CSN Login
Members Online: 17

Mesothelioma

Em
Posts: 36
Joined: Jul 2009

Why are they not more comments on this cancer? It is a horrific cancer, yet few write about it. No cancer is good, but mesothelioma is really aggresive, we need more support and comments on this topic. Merlin Olsen just died of mesothelioma last week.

Emily

PJ45
Posts: 1
Joined: Oct 2010

Hi Emily,

I'm very sorry for your loss. Your husband sounded like a true fighter!

My father was diagnosed in July of this year, however, the doctor feels he's probably had it for over a year. He is very week, has lost a lot of weight, from 180lbs to 112lbs this week. Do you mind if I ask you some personal questions? But if it's too difficult I truly understand. Did your husband cough up thick mucus? I need to know what to expect in the next few weeks. My mother passed away 17yrs ago from renal cancer, we knew what to expect. My sister died last August of Melanoma, which metastasized to her bone & brain, we knew what to expect! I have no idea what my father will go through before he passes! Any information, if it's not too difficult to share would be so helpful. Again, I'm so sorry about your loss.

God Bless you & you will be in my prayers.

PJ45

P.S.- I live in Michigan, currently in Big Rapids, however, I grew up in the Detroit area. What part are you from?

Em
Posts: 36
Joined: Jul 2009

I'm sorry for what you have gone through and continue to experience. Jim did not really cough up mucus, some at times, but not a lot. He had more discomfort from where the tumors were growing. I highly recommend hospice as they know what medications work well and are there for your assistance. I know morphine does help a person to relax. Jim had the pain medication I believe I mentioned above, and Ativan for sleep, then morphine. He had oxygen and he did die peacefully at home. If there is anything else I can do or questions to help you, please do not hesitate to ask. I lived in the Tecumseh, Michigan area and he was from Utica Michigan.

God Bless you,
Em

Em
Posts: 36
Joined: Jul 2009

I just wanted to add to the message I sent you, to please feel free to contact me at my email address anytime you might have concerns or other questions too, I would be most happy to assist you. emilymcauliffe@comcast.net.

augigi
Posts: 89
Joined: Dec 2009

PJ45, sorry about your dad.

I can only tell you what happened in the end with my mum - she get a urinary tract infection and became somewhat confused, wouldn't take tablets etc. We ended up sending her to the hospice unit, which was hard for me - I took care of her, and I wanted to keep her at home, but I couldn't do it. She became unconscious a day later, and we put her on a morphine infusion to keep her comfortable. She did get quite a "rattly" chest with secretions, so they gave her medications to help dry that up periodically. She was like this for 2.5 days before passing away in her sleep.

The week before she died, we were at the bowling alley with her grandkids, it's amazing how fast and suddenly it goes at the end.

Em
Posts: 36
Joined: Jul 2009

So happy to see you back on the board Jen, I have been wondering how you are doing. Time does go by so quickly it seems. Also glad to see you posted good information for the other warriors out there. I hope work and classes are also going well for you. Take care.

augigi
Posts: 89
Joined: Dec 2009

Hey Em, I just wanted to drop by and say that I hope you had a good holiday. It was hard for me being so far away from everyone, but I was able to ship gift boxes off to my nieces and nephews in Australia and do video calls on their Xmas day so I could be part of it. One of my lovely coworkers invited me over to her family dinner, so that was nice. I did put up decorations and a Christmas tree for a bit of holiday cheer.. but I miss Mum a lot.

I am sure you missed Jim badly with the holiday. I was thinking of you, so holiday hugs from Pittsburgh! Thanks for all your support this year - it helped and meant a lot.

Em
Posts: 36
Joined: Jul 2009

Hi Jen!

I am so sorry I missed your post, I was looking for it and couldn't find. It is just so good to hear from you (only caregivers can understand and have a special bond). And I am glad you did pretty good over the holidays. My good neighbors helped me a lot, I had a hard time on New Years though because I started reading cards and letters.

I didn't know you were in Pittsburg, that is not so far from me here in Carlisle, Pa.
Well I don't have much to write about, just that I am very happy to hear from you, it means a lot to me. I miss Jim something terribly, as I am sure you do your mum. Take good care of yourself Jen and please let me know how you are doing too, are you still taking classes?

Blessings,
Em

Forevermore
Posts: 11
Joined: Oct 2010

Cookie_girl
I am so glad to hear you are doing well. I've learned allot about this cancer because my brother, who has the pleura mesothelioma too. He is scheduled for surgery on the 5th of Nov. He is so brave eventho I know he has to be scared to death. I know you understand because you had to face the surgery too. We both know getting through the surgery is half the battle. He is 60 years old, very fit, very active and was very healthy. He is a good candidate for the surgery and I am glad he can have it. He wants to beat the odds too.
I heard him talking to the doctor on the phone, he wanted to know if there were any of his patients that might be willing to talk to him about their surgeries. (So far none have).
I decided to get on the net and see what I could find out. I found you and am wondering
if you would be willing to talk to someone about your operation.
Best wishes to you and your family
Kathy

cookie_girl
Posts: 24
Joined: Jun 2010

What would you like to know? I am open to any questions that you or your brother may have. If it will help him make feel comfortable please don't hesitate to ask, this way he can go in thinking positive. The big thing with this surgery is that you must think positive. I will try to check this site every night

Take care

Forevermore
Posts: 11
Joined: Oct 2010

That's great, I will talk to him and get back to you.
Bless you..........

Forevermore
Posts: 11
Joined: Oct 2010

Hi Em,
In all my life I have only known one person with Meso, my brother. It is just so rare.
You may never know another person with it either. It would be nice to have a health care professional to chat with but there are so few doctors etc. that even deal with this cancer.
My brother is doing everything he can to stay alive and beat this thing. He is lucky to be a candidate for the surgery and he will have it next week.
I am curious to know if there are other EPP patients that have survived the surgery. Maybe they are willing to share their experience........
FMore

onemore
Posts: 57
Joined: Jun 2010

Hi Forevermore

Just checking in to see how your brother is doing? How old is he? My dad is 65.

My dad has finished his radiation treatments on Tuesday.

He was a candidate for surgery but the cancer was plastered to his ribs and intertwined.

I am praying for your brother.

Please keep me updated.

Regards,

Onemore

onemore
Posts: 57
Joined: Jun 2010

Hi

Anyone out there know about the clinical trial with the drug Everolimus?

My dad has Malignant Pleural Mesothelioma and after 2 rounds of chemo which did not work, surgery but was inoperable, then 25 rounds of radiation which showed there is still more growth but at a slower pace.

They want him to go Phase 2 now and try a different type of chemo. This is in a pill form.

Any information with mesothelioma patients would be helpful.

Onemore

cookie_girl
Posts: 24
Joined: Jun 2010

That is good to hear that it is going in a slower pace. I sure hope someone out there has the information that you require to help you ahead!

Take care and will keep you in my prayers

onemore
Posts: 57
Joined: Jun 2010

Thank you cookiegirl!

sadida886
Posts: 2
Joined: Jan 2011

Hi all i really understand how you all feel and what you are going through. In November 2006 my father was diagnosed with Mesothelioma. He had been feeling a little unwell before his diagnosis and was getting short of breath and loosing weight and also had this cough. Dr sent him for a chest X-ray and they found a shaddow on his lung. After many test they diagnosed him with Mesothelioma. My father went straight on to chemo. He became very weak and lost alot of weight. I moved my father in with me and my husband so i could take care of him. He became bedbound and on oxygen 24/7 in February 2007 he sadly lost his fight against this awfull disease. It was so heart wrenching seeing this fit man of 62 running round doing odd jobs for everyone to suddenly seeing them so helpless and frail. He had the pleural lining of the lung and also a plerual tumor on his Aorta. To think working for a telecomunication company installing phone lines having to climb over asbestos lagged pipes 40 years ago causes all this heart ache. As soon as i knew what my father had i tried reading up online to see what was going to happen and see stage to stage but i learnt that everyone is so different and i think rather than focus on a prognosis just enjoy every moment you have left with a loved one and cherish every moment you have for they are precious xx

Love and hugs to all that have this or know anyone with this my heart is with you xx
Sadida xx

onemore
Posts: 57
Joined: Jun 2010

Hi Sadida

Thank you for posting.

My dad is in good spirits.

He is doing well at the moment.

Next week he will go for another CT scan and then oncologist will determine if he is a candidate for the pill form of chemo.

Regards,

Onemore

sadida886
Posts: 2
Joined: Jan 2011

I am so pleased to hear that your father is doing good at the moment. I so hope he can be a candidate for the chemo pill my fingers are crossed for you.

Sadida xx

Pett
Posts: 3
Joined: Jan 2012

It has been a long time since anyone has posted on this thread, and maybe it is sleeping now.

But I read it from start to finish this morning. Em and Jen, if you are still checking in here, can I just say that your stories are so beautiful and the support you gave each other through your respective losses is very moving.

My brother was diagnosed with pleural mesothelioma in December 2011, so our journey has just begun. He has just had his second lot of chemo. He has managed to gain some weight, which is encouraging and will have a scan just before his third lot of chemo. He is still looking at options in terms of further treatment - radiation maybe, or possibly surgery, and clinical trials. He is in his 40s with a young family. It breaks my heart to think of losing him.

I am tired of looking at statistics (which are all so bleak)and, on the flipside, the miracle stories about people who survive with no treatment give me no comfort. They are anomalies, at best, and do not give me any reason to hope. It is good to hear real stories, even if they are sad ones.

Hope for the best. Prepare for the worst.

I have been hunting around for some kind of an online support/chat group for meso and this is the best one I've found. If anyone knows of another one, or a more recently active one, can you point me towards it?

Is there anyone out there?

onemore
Posts: 57
Joined: Jun 2010

Dear Pett,

I am so sorry your family as entered this journey. Your brother is so young. Take one day at a time. My dad was diagnosed in May 2009 with Mesothelioma. He was 66 years old. He passed away on December 4, 2011.

If you would like I can share our story with you..

Let me know...

Onemore

Pett
Posts: 3
Joined: Jan 2012

Hi Onemore,

Thanks for replying. I have read some of your posts along the way I think. Yes, it would be good to know some more about your Dad's journey. How was he when he was first diagnosed? Was the cancer very far spread?

My brother has a tumour in his lung as well as two in the pleura and two around his heart. It's also in his lymph nodes. So I guess that's pretty advanced. We've been told the worst case is 6 months, a year would be lucky, longer would be incredibly lucky, and 5 would take a miracle. When you read the stats out there that seems to be par for the course. What kind of prognosis did they give your dad? And, more importantly, how did he go with the early stage of treatment? Did he seem to get any better?

My brother is actually managing to gain some weight at the moment which the Docs are really pleased about. In fact, it's the first time the docs have been vaguely cheerful about anything. It's like rain on parched soil to have the doctors speak with some degree of hope.

Apart from his wife, who is wonderful and so devastated to be facing this, I am their next main support person. It is great to be able to help with things, and be there whenever they want to talk, or need something.

It's so hard to accept that this is our life now. But our only choice now is to want this fight, so that's what we're going to do.

Pet

onemore
Posts: 57
Joined: Jun 2010

Dear Pett,

I am so sorry it took me so long to get back to you.

My dad was diagnosed in May 2010. When he was diagnosed the tumor was only on one side of the pleura. The news was devestating to all of us..

He went for a second opinion. The doctor he went to is a well known doctor in New York City. This doctor is the chief of Thoracic surgery. She has over 25 years of experience with mesothelioma. She took a look at all his records from the previous doctor. She decided that the first course of treatment would be to start chemo to try and shrink the tumor. He started chemo and had 2 rounds of it. Then she sent him for a scan to see if the tumor was shrinking. The tumor markers where the same. The next step was to stop chemo and prepare for surgery. Her goal was to remove the lung and part of the diaphram. During surgery she discovered that the tumor was inoperable. She told us that the tumor was intertwined into his ribs and that there was no way to remove the lung. We asked how much time he had and she said one year to a year and a half. She told us that she would like him to recover and then start radiation therapy. He proceeded with the radiation therapy about 6 weeks after surgery. He did very well with the radiation. We believe that the radiation therapy is really what kept the tumor at bay for as long as it did. He also tried a chemo pill but decided to stop that. My dad was on oxygen as needed in the beginning. He also had a drain in the pleura area because he was filling up with fluid. About one month before he passed he was filling up with fluid in his stomach. He had a drain there to relieve the fluid build up.

I have to say my dad put up a good fight. He never complained. On Thanksgiving Day he told us that he was not going anywhere. He passed on December 4, 2011. It is still so hard to believe.

I hope this information was helpful and I will continue to keep your brother in my prayers.

Just remember one day at a time.

Regards,

Onemore

onemore
Posts: 57
Joined: Jun 2010

Dear Pett,

I am so sorry it took me so long to get back to you.

My dad was diagnosed in May 2010. When he was diagnosed the tumor was only on one side of the pleura. The news was devestating to all of us..

He went for a second opinion. The doctor he went to is a well known doctor in New York City. This doctor is the chief of Thoracic surgery. She has over 25 years of experience with mesothelioma. She took a look at all his records from the previous doctor. She decided that the first course of treatment would be to start chemo to try and shrink the tumor. He started chemo and had 2 rounds of it. Then she sent him for a scan to see if the tumor was shrinking. The tumor markers where the same. The next step was to stop chemo and prepare for surgery. Her goal was to remove the lung and part of the diaphram. During surgery she discovered that the tumor was inoperable. She told us that the tumor was intertwined into his ribs and that there was no way to remove the lung. We asked how much time he had and she said one year to a year and a half. She told us that she would like him to recover and then start radiation therapy. He proceeded with the radiation therapy about 6 weeks after surgery. He did very well with the radiation. We believe that the radiation therapy is really what kept the tumor at bay for as long as it did. He also tried a chemo pill but decided to stop that. My dad was on oxygen as needed in the beginning. He also had a drain in the pleura area because he was filling up with fluid. About one month before he passed he was filling up with fluid in his stomach. He had a drain there to relieve the fluid build up.

I have to say my dad put up a good fight. He never complained. On Thanksgiving Day he told us that he was not going anywhere. He passed on December 4, 2011. It is still so hard to believe.

I hope this information was helpful and I will continue to keep your brother in my prayers.

Just remember one day at a time.

Regards,

Onemore

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network