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Old 02-22-2008, 08:07 PM   #31
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sptexas HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Well, the doc told me today that the doxorubicine and cytoxan didn't work. She said that since Alimta and carboplatin didn't work either, that the chances of any other drugs is less than 1%. So no more chemo. Seems I'm out of options. Doc says I have 4-8 months to live.
My pleural effusion is much larger, and affecting my breathing. Next week I will have a 'Denver' tube inserted into my right chest and will drain the fluid daily (1 litre a day) until it's gone. They say this should take care of my breathing difficulties. I'm sure ready for that.
When talking with my doctor about alternative therapies, she said that there are many out there, but they have very low success rates for meso. She said my decision will come down to whether I want to spend my remaining time in clinical trials (with their side effects) or spending my time travelling back and forth between Texas and places like Germany for immunotherapy. OR, I can spend my time with family and friends, enjoying my last months. I'm tending towards the last option.
It's not a good prognosis, but what a gift it is that I have time to say goodbye to family and friends. Many people die of heart attacks or auto accidents, and never get to say goodbye to loved ones. Once more, God has taken care of me.

 
Old 02-23-2008, 04:17 AM   #32
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linda64 HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi to all,
sptexas I am so sorry to hear that your new chemo treatment hasn't worked. I hope that the procedure you have planned will make things a little easier for you. I couldn't begin to imagine how you must feel being given such devastating news but you are right you will have a chance to say good bye to your loved ones. My heart goes out to you and your family.

My father had his specialist appt last Thursday. The xray showed there was no improvement but there was no deterioration either. He had been pretty sick with this last lot of chemo and was actually sick on the day of this appointment that the dr advised to hold off the next round of chemo until his health stabilized. He was given 2 lots of tablets (dexmethsone and ?) to try and stop the vomiting. These tablets worked quick, when I went over to see him Friday he was a different person, good colour was back in his face and he had been able to keep some breakfast down, which was such a relief. He will go back for a review in 2 weeks time.

Gary, this Zeolite that you talk about, what is it exactly? where can you get it? do you need a drs script to purchase? I'm in Australia.
take care for now. Linda xx

 
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Old 03-01-2008, 10:29 AM   #33
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GaryR HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi Linda

The cost works out at circa £2.70 a day. I am increasingly convinced it works; the evidence is mounting in its favour. In fact a medical doctor from Ohio phoned me today following a posting I'd made on the internet. He is researching zeolite and is very positive about it from what he's seen so far.

You will need to order it on the internet.

All the best


GaryR

Last edited by moderator2; 03-02-2008 at 11:00 AM. Reason: posted commercial website

 
Old 03-22-2008, 11:26 AM   #34
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robertsinyyz HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hello all..

Here is the post that I knew I would have to write one day. On Sunday March 16th my dad passed away after a 10 month battle with Mesothelioma. He was admitted to hospital on February 18th complaining of general
weakness and trouble breathing. We soon realized that he was suffering from a Pulmonary Embolism which is apparently common in Meso patients. On Sunday morning his legs and feet swelled up and he had a stroke. He came in and out of awareness for the day and at 9:30pm, with me and my 2 brothers and sister at his side he peacefully passed on.
I welcome anyone who has any questions about this painful disease to ask me, I will be brutally honest. My thoughts are with all of you whos lives have been affected by this tragic disease.

 
Old 03-22-2008, 12:07 PM   #35
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robertsinyyz HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hello all..

Here is the post that I knew I would have to write one day. On Sunday March 16th my dad passed away after a 10 month battle with Mesothelioma. He was admitted to hospital on February 18th complaining of general
weakness and trouble breathing. We soon realized that he was suffering from a Pulmonary Embolism which is apparently common in Meso patients. On Sunday morning his legs and feet swelled up and he had a stroke. He came in and out of awareness for the day and at 9:30pm, with me and my 2 brothers and sister at his side he peacefully passed on.
I welcome anyone who has any questions about this painful disease to ask me, I will be brutally honest. My thoughts are with all of you whos lives have been affected by this tragic disease.

 
Old 03-24-2008, 07:18 PM   #36
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gunda HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

I am new to this board, my father 81 was diagnosed with pleural mesothelioma last November after having tests since April, (took a long time to diagnose). He saw the oncologist and started chemo alimta and carboplatin in December. It was inoperable nor could radiation help as the mass was too large on his lung. He had a scan after his fourth Chemo and the Tumour had not spread so I guess that was a good sign. He certainly gets knocked around by the Chemo, he is usually out of action for about 10 days after every Chemo cycle. It was absolutely devastating for us when we got the news as it is for everyone no doubt, and it is really hard seeing Dad deteriorate as he has always been so extremely active until last year. I spend a lot of time with my parents helping and it is a real emotional rollercoaster. I have been getting really good advice from the mesothelioma applied research foundation in North America, they have a mesothelioma nurse who has given me some really good advice with symptoms, treatment etc. It seems there are a lot of options for trials and people posting on the notice board who are either undergoing trials or their spouse etc do give some hope. There are people I have been speaking with that have had great sucess with Chemo, so it is well worth looking at some of the posts, and if you are in North America you could contact the nurse Mary who can put you in touch with treatment or others in your area for support. It is a shame we don't have anything like that here in Australia, I know what you are going through and we can only hope there is a longer time we can have with our fathers.

 
Old 04-01-2008, 03:37 AM   #37
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linda64 HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Robert,
I am so saddened to hear of the passing of your dad. My father-in-law died of bowel cancer in October 2007 so I have some understanding of what you must be feeling at this traumatic time. With the love and support of your family around they will help you get thru this. You may think that you will never get over this but every day gets that little bit easier.
Take some peace in knowing that your dad will never have to endure any more pain.
Please keep us posted on how you are doing. My prayers will be with you and your family at this sad time.
take care Linda xxxxxx oooooo xxxxxxx:


***I will post at a later date re: update of my dad***

 
Old 04-10-2008, 06:41 AM   #38
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linda64 HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi to everyone that is reading this post,
update on how things are going with my father:
We visited the specialist today. Dad has had 3 cycles of chemo now, which has really knocked him about. The last 2 weeks have been extremely rough, nausea, playing havoc with his sugar diabetes and he has had very low blood pressure.
He had an x-ray and the doctor said there has been no deterioration in his condition and it shows if anything a slight improvement, which I was happy to hear.
Dad has decided to put chemo on hold for a month and see how he is feeling and then will decide when he sees the dr whether he will continue with the last 3 cycles.
As much as I would love to see him continue with the treatment it has been hard to sit back and see just what he is going thru.
Bye for now. take care. Linda xxx ooo xxx

 
Old 04-29-2008, 08:52 PM   #39
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katess HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi Linda and others out there.
I am so sorry to hear all of your stories. My Dad has also just been diagnosed with mesothelioma and my family are just devestated. Friends and others keep trying to find the right thing to say and there is no right thing, it is just so horrible and unfair. I guess i just wanted to touch base with other people who understand how this feels- it still feels surreal sometimes, like any moment I will wake up and it will all be ok. But then I remember.
Anyway I guess I will read and write more later but if anyone wants to be in touch to talk about it all that would be fine.
Kate

 
Old 05-10-2008, 07:08 AM   #40
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linda64 HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi Kate and everyone else reading this post.
Kate I am sorry to hear about your dad and can truly understand how you are feeling at this time. It is really hard to comprehend and it takes a while for it to sink in.
My father went to the specialist last Thursday 08/05/08 and has decided at this stage to cease any further chemo treatment. I really cant blame him and fully support his decision. He wants to have quality of life now.
Since ceasing the chemo he feels much better in himself although he tires easily and gets breathless which are symptoms of this horrible disease.
So now I'm taking 1 day at a time, spending as much time as I can with him, enjoying the good days, and just loving him as a daughter can with all her heart. take care Linda. xxx ooo xxx

 
Old 06-19-2008, 04:16 AM   #41
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linda64 HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi to everyone reading this post,
It's been a while since I posted so I thought I'd drop a line to let you know how things are going.
Dad celebrated his 64th birthday on the 060608.
He visited his specialist today. He had to have blood tests and a chest xray prior to his appt. Dr said he has a slight deterioration in his condition since he last seen him.
He has started to get the pain back in his side (which he hasn't had since his morpheine patch was increased quite a few months ago) so the dr has decided to increase his patch strengh. Hopefully this will help. He tires easily and gets breathless, but again this is part of this disease.
We are still taking 1 day at a time, enjoying every good day and trying to keep our chins and faith up on the not so good days.
my heart goes out to everyone reading this and going thru this horrible disease. take care Linda xxx.

 
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Old 06-22-2008, 09:12 PM   #42
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misE08 HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

My father was diagnosed this Friday the 13th with Peritoneal Mesothelioma. this is in the stomach and now in the chest cavity. He had fluid drained from around his lung and the pictures from his biopsy surgery shows no mass but it does show multiple nodules on his stomach lining which is the cancer. He is not a candidate for surgery or radiation, only chemo and he is unsure about taking it. He is so weak, breathless (on oxygen), no appetite and has lost lots of weight. He has been feeling unlike himself since January but just got diagnosed and has been told he has 9-12 months to live, but if he does not regain energy he will not make it 2 more months in my families eyes(so sad). This is the hardest thing I have had to face at the happiest time of my life, my husband and I have finally had a child after 2 years of trying and now dad will not get to see his grandson grow up. He is named after my dad and it breaks my heart. Any advice on how to get through this, what time you think my dad may have and should he consider the chemo? I am at a loss for words, direction, feelings etc. The only good thing that has come from this is that he was saved on June 7, 2008. Thank you for your help in advance and I am sorry for anyone else experiencing this terrible disease. Who knows, my mom, sister or myself may end up with it now b/c of the contact with daddy's clothes.....a friend of mine told me of this board to help me and I hope that I may find some hope or comfort here. Please Help!!

Thanks and God Bless you all.
MisE08

 
Old 06-28-2008, 02:20 AM   #43
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linda64 HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi

Here is the posting that I never wanted to come. My father succombed to this horrible disease on Tuesday 240608. My family and I are devastated as it happened so quick it took us by surprise. He was taken to hospital on the Sunday by ambulance as he got so weak and blood tests confirmed on the Monday that his kidneys and liver were shutting down. We were with him when he took his last breaths. We had him for almost 11 months from when he was diagnosed. I'm grateful that we had this time with him and were able to spend as much time as we could with him, but it is still so hard to go on without him, but I would never wish him back to go thru it again. Dad I will love you for eternity.
Mise08, my heart goes out to you and your family. My advice would be for you to take 1 day at a time, make everyday count and spend as much time as you can with your dad.
my prayers will be with you. take care. Linda xxxx.

 
Old 07-02-2008, 06:59 PM   #44
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robertsinyyz HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Linda,
I am so sorry to hear of the passing of your father. Please keep strong for your family and know that things will get better with time. At least you had 11 months with your dad and you took advantage of every moment you could. This disease is terrible and just when you think you're making progress...bang, you get a set back.

( removed )

My dad suffered for 9 months with this disease and during that time I did a lot of research and read a lot of books about the disease. While there is no cure there is new hope every day. Please take care and Linda, my thoughts are with you from the other side of the world. take good care, Robert

Last edited by moderator2; 07-02-2008 at 08:30 PM. Reason: posted contact info

 
Old 07-03-2008, 03:17 AM   #45
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linda64 HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi Robert,
Thankyou for your kind words. It really helps knowing other people care.
I have often wondered how you and your family are going.
I often spoke with my father about your dad's progress and treatments when you were posting but I could never tell him that he had passed away. I just wanted him to stay as positive as he could to stay with us for as long as he could.
I just really didnt understand how quickly everything would happen. One minute he was going ok, tired and breathless and had just started to get the pain in the side again but still able to get around,. shower himself and the next so weak, hospitalised and everything shutting down, all within 2 days. I never really seen it coming......... not this soon........ not this quickly.
I'm missing him terribly but I have a wonderful family and I would never wish him back to go thru it again.
Take care Robert and to all those out there going thru this horrible disease.
love Linda xxxx xxx.

 
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