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.
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.
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.
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
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 05:56 AM.
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.
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
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.
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.
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!
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.
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
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
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.
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.
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.
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***
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
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
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
