Mesothelioma - Cancer caused by exposure to Asbestos - Page 2

Helm · #21 19.08.2011, 11:00

	Quote:	Pather
	Does anyone know of someone who is surviving with one lung? The doctors have said that it will only marginally impact his life, but that is only statical. I guess I'm looking for a shaft of light in this dark tunnel

My mother had 2/3 of her right lung removed at the age of 6. A very very nasty reaction to the BCG vaccine created masses on her lung and they removed it before it had the chance to turn worse.

She is still alive today. She has some nasty allegies that were probably generated by decreased lung function, she can't run a marathon, but she is a teacher in a country were teachers work as slaves and she is doing fine. She has serious health complications, but they are result of the full body anestesia, which was not awesome 50 years ago.

It is a different case, but she managed with 1 lung and 1/3 very well in the last 50 years.

Just wanted to leave a positive hope note.

All the best!

Belgianmum · #22 19.08.2011, 11:16

	Quote:	Pather
	Does anyone know of someone who is surviving with one lung? The doctors have said that it will only marginally impact his life, but that is only statical. I guess I'm looking for a shaft of light in this dark tunnel

We have a very good friend who had his whole left lung removed about 15 years ago ( also because of problems related to TB) and he is doing great.

It doesn't seem to have affected his fitness too much and he still coaches the under 13's football team. He has to be careful if he gets a cold to avoid getting a chest infection but overall it hasn't really affected his quality of life. He's in his 40's now so not as old as your father in law but it shouldn't really make a lot of difference if your FIL is otherwise in good health.

Scottydog · #23 20.08.2011, 23:06

Hi Pather

sorry to hear of all that you are going through, good that your f-i-l has such wonderful supportive family,to stand by him.

I do hope that you can encourage him to have the surgery.

My mother in law had one lung removed due to lung cancer, and lived relatively healthily after that for 7 years (and died of a pulmonary embolism, so don't know if that was directly related or not). I am sure it didn't help that she continued to smoke heavily

after the lung removal, but even in spite of that we were able to share more time with her, and she was able to enjoy the births of 2 more grandchildren - all quality time for us, and all the more precious knowing that it might not have happened without the surgery....

so lots for him to weigh up, but he could definitely have good quality of life with one lung, especially taking into account his current healthy lifestyle

best wishes to you and your family, sending love and support to you!

#24 21.08.2011, 04:48

	Quote:	Pather
	Does anyone know of someone who is surviving with one lung? The doctors have said that it will only marginally impact his life, but that is only statical. I guess I'm looking for a shaft of light in this dark tunnel

Yes this is entirely possible, the right lung will take up the whole job, and I agree with the doctors reallly

#25 21.08.2011, 07:58

Both of my parents died from Lung cancer, within a short time period of one another. They were both avid non- smokers, they would not even tolerate cigarette smoke in any room and were very outdoorsy health-freaks. At the time I was told either asbestos or radon were the likely suspects.
My mother was given 2 years and lasted about 3 months. My father was given 6 months and lasted 2 years. This was 30 years ago when treatment was not as advanced.
I live in fear of lung cancer- but so far am clear. I have read the info on survival rates- I assume that you have too. The only light is that not enough is known to accurately predict survival rates in every case.

A couple of months ago I was on jury duty for a mesothelioma case. There was no doubt that mesothelioma was the cause, apparently now medical evidence can pinpoint it.

My advice is the obvious try to get the best medical advice possible got to a teaching hospital and get a second opinion. Personally if it were me, I would opt to have the lung removed but everyone is different. After he has received the best advice possible, you must support him with his decision- which could be very tough, so I wish you all the best.

MusicChick · #26 21.08.2011, 08:28

Our sites at home state that malignant mesothelioma caused by amfibol asbestos fibers (the other fiber is chrisolit) can be also found with family who live with the person who was exposed to amfibol for a while and brought the fibers home in his clothing, if the work clothes were washed at home.

First symptoms can appear anytime 20-50 years after exposure. It is said that surgery is only offered to stage I patients (the fact they suggested surgery is great!), stage II says lymphatic nodes are affected. The treatment stresses the surgical way, the chemo or radiation is considered only supplementary to surgery.

With chemo back home, they experiment with interleukins and interferons, but they don't list outcomes yet.

Good luck to you fil. And hugs to you.

Panther · #27 21.08.2011, 10:52

Thanks you, once again.
I need to give my f-i-l the link to this thread. My heart breaks when I see him, trying to be so brave.
Personally, I do agree that surgery would be a better option, because right now, his health and fitness levels are excellent, so he would recover.
And we do not use our lungs to its full capacity, so I dont see the problem of one lung need to take over the others capacity.
The problem is that my In-laws are very holistic people, wouldnt even take a Panado with 40degree fever. So I'm out numbered

. But I will not advise him (until he asks), he has to get over this trauma, and come to terms with the implications of living with Cancer, which he hasnt, as yet.

I have also encouraged him to seek a Psychologist who deals with Cancer patients. He replied : whatever for! I replied that he needs a perspective from someone who is not emotionally attached to him.

	Quote:	hoppy
	Both of my parents died from Lung cancer, within a short time period of one another. They were both avid non- smokers, they would not even tolerate cigarette smoke in any room and were very outdoorsy health-freaks. At the time I was told either asbestos or radon were the likely suspects. My mother was given 2 years and lasted about 3 months. My father was given 6 months and lasted 2 years. This was 30 years ago when treatment was not as advanced. I live in fear of lung cancer- but so far am clear. I have read the info on survival rates- I assume that you have too. The only light is that not enough is known to accurately predict survival rates in every case. A couple of months ago I was on jury duty for a mesothelioma case. There was no doubt that mesothelioma was the cause, apparently now medical evidence can pinpoint it. My advice is the obvious try to get the best medical advice possible go to a teaching hospital and get a second opinion. Personally if it were me, I would opt to have the lung removed but everyone is different. After he has received the best advice possible, you must support him with his decision- which could be very tough, so I wish you all the best.

Thanks hoppy for sharing your experiences. I am so sorry for your loss, I cant imagine how difficult it must have been for you. About the second opinion, could you recommend another hospital, other than University Hosiptal, perhaps?

	Quote:	MusicChick
	Our sites at home state that malignant mesothelioma caused by amfibol asbestos fibers (the other fiber is chrisolit) can be also found with family who live with the person who was exposed to amfibol for a while and brought the fibers home in his clothing, if the work clothes were washed at home. First symptoms can appear anytime 20-50 years after exposure. It is said that surgery is only offered to stage I patients (the fact they suggested surgery is great!), stage II says lymphatic nodes are affected. The treatment stresses the surgical way, the chemo or radiation is considered only supplementary to surgery. With chemo back home, they experiment with interleukins and interferons, but they don't list outcomes yet. Good luck to you fil. And hugs to you.

Thanks, we have some luck with that, he was exposed to asbestos during his apprenticeship.
My hubby is accompanying him on Wednesday for the next consult, we were also lookin into Interleukins and Interferons.

MusicChick · #28 21.08.2011, 11:24

	Quote:	Pather
	Thanks you, once again. I need to give my f-i-l the link to this thread. My heart breaks when I see him, trying to be so brave. Personally, I do agree that surgery would be a better option, because right now, his health and fitness levels are excellent, so he would recover. And we do not use our lungs to its full capacity, so I dont see the problem of one lung need to take over the others capacity. The problem is that my In-laws are very holistic people, wouldnt even take a Panado with 40degree fever. So I'm out numbered. But I will not advise him (until he asks), he has to get over this trauma, and come to terms with the implications of living with Cancer, which he hasnt, as yet. .

One can be holistic as not trusting chemical stuff and wanting only natural remedies, in this case letting him know that surgery is the most conservative of treatments not actually be the most invasive part of the treatment, maybe could help fil to see things differently...

If holistic means not messing up with how nature made us, even with faulty parts, then it gets tough. I was mad at my grandad when he refused treatment, him being the biggest naturopath I have known, since one has family around to exist for, and also, choosing holistic ways with cancer means intense physical suffering, often.

Good luck, he is lucky for having lots of loving family around, that is good vibes and positive mind on its own, no matter what he chooses.

#29 21.08.2011, 17:45

	Quote:	Pather
	Thanks you, once again. Thanks hoppy for sharing your experiences. I am so sorry for your loss, I cant imagine how difficult it must have been for you. About the second opinion, could you recommend another hospital, other than University Hosiptal, perhaps? Thanks, we have some luck with that, he was exposed to asbestos during his apprenticeship. My hubby is accompanying him on Wednesday for the next consult, we were also lookin into Interleukins and Interferons.

I have to be honest, all I know is what I read on the internet and what I read is not good. I think that counselling should be offered to carers. the care is a very personal issue.

My father tried every new treatment ( 30 years ago!) In the beginning he cycled to and from his radiotherapy sessions, he was determined to beat it. at the end my mother ( they had been separated for years) cared for, but he died in hospital fighting to the end. He remained agnostic.

My mother did not want treatment, she was on morphine etc. She remained for the large part lucid and ambulant (on Morphine etc.) I cared for her she died at home. She never went to hospital- that is the way she wanted it. An atheist all her life she suddenly turned religious shortly before death. She asked about cannabis and the doctor said that it might help.

My parents were treated in the UK. I have faith in hte London teaching hospital, St Barts seems to be leading the field, but my faith maybe misplaced- the UK is swamped with mesothelioma cases at present there is a very high incidence in the UK. As far as I know University hospital of Zurich is the best in Switzerland. There is University hospital of Berne too

	Quote:
	Since the initiation of a multimodality approach including neoadjuvant chemotherapy and extrapleural pneumonectomy, the Clinic for Thoracic Surgery and the Clinic and Policlinic for Oncology at the University Hospital of Zurich have become the major referral center for patients with malignant pleural mesothelioma in Switzerland.

http://www.cnz.uzh.ch/Research/RG4/Stahel.html

	Quote:
	There are two surgical approaches to mesothelioma, pleurectomy/ decortication (P/D) and extrapleural pneumonectomy (EPP). These are extremely specialized surgeries, and may not be offered at all facilities. Not all thoracic surgeons have expertise in these types of surgeries. The ultimate goal of these procedures is the removal of all gross disease, with the knowledge that residual microscopic disease will most likely remain. Adjuvant therapy, in which additional forms of treatment are used along with the primary therapy, is typically aimed at the elimination of this residual disease. The most common forms of adjuvant therapy are chemotherapy and/or radiotherapy. Pleurectomy/decortication is considered the less radical of the two approaches since it involves only the removal of the pleura (lining of the lung) without resecting the underlying lung. In some cases, the pericardium and diaphragm may be removed, dependent on the extent of the tumor. Advantages of this procedure are a generally quicker recovery time, and usefulness for patients who may not be able to tolerate the more radical EPP. Disadvantages include an increased risk for recurrence of the disease because of inability to remove all cancerous tumor, and inability to use high dose adjuvant radiation because of potential damage to the underlying lung. Extrapleural pneumonectomy is a more radical procedure involving the removal of the lung, the pleura (lining of the lung), the pericardium surrounding the heart and part of the diaphragm. During surgery the pericardium and the diaphragm are reconstructed with a Gortex-like material. Patients may be eligible for this surgery only if they meet certain staging criteria and demonstrate adequate pulmonary and cardiac function to be able to tolerate the procedure.

http://www.mesotheliomainternational...atreatment.htm

However, you may want to read this:

http://www.survivingmesothelioma.com....asp?ID=001122

I have it in my head that it will be the thing that gets me, which is pretty stupid as it causes me to overlook other possible health risks. I have been asked if I would like to take part in a studies but my doctor advised against it because of the frequency of catscans. If anything happened to me here in the US I would go straight here:

	Quote:
	Dana-Farber's surgeons have pioneered combining extrapleural pneumonectomy with chemotherapy lavage. Extrapleural pneumonectomy, an extensive surgery that offers the best hope for many early-stage pleural mesothelioma patients, is combined with chemotherapy lavage. A heated wash of chemotherapy medication is used directly in the affected body cavity to kill any remaining cancer cells. This treatment has proven quite successful by lengthening survival time for pleural mesothelioma patients.

http://www.asbestos.com/cancer-cente...-institute.php

lilith · #30 21.08.2011, 18:08

Pather, you are very supporting... I hope your fil will be able to make sense of all possible different options that are offered to him.

Chemo is definitely not a walk in the park, and a lot less holistic than surgery... the very idea of sitting in a chair and have poisons discharged in one's veins for a day, that will make one sick - is just contrary to common sense and wish of survival. It takes a lot of trust and confidence to undergo it serenely; and if it is for a small life extension... how cruel.

My mom passed away a couple yrs ago of lung cancer. Sadly for her it was spreading by when it was found; and her overall condition would not allow a surgical solution. If that had been possible, she would be alive today.

All the best for you and your family.

NotAllThere · #31 28.10.2011, 10:04

I missed this thread first time round. I had a friend who was diagnosed with mesothelioma just after Christmas 2002. He died fourteen months later, age 64. Just shy of his pension age, so his widow didn't get a pension. No compensation either, as although the UK as a statutory compensation scheme for victims, the government exempted itself, and my friend's asbestos exposure was during his stint in the Merchant Navy - working for the government.

He was a good man, and I miss him. Mesothelioma is one of those conditions where a cure is "just around the corner". Just not quite there yet.

Markarina · #32 28.10.2011, 10:12

Another support site you might want to look at is dailystrength like the other site mentioned it's a site with people who have BTDT rather than medical professionals, it covers a wide range of things from cancer to dealing with a death, bullying all sorts of things

little_isabella · #33 28.10.2011, 10:20

My beautiful, otherwise healthy, young aunt died from this kind of cancer a few years ago. She went from a very active woman to death within a year.

Markarina · #34 30.10.2011, 22:24

	Quote:	Pather
	The problem is that my In-laws are very holistic people, wouldnt even take a Panado with 40degree fever. So I'm out numbered. But I will not advise him (until he asks), he has to get over this trauma, and come to terms with the implications of living with Cancer, which he hasnt, as yet. I have also encouraged him to seek a Psychologist who deals with Cancer patients. He replied : whatever for! I replied that he needs a perspective from someone who is not emotionally attached to him.

The other reason to talk to a psychologist or counselor is that they are there to be talked at you are not going to upset them, they are people who can say things to in the heat of the moment and not regret saying them as would if you were talking to a family member. Also they will give you strategies and ways to cope with what's going on in your life.

Not sure where your father in law is based, but the Lynda Jackson centre and the Mount Vernon cancer centre offer a free counselling service.

Panther · #35 31.10.2011, 11:41

Thanks for your advice, and websites. Its been 2 motnhs since the diagonsis, and I must report, that my FIL is doing pretty well. So far there has been no relaspe of the Lung infection or the water accumulation.
He has been for a few consultations and tests. Amazingly the Oncologist has advised him not to start any treatments as yet.
He will do another X-ray Tomography in December and then re evaluate.
He is still healthy, cycling up mountains ect. Psychologically, well, he has gotten over the shock, and the disappointment, I am amazed at his courage.
And inbetween he has been to a healer, yes I know, you can scoff, if you like. But everything plays a role, in such illnesses.

And we are enjoying our time with him. In the meanwhile, I have planned a large family Christmas, at our place, because we dont mind the over crowded, noisy Christmas dinners!

Markarina · #36 31.10.2011, 13:29

I'm in a similar situation, a lot of the time they play a watch and see game, basically until you start having problems, why make you ill by giving you chemo, as for some cancers the chemo may have limited benefit depending on the type of cancer and if it has a good blood supply, if the tumour doesn't have a good blood supply then chemo has limited benefits and you may well go through a rough time for little or no benefit.

In summary don't be too alarmed that they are not doing anything, as with everything there is balance to be had

#37 31.10.2011, 15:42

	Quote:	Markarina
	I'm in a similar situation, a lot of the time they play a watch and see game, basically until you start having problems, why make you ill by giving you chemo, as for some cancers the chemo may have limited benefit depending on the type of cancer and if it has a good blood supply, if the tumour doesn't have a good blood supply then chemo has limited benefits and you may well go through a rough time for little or no benefit. In summary don't be too alarmed that they are not doing anything, as with everything there is balance to be had

Great advice. Chemo sucks and it will make you sick. When it works, it's excellent. But it's not worth it if your tumor won't react to it. If your FIL feels good, then he should do as much as he can, and enjoy himself. As for visiting a healer, why not - the impact of positive actions, positive thoughts are not clearly understood, especially in cancer. I wouldn't discount Western medicine, but I'd also look at alternative therapies to complement it. Best advice I had when being treated for another type of cancer - listen to your body.

Anyway, hope he continues to do well, and hope you have a happy holiday!

e.