Mesothelioma

onemore said:

Mesothelioma
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

Hi Onemore
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

Em said:

Mesothelioma
Congratulations! You did very well with the surgery. They told Jim it would be at least 13 hours for him, but because they found a spot in his stomach he did not qualify for the surgery. You have been over the hardest hurtle, there are a lot of people who cannot endure or qualify for this very difficult surgery. I don't know if you have Boost Plus but it is a drink Jim had quite a bit that would help provide nourishment for him. He didn't have colds, we were lucky there. Remember try to take this one day at a time, I know Jim felt like he wanted to do all he could and hoped they would find a cure. You never know when they might. If you are interested in the future regarding any clinical trials, I would be more then happy to provide you with the telephone number and name of a nurse who could help you, she is very knowledgable with mesothelioma. Please keep in touch, if you have any other questions or if I could be of assistance to you, I would very much like to do that.

God Bless,
Emily

Hey Em, I just wanted to
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.

sadida886 said:

Mesothelioma
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

Hi Sadida
Thank you for
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

Pett said:

Mesothelioma
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?

Mesothelioma
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 said:

Mesothelioma
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

Dear Pett,
I am so sorry it
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