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Mesothelioma

dawnsiek
Posts: 2
Joined: May 2010

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's picture
stayingcalm
Posts: 656
Joined: Feb 2007

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's picture
Glenna M
Posts: 1579
Joined: May 2009

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
Posts: 89
Joined: Dec 2009

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
Posts: 57
Joined: Jun 2010

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
Posts: 24
Joined: Jun 2010

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
Posts: 57
Joined: Jun 2010

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 -

onemore
Posts: 57
Joined: Jun 2010

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
Posts: 24
Joined: Jun 2010

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
Posts: 57
Joined: Jun 2010

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.

onemore
Posts: 57
Joined: Jun 2010

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
Posts: 24
Joined: Jun 2010

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
Posts: 57
Joined: Jun 2010

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
Posts: 24
Joined: Jun 2010

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
Posts: 57
Joined: Jun 2010

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
Posts: 57
Joined: Jun 2010

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
Posts: 24
Joined: Jun 2010

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

Forevermore
Posts: 11
Joined: Oct 2010

My brother has Epithelioid Mesothelioma and is scheduled for surgery on the 4th of Nov.
They are removing his right lung the lining of lung, an area around the heart and part of the diaphram. They will replace the diaphram with synthetics.
If they are suggesting surgery for your dad they must think he has a good chance. Only 15% of patients that have Meso are able to have the surgery that will prolong their life.
If not, I suppose you know the odds on the other treatments.
Is your dad fairly young, healthy, active and without other health problems ?
If not, I have seen the odds on the surgery fatalities with patients that aren't good candidates.....Where is you dad being treated ? How long has he had symtoms ?
Get back to me....

onemore
Posts: 57
Joined: Jun 2010

Hi Forevermore

Was your post for me (onemore)?

I wasn't sure.

Regards,

Onemore

Forevermore
Posts: 11
Joined: Oct 2010

Yes,the post of 10/25 was for you, I was just wondering how similar your dad's case is to my brothers....

Was your dad "talced" it can cement to your ribs too. we are afraid that they will get in there and only get some of the cancer.
Thanks

onemore
Posts: 57
Joined: Jun 2010

Hi Forevermore

Yes my dad's cancer (tumor) is plastered to his ribs and intertwined. Surgeon did not expect it to be as bad as it was. She told us she was disappointed. My family is devastated.

I saddens me so much that they where not able to remove his lung. All he wants is his health back!

He did finish all 25 radiation treatments. He is not feeling well at all right now and we are hoping that it is the side effects from the treatments. He is coughing alot, freezing, has a lot nausea feeling in his stomach, his esophagus is hurting and extremely tired.

It is so sad to see him like this.

How old is your brother? My dad is 65. He was exposed to asbestos through his early years in the navy and his line of work.

The end of November my dad will go for a Kat scan to see if the radiation has slowed the growth down. At this point he and all of us need some good news.

I will pray for your brother that all goes well with the surgery and please update me.

Regards,

Onemore

kimbee1218
Posts: 29
Joined: Jun 2010

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.

augigi
Posts: 89
Joined: Dec 2009

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
Posts: 24
Joined: Jun 2010

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
Posts: 57
Joined: Jun 2010

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.

cookie_girl
Posts: 24
Joined: Jun 2010

Hi Onemore

How are you doing? how is your dad doing with radiation, and the length of time it takes?

I found it a little frustrating that everyone going in for radiation was out within about 10 to 15 minutes and mine was about 30 minutes long for each but got used to it. At first I was ok but started to get tired about a week later. I was suppose to have 25 treatments as well but missed my last two treatments.

Tell him the cream that they are going to give him or ask for it to use it this way he won't get too burned. Also, when he starts to have trouble swallowing to tell his nurse. Any side effects he gets to inform his nurse right away as these nurses are wonderful. They really take care of you, it is amazing, I know they were amazing for me.

I am doing pretty good, just have to be careful of any colds around me as it just knocks me right out. Still can't run and do too much but I am getting better.

Remember to take care of yourself as well as being there for him that will make him feel good.

onemore
Posts: 57
Joined: Jun 2010

Hi Cookie Girl

It was so nice to hear from you!

Dad is not doing to great. Today was his 6th radiation treatment. He is having alot of trouble breathing and a sharp pain. He gets winded very fast. He can not do anything that he used to be able to do. We don't know if this is because of the treatments or the cancer itself.

He had his 1st check up with the radiation doctor yesterday to see how he was feeling. They told him to take it one day at time and that the kind of cancer that he has is deadly. The type he has is Peritoneal Mesothelioma. I think when the doctor performed surgery she sampled some of the tissue and tested that. He did have a pet and kat scan about 2 weeks ago and it did not travel anywhere else but is in a large area of the left side of the lung.

The treatment takes about 25 minutes.

They also gave him a pneumonia shot before he started radiation treatments.

It is so nice to speak with you as you know what we are going through at this difficult time.

So glad to hear that you are doing well!

cookie_girl
Posts: 24
Joined: Jun 2010

hi Onemore

They are correct, he has to take one day at a time and the hardest part is thinking positive when the treatments gets you down but he must think positive.

I found that the radiation treatment did more to me then the chemo, it got me really tired, winded, and my esophagus shrinks, so had to be really careful with swallowing anything. I have learned to eat my food differently but have adjusted to it. I am hoping that he will be able to get as many treatments as possible to slow it down. It is a very deadly cancer as my surgeon also mentioned and not many people knows about this cancer.

That is really good that they gave him the pneumonia shot as it will help, what about B12 shots? I was getting those shots every 9 weeks and I could tell it helped me a little bit.

Tell him to rest when his mind or body tells him as he needs it. I tried to stay awake to visit but ended up getting into trouble and ended up in the hospital a few times. If his body or mind needs rest take it. Visitors will understand

Try to keep up the positive thinking and don't forget to smile

Take care

onemore
Posts: 57
Joined: Jun 2010

Hi Cookie

I will ask him about the B-12. If I recall he had one about 2-3 months ago.

We are all trying to stay strong and positive.

Thanks again for communicating with me as it really helps me mentally.

Talk to you soon.

cookie_girl
Posts: 24
Joined: Jun 2010

Anytime, I will check every couple of days

Take care

onemore
Posts: 57
Joined: Jun 2010

Hi Cookie

Thank you so much! You are very sweet!

Today I took my dad for his treatment. He is having a very hard time breathing - very winded. It is so painful to see him this way. Do you think that it is the radiation doing this to him? He is coughing alot and it is painful as well. He is taking tylenol for the pain. He is eating but it is alittle less. One day at a time. It is so hard to see him this way.

I do not know if I mentioned this before but he did have a B-12 shot before he started chemo.

Talk to you soon.

cookie_girl
Posts: 24
Joined: Jun 2010

Hi Onemore

How is your dad doing and how about you? I have caught a cold so I am a little bit under the weather and get very winded, and tired easily but getting better. Thinking positive helps!

It is probably due to the radiation that he may be winded as well as the coughing. When you cough a lot the side of the chest tends to get really sore, so my doc gave me tylenol 3 to take and I was actually shocked that it did help the pain but I had to learn to take it when the pain was not to the point that it would take forever to work. After over a year I am still taking tylenol 3's when I need it.

As well my radiation oncologist warned me that the radiation might make me very winded and may end up being on oxygen for a while or forever, depending on how the treatment would react to my body. She was very open on giving me all the information couple of weeks before I started my treatment. she was so good and honest with all the information, there was a lot of reaction that could happen, and boy I had most of them.

Make sure he tells his nurse and doc any side effect that he may start having as they will give him meds to help out. I know he is probably sick of meds but it does help. I had a lot of medication to take as my stomach is very sensitive and i get nausea and vomit very easily, I sure don't miss hugging the toilet or pail anymore, LOL

Take care

cookie_girl
Posts: 24
Joined: Jun 2010

Have not heard from you for a while and a little worried on how your dad is doing. I hope he is doing well with radiation and hoping that you are handling everything well, let me know how you are both doing?

onemore
Posts: 57
Joined: Jun 2010

Hi Cookie

My dad is doing ok. He is very tired and winded. He has 7 more radiation treatments left. He did loose some weight. He is eating but in smaller portions. I am hanging in there as well. I believe about 1 or 2 months after radiation is over he will go for a kat scan to see how things look. We are all hoping and praying that the radiation is keeping it at bay.

How are you feeling?

cookie_girl
Posts: 24
Joined: Jun 2010

It is good to hear from you. That is great that your dad is doing pretty good, only 7 more treatments and its done. He won't miss having to go to his treatments everyday that is for sure. I am hoping that it gets better for both of you. I will keep you both in my prayers and thoughts.

I caught a cold which exhaust me, they put me on antibiotics just in case. Other then that I think I am feeling better.

Take care

onemore
Posts: 57
Joined: Jun 2010

Hi Cookie

Thank you so much!! We need all the prayers we can get.

One thing I did not mention is that his stomach is hurting him alot. He is taking all of his meds. Guess it is the radiation burning him inside. On Monday he will see the doctor before his treatment and I will make sure we mention it to him.

Did this happen to you?

Onemore

cookie_girl
Posts: 24
Joined: Jun 2010

If I remember I don't think I had major stomach pains, but do remember that my stomach did not feel good most of the time due to being very nauseated due to the radiation and the medication that was trying to help my nausea. I was so dehydrated and the nausea was so bad that I was admitted in hospital a few times.

Even after my radiation was done about 2 or 3 weeks after, was extremely dehydrated and on top of it because I was on so many nausea pills specifically this one type which I can't remember what it was called, the side effect would make me have this feeling of not being able to stay still at all. One minute I would be sitting and the next minute had to get up and that would go on all day. It was unbearable, could barely sleep or do anything. Called my oncologist and she admitted me to hospital for almost a month to get all the nausea medication out of my system as I was on them from September to February, especially this one type of medication. It worked and have not had to side effect again.

I hope everything will be ok, good luck today!

onemore
Posts: 57
Joined: Jun 2010

Hi Cookie

Thanks!

Today we met with the oncologist and he said that everything that he is feeling is normal - all side effects from the radiation. He said that if his fever goes over 100.5 they want to know. When we where there today it was 99.

He was not taking the nausea med. on a regular basis. I believe it is compazine. Was this the med. you where on? He is going to start taking it now. He has 6 more treatments left. He is exhausted and can't wait for his treatments to end.

I will tell him to keep drinking so he does not get dehydrated.

I don't know if this is to personal but where do you think you where exposed to the asbestos?

My dad was exposed in the war and worked all his life with brakes, cluthes, etc.

Talk to you soon.

Regards

One

cookie_girl
Posts: 24
Joined: Jun 2010

That is so good to hear that it is only the radiation, nothing else. That is great news. I can't remember what meds they were it wasn't compazine, but I was taking 3 or 4 different ones as my stomach gets upset very easily. Only 6 treatments left and all done, he will be so relieved when it is done.

We don't know where I was exposed to it, as I am now 48 years old and usually takes 20 to 40 years for it to appear in the body. The only thing we can think of is where I grew up when I was little, maybe the schools or just an area, don't know at all.

Take it easy and only 6 more to go

onemore
Posts: 57
Joined: Jun 2010

Hi Cookie

4 more to go!!!

One

cookie_girl
Posts: 24
Joined: Jun 2010

I was wondering how is your dad doing, now that he is done with radiation

onemore
Posts: 57
Joined: Jun 2010

Hi Cookiegirl

My dad is doing ok. He is having trouble breathing. His appetite is getting alittle better and he is alittle less tired. It has been about 3 weeks since his last treatment. We see the oncologist on Nov. 22. Then on Nov. 29 he will have a kat scan to see if radiaton slowed down the growth. December 1st we will meet again with dr to discuss the results.

At this point we all need some good news.

I will update you after December 1st visit.

Thanks for checking in - it really means alot to me.

Onemore

cookie_girl
Posts: 24
Joined: Jun 2010

I will keep your family in my prayers for good news

Yulitzy
Posts: 2
Joined: Nov 2012

My father was diagnosed with pleural mesothelioma had his right lung removed and now hopefully surgery and chemo... did you get both or just radation?

 

Thanks....

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