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Old 08-07-2007, 04:03 AM   #1
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father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi, my father has just been diagnosed with malignant mesothelioma 63 years young. Dr says he has 12-16 months. Our family is just devastated. we are waiting for him to be admitted to hospital to have the fluid drained from his lungs and the talc to help him. He has had heart problems and is a diabetic so the dr wants to avoid surgery from fear that he may not make it off the operating table. Dr has talked about chemotherapy options but said at the appointment last week that to drain the fluid first and then we can talk about chemotherapy options. There seems to be stuff to read on the disease and the causes but although I'm scared of what will happen as this disease progresses I need to know what to expect and how we may be able to help him. thankyou for any advice. devastated daughter Linda.

 
Old 08-07-2007, 09:29 AM   #2
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi Linda,I could write a book about my experience of meso from which my dad suffered.Please feel free to ask me any questions,but i need to know whether you want be to be brutally honest.My dad was diagnosed may07 and died july07 before that he was in good health and we had no idea he was ill.I spent those weeks looking after him and many days at the hospital.He had drainage and talc pleuredesis.Please let me know if you would like to chat!its a devastating illness that holds no prisoners,my thoughts are with you and your family.cheers jox

 
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Old 08-07-2007, 10:28 PM   #3
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Quote:
Originally Posted by linda64 View Post
Hi, my father has just been diagnosed with malignant mesothelioma 63 years young. Dr says he has 12-16 months. Our family is just devastated. we are waiting for him to be admitted to hospital to have the fluid drained from his lungs and the talc to help him. He has had heart problems and is a diabetic so the dr wants to avoid surgery from fear that he may not make it off the operating table. Dr has talked about chemotherapy options but said at the appointment last week that to drain the fluid first and then we can talk about chemotherapy options. There seems to be stuff to read on the disease and the causes but although I'm scared of what will happen as this disease progresses I need to know what to expect and how we may be able to help him. thankyou for any advice. devastated daughter Linda.
Hi Linda, contact the asbestos board NSW they will give you all the information you need, there's a lot of help out there. Nelson Bay

 
Old 08-08-2007, 04:31 AM   #4
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

HI Jox, am sorry to hear of the passing of your father. I would like to chat with you. regards Linda

 
Old 08-08-2007, 07:54 AM   #5
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi Linda,My dad was 63 too.Uptil May07 he was fine although he had backache for a year before that which the docs said was sciatica.We will never know if it was or if it was the meso.My dad was cutting the grass one afternoon when he had slight shortness of breath.He went to the docs next day who sent him for a chest x-ray the following day.His x-rays were the talk of the hospital.He had a massive pleural effusion on his right lung.When you looked at the x-ray.the lung was just one big white cloud.That night i came home and went on the web,MESOTHELIOMA kept on flashing up when i typed in my dads symptoms.The next day,my dad had the lung drained and 5 litres of fluid taken off.He said it was so painful,but felt better afterwards.The next day he had a camera down his throat(nothing detected) and a further x-ray.I was wanting answers by now but the consultant was very evasive,which gave us no confidence.We asked to have a chat with the doc.He said that they had found a small solid mass on the bottom of dads lung which could be the result of an infection,pleurisy or cancer.Over the next 3 weeks,he was subjected to an array of tests as apparently meso is hard to dx.(my dad was never allowed home during this time.)He has a pet scan,fluid cytology and eventually a lung biopsy.He had 2 drains put in after the biopsy and also had the talc treatment.After another 7 days of agony,we were told he had meso caused by asbestos exposure and that there was no treatment only control of the disease.After the talc,my dad was in agony.The drains were touching his nerves and one had punctured his diaghram but he was sent home.During his stay he was also diagnosed with blood clots on his lung and diabetes(both common with cancer.)We were and still are,absolutely devastated,all this from from that morning cutting the grass?How did we get here?During the next couple of weeks,one of the drains was taken out but the other one remained as the fluid was building up again.In my dads case,the talc was not helpful at all but others have had benefit from it.One Sunday,my dad was screaming with pain because the drain tube was causing a lot of agony for him.He begged to go to hosp straight away,he couldnt walk to the car,and i had to drive very carefully over the bumps etc has he howled with pain.This is when the drain was found to be puncturing has diaghram.The drain was taken out,the doc said "it wasnt helping anyway!"During this time,looking back,i feel my dad suffered at a time when he should have been trying to get fit for chemo etc.During those 3 or 4 week my dad lost 3 stone in weight,was so weak and lost his appetite.He was being so brave and we were still waiting to see the oncologist(4 week later! disgusting).The appointment came through and all the family went with him..........will carry on my story later,got to nip out!you okay with reading this?

 
Old 08-10-2007, 04:56 AM   #6
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi Jox. thankyou for letting me hear your personal experience. I really feel for you and your family, how hard it would have been to see your dad in so much pain. I cant believe it took so long to see the oncologist.
My father was admitted into hospital this Wednesday gone. First stop-off was at the xray department in Newcastle for a ct scan and Thursday they commenced the pleural effusion. He is very sore today where the canula is and there is a lot of fluid draining. no wonder he was finding it difficult to breathe. I'm hoping tomorrow will find him more comfortable. would love to hear from you again. take care Linda.

 
Old 08-13-2007, 06:31 AM   #7
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi gutted 68,
Being reading through a few of your comments. Your story sounds very much like mine. My dad was diagnosed about 6 weeks ago with Mesothelioma, previous to this he has been very healthy and fit and we were gobsmacked...I kept saying there is no way my dad has got cancer because he is so healthy!! Anyway he went into hospital and had the talc pleurodesis but then went suddenly downhill - before going into hospital he was OK but 2 weeks later he has lost so much weight, must be down to about 6 stone. He is taking morphine but cannot eat and drink anything - we think this is down to the morphine but arn't sure?? We have an appointment to see the Oncologist this week but to be honest I don't think he is well enough to have radiotherapy. The other option is to make a request for funding for Alimta but this could take 3 months, some days he doesn't look as if he is going to survive 3 months!! I read your comments upto you going to the Oncologist - what did they recommend?? To be honest I'm tempted to suggest that we just leave him alone and look after him as best we can. If we take him to see the Oncologist and they tell him that there is nothing they can do he will just be upset all again and this is so heartbreaking to see. I know he is dying and all I want for him is quality of life rather than quantity - should we see the Oncologist or not??? Originally we thought he had about a year but if he is going to be this poorly I prefer him to go quickly (I cant beleive I am saying this!). I would appreciate your experience of dealing with this (I am very realistic).
Thanks in advance
Adele

 
Old 08-14-2007, 12:05 AM   #8
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linda64 HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi Jox
Further update to my last message. My father was put into hospital and the fluid was drained, wasnt too bad but a little uncomfortable around the shoulder where the tube was inserted especially when he tried to lift his arm. The procedure where the talc went in was quite painful and it remained this way up until the tube was taken out on Sunday. He came home from hospital yesterday but he is still very tired and weak. Doesn't have much of an appetite, which is a worry as he is a diabetic. I'm hoping things will improve over the next few weeks. he has appointment next week to have another xray and to see how successful the procedure was for him and where to go from here. take care Linda.

 
Old 08-20-2007, 03:31 AM   #9
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi Adele and Linda,Sorry ive not been posting but i have found the last couple of weeks so hard to cope with and have struggled to carry on without my dad.
Linda-My dad also lost his appetite,please ask his gp for a drink called Fortisip.Its quite expensive but one little bottle equals a meal.My dad would only be able to take these in his last few days because the appetite goes completely.I used to tempt him with everything!but after a mouthful he would shake his head.What i did learn was that the body cant give enough of its energy to digest food because its concentrating on fighting the meso,so everything else just fades into the background.Im glad your dads pleuredesis went well and i pray for you all,please update me as i havent been on for ages!Hope your okay as can be!jox

Adele-The meso causes the weight loss,as explained to Linda above.Try the drinks above!Im going to be honest with you,the onc will not let your dad have chemo unless hes fit,my dad wasnt up to it and they more or less sent him home to die.Its such a ravaging disease,and it brings a host of other ailments with it.The coroners report said that my dad died of a massive blood clot caused by the meso.My own experience is to look after him,tell him what you want him to know,he doesnt need to hear any bad news.The thought of my dad knowing he was going to die,kills me inside.How much morphine is he on now?Is he in pain still?Is he at home?Please update me with your story.Where in derbyshire are you from?Jox

 
Old 08-22-2007, 05:39 AM   #10
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi Jox, I am really pleased to hear from you again and appreciate you sharing your personal experience with me. I can only imagine how hard it is for you so soon after your dads passing and my thoughts are with you and your family.
further update to my dad: He came home from hospital and was tired and weak. He spent a few days in bed sleeping trying to recover from the procedure. He is still getting quite a bit of pain when he coughs or yawns. Do you know if this is normal? He is starting to pick up a bit now, but tires very easily.
He has a chest xray tomorrow and then has 2 appts next week. One with the specialist to see how successful the procedure was. The other is with the Radiation Oncologist.
look forward to hearing from you again. take care. LInda .

 
Old 08-26-2007, 04:31 PM   #11
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hello Jox, Linda and Adele:

I've been reading your postings with sadness and dispare as my father too has been recently diagnosed with this devistating disease. He too had been so active and so healthy. When I heard what he had I just couldnt believe that someone that had taken such good care of himself could get cancer.

My dad was diagnosed in June of this year and has spent the last 2 months visiting "specialists" and taking a multitude of tests. He starts chemotherapy on Wednesday of this week. I really hope that will help him cause he's gotten extremely negative lately and very depressed. I just can't believe that there isn't any treatment for this type of cancer beyond palliative ones. I just feel so helpless as I watch him get sicker and sicker. I just wish there is something that I can do.

My understanding about Mesothelioma is that since a very few number of people get it, there isn't a lot of information about it. I also know that survival time is subject to many different factors. Does anyone know about the effects of the chemotherapy for Meliothelioma on the body? I want it to help him and I pray that it doesnt make him sicker. Does anyone know how much more time the chemotherapy will actually give him? The oncologist is saying an extra 8-12 months, but I'm finding it hard to believe as I see him deteriorating every day.

I also wonder how he will be at the end. I dont want to see him in a lot of pain and I pray that he doesn't suffer and suffer. How does one actually die from this disease? My fear is that he will sufficate or choke to death.

Thanks for your posts and I appreciate any information that you can give.

Robert

 
Old 08-30-2007, 05:13 AM   #12
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi to anyone and everyone that reads this. I am certainly grateful for being able to share my experience along with reading about others experiences.
further update to my dad:
we visited the Radiation oncologist on Tuesday and my father will start radiation therapy next Thursday. He will have 5 consecutive days radiation therapy.
We visited his specialist today and he was happy with the procedure in hospital re: talc We discussed chemotherapy, which would not be commenced until after the radiation is finished. My father is not too keen yet about chemo. He believes that if it is only going to give him an extra few months and make him sick he would rather have quality. He has an appointment to go back to specialist in October and they will discuss chemo further. Robert if you read this I would appreciate it if you could let me know how your dad copes with the chemo and would you be able to let me know what chemo drugs he receives, how he feels, and how it helped him.
There has been so much in the news reports here in Australia about Mesothelioma treatments etc it is overwhelming. I had never heard of this prior to my father being diagnosed but it just seems everywhere you turn at the moment the're reporting on it.
JOX: thanks for the information about the Fortisip.
take care. Linda.

 
Old 08-30-2007, 11:13 AM   #13
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi Linda and everyone else!,Im glad to hear that your dads doing okay.My dad also had radiation,but only on his drainage sites as the cells can seed as they travel around the drain.It is pretty painless and just made the area a bit sore.My dad wasnt well enough for chemo and the day they told him was the day he deterioated,in fact he died 5 weeks later.The post mortem revealed it was very advanced and had spread to his heart wall,diagrapm,lung and chest wall,but was confined in that area. Robert-During his last 2 weeks my dad was also very depressed and wouldnt talk,i used to climb in bed with him and hold his hand.just be with him and encourage him to take plenty of fluids.My dad actually died of a blood clot in the lung as mesothelioma causes pulmonary embolisms,He was on warfarin but it eventually blocked his breathing.The last 2 weeks of his life were devastating and i dont know how we got through them.If you read my previous posts with onetruefriend you will be able to understand a bit more.Please ask me anything and i will be as helpful as i can.i so so so so wish you all wernt going through this,its so heartwrenching and im so raw.The suffering is terrible but be strong and keep your chins up! jo x x

 
Old 08-30-2007, 07:40 PM   #14
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi Jox, Linda and everyone else..
Thanks for your replies. Linda, I will let you know how the chemo goes. He had to receive 2 types of chemo drugs, one was the "average" chemo drug and the other was a special kind of chemo that is given to Mesothelioma patients. I believe its called Alimta. Jox, thanks for your kind words and your honesty. I'm greatful to have someone to talk to thats been through it all. Take care and I will update as things progress. All the best to everyone who has had their lives touched by this horrible disease.

 
Old 10-12-2007, 05:09 PM   #15
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

hi everyone i have not posted in a while as so much has happened ao quick i have found the whole thing very difficult. how are you doing gutted? i can't believe it is nearly four months since my mother passed away it has flown since but been very differcult everything everywhere is a reminder of her and i feels still so angry she was taken the way she was. i am down her grave all the time and miss her so much my sister has been having lovely dreams about her as if she were still here watching but i am very disappointed i am not dreaming this way . i have taken over total duties with my father and do every thing for him if i did not cook he would not eat. if anyone wishes to ask me anything i will gladly reply but i will be honest and you may not want to hear what i say. thoughts are with you all . take care X

 
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