# Mesothelioma



## jam35007 (Aug 8, 2009)

Hi All,

Being quite new to this site i have noticed posts about Peter and Mavis, lots of info on the dreaded 'C' and info about Mesothelioma. My heart goes out to them both and i am really impressed at the support given on this site.

My husband was diagnosed with prostrate cancer in 2003, he went on to have some treatment, quite new at the the time called Bracchethereapy. this worked on the initial tumour. unfortunately the Dr's had missed something else in the prostrate and as a result it matassed to the bone. We were now dealing with not only prostrate cancer and all the complications that it brings but also the Bone cancer. Well you get on with it as you do and take one day at a time. Treatment was hormone tablets and he responded well and the cancer was being kept at bay.

Then what a bombshell, we were on holiday in May 2007 and Steve started to have difficulty breathing and could not walk very far. On our return we sought medical advice, Steve was admitted immediately with a collapsed lung. He had 11 litres of fluid removed from his lung, quite how he had managed so long no one could understand. On further tests and a biopsy it revealed Mesothelioma. Stage 4 of 5 and a hard pill to swallow of 12 months or less as a prognosis. 

Steve had the Talc Opp in June 2007 and commenced some radiotherapy to the wound entry and then commenced Chemo in October that year. Well he is still here, a lot fatter, (Chemo, steroids etc, but better that and here than not, a small price to pay.)

We have been advised that the treatment combined with the chemo (alimta) which was new at the time was having great effects on patients and the prognosis was better than expected.

We are now in October 2009 and on what we consider borrowed time, but we live and enjoy the time we have and at the last scans the bone cancer had shrunk or nearly is undetectable, his PSA result for the prostrate was 0.01 and the Mesothelioma had increased but only slightly and nothing that worried the oncologists. We now only have to see them every 6 months instead of between 1-3 months.

We feel very lucky and have had absoluteley fantastic treatment from the NHS and if we get any problems can speak direct to the PA's of the consultants rather than going through the GP and system which is great and one thing less to worry about.

Macmillian are fantastic, however we have not had to use them much yet and fingers crossed wont do for some time to come yet!

my thoughts are with Mavis at her time going through chemo, i know how my husband was and it was tough, not just on him but the friends and family around - a very stressful time for all! 

KR's

Sara


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## rowley (May 14, 2005)

Hi Sara and Steve, my thoughts are with you both and trust that the treatment will be successful. I had a brachytherapy 3 years ago and everything seems to be ok. Your procedure in 2003 must have been one of the first in this country. Best wishes, Rowley.


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## jam35007 (Aug 8, 2009)

thanks,

Yes one of the first - almost Guinea pig, it would have worked had they not have missed the other larger tumour -but as said the tablets etc... are working at the moment - that is the least of worries as it is the Mesothelioma which has taken a precedent now - but we must not dwell!


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## DTPCHEMICALS (Jul 24, 2006)

Hi I may have had a drink or two this afternoon as it was father in laws funeral this morning.
He too had meso whatsit and refused treatment as he was in his late 70`s.
Our hearts go out to you. life can be cruel. think of all the good times in life.
We have had several disasters in our family but remember the good times. 
Now i live today as if it may be the last
We never know.

Dave p


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## carolgavin (May 9, 2005)

Thanks for sharing your story. I hope Mavis sees it as it shows that although the chemo is hard it is well worth it. I sincerely hope your husband keeps well.

DTP sorry about your FIL.


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## Invicta (Feb 9, 2006)

Thanks so much for sharing your story with us here on MHF Sara.

I sincerely hope those critics of some of the subjects posted here on this website stop and think how supportive it could be to read such a posting if they were in a similar situation.

I am sure the posting will be of special interest to Mavis when she reads it.

Can anyone suggest any other web site that would carry such a story for the 'general' public to see? I regularly look at and contribute to a web site for nurses but patients stories such as the ones seen here on MHF are never featured.

I for one would be pleased to read here on MHF any progress reports that Sara feels able to share. For those not interested in the welfare of fellow MHFers they have the choice not to read them.


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## UncleNorm (May 1, 2005)

Well done Sara for sharing your story with us. It is refreshing to have something more towards good news, rather than bad. I wish Steve, and you, continued good fortune.


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## geraldandannie (Jun 4, 2006)

Hi Sara

Thanks for posting that. Steve's story sounds so much like Mavis's - shortage of breath, fluid on the lung. But having 29 months (and counting :wink: ) after a prognosis of 12 months is fantastic.

I know one of the things Mavis wanted to do was to help to publicise this disease, and also try to break down the wall of silence that sometimes surrounds cancer. I think she's so brave to be sharing her struggle with us and the world at large through her website and blog. I'm sure yours and Steve's story will give her a huge boost. We all know the prognosis for mesothelioma, but as I said to her some time ago, every disease like this is fatal until they find something that stops it being fatal.



Invicta said:


> I sincerely hope those critics of some of the subjects posted here on this website stop and think how supportive it could be to read such a posting if they were in a similar situation.


100% with you there.



Invicta said:


> Can anyone suggest any other web site that would carry such a story for the 'general' public to see? I regularly look at and contribute to a web site for nurses but patients stories such as the ones seen here on MHF are never featured.


That's strange, isn't it? I'm a real supporter of the demystification of diseases like this. Why not discuss it with other people? I'm sure some people are in denial, and if they don't talk about it, it'll go away.

As Norman says, it's nice to read some positive health news on here.

Gerald


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## jam35007 (Aug 8, 2009)

Thanks all for your kind words, just thought Mavis could do with some good news and encouragement.

have read her blog and she speaks of some extra time (this is what they tell you the chemo will give you), Steve is living proof that the chemo is well worth the pain - he would not be here if he had not had it. He is 60 now and was only 53 when diagnosed with the prostate cancer which is very young, and 58 when diagnosed with the Mesothelioma which he got through work. 

We have 4 young children and a dog, all of which need him, so i tell him and his consultants that he's not going anywhere yet!


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## Hampshireman (Apr 18, 2007)

Thanks Sara and best wishes to you both. I happen to be here on MHF at this awful hour as I can't sleep at present, due to excitement over my 70th b'day party today and an art thing buzzing my head off and had never heard of Mesothelioma so I looked in.

As it happens, I was on the phone asking our cancer clinic when I could expect the call for my keyhole surgery to rid me of prostate cancer, diagnosed in about July this year. They said it will be 2 weeks notice, say around early Nov and why was I asking.

I have been offered some painting time with some of the pro artists high in my esteem. It was a chance conversation and one of them invited me. OK they have spaces suddenly open on the sessions but they asked me anyway. To be chuffed is the last term I would use.

My MRI scan confirmed the cancer is contained and we opted to have the thing removed. I considered bracchy, radio, hormone, chemo, cryo etc but they seem so invasive, not conclusive and long term, so at my age the surgeon suggested radical surgery and my wife and I had already come to this conclusion. Yes it can have sexual complications and they wouldn't offer it to younger folk, but we thought that one through too.

A dear friend of ours aged 83 BTW developed complications and sadly passed away recently, starting with prostate, but he was silly and ignored tests and didn't tell anyone in the family either. It went to spine and on top of all his other medication complications set in, then pneumonia. The point being is that they could have done something. 

Luckily Steve was caught and treated and with you and that is the main. thing. So on the suggestion of the clinic I am going on this painting do and live it to the full. Life has to go on.


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## jam35007 (Aug 8, 2009)

Hi,

Happy Birthday, I hope you enjoy your day and the painting. 

The sad thing about prostate is it is the highest killer i men and so few men are aware of it. Apparently it is hitting many young men from 35 - 50 and they don't know as testy not available until over 50. The younger you are the more aggressive it is. 

Steve did have the options of removal and as you say opted for the Bracchy because of the Sex side - Silly mistake, this was his pride and nothing else, i am much younger and he thought it would matter to me!

I had wanted him to have it out because having done much research and knowing too much about Cancer (much in the Family), i thought it would be better. It was a decision Steve regrets, not only because it went to the bone but because of the next treatment he had to have, i.e the hormone treatment stops the sex anyway. Had he opted for removal there is a chance that the sex side is not affected too badly, whereas with the hormone treatment its gone completely as it also removes the desire. Steve was unlucky though as many who have Bracchy are fine and no issues.

We know that had he opted for removal it would not have gone to the bone and now be terminal - Although we also now know he still would have had the Mesothelioma - Most people know this as cancer from Asbestosis, He used to work with the stuff.

The issue that angers Steve is that we also had to have a court case to prove the Asbestosis, which he won, however because of the prostate cancer it limited his pay out. The experts concluded he would die before a certain date as the prostate had matassed to the bone, where as had it not, they would work out beyond pensionable age based on current earning and then his pension income. As he otherwise was in good health it would have been worked out on a average year of death for someone in Steve's health, much greater than that predicted because of the prostate and a huge difference in monetary terms.

But as said he fights it with support and i never let him dwell on it, as soon as he has a spout of depression i have to be cruel to be kind and it passes. I just remind him that there are so many people far worse than him and he has been dealt this and he needs to move on and enjoy - be positive (easy to say i know, as its not me but i firmly believe being positive is also a treatment that works)

Have fun today & best wishes for the future,

Sara


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## Pusser (May 9, 2005)

Thank you for an interesting insight into a world we all hope to avoid. It's totally absorbing accounts like this from fellow motorhome owners that makes this website so different. I do hope this is to a degree a nasty thing of the past and the future is bright and you can catch up on missed trips.


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## locovan (Oct 17, 2007)

jam35007 said:


> Hi All,
> 
> Being quite new to this site i have noticed posts about Peter and Mavis, lots of info on the dreaded 'C' and info about Mesothelioma. My heart goes out to them both and i am really impressed at the support given on this site.
> 
> ...


Im so so sorry I missed this yesterday as I was ill in bed and sleeping most of the day.
It is so great to hear of someone else that is ahead off me so that I know there is a future with all this treatment.
Im so glad you have read my blog (over 2000 hits todate) I have been helping others through this and that makes me so happy that some good can come out of this.
I feel a bit better today but I cant get far away from the bathroom but if I know this is going to pass soon then i can put up with it and look forward to the good day's.
All I keep saying is Im sorry to Ray. Im sorry Im sorry --he keeps saying stop it Its ok-- oh how our lives have changed.
I was always out in the M/H always dancing and now Im classed as a 100% invalid with a blue badge --what a shock.
Well good luck and thanks for writing on here as so many people don't know that have been in contact with Asbestos, the figures wont peak until 2020 and Im the only woman in Whitstable and only 3 being treated at the Kent and Canterbury in Chemo so there isn't enough imfo out there yet.


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## Invicta (Feb 9, 2006)

In my later years in the nursing profession I worked as a health visitor where I sweated my guts out to promote preventive medicine.

Along with the soaps, EastEnders and Corrie to mention but two, postings found here on this web site bring health matters home to people more so than ever I was able to achieve in my professional capacity.

Without doubt today I bet there are some MFH men now seriously considering having their prostates checked.

A special thanks to Mavis for her blog which I know is going a long way to give support to people suffering from the dreaded 'C'


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## Otto-de-froste (May 20, 2005)

*Prostate Cancer*

Having noticed blood in the urine in June 2004, at 52 years of age I visited my GP and was advised of the probable causes; including the possibility of PC.
This came completely out of the blue with no other symptoms till that time. MRI, x-ray, blood and urine tests suggested nodes on the bladder, but it was not until a biopsy was conducted that PC was diagnosed. It had been so aggressive that it had taken most of the bladder.
Surgery was out of the question, as was chemo-therapy; and I was advised that palliative care was the only course of action.
With a PSA level of 15, I asked my GP what the likely causes were, and he suggested smoking (I don't smoke, but spent all my childhood in an atmosphere of secondhand smoke); high fat diet (maybe, but not what I would consider excessive); just bl**dy bad luck (that made more sense).
After breaking the news to our boys we went away on holiday and returned to a letter from Hallamshire Hospital offering a radical new radiotherapy treatment.
4 weeks x 5 days per week for 1/2 hour session. Courses of injections, and the start of 3 monthly Prostap injections (inhibiting the production of testosterone), for the rest of my life.
How does it affect our lives now?
Well I was a 30 waist, but am now nearer 36. I tire easily and feel rough some mornings.
Many things we took for granted are no longer possible, but we have had 5 years together.
I have also had some very caring and heartwarming comments from MHF members that have brought a few tears.
In the face of our uncertain outlook we took a risk and bought our first motorhome. 
We don't know what future we have (but does anybody?)
Recommendations:
If you are male and over 50, PLEASE PLEASE get your prostate checked, and if possible get a blood PSA done.
Check it every year from now on.
OK it's not a nice experience, but at least you have the satisfaction of knowing it's worse for the doctor.  
You owe it to yourselves and your loved ones.


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## jam35007 (Aug 8, 2009)

Know what you mean on the waste line, Steve was a 36 and now a 42, obviously this is not just down to the 3 monthly hormone injection of Zoladex and the Casadex tablets each day but also the Chemo he had for the Absestos and the steroid treatment.

He hates the weight gain but loves the fact he is still here!

Any man that has blood in urine, or pee's alot or has changes in their toilet habits should ask for a PSA - although this is not always the thing that demonstrates an issue - it was not with Steve - but he was not a 'text book' case - his PSA was normal for 6 months even though he had the cancer - it was after the treatment that the PSA rose to alrming rates of 19 that the DR's realised something else was wrong, i.e showed a tumour that had been missed. The first one did not show up in PSA but caught as part of a medical by the compnay we work for - a slight enlargement on one side!

Sara


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