Hi. Although I just officially joined this community, I have spent hours reading all of the informative and inspiring posts on this site.

The more I read about the experiences of other meso patients and caregivers, the more that I fear that we are not doing all that we can for my mother.

My mother was diagnosed with pleural meso in the right lung on 2/25/11 at the age of 60. The meso team at University of Pennsylvania ruled out surgery as a PET scan revealed that lymph nodes on the left side of the chest were also affected. She endured 6 chemotherapy sessions (cisplatin and alimta) from April through July 2011, and a scan in early September showed a 25%reduction in the tumor. Pleased with the results, the doctors gave her a break from chemotherapy, with a scan scheduled for early December.

However, beginning in late October, mom started feeling more "pangs" as she called them, and increased breathlessness. Prior to then, after recovering from each chemotherapy session, she had been very active, and even played tennis. The doctor insisted that it probably didn't mean that the tumor was growing, since she had just had such a good scan and told her to call back in a couple of weeks if she was feeling worse. On november 5th, she and I walked 5 miles at an event to support pancreatic cancer, but days after that, she began to feel worse and demanded a scan. On November 17th, a scan revealed very aggressive growth in the meso (all of the reduction was reversed). On November 28th she was given Alimta (no more cisplatin since she had an allergic reaction during her 6th session in July) and was sent home with oxygen. Later that week she had approximately 2 liters of fluid drained. From then her condition continued to deteriorate to the point where she was constantly dependent on oxygen and barely able to walk. On December 19th when she went to see her oncologist for her 2nd alimta treatment, she arrived in a wheelchair and on oxygen (4 liters). Since she had deteriorated so much, the dr suggested that we discontinue chemo and have home hospice brought in. My mom accepted the suggestion bravely, and decided that she wanted to make the best of the time she had left.
Christmas was just awful, as she was barely able to sit at the table, but instead had to lie down and sleep most of the day.
She had also been put on the fentnyl patch but then hospice added liquid morphine to help ease her breathing, as well as Xanax to help calm the panic of not being able to catch her breath. Throughout January and February she continued to require more pain medication and developed a terrible sounding cough that was very painful and required cough medicine with codeine as well as a nebulizer. By late February, her condition worsened to the point that it took 2 people to care for her, as even changing positions in bed couldn't be accomplished on her own and she could not even stand up to use the commode. From December until late February, she was having terrifying panic attacks where she couldn't catch her breath at all and we added liquid atavan to our meds. But in late February the panic attacks subsided, but she began to grow more and more confused and lethargic. It would not be unusual for her to sleep 17 to 21 hours a day, and at points we couldn't wake her if we tried. She began eating very little and drinking on and off. The confusion has steadily increased - first mostly about the time of day because she was sleeping so much, and now mostly about everything. She talks about things that make no sense, she sees things or people that aren't there, and has difficulty with her short term memory. She had an upper respiratory infection the first couple of weeks of March, but since then has coughed very little. Her breathing is much less labored than it seemed in January and early February, where you could see her chest and belly just heaving with the exertion of taking a breath.
The hospice nurse has told us that the confusion is normal, and just part of the "dying process". Because this "process" seems to have been going on for about 6 weeks now, I am wondering if the symptoms are in fact something that could be relieved. My mother wanted to enjoy the time she had left and between the lethargy and the confusion, the only thing she enjoys is sleeping.
I know that meso rarely spreads to the brain, but I am wondering if we should request testing to see if that may be the case? Or is what I am describing typical of a patient with advanced meso? I think that her physical pain is well managed, but she really has no quality of life. Any advice would be very much appreciated. Sorry this is such a long post!

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Lisa
Daughter of Pat, 61
Dx 2/25/11 pleural epithelial
At peace 4/8/12, Easter Sunday

Hi Liz,
sorry to hear how much Mom is suffering. I can't comment on the medical issues, however you may want to consider speaking to Mary Hesdorffer, our NP on staff at the Meso Foundation. Mary has specialized in meso for over 17 yrs and is our go to person in the meso community. She monitors this blog also, so I suspect she will reach out to you if you don't call her.

Hope this helps a bit.
Rich

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Rich (patient) and Lora Mosca
Peritoneal Survivor dx'd 12/06

Hi Liz, call me anytime. I will be traveling tomorrow afternoon but other than that can chat whenever the time is good for you. So sorry to hear about your mom and the impact I am sure you are all experiencing. Direct 443 977 0312 Mary

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Mary Hesdorffer, NP
Medical Liaison, Mesothelioma Foundation

Hi Lisa,
My heart goes out to you. You may or may not have read some of my postings, I lost my father 11 days ago to the same thing as your mom. And the confusion you speak of is painfully all too familiar. I dealt with the torture of this, and not knowing whether to pursue it, and what the cause was, for my father. His confusion came on suddenly in mid december. I did not pursue any testing/treatment as he was on hospice already, and I did not want to put him through anything further. It got so bad I had to have him admitted to the VA hospital. He too had extreme fatigue that stayed with him through his 6 cycles of the alimta/cisplatin and actually never went away. I also noticed that much has been said about it not spreading to the brain. And I have spoken to Mary, our nurse about this. I am convinced that it did indeed spread to his brain. I am comfortable in my decision not to have had testing or treatment done, it would have been too harsh in his weakened condition. I'm glad your mom's pain is well managed, Hospice does a great job of comfort care. You're not alone, post as much as you like here. Having this site was a tremendous help during me & my dad's struggle.
Diane

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Diane
Caregiver of Thomas (my Dad,82)
Pleural epithelial meso
dx 11/10
Our battle ended March 16, 2012. Together.

Thank you to everyone for replying. Diane I did read most of your posts and I admire all that you did for your father by yourself. I can't imagine going through this alone. Fortunately I have my dad and my sister with me. I spoke to Mary, and she suggested that I ask the hospice nurse about cutting back on the fentynl patch. Mary, I did talk to the hospice nurse and she advised against that since she doesn't think that mom has lost that much weight based on measuring her arm ( I don't necessarily agree, since her left arm has been extremely swollen with fluid for over a month and now her right arm has begun to swell as well so I am not sure how we could use that method of estimating weight loss). The nurse also feels that any confusion/delirium caused by the patch dosage would only last for a few days until her body adjusted. Mary, as you suggested, maybe the disease has stabilized? If that is the case, it picked a bad point it it's progression to do so. Yesterday, she did manage to join us at a walk for mesothelioma (2young2go - Get the Lead Out) at my high school in Ambler PA. She was a real trooper as the weather was rainy and chilly and it was a challenge to get her in the wheelchair, in the car, etc. We just keep hanging in there and do everything we can think of to keep her as comfortable as possible.

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Lisa
Daughter of Pat, 61
Dx 2/25/11 pleural epithelial
At peace 4/8/12, Easter Sunday

Lisa
It is so hard to see loved ones suffer through meso and all that goes with it. Here, on this forum, you know so many have gone through what your family is feeling and though it doesn't make anything better you know we can understand. Please speak to Mary, she may be able to make sense of this all for you.

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HUGS
bonnie
Peritoneal survivor 10 YEARS

Hi Lisa:

I am so sorry you're going through this.  We went through many of these same things with my dad.  As he deteriorated, he became distant and would talk and lightly call out to his grandma, not in a panic, but calmly.  She had, of course, died long ago, well before I was even born, but they had been very close.  We thought he was having problems with his brain but when he had to tell us something he was very clear and lucid.  I just finished a book called Final Gifts, written by 2 hospice nurses, and they say seeing people who others can't see is very common from those in hospice, and does not usually have anything to do with the medications they are on.

I never think it's a bad thing to review the pain management process with your mom's health care team.  Most doctors and nurses are usually open to doing so and answering any questions you have, at least that has been my experience (there's always some thrown in there that are short and don't have the best people skills, but I've luckily found this to be the exception rather than the rule).

I hope you get some answers that put your mind at ease, you and your family will be in my thoughts during this hard time.

Kelly

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Kelly, daughter to John - sarcomatoid pleural meso
1947-2009
Contact me: kdill168@hotmail.com

Bonnie and Kelly, thank you for your posts. Over the past week my mom's condition has further deteriorated. Nothing could have prepared us for the brutality of this disease. She has been bedridden and on oxygen for almost 4 months now. We spoke to her oncologist for the first time since December and he is very surprised that she was able to hang on past February. She can barely communicate with us now, and we just try the best we can to keep her comfortable. It is so unfair that anyone should have to go through this.

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Lisa
Daughter of Pat, 61
Dx 2/25/11 pleural epithelial
At peace 4/8/12, Easter Sunday

Dear Lisa
I am so sorry. It IS terribly unfair. We are being robbed of many wonderful years with our loved ones because of this disease. I know how difficult this is, please remember to eat, and try to take care of yourself. It is important, so that you will be able to be at your best for your mom. I always tried to appear very strong for my Dad, I'm certain it helped him alot, knowing the situation was well under control (even though inside i was falling apart). I'll be thinking of you, please keep us posted.
Diane

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Diane
Caregiver of Thomas (my Dad,82)
Pleural epithelial meso
dx 11/10
Our battle ended March 16, 2012. Together.

Lisa, I'm so very sorry to read your posts about your Mom. I have put off posting because it brings back sooo many memories of what my husband endured with mesothelioma. Also, although many will swear by Hospice, I had an awful expirence with them, and posting about it serves no purpose here. I can only offer prayers for your Mom. May God be merciful in her suffering. This disease is indeed brutal.

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Carol wife of Bud
dx pleural epithelioid meso
12/18/08 Accepted into Gods arms 9/14/10
E-Mail bcpaus@charter.net

My mother is finally at peace. She passed away quietly Easter morning after months of suffering. The past week was especially devastating. Thank you to all of you for your comforting messages.

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Lisa
Daughter of Pat, 61
Dx 2/25/11 pleural epithelial
At peace 4/8/12, Easter Sunday

Lisa, you will be in our thoughts and prayers. If I can be of any help to your or your family during this time please call. The community will hold you close to our hearts during the rough days ahead. Mary

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Mary Hesdorffer, NP
Medical Liaison, Mesothelioma Foundation

Lisa,
I am so sorry. Your mother is no longer suffering. You are a wonderful daughter to have stayed by her side. It isn't an easy thing to do. I'm still trying to figure out how to live without my Dad, its 3 weeks that he's been gone. I'll be thinking of you, again I am so sorry. I know your pain, your not alone.
Diane

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Diane
Caregiver of Thomas (my Dad,82)
Pleural epithelial meso
dx 11/10
Our battle ended March 16, 2012. Together.

Lisa- our thoughts and prayers are with you and your family in your loss. The heartache in losing a loved one is overwhelming, but we are all with you. Stay strong Mike

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Mike, Partner/Caregiver of Lisa, dx 3/06 peritoneal mesothelioma

Lisa
I'm sorry to hear your mom lost her fight. Hold her memories close.

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HUGS
bonnie
Peritoneal survivor 10 YEARS