi Julie & Sophie
I too am Australian. I live in Adelaide but originally from Tasmania.
I was diagnosed and had debulking surgery in October 2008 - had carbo/taxol and finished in March 2009. Did Carbo/Gemzar in May last year. Have my next scan in Feb and will see what is happening.
I try to keep myself busy and active and that helps me mentally.
I do not post much on this board but I do read quite a bit.
Julie where on the Gold Coast are you? My daughter lives just outside of Murwillumbah.
Jenny0 -
Hi Jenny!Tasgirl said:Hi Julie & Sophie
I too am
Hi Julie & Sophie
I too am Australian. I live in Adelaide but originally from Tasmania.
I was diagnosed and had debulking surgery in October 2008 - had carbo/taxol and finished in March 2009. Did Carbo/Gemzar in May last year. Have my next scan in Feb and will see what is happening.
I try to keep myself busy and active and that helps me mentally.
I do not post much on this board but I do read quite a bit.
Julie where on the Gold Coast are you? My daughter lives just outside of Murwillumbah.
Jenny
Cool that we are a bunch of aussies on here! My father and sister lives in Canberra and have a holiday home in Broulee down the coast. Mum is from Sweden and I also live there with my husband and kids for the moment. But I am also back in Canberra now and then for "family check up".
I just have to say that for me, you are amazing Jenny! Training for marathon during chemo is outstanding! A real inspiration.
Love,
Sophie0 -
Hi Jenny!Tasgirl said:Hi Julie & Sophie
I too am
Hi Julie & Sophie
I too am Australian. I live in Adelaide but originally from Tasmania.
I was diagnosed and had debulking surgery in October 2008 - had carbo/taxol and finished in March 2009. Did Carbo/Gemzar in May last year. Have my next scan in Feb and will see what is happening.
I try to keep myself busy and active and that helps me mentally.
I do not post much on this board but I do read quite a bit.
Julie where on the Gold Coast are you? My daughter lives just outside of Murwillumbah.
Jenny
Cool that we are a bunch of aussies on here! My father and sister lives in Canberra and have a holiday home in Broulee down the coast. Mum is from Sweden and I also live there with my husband and kids for the moment. But I am also back in Canberra now and then for "family check up".
I just have to say that for me, you are amazing Jenny! Training for marathon during chemo is outstanding! A real inspiration.
Love,
Sophie0 -
Hi JennyTasgirl said:Hi Julie & Sophie
I too am
Hi Julie & Sophie
I too am Australian. I live in Adelaide but originally from Tasmania.
I was diagnosed and had debulking surgery in October 2008 - had carbo/taxol and finished in March 2009. Did Carbo/Gemzar in May last year. Have my next scan in Feb and will see what is happening.
I try to keep myself busy and active and that helps me mentally.
I do not post much on this board but I do read quite a bit.
Julie where on the Gold Coast are you? My daughter lives just outside of Murwillumbah.
Jenny
Thanks for your post. Lovely to hear from another Aussie!
Wow - you are amazing training for a marathon while having treatment. I am at Benowa, pretty much central GC - not that far from Murwillumbah if you are ever up this way! I do wish you well with your Feb scan! An anxious time waiting for that I can imagine. How often are you having scans at the moment? I am keen to get back to working out in the gym but that is on hold at the moment and by the time lung surgery will allow I will be having abdominal surgery so will have to wait again! I really do miss it. However walking lots and enjoying pilates.
All the best, Julie0 -
Hi TinaTina Brown said:Hello Julie
Thought I'd message you as I was diagnosed with PPC in November 2009 with plueral effusion. I was unable to breathe because of the fluid on my lungs and ended up having a total of 7 chest drains over a period of a year. Same as you when they tested the fluid they found the cancer cells. I am 51 years old and also fit and well. When I was diagnosed I was a runner.
This is a wonderful site with so many lovely ladies offering support and help. Over the last 2 years I have come to terms and have learnt to live with cancer. I know in 99% of ladies this disease cannot be cured but it can be managed and treated just like any other disease. The beginning bit is the hardest and then getting your head around how your life will change. I used to resent that - I lost my hair, didn't work for 6 months, stopped running (my hobby) and put on weight. I spent a lot of time being angry which is part of the deal of being told you have cancer.
But now, 2 and a bit years down the line I have just finished my 4th chemo and I am FREE OF SYMPTOMS and feel well. My CA125 is still raised (495) but it's OK as I am alive, back at work, my hair has grown and started running again.
Take Care Tina xxxx
Not sure if I asked you are you still getting pleural effusions? Seven chest drains is a big number! If so you might want to ask about pleurodesis surgery which attaches the lung to the pleura so that fluid cannot build up there again. Has worked for me. So glad you are free of symptoms.
Best wishes, Julie xx0 -
Plueral effusionsJulieL said:Hi Tina
Not sure if I asked you are you still getting pleural effusions? Seven chest drains is a big number! If so you might want to ask about pleurodesis surgery which attaches the lung to the pleura so that fluid cannot build up there again. Has worked for me. So glad you are free of symptoms.
Best wishes, Julie xx
Hi Julie
I did have a pluerodesis on my right lung during the second chest drain and it worked relatively well. Only needed a small drain a month months after. That was Jan 2010. However my left lung was problematic. The only time the chest drain actually emptied the lung and they forgot to do the pleurodesis before removing the drain. So I needed to have further drains on my left lung. The last drain was Nov 2010 as it had built up so bad I couldn't even walk to the bathroon in the hospital and needed wheelcharing. I had a chest drain but it never fully drained the fluid and I was left with a small amount still in there. I started my second round on Carbo/taxol staight away. This got rid of the reamining fluid and the best news ever is I HAVE NOT HAD ANYMORE FLUID AROUND MY LUNGS SINCE. I am particularly pleased as it shows that the chemo has gotton rid of the cancer cells from around my lungs
Now I only hope it will do the same for my adbominal and pelvic areas
Take care Tina xxx0 -
Yay Australia!JulieL said:Hi Jenny
Thanks for your post. Lovely to hear from another Aussie!
Wow - you are amazing training for a marathon while having treatment. I am at Benowa, pretty much central GC - not that far from Murwillumbah if you are ever up this way! I do wish you well with your Feb scan! An anxious time waiting for that I can imagine. How often are you having scans at the moment? I am keen to get back to working out in the gym but that is on hold at the moment and by the time lung surgery will allow I will be having abdominal surgery so will have to wait again! I really do miss it. However walking lots and enjoying pilates.
All the best, Julie
Hi: I've been to Australia several times ( birding ) - I was in Tasmania 4 years ago and loved it. Spent time at various B&Bs and park cottages throughout the country - even saw a Tasmanian Devil! I love Australia and hope to get there soon again. I'm from Canada and we have a lot of Australians here. As well, many of our university students to to Australia for teacher training. My grad student completely his PhD in Townsville and then stayed on (his wife died of cancer and he took the kids to a job in England).
Wow! doing a marathon when in chemo. How wonderful!
Cheryl0
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