Mesothelioma

dawnsiek

My healthy 57 year old husband is now dying from Mesothelioma. In just three short months he has gone from being healthy and working to being bedridden and wasting away. This is such a horrible disease that should be. It is so rapid. It's all man made and in everything. Today it is still not banned in the US, it just has to have a label on it. Discussing!!!

stayingcalm

Mesothelioma
I'm sorry to hear about your husband, it is certainly a horrible disease, and one that should never have come about!
I worked for years for an auto parts store that had a machine shop in the back where they ground brake shoes, and I sometimes wonder if that contributed to my lung cancer. But, I think Mesothelioma is a separate cancer entirely? In any case, no one EVER said anything to us employees about the danger of exposure to asbestos!
The owner of the auto parts store died of lung cancer years ago (he was a non-stop smoker), and the family that ran the machine shop was part of a Mesothelioma class action suit. My boyfriend also worked at the parts store, and he also has a slow-growing cancer.
I think brake shoes no longer use asbestos, but there must be plenty of old construction still around that contains it.

I wish you and your husband all the luck in the world, dawnsiek.

Deb

Glenna M

My sympathies..
My heart goes out to you and your husband. It's still hard to comprehend that people are becoming ill and dying from the exposure to man made materials. We don't stop to think or test most products to assure their safety as we are in too much of a hurry for the new item to hit the market. Unfortunately, because of our greed and need for progress, this will continue to happen.

I am so sorry for what you and your husband are going through.

Glenna

augigi

Glenna M said:

My sympathies..
My heart goes out to you and your husband. It's still hard to comprehend that people are becoming ill and dying from the exposure to man made materials. We don't stop to think or test most products to assure their safety as we are in too much of a hurry for the new item to hit the market. Unfortunately, because of our greed and need for progress, this will continue to happen.

I am so sorry for what you and your husband are going through.

Glenna

I hope you pursue legal
I hope you pursue legal action if you know where he was exposed to asbestos. It may not help extend his life, but it really made me feel a little bit better that the buggers who poisoned my mother and will be taking her away from her family too young had to pay for it, at least monetarily.

Good luck. It truly is a nasty, awful cancer.

onemore

Hi There
I am just curious -
Hi There

I am just curious - which Mesothelioma did your husband have? Epithelioid or Sarcomatoid?

My Dad was just diagnosed with Epithelioid Mesothelioma and they want to remove the whole left lung, lining of the lung and part of the diaphram.

This is all new to me.

Regards

cookie_girl

onemore said:

Hi There
I am just curious -
Hi There

I am just curious - which Mesothelioma did your husband have? Epithelioid or Sarcomatoid?

My Dad was just diagnosed with Epithelioid Mesothelioma and they want to remove the whole left lung, lining of the lung and part of the diaphram.

This is all new to me.

Regards

I have Epithelioid
I have Epithelioid Meshothelioma pleura, and I had my right lung, lining and a few spots of diaphragm done in July 2009. It is a big surgery but it is worth it. I had chemo and radiation after and now I am healing. went through hell and back and my surgeon said with the treatments but I am still here and right now they cannot see any cancer

onemore

cookie_girl said:

I have Epithelioid
I have Epithelioid Meshothelioma pleura, and I had my right lung, lining and a few spots of diaphragm done in July 2009. It is a big surgery but it is worth it. I had chemo and radiation after and now I am healing. went through hell and back and my surgeon said with the treatments but I am still here and right now they cannot see any cancer

Thanks for getting back to
Thanks for getting back to me.

I am curious - my dad went to Sloane Kettering today and the Chief there recommends chemo and radiation 1st -to shrink cancer - then maybe surgery. This was his 2nd doctor - one doctor said to remove left lung, lining and part of the diaphram and Sloane Ketterin recommends chemo - radiation.

Are you in the NY area.

I think that he is going to follow what Sloane is recommending -

kimbee1218

How did you know
I am sorry about your husband. How did they diagnos the mesothelioma? My Dad was just diagnosed with Lung Cancer - SC or NSC is still somewhat of a question. He worked 40+years in the plumbing and heating industry and was exposed to alot of asbestos. In his CT is states that he has calcification - probably due to asbestos exposure. I asked the onocolgists today, if he had mesothelioma also and they said that was a whole different diagnosis, they are treating the lung cancer. My concern was that it would affect his treatment.

onemore

cookie_girl said:

I have Epithelioid
I have Epithelioid Meshothelioma pleura, and I had my right lung, lining and a few spots of diaphragm done in July 2009. It is a big surgery but it is worth it. I had chemo and radiation after and now I am healing. went through hell and back and my surgeon said with the treatments but I am still here and right now they cannot see any cancer

Question for Cookie-Girl
Hi Cookie Girl

I just needed to ask you a few questions.

My dad has decided to go with Sloane Kettering - they are going to start Chemo 1st, he has to have 4 rounds of chemo, once every three weeks. They want to shrink it and maybe try not to remove his lung, then surgery to remove the lining, then radiation. They dont think that they will remove the lung. He is going to be part of a clinical trial.

He was diagnosed with Epithelioid Mesothelioma Pleura-

I am just not sure this is the way to go - I am not a doctor but the 1st opinion from the 1st doctor was to remove the lung, lining and parts of the diaphram - I think that it would be better to take out the lung - which is what you did - did you go to Sloane Kettering - I know they are all for chemo 1st -

It sounds like you went through hell and back like you said but the outcome sounds more promising to me -

The doctors at Sloane said that there are only 1500 cases of this in the US.

Thanks

cookie_girl

onemore said:

Question for Cookie-Girl
Hi Cookie Girl

I just needed to ask you a few questions.

My dad has decided to go with Sloane Kettering - they are going to start Chemo 1st, he has to have 4 rounds of chemo, once every three weeks. They want to shrink it and maybe try not to remove his lung, then surgery to remove the lining, then radiation. They dont think that they will remove the lung. He is going to be part of a clinical trial.

He was diagnosed with Epithelioid Mesothelioma Pleura-

I am just not sure this is the way to go - I am not a doctor but the 1st opinion from the 1st doctor was to remove the lung, lining and parts of the diaphram - I think that it would be better to take out the lung - which is what you did - did you go to Sloane Kettering - I know they are all for chemo 1st -

It sounds like you went through hell and back like you said but the outcome sounds more promising to me -

The doctors at Sloane said that there are only 1500 cases of this in the US.

Thanks

I don't live in the states I
I don't live in the states I live in Calgary, Alberta Canada. My surgeon was Dr. S Grondin and he worked under Dr. Sugarbaker for a couple of years if I remember. Dr. Sugarbaker is the dr that created this type of surgery. It is one of those cancer's that is rare and are still trying to figure out which is the best way to treat this.

All that I can say is make sure you go to a doctor that knows about mesothelioma cancer and go from there.

We have 4 thoracic surgeon's in Calgary (Tom Baker/Foothills hospital) and 2 of them would not do anything as they don't know enough about it and one doctor was a 50/50 and he assisted the surgery with Dr Grondin. It was a very long surgery, my husband said it was about 12 hours. I still have pain but I am still healing. It is worth everything that I went through as my kids (which are adults) still has a mom. Hope this helps

onemore

cookie_girl said:

I don't live in the states I
I don't live in the states I live in Calgary, Alberta Canada. My surgeon was Dr. S Grondin and he worked under Dr. Sugarbaker for a couple of years if I remember. Dr. Sugarbaker is the dr that created this type of surgery. It is one of those cancer's that is rare and are still trying to figure out which is the best way to treat this.

All that I can say is make sure you go to a doctor that knows about mesothelioma cancer and go from there.

We have 4 thoracic surgeon's in Calgary (Tom Baker/Foothills hospital) and 2 of them would not do anything as they don't know enough about it and one doctor was a 50/50 and he assisted the surgery with Dr Grondin. It was a very long surgery, my husband said it was about 12 hours. I still have pain but I am still healing. It is worth everything that I went through as my kids (which are adults) still has a mom. Hope this helps

Thank you very much for
Thank you very much for replying. My dad has decided to go with Sloane Kettering. They are going to treat with Chemo 1st. Then surgery. Then radiation. He is to start chemo next week - The doctor that he is seeing is the Chief at Sloane Kettering and is top of the top. I am sure he is in good hands. Thanks again.

augigi

kimbee1218 said:

How did you know
I am sorry about your husband. How did they diagnos the mesothelioma? My Dad was just diagnosed with Lung Cancer - SC or NSC is still somewhat of a question. He worked 40+years in the plumbing and heating industry and was exposed to alot of asbestos. In his CT is states that he has calcification - probably due to asbestos exposure. I asked the onocolgists today, if he had mesothelioma also and they said that was a whole different diagnosis, they are treating the lung cancer. My concern was that it would affect his treatment.

Meso usually shows up as
Meso usually shows up as acute shortness of breath and a pleural effusion (fluid in lung lining). This effusion is drained and the cells looked at for diagnosis of meso. It is entirely separate diagnosis to SC or NSC lung cancer.

cookie_girl

kimbee1218 said:

How did you know
I am sorry about your husband. How did they diagnos the mesothelioma? My Dad was just diagnosed with Lung Cancer - SC or NSC is still somewhat of a question. He worked 40+years in the plumbing and heating industry and was exposed to alot of asbestos. In his CT is states that he has calcification - probably due to asbestos exposure. I asked the onocolgists today, if he had mesothelioma also and they said that was a whole different diagnosis, they are treating the lung cancer. My concern was that it would affect his treatment.

The way they found mine was

The way they found mine was that I kept coughing and could not control it with my asthma medication as well as a sharp pain on the side that was like a lightning bolts and was also getting tired easily so my doctor sent me to a pulmonary specialist to see why my asthma was doing this and she found something weird on my xray then she sent me to a ct scan which definitely found something wrong then she sent my to my thoracic surgeon and after that went through a lot of test and biopsy to confirm what was found.

onemore

cookie_girl said:

I don't live in the states I
I don't live in the states I live in Calgary, Alberta Canada. My surgeon was Dr. S Grondin and he worked under Dr. Sugarbaker for a couple of years if I remember. Dr. Sugarbaker is the dr that created this type of surgery. It is one of those cancer's that is rare and are still trying to figure out which is the best way to treat this.

All that I can say is make sure you go to a doctor that knows about mesothelioma cancer and go from there.

We have 4 thoracic surgeon's in Calgary (Tom Baker/Foothills hospital) and 2 of them would not do anything as they don't know enough about it and one doctor was a 50/50 and he assisted the surgery with Dr Grondin. It was a very long surgery, my husband said it was about 12 hours. I still have pain but I am still healing. It is worth everything that I went through as my kids (which are adults) still has a mom. Hope this helps

Update
Hi Cookie Girl

How are you?

I have spoken to you before and just wanted to give you an update as I am not sure where else to turn.

My dad was diagnosed with Epithelioid Mesothelioma about 3 months ago.

He had 2 treatments of chemo already (Cisplatin & Pemetrexed)

He had a Kat scan or MRI (not sure) 2 days before his 3rd treatment and they advised him that the chemo was not working and that the cancer has spread more.

They scheduled him for surgery this Tuesday.

They are most likely going to remove the whole lung, lining and parts of the diaphram. They also said that she will look at the lining of the heart.

How much pain will he be in? How long did it take you to get back on your feet? We just don't know really what to expect.

We are all scared!!

Just wanted to get some advise from you!

Thanking you in advance.

Renee

cookie_girl

onemore said:

Update
Hi Cookie Girl

How are you?

I have spoken to you before and just wanted to give you an update as I am not sure where else to turn.

My dad was diagnosed with Epithelioid Mesothelioma about 3 months ago.

He had 2 treatments of chemo already (Cisplatin & Pemetrexed)

He had a Kat scan or MRI (not sure) 2 days before his 3rd treatment and they advised him that the chemo was not working and that the cancer has spread more.

They scheduled him for surgery this Tuesday.

They are most likely going to remove the whole lung, lining and parts of the diaphram. They also said that she will look at the lining of the heart.

How much pain will he be in? How long did it take you to get back on your feet? We just don't know really what to expect.

We are all scared!!

Just wanted to get some advise from you!

Thanking you in advance.

Renee

Hi onemore
I am doing pretty good, slowly gaining my strength, but not back to normal yet.

He will be fine, just remember that, and it will help.

It sounds like he is getting the same surgery as I had. They did remove my right lung, lining, i think it was about 3 or 4 small spots of my diaphram. They thought they had to do some on the heart lining but didn't need too.

Right before surgery they gave me an epidural so when I wake up i can control the pain medication on my own as well as other pain killers. When I woke up I was heavily drugged to keep the pain down and it isn't too bad until they took the epidural out a week later. I started to get out of bed about 3 days after surgery but could not go too far as i would get tired extremely easily but it got better as I walked a little more often as the days went by. Once they took my epidural off I felt more pain but we got it under control. Tell your dad not to wait until the pain is getting worse when he starts to feel a little bit of pain ask for meds as it is hard to get the pain under control when you don't get it on time. I went home a couple weeks later. Be very careful the no one gets in contact with him that may have a slight cold as he will get it. The coughing will take a while to go away, as I still have it but getting better.

My healing of my surgery has taken a long time but that is due to having chemo a month and a half later and then radiation after. My surgeon said that when you get surgery and then the treatments start, the surgery healing really slows down and starts again once all treatments all done. I still have a couple of month of healing and in a couple of weeks i see my surgeon again to see how i am doing and updates. As my surgeon said before I started everything "you will be going through hell for the next year" and boy was he right.

Look at it this way, they only do this surgery if they know that he will make it through which is a good thing.

My kids were very scared too, hang in there!

Just be there for him

onemore

cookie_girl said:

Hi onemore
I am doing pretty good, slowly gaining my strength, but not back to normal yet.

He will be fine, just remember that, and it will help.

It sounds like he is getting the same surgery as I had. They did remove my right lung, lining, i think it was about 3 or 4 small spots of my diaphram. They thought they had to do some on the heart lining but didn't need too.

Right before surgery they gave me an epidural so when I wake up i can control the pain medication on my own as well as other pain killers. When I woke up I was heavily drugged to keep the pain down and it isn't too bad until they took the epidural out a week later. I started to get out of bed about 3 days after surgery but could not go too far as i would get tired extremely easily but it got better as I walked a little more often as the days went by. Once they took my epidural off I felt more pain but we got it under control. Tell your dad not to wait until the pain is getting worse when he starts to feel a little bit of pain ask for meds as it is hard to get the pain under control when you don't get it on time. I went home a couple weeks later. Be very careful the no one gets in contact with him that may have a slight cold as he will get it. The coughing will take a while to go away, as I still have it but getting better.

My healing of my surgery has taken a long time but that is due to having chemo a month and a half later and then radiation after. My surgeon said that when you get surgery and then the treatments start, the surgery healing really slows down and starts again once all treatments all done. I still have a couple of month of healing and in a couple of weeks i see my surgeon again to see how i am doing and updates. As my surgeon said before I started everything "you will be going through hell for the next year" and boy was he right.

Look at it this way, they only do this surgery if they know that he will make it through which is a good thing.

My kids were very scared too, hang in there!

Just be there for him

Hi Cookie
Thank you for
Hi Cookie

Thank you for getting back to me.

Things did not go so well.

We got some discouraging news. The surgeon proceeded with surgery but the tumor was to large and complicated. The cancer is plastered to his ribs and intertwined through the ribs and wrapped around his lung.

The surgeon said that the surgery would not be successful. She told us that she was very disappointed. She advised us that she wants him to have radiation therapy in hopes that it slows down the growth. We are all devastated.

He is still very strong. He will be coming home from the hospital tomorrow (Satuday).

I know we can't go back in time - but I wish he would have went with the 1st doctor that wanted to take a differnt approach. Surgery, radiaton then chemo - like you did.

We dont understand how it grew so much in 3 months and now it is too late -

Thank you for getting back to me.

Renee

cookie_girl

onemore said:

Hi Cookie
Thank you for
Hi Cookie

Thank you for getting back to me.

Things did not go so well.

We got some discouraging news. The surgeon proceeded with surgery but the tumor was to large and complicated. The cancer is plastered to his ribs and intertwined through the ribs and wrapped around his lung.

The surgeon said that the surgery would not be successful. She told us that she was very disappointed. She advised us that she wants him to have radiation therapy in hopes that it slows down the growth. We are all devastated.

He is still very strong. He will be coming home from the hospital tomorrow (Satuday).

I know we can't go back in time - but I wish he would have went with the 1st doctor that wanted to take a differnt approach. Surgery, radiaton then chemo - like you did.

We dont understand how it grew so much in 3 months and now it is too late -

Thank you for getting back to me.

Renee

I am so sorry to hear
I am so sorry to hear that.

For some reason this cancer spreads a lot faster then any other, that is why my surgeon didn't want to wait or take chances for the surgery as it spreads too fast. As for radiation that is what I was told it slows it down and helps the pain go down a bit.

I know you are now thinking what if we would have done this instead but don't. Take the time that you have and make the most of it, that is the important thing.

I will be thinking of you and your dad. I know you will take good care of your dad but don't forget to take care of yourself, you don't want to get drained and get sick.

onemore

cookie_girl said:

I am so sorry to hear
I am so sorry to hear that.

For some reason this cancer spreads a lot faster then any other, that is why my surgeon didn't want to wait or take chances for the surgery as it spreads too fast. As for radiation that is what I was told it slows it down and helps the pain go down a bit.

I know you are now thinking what if we would have done this instead but don't. Take the time that you have and make the most of it, that is the important thing.

I will be thinking of you and your dad. I know you will take good care of your dad but don't forget to take care of yourself, you don't want to get drained and get sick.

Thank you for getting back
Thank you for getting back to me so quickly!

As I sit hear and think, I feel like this is all a dream!

The weird thing is that he looks and feels great!

Thank you again.

I will keep you updated and will pray for you as well!

Renee

onemore

onemore said:

Thank you for getting back
Thank you for getting back to me so quickly!

As I sit hear and think, I feel like this is all a dream!

The weird thing is that he looks and feels great!

Thank you again.

I will keep you updated and will pray for you as well!

Renee

Update on Dad
Hi Cookie Girl

Just wanted to give an update on Dad.

He went in for surgery 2 weeks ago. Surgeon said that once she went in the cancer was cemented to his ribs and that it was inoperable. She was very disappointed as well as all of us.

Surgeon wants to take a different approach which is to start radiation to slow down the growth.

cookie_girl

onemore said:

Update on Dad
Hi Cookie Girl

Just wanted to give an update on Dad.

He went in for surgery 2 weeks ago. Surgeon said that once she went in the cancer was cemented to his ribs and that it was inoperable. She was very disappointed as well as all of us.

Surgeon wants to take a different approach which is to start radiation to slow down the growth.

Hi Onemore
That sounds
Hi Onemore

That sounds really good. Think positive that it will slow the growth down. He won't feel tired right away with the radiation but it all depends on how his body will take it. Eventually he will get tired all of a sudden and tell him to keep fighting, as it is really worth it.

I have my check up on Tuesday with my surgeon and I am thinking positive that I am and will still be in remission. As of this Tuesday, it will be 4 months that I have been cleared.

Take care and keep faith
Cookie girl

onemore

cookie_girl said:

The way they found mine was

The way they found mine was that I kept coughing and could not control it with my asthma medication as well as a sharp pain on the side that was like a lightning bolts and was also getting tired easily so my doctor sent me to a pulmonary specialist to see why my asthma was doing this and she found something weird on my xray then she sent me to a ct scan which definitely found something wrong then she sent my to my thoracic surgeon and after that went through a lot of test and biopsy to confirm what was found.

Hi Cookie Girl
Just wanted
Hi Cookie Girl

Just wanted to give you an update.

Tomorrow Dad starts with his 1st Radiation treatment. They are giving him the highest level of radiation a person can get. He has to have 25 treatments. They said that they will evaluate him everyday to see how he is doing. They said if it gets to be to much for him they would stop but really would like him to have all treatments. One day at a time! He is still very strong!

Please keep him in your prayers.

How are you feeling? I pray for you as well and always remember your kind words of encouragement to me at this difficult time.

Thank You again for listening.