https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13446#M1523 Hi Maria Ron Smith who organises the Facebook support groups is very active in all aspects of Meso. I will go Google and see if I can get him linked up with you. He is very reassuring about what's in store..and dedicates his life to warning of the dangers of Asbestos etc. He lives on the Mornington Peninsular I think but should be able to help. Does your Mum know where she would have come in contact? If it was through work the Dust Disease Board might be able to help with financial support.. It's been a long haul but I'll try and find the groups for you..off to FB to message Ron Smith.Don't read absolutely everything about Meso because every one is different ..It's very frightening at first but as time goes by you'll gather more strength and cope well... more later...Glad your Mum is feeling well.. Sat, 09 Aug 2014 06:56:54 GMT Elsicarter 2014-08-09T06:56:54Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13441#M1518 Does anybody know about Mesothelioma and how quick God can take them. I would obviously rather that she does not suffer and she said she feels great. She had her lungs fixed so she's breathing better and its so hard to believe she's going to die. She says she's sleeping better than ever and beleives God may take her when she's sleeping. Can we be this lucky? Or does all Mesothelioma patients die slowly? Thu, 07 Aug 2014 23:59:33 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13441#M1518 Ms_Anticipatory 2014-08-07T23:59:33Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13442#M1519 Mum also wants to know what people think about what she's been told. She was told not to worry about having chemo because she feels good. She has been told to get chemo when she starts to feel awful. But if she gets chemo now, wont that prolong her life? Fri, 08 Aug 2014 00:07:45 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13442#M1519 Ms_Anticipatory 2014-08-08T00:07:45Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13443#M1520 Dear Maria I have had to set up a new account to be able to reply to you. (I lost the other details) I have a lot of positive information for you. Please email me directly at myracarter@gmail.com or find me on Facebook as Elise. My most encouraging information comes from support groups on Facebook. If you find me there as Elise Carter (profile pic of me and John on seawall with a dog. I have wet hair and a red cardigan.) Rod Smith runs an information page for carers..etc..and several other pages through Facebook. You will find many other people there who are fun, informative and very supportive..they too are either Meso sufferers or carers. It feels so lonely at first. If your mum feels well, just get her to enjoy life to the full and ignore all the stats. There are several people living a longer life than the "average" Lou Williams has had Meso for 11 years. It is a terrifying diagnosis but there is no need to rush into chemo.. as long as she is comfortable now just eat well, live well and perhaps see a Naturopath if you can afford it. John is busy building carports, chopping wood, going sailing nearly 10 months since his diagnosis...He gets a bit tired but then he will be 75 in January. Some researches suggest that the chemo makes very little difference to the outcome and some have very bad side effects. I just always give him the info and he decides to try it if he wants.. no pressure. Ok Hope you can find the support on FB or just email me... I looked up your name but there were many Maria Portelli. all best. cyber hug. Elise Fri, 08 Aug 2014 03:21:53 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13443#M1520 Elsicarter 2014-08-08T03:21:53Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13444#M1521 Thank you for your reply. Mum found comfort knowing that John is still well. I'm having difficulty finding Meso support groups in Melbourne. The group in Gippsland (Vicki from GARDS) have been very helpful but I wish there was a group in Melbourne I could go to. Has anyone heard of a Mesolthelioma support group in Melbourne??? Sat, 09 Aug 2014 01:00:12 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13444#M1521 Ms_Anticipatory 2014-08-09T01:00:12Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13445#M1522 Hi Maria Ron Smith who organises the Facebook support groups is very active in all aspects of Meso. I will go Google and see if I can get him linked up with you. He is very reassuring about what's in store..and dedicates his life to warning of the dangers of Asbestos etc. He lives on the Mornington Peninsular I think but should be able to help. Does your Mum know where she would have come in contact? If it was through work the Dust Disease Board might be able to help with financial support.. It's been a long haul but I'll try and find the groups for you..off to FB to message Ron Smith.Don't read absolutely everything about Meso because every one is different ..It's very frightening at first but as time goes by you'll gather more strength and cope well... more later...Glad your Mum is feeling well.. Sat, 09 Aug 2014 06:56:42 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13445#M1522 Elsicarter 2014-08-09T06:56:42Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13446#M1523 Hi Maria Ron Smith who organises the Facebook support groups is very active in all aspects of Meso. I will go Google and see if I can get him linked up with you. He is very reassuring about what's in store..and dedicates his life to warning of the dangers of Asbestos etc. He lives on the Mornington Peninsular I think but should be able to help. Does your Mum know where she would have come in contact? If it was through work the Dust Disease Board might be able to help with financial support.. It's been a long haul but I'll try and find the groups for you..off to FB to message Ron Smith.Don't read absolutely everything about Meso because every one is different ..It's very frightening at first but as time goes by you'll gather more strength and cope well... more later...Glad your Mum is feeling well.. Sat, 09 Aug 2014 06:56:54 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13446#M1523 Elsicarter 2014-08-09T06:56:54Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13447#M1524 Hello again Maria I contacted Rod Smith and he would like you to call him on 1800031731. he is sure he can link you up with people in your situation near Melbourne or email angels@berniebanton.com.au. I hope you find support for you and your mum. I have found them to be a great comfort just by being there on line for me. I live up towards Newcastle on Lake Macquarie. Let me know how you get on and any questions email me myracarter@gmail.com..or sykingharald@hotmail.com. best wishes E Sat, 09 Aug 2014 08:41:27 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13447#M1524 Elsicarter 2014-08-09T08:41:27Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13448#M1525 Hi Maria, My mum was diagnosed Mesothelioma at 63 years old after going to her GP thinking she had the flu for a few weeks. The GP sent her straight to hospital as her lung was filled with fluid. After draining the fluid a couple of times doctors finally gave us the diagnosis. They tried to do a pleurodesis to seal the lung lining to her chest wall so they could remove her drainage tube. The procedure didnt't work so she was sent home with a portable drainage box and told she had 4-6 months. It was 5 months later she passed. Most days she was fine and had no pain just annoyed having to carry the drainage around. When the drain stopped working she was placed into pallative care in hospital in Melbourne & placed on morphine. Just be there for your Mum, hopefully she will feel great as much as she can. All cases are different and as others have commented you may still have alot of time left. Fri, 29 Aug 2014 10:57:45 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13448#M1525 dawnvasjuta 2014-08-29T10:57:45Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13449#M1526 OMG I feel horrible for you. I'm so sorry that you and your Mum experienced that. I wish there were words I could say to help. Fri, 29 Aug 2014 21:32:53 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13449#M1526 Ms_Anticipatory 2014-08-29T21:32:53Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13450#M1527 Thanks so much for your support E. I'm not a facebook person but I will call Rod to speak with people in similar situations. Its getting to a stage where we think perhaps the doctors are wrong. My Mum still feels fine (although I see a little change in her which could be because the doctors said she has 5 years at best to live). I'm scared she's gonna get bad (real bad) fast and that's why I'd love to speak to other Meso carers to see if their loved ones are / or were so good too. The doctors keep saying it's definitly Meso. At night Mum says she feels pain and crunching in her chest but during the day shes good. I guess I can thank god for the times she good but I fear that around teh corner it wont be so easy. We are having another scan in 2 weeks and if we're lucky teh docs will say opps, there's no meso there, or it's possibly shrank??? Who knows. I'm just thinking I'm so lucky she's good today. Fri, 29 Aug 2014 21:40:28 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13450#M1527 Ms_Anticipatory 2014-08-29T21:40:28Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13451#M1528 Hi guys, I have changed logins due to work reasons and thought I should be visiting this website more than I have. All was fine...... until the last scan. It's grown heaps and now her life expectancy has gone from 5 years at best to around 12 months. She's 66 and looks healthy (on the surface). She's had her 1st round of chemo. I'm so devastated. Don't know what to do or how to feel. Sun, 12 Oct 2014 03:16:51 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13451#M1528 m.portelli 2014-10-12T03:16:51Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13452#M1529 Hi, I'm so sorry to hear about your Mum. My Dad also has meso. He was diagnosed September 2012 aged 76 and was told he had about nine months. He started chemo in the February and since then has had 22 cycles of chemotherapy and ten days of radiation therapy which shrunk the tumour on his back and decreased his pain. He still gets pain but the medication he's on helps with that. The first few cycles of chemo that he had held it back for a while and then it started growing again. The oncologist changed his chemo and thankfully it's been stable ever since. He's lost a lot of weight now, gets very tired and can't walk very far without getting puffed out. Do you know what chemo you're Mum is on? My Dad is on vinorelbine. Wed, 26 Nov 2014 08:43:17 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13452#M1529 shaz-1 2014-11-26T08:43:17Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13453#M1530 Hi Shaz, chemo has been hell. My Mum (and I) are both wondering if getting an extra couple of months is even worth it. But from your post it sounds like she may get more than 2 months and that positive. Mum's shingles returned at chemo 2 so no. 3 was delayed and after 3 the shingles has returned again. I hate that she's in pain often resorting to Endone thru the night. She's very short of breath too. We go to get a scan tomorrow to see if the chemo is making a difference. Mum's chemo is Cisplatin and Alimta. I would love her to see her 67th birthday in Feb but she's on a downward spiral with her attitude and outlook. It's very hard not too get caught up into that negative area. Wed, 26 Nov 2014 08:55:39 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13453#M1530 m.portelli 2014-11-26T08:55:39Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13454#M1531 Yes it's certainly horrible seeing them in pain. Dad is on Targin and sometimes takes morphine in the night if the pain is too bad. He's just had pneumonia as well and can't seem to get rid of the cough which is bothering him a bit. We went for chemo on Tuesday but his blood count was too low so delayed it til next week, that seems to be happening more lately. Although this time he reckons that's a good thing as it means he doesn't have to have chemo Xmas week and he might feel like having a beer with us haha. The oncologist asked him the other day was he still happy to stay on the chemo if he was to compare the good days he has with the bad days of being on chemo and he said all the time it's keeping it stable he's not giving in. He's had a pretty positive attitude all the way thru so I guess we've been lucky there. I find it hard sometimes as I'm trying to be strong for my mum as well which isn't always easy..they're childhood sweethearts since the age of 14 and I worry how mum will cope when the time comes. Good luck with the scan tomorrow, I hope you get some good news. I'll check in again if you feel like 'talking' again x Wed, 26 Nov 2014 11:55:53 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13454#M1531 shaz-1 2014-11-26T11:55:53Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13455#M1532 Yes it's certainly horrible seeing them in pain. Dad is on Targin and sometimes takes morphine in the night if the pain is too bad. He's just had pneumonia as well and can't seem to get rid of the cough which is bothering him a bit. We went for chemo on Tuesday but his blood count was too low so delayed it til next week, that seems to be happening more lately. Although this time he reckons that's a good thing as it means he doesn't have to have chemo Xmas week and he might feel like having a beer with us haha. The oncologist asked him the other day was he still happy to stay on the chemo if he was to compare the good days he has with the bad days of being on chemo and he said all the time it's keeping it stable he's not giving in. He's had a pretty positive attitude all the way thru so I guess we've been lucky there. I find it hard sometimes as I'm trying to be strong for my mum as well which isn't always easy..they're childhood sweethearts since the age of 14 and I worry how mum will cope when the time comes. Good luck with the scan tomorrow, I hope you get some good news. I'll check in again if you feel like 'talking' again x Wed, 26 Nov 2014 11:56:18 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13455#M1532 shaz-1 2014-11-26T11:56:18Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13456#M1533 Sorry I don't know why that posted twice and I don't know how to delete it Wed, 26 Nov 2014 11:59:05 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13456#M1533 shaz-1 2014-11-26T11:59:05Z https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13457#M1534 Hi Shaz, how have you been? How is your Dad travelling? Mums on a new trial at Epworth and it's stopped the growth of the tumor. But she's learned to live with the pain. It's hard to watch and be the only person she can talk to. Fri, 19 Aug 2016 01:16:34 GMT https://onlinecommunity.cancercouncil.com.au/t5/Coping-with-a-loved-one-s-cancer/Mum-has-stage-3-Mesothelioma-but-feels-great/m-p/13457#M1534 Ms_Anticipatory 2016-08-19T01:16:34Z