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Old 10-15-2007, 08:48 PM   #16
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robertsinyyz HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hello All....

I just wanted to give you all an update. Linda, I know you asked me about what Chemo drugs my father has been taking and his progress. They are giving him a drug called "alimta". He gets it every three weeks
in a day clinic at the hospital. He started on September 5th and I have noticed considerable improvements. He can breath a lot easier and his
appetite as returned to normal. While we know that this is not a cure it is encouraging to see that it is helping him. On October 31st he is having
a CT scan to see how much the Alimta has shrunk his Mesothelioma tumor. The down side is that he is nausiated and exhausted for 1 week after he has the chemo....so he has 1 week of feeling terrible, then 2 weeks of feeling good. If this has bought him more time it is well worth it. My thoughts and prayers are going out to everyone who has been touched by this terrible disease. Take care, Robert

Last edited by robertsinyyz; 10-15-2007 at 08:48 PM.

 
Old 10-19-2007, 02:40 AM   #17
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hello Robert, glad to hear that there is an improvement on your father's condition after having Chemo. Drug Alimta is the only drug available for Mesothelioma sufferers, as far as I can remember, and although it will not cure the disease but it will give the sufferers hope and more quality time with their love-ones. My husband was offered the drug Alimta before but the doctors said to us it won't change much on his condition as it was already so advanced that if and when he has a chemo, the treatment would probably do him worse than good. Thinking of you and your family and pray that your father will soon get back his strength! God bless.

 
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Old 10-20-2007, 04:52 AM   #18
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

It is a long time since I last posted anything on this site but I feel that I should now do so because the news about my dad is very encouraging. If you search under GaryR you will find what I have previous written. Dad was diagnosed with malignant meso in february 2006 and had 3.5 litres drained from his lung. He then had 6 courses of chemo with Alimta. This was a tough time for him. Two weeks after the last chemo we got him to take zeolite drops, 15 at a time 3* a day. Since then he hasn't taken a single pain killer and 4 months ago the consultant at Hull general hospital showed him an x ray that showed the mass was dramatically less. However, 3 weeks ago it showed that there had been a slight increase in its size. This could be because dad had become a little blase and reduced his drops to 10 at a time. Even so, he is in no pain at all and the consultant seemed confused about when the chemo had finished, he thought it must have been this year, not last! He doesn't want to see him again until January. This is the same consultant that told mum in March 06 that he'd got about 6 months to live.

I know of many real accounts of folk with terrible cancers who have used zeolite and had tremendous results. If your loved one is suffering please please give it go. I am increasingly convinced of its worth. And for the skeptics amongst you I am not an agent and have never received a penny or sold any product.

GaryR

 
Old 10-24-2007, 05:49 AM   #19
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi everyone, Robert thanks for letting me know how your dad has gone with the chemo treatment. I haven't checked the board for a few weeks and was really happy to get an update and to hear Gary's story, it gives me a little hope. My father has an appointment with his Oncologist tomorrow, 25/10/2007 this is a check-up appointment and to discuss his decision on whether he will have the Chemo treatment. At first he was anti-chemo treatment but after researching a bit on the internet and showing him some reports and stories on the Alimta he is willing to talk to the oncologist about it. He has to have a chest xray prior to his appointment so we should know if the plueral effusion is working.
He is keeping fairly well but he tires easily and I have noticed that when he talks he gets very breathless. the hot days do seem to be worse. will keep you all posted on progress and look forward to hearing from you all too.
my thoughts are with you all, take care. Linda

 
Old 11-20-2007, 08:27 PM   #20
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robertsinyyz HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hello All,

Just a quick update to let you know that my dad had is xrays done on October 31st and found out that Alimta has shrunk his Mesothelioma
mass by 50%. We are very pleased that we made the decision to go with the Chemotherapy. He is getting back to his old routines and is feeling a lot better. We know that we are only buying time with this drug, but please
know that for some people it really works well. We really didn't think that we would have him around this Christmas, but we have already made plans and are thinking positively. Linda, did your dad decide to take chemo ? Please keep me posted. My thoughts and prayers are with you and everyone who has been touched by this terrible disease.

 
Old 11-29-2007, 04:56 AM   #21
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linda64 HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi all,
Robert I'm so pleased to hear that the Alimta has worked for your dad and things are improving. My father had his appt 21/11/07 and has decided to go ahead with the chemo treatment. He will start mid January and it will be given to him also every 3 weeks for 6 treatments. He will apparently be given chest xrays throughout the period to see if he is responding to the chemo drug.
He has been keeping fairly well but still gets tired easily and breathless.
I will keep you posted on how things are going. please keep in touch.
my thoughts are with you and everyone who is reading this that is being touched by this terrible disease. take care Linda xxx.

 
Old 12-27-2007, 03:48 AM   #22
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi All,
Just thought I'd touch base and update you on how things are going with my dad. He will start chemo around 14 January 2008. He tires easily and gets frustrated at not being able to do things like he used to. we were so thankful that he was well enough on xmas day to come for christmas dinner with all the family. It was a very special time.
His pain relief is increasing as he is starting to get more pain. The specialist has requested he has a bone scan prior to starting chemo to check how things are going. Robert if you read this I would love to hear from you to see how your Dad has been going since the chemo finished,
take care Linda.

 
Old 01-01-2008, 06:51 PM   #23
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robertsinyyz HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi All,
Hope this fiinds you all well and enjoying the holidays. Linda,
my dad has been undergoing chemo since September and the
oncologist has not given him any idea when it will end. He was
thankful to find out that his tumor mass has shrunk by 50%.
He has gotten stronger and is able to walk futher. I just
wish that there was a firm cure for this horrible disease. The
chemo is being administered at our local hospital once every
three weeks. They have to closely moniter the kidney function
while undergoing the treatment. We had a slight "blip" a few weeks
back when we were told that the chemo (Alimta) is causing him
kidney damage. Now he has to have a 4 hour daily saline IV
drip for 7 days prior to having the chemo. Then he feels terrible for
7 days and then feels good for 7 days before having to have the
one week saline drip. In the end it has all been worth it. I am
convinced that he would have passed months ago with out it.
Back in the summer I would have said that there was no way he
would make it to Christmas....and with the chemo he has.
Please keep us all updated on your dads progess and let me know
how he is making out with the Alimta. Expect him to feel nausiated
and tired for 7 days after he gets it. All the best to you and everyone
whos lives have been touched by this tragic disease. Lets hope that
2008 holds some better days for all of us.

 
Old 01-19-2008, 04:28 AM   #24
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linda64 HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi to all
Robert thanks for keeping me up to-date with your dad's progress. I hope everything is still looking positive and that your dad is coping as well as can be expected while having his treatments.
My father had his first chemo treatment on Tuesday, 15 January. he started to feel nauseaus on Thursday night & Friday but today (Sat) I dropped over to visit and he is feeling much better. he still hasn't got much of an appetite but is trying to eat little amounts, he is a diabetic so he has to try and eat something. they have also told him to drink lots of fluids as the chemo can damage his kidneys (which we had prior warning about with an earlier posting with problems Robert's father had with his chemo treatment). He now has a blood test at day 10 and then to see oncologist again on the 310108 to review.
Robert my father had to have a B12 injection 7 days prior to chemo commencing and they also have him on a vitamin (folate ???????I cant remember exactly what it is called) which he had to commence 1 week before chemo commenced and he has to continue throughout treatment and for up to 1 week after chemo ceases. Did your dad have to have this b12 injection too? I'm curious to know if everyone on this Alimta for meso treatment has exactly the same treatment or does it just depend on who the dr is???
Bye for now. take care. Linda

 
Old 01-24-2008, 05:59 AM   #25
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Mesothelioma – what it means to me. Jan 24th 08

Hello! I’m Terry I live in the UK I’m a fairly fit 68yr old and have been in the construction industry all my working life.
I just thought it could be useful to share my fly on the wall experiences, perhaps with other potential candidates maybe anxious about treading a similar path.

I suppose for me, the meso’ scenario started back in April 3rd 07 – I’d been playing racquetball that evening and had given up in frustration due to a lack of breath, my wife who happens to be a practising GP examined me, only to find a large plural effusion (amount of liquid) to my right lung.

Then followed hospital consultations resulting in a draining off procedure, more consultation with a Mr Richard Sayer - thoracic surgeon who advised a trip to St Georges Hospital (Tooting) to perform a VAT procedure (Visually assisted Thoracoscopy).
A biopsy was performed at the same time and I was sickenly given a diagnosis of Epithelioid Mesothelioma (a grade three tumour).

My world stopped around then – having never a problem medically before I was now faced with this incurable cancer condition and been given a prognosis of eleven months life expectancy, so now what to do – I do know my first feelings were that I just didn’t want this thing in my body and with my wife to guide me, sought the advice of Mr Richard Sayer who after a CT scan advised that as I seemed quite fit and the meso’ was of a low grade type then having a full EPP was a possibility.

So as the current MARS plan (random selection) was a bit hit and miss as far as I was concerned, I opted to go for the chemo/ epp/ and radiotherapy plan. So following a private oncologist consultation I agreed to pay privately for four sessions of the chemo procedure, to make sure of obtaining the much talked about Permatrexed (Alimita) which is not allowed presently for general use by NICE.
I also knew that I should be reimbursed for this expenditure via an insurance industrial injury claim that is presently ongoing.
I coped generally very well with this, experiencing only very minor chemo discomfort.

On the 1st October 07 I underwent the EPP operation which lasted about three and a half hours – I understand some of that time was for a preliminary biopsy on a lymph node which needed to show there was no infection prior to the op’, incidentally the aesthetic these days is pretty user friendly and doesn’t leave you now with a stonking headache. You’re then placed in the IC ward for a few days, only in my case I unfortunately started an unscripted bleed in my chest and resulted in a dialysis session and transfusions, which added on a few more days, and have to say during the time spent there pain wise, amazingly I suffered from only a dull ache to the rear ribs affected.




So now back to the general ward – one problem that’s worth relating here is that whilst in IC I was put on a ripple mattress which when propped up in bed didn’t do much for my coccyx, so when I asked and was allowed to have a full air mattress I was overjoyed and helped my sore bum enormously, I haven’t got round to mentioning the one lung breathing scene as yet, although I had mentally prepared myself for this I didn’t allow for any other restriction, which was now the case because due to the soreness of the right side of my chest the diaphragm was affected, so whilst laying in bed this wasn’t too much of a problem but when I decided to go shower, now that body tubes had been removed. The room was only a mere 40ft away – but I tell you in the event it was like walking 400ft and left me breathless and with heart pumping, after that experience it started to become a lot easier and I learned to breathe deeply and slower.
In all I spent twelve days in hospital and the care shown by the doctors and nurses was the best I’ve ever experienced.

Three weeks at home recovering and now up to the Royal Marsden Hospital (Sutton) for a computerised scan and planning for radiotherapy, I was advised that this radiation to my chest would leave me tired and lethargic and boy were they right! I had to receive 30 sessions daily @ 5 days per week, 3 weeks later I began treatment and I suppose I noticed tiredness starting in after about12 sessions and progressed to me taking daily afternoon naps and towards the end of treatment having to be practically torn from bed.
I completed all treatment on 15th January 08 and I’m still pretty lethargic and chest sore, but in good spirits and looking forward to being normal once more, what the future holds – I haven’t a clue - I’m just glad that I did it.

If these meanderings help at all then it may have been worthwhile to anybody faced with this savage condition and its limitations, we know that no two people are alike and case histories differ – so this is just how it was for me and how I approached it.

Best of luck Terry

Last edited by boombreaker; 01-24-2008 at 06:56 AM.

 
Old 01-27-2008, 06:53 PM   #26
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi all
I hope this message finds everyone safe and healthy.

Yes Linda, my dad had to have a vitamin B12 shot 7 days before starting the chemo. He also had to have a folic acid shot once every month while on the chemo. He is doing well. He had an evaluation last wednesday and was told that the mesothelioma tumor has shrunk by 75%. The doctors showed us 3 xrays, one from July of 07, one from October of 07 and one from last week. You can clearly see the mass shrinking. I was so pleased to get the news and this has made him even more determined to fight this diseasse.

I should mention that if your dad has lost his appetiate he should as the
doctor for a drug called "Megane". This is a drug they usually give breast cancer patients to get them eating. He tried it and within a week his appetite was back to normal and he was gaining weight back. It was a godsend to find this drug.

I will keep you posted on his progress. All the best to everyone and thank you for your prayers.

 
Old 02-05-2008, 04:59 AM   #27
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linda64 HB User
Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi to all
Robert I was pleased to hear from you and am really happy to hear that your dad is responding well to the treatment.
My father had his 2nd round of chemo today (05/02/08) .
Apart from a bit of nausea in the first week and loss of appetite he got thru the first lot of chemo with not too many side effects. Will update again soon.
bye for now and all the best to you and your families xxx

 
Old 02-11-2008, 02:09 AM   #28
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi folks. They first found my tumor in April of last year, but it took until September for it to be finally diagnosed as meso. By that time I'd gone from stage II to stage III. Another month passed before my first chemo, Alimta and Carboplatin. After two cycles the doc said that they weren't working, based on the ct scans. She s*****ed me to doxorubicin and cytoxan. I've had two cycles, and I'll find out in two weeks if these work. My side effects to the chemo has been similiar to those that ya'll describe. Usually I'm out for a week, then get better every day. At age 50, I know I'm younger than most with meso, and can probably bounce back sooner.
I'm glad to hear alimta is working for some of you; I was devastated when the doc told me it wasn't working for me. I don't know what I'll do if the new drugs don't work. There's only an 11% chance that they will, so I'm looking at other options. The doc says that I should plan on living six months, and hope for up to 12. An acquaintance told me that he had gone to Germany a couple of years ago for immunotherapy. Do any of you know about this?
The pain in my side is manageable with Vicodin, but it's getting worse. And I continue to weaken. I welcome anyone's tips on what has helped.
Thanks, and God bless those of you who are family and caregivers. This disease is harder on ya'll than it is on me.

 
Old 02-17-2008, 06:22 AM   #29
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hello to everyone/anyone reading this.

Hi SpTexas. I am saddened to hear that you are fighting this terrible disease and so young. My fingers are crossed that you have success with the new treatment you are having. Please keep us posted. Our prayers are with you.
My father had his second round of chemo (alimta & Carboplatin). He has had a rough 2 weeks . mainly lethargic/nausea. He will see the specialist this week to see how things are going.
My father has been on a fentanyl (unsure if thats how its spelt) patch for a few months to help control pain and liquid ordeine, when needed. The dr increased the patch (mg) recently as his pain was becoming more constant. Unsure if this information is of any help to you but this is how my father is managing his pain relief at present.

 
Old 02-17-2008, 01:28 PM   #30
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Re: father just diagnosed with malignant mesothelioma 07/31/07. age 63

Hi All,

It's quite a long while since I posted anything on this blog, but when my dad got meso 2 years ago I was quite active on the site. Dad went through all of the same things that I can see you guys are writing about, including the lungs filling with fluid, the Alimta and 6 sessions of chemo etc. In early March 2006 the consultant told mum that he'd only got about 6 months but after the chemo had finished he started taking liquid zeolite and has done so ever since. He has been free of pain, except for the occassional pain in his side, and has not had to resort to pain killers. He only visits the consultant every 4 months.
The zeolite is expensive; it costs £2.70 a day, but he takes it 3 times a day without fail. It may be co-incidence but if so it's a good one. He also had prostrate cancer but the hospital consultant has told him that this has now cleared and he only needs to see his GP once a year for a check-up.

Last September my friend (59) was diagnosed with liver cancer and he has also taken the zeolite and after 4 months the scan revealed very considerable progress. He only had one chemo session and decided not to have any more. LIke Dad he isn't in any pain whatsoever.

Because it sounds a bit quackish I've tended to be a bit reticent over the zeolite but I've seen so many real, in contrast to invented, examples of it producing good results that I want other sufferers to be aware of it so that you at least have a choice.

Oh, and another thing, Dad had a lot of moles on his chest and back but 85% have now disappeared and those that remain are fading!


God Bless,


Gary
Cambridge
England

 
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