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JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

I was diagnosed last month with PPC following a collapsed lung and testing of the fluid which was drained off. I am very grateful to wonderful medical team who acted very quickly with surgery to repair my lung and my first chemo (Taxol and Carboplatin) within a week. I will probably have surgery after 3 rounds of chemo. I am a 63 y.o. Australian woman and have been struggling to find anything positive until I found this site. Thank you all so much - it is so helpful to read your posts and to hear some positives. I, too, am wondering about lengths of remission that have been attained following first chemo treatments. I also have a malignancy in one breast and am waiting on MRI results for tests done last week. Will probably need surgery there also. I am generally fit and healthy and thankfully the first round of chemo has been fine. I have my second this week. I have a wonderful supportive husband and 26 y.o. daughter so lots to live for and feeling hopeful and positive most of the time but of course frightened some of the time too. My hair has gone with this first round but I can cope with that. Julie - Gold Coast, Australia

eward
Posts: 210
Joined: Feb 2010

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 Be careful what you read - most of the info out there is outdated.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

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

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

eward
Posts: 210
Joined: Feb 2010

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!
Eileen

Best Friend
Posts: 222
Joined: May 2011

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!

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

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.

Best Friend
Posts: 222
Joined: May 2011

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!

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

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

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

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

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

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!

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

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

SOPHIE333
Posts: 92
Joined: May 2011

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,
Sophie

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

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

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

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 xxx

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

Hi Tina

So good to hear you are doing so well. I really follow your posts and was glad to hear that you had been absent from the site as you had been on a cruise(?) I hope I got that right; I missed you anyway.
Just reading your comments here, I have put on a lot of weight and I can't explain it. I am eating the same as I did before diagnosis, well the same as I have most of my life really. I have read elsewhere that the effects of chemo can affect weight gain; wondered if you felt this.
Like you, I get a little angry about that; isn't the cancer enough!! Ok, so my friends and family say oh but you're better and yes, I would rather be healthy and "chubby" but I'd prefer just to return to normal thanks..
Funny that, often people say to me, well lucky to be here, eh?...and I wanna say no, just as entitled as you...

Ok, off my soap box now! Good to read your comments,
Marisa

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

Its nice to hear from you Marisa I so understand your frustations with the weight gain. However you are right it is the effects of chemo or more exactly the steroids that are given to us during chemo. Dexamethadone or decs (as the chemo nurses call it). These steriods prevent our bodies from reacting really badly to the chemo and making us very ill. The increase your appetite and then, if that isn't enought, cause your body to change the way it stores fat. You may have noticed a mound of fat at the top of your spine - on the back of your neck. They call that "Dowagers hump" and also your face may get round and puffy and they call that "moon face". I only found out about all of this by chance when chatting to the nurses and other cancer patients.

I DO WISH THEY WOULD TELL US ALL ABOUT THINGS LIKE THIS. I know it is small in comparisson to the cancer but it just helps to reassure us when we are going through one of the hardest things of our life.

Going back to something you said ....."returning to normal" I finally have my hair back. I came off chemo at the end of March 2011. Nearly 11 months on and my hair looks just like it did before I lost it and it has done me the world of good.

Take care Tina xxxxx

SOPHIE333
Posts: 92
Joined: May 2011

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

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

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

Tasgirl's picture
Tasgirl
Posts: 85
Joined: Jun 2010

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

SOPHIE333
Posts: 92
Joined: May 2011

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,
Sophie

SOPHIE333
Posts: 92
Joined: May 2011

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,
Sophie

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

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

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

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!
Cheryl

Tasgirl's picture
Tasgirl
Posts: 85
Joined: Jun 2010

Hi Cheryl
As my username implies - I was born and bred in Tasmania. So glad you liked my state. My daughter was born in Townsville as I lived there for about 3 years.
You will have to let me know when next you are here.
Jenny

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Will do! I need to see more wombats and platypus and echidna! And always more birds!
Cheryl

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