Mesothelioma

My mum has malignant pleural
My mum has malignant pleural mesothelioma. She was diagnosed late March 2009 after waking very SOB and needing fluid tapped from her lung. It really is a horrible disease, so few treatment options. I feel lucky that I've had mum as long as I have, and been able to take off work for months to care for her and spend time together. She has had 9 rounds of chemo with carboplatin/alimta and just starting to make her sick the last session. I fear soon the decision will come as to quantity v quality of life if the chemo effects continue to worsen. She is currently on home oxygen as required, and has a lot of pain from the lung being squished by tumor. The oxycontin, oxycodone, and particularly the liquid morphine works well so far.. the hardest thing has been having to be bossed around by her daughter (me!) and losing control as she can do less things without pain/shortness of breath.

Her meso was due to a lot of asbestos in the hospital where she did her nursing training 40 years ago.. so heartbreaking that your choice of career can inadvertently kill you. I know my mum will never dance at my wedding or hold any children I may have, and that is hard to accept. We have had time to deal with it a little though, which I guess is a blessing.

Em said:

Mesothelioma
Augigi,

I know just what you are going through and writing about. How old is your mother? My Jim is 67 and was diagnoised last April 2009. He participated in a clinicial trial at NIH in Bethesda, MD and did quite well. But unfortunately meso has reared it's ugly head again and he is now having Gemzar and Carboplatin for chemo here in Carlisle, Pa. When at NIH with the trial drug he was given Alimta and Cisplatin. We do not know where he was exposed to this, but most likley in the military. We pray each and every day for a cure and soon for this cancer. Not enough people know about it or understand it, more awareness is needed. Thank you for responding, it helps to know we are not alone in with this disease. God Bless you and I pray your mother is doing much better soon.

Em

Em, I'm sorry to hear about
Em, I'm sorry to hear about your husband. My mother turned 65 in January. 35 years is not long enough for me to have had her around but I just have to take every day as it comes, and be grateful for any time we have. Blessings to you and your husband.

Em said:

Mesothelioma
Thank you Augigi. There are days that are just so hard, last night was one of them. Today he is better, but having more pain. The shame of all this is innocent people like your mother and my Jim and many others are suffering for something they are not responsible for, there is still a lot of Asbestos being used in so many products all over the world, Canada still imports it as many other counties do, frankly I don't think anywhere near enough is being done here by the EPA in the United States either, as there is just not enough oversight/regulation being enforced. I read that when the Twin Towers in New York were attacked, it released one ton of asbestos, all those people there at that time have been exposed to this horrific disease. There just needs to be much more awareness and research done. I am terribly sorry about your mother too. We need to take it one day at a time, and try our best to make them comfortable, and pray desparately for a cure, soon. God Bless you and your mum.

Emily

Yes, I read that a lot of
Yes, I read that a lot of the 9/11 first responders are sick with chronic lung diseases now, as well as facing the prospect of asbestos exposure which may turn cancerous later. It's horribly sad given that they were going about their jobs and trying to help people. Just terrible that asbestos is still permitted to be sold, given all they know about it now.

Strangely enough, my sister's father-in-law died of mesothelioma a few years ago, he was a shipyard worker. So now both she and her husband will lose a parent to this awful disease.

I'm not sure where Jim is at in terms of symptoms, but I just wanted to mention that both the home oxygen and the morphine liquid have been the best thing for mum. She was VERY resistant to both, thinking oxygen was for cripples and morphine meant you were dying. As it turns out, just 1ml of morphine and she is much less short of breath and it's great for the pain too. Just something to think about in case you're not there yet. Also, we got home palliative care involved a few months ago, and they are fantastic with symptom management and just having someone to call at 2am when mum's crying from pain or panicking with shortness of breath.

Wishing you both the best.

Em said:

Mesothelioma
I am so sorry to hear about your sister's father-in-law and now her and your mother. It is just so heart wrenching and frustrating, that more should be done and I don't believe it is.
I appreciate very much your suggestions of medications. Jim is not doing as well today, he is having such a hard time eating. He is not taking morphine yet, but I am sure most likely he will some time. We leave tomorrow to go to NIH in Maryland for a check up and I am concerned what the c-scan might reveal. And thank you recommending palliative care, I am not sure how to go about getting this, is it similar to hospice, do you know? I lost my mother when I was 19 to ovarian cancer, she lived six months, and my father had died in an automobile accident just 12 months before she died. Well, thank you again Augigi and blessings to you and your wonderful mum.

Emily

Yes, palliative care is the
Yes, palliative care is the same as hospice. They are there to help treat symptoms rather than treat disease.

There is something called Megace that is given for poor appetite that i have read several people on here having good results with.

I'm so sorry Jim is having a hard time, it's even harder for us to watch it, I think.

Mum had some more chemo and is doing great this week, so thankful for the blessing of each good day she has.

I hope your checkup went ok.

Em said:

Mesothelioma
I am so glad you respond to my postings. It is comforting, because very hard to find others who do post about this cancer.

We did not have good news from the c-scan at NIH this Wednesday, the disease is progressing and moving under the other lung and some into his stomach. His heart is ok and we are trying to focus on that as being positive. We also were able to see another doctor at NIH about another clinical trial for Jim. We will go back to NIH April 26th for three days, they will test him to see if he can qualify for the trial. Most important it seems to qualify, is if he passes the heart tests. Jim said even if this does not help him, he wants to be able to contribute to studies to help others with this horrific disease in the future. While Jim weighs 196 and is 6'1" the doctor would like him to put more weight on for this trial, and he gave Jim a prescription of megestrol (which sounds like what you mentioned above). Jim has taken it for two days and we are seeing an improvement in his appetiate. The doctor at NIH told Jim to stop his chemo here as it was not helping him.

Please keep in touch and let me know how your mum is doing, I care.

Blessings,
Emily

March 25th was the 1 yr
March 25th was the 1 yr anniversary since mum's diagnosis.. guess we just have to be thankful that she is still here. She had in her mind that she wouldn't make it past Easter this year, and she's still here.

She had reduced dose chemo last week and has had no nausea, just tiredness, so that's a relief; if she'd had nausea again I don't think she would've had any more treatment. Things are stable so I am staying an extra week in the US to get some work done, some stuff taken care of before I head back to Australia.

I'm sorry to hear Jim's cancer is progressing.. it just keeps marching on, doesn't it? What type of chemo was he having that didn't work, if you don't mind me asking? You may have said, but I can't remember.

I hope you guys cope okay until your next appointment. Fingers crossed that he qualifies for the trial! Hope you have a good Easter.

Em said:

Mesothelioma
So good to hear back from you. Jim has been on chemo of Gemzar (or Gemcitabine) and Carboplatin since February 3rd. Today he was feeling very poorly so I have an appointment with the oncologist here for this afternoon (I am going to argue for oxygen for him). I personally do not think Jim will be able to go 4 weeks (that is what is required before he would even be tested to see if he would qualify for the trial) without some kind of chemotherapy. The doctor at NIH has suggested he might go back to the Alimpta (he had that last summer at NIH) and Navelobine (Vinorelbine) here in Carlisle, and right now I think that would be best for him. I think it is too dangerous at this stage of the disease (one year April 28th) to wait that long for a trial that is not a new trial either, just such a gamble at this time I think.

Are you in the states right now? Did your mum receive treatment in the states? Well I better go and get his ready for the doctor appointment. Have a great day, we must be thankfrul for each and every one of them. God Bless you.

Em

I live in the states but mum
I live in the states but mum is in Australia, so I have been going back and forth. Heading back there next week for a few months. Luckily my work has been fantastic about giving me time off, first FMLA and now personal leave.

I did think a month sounded a long time to wait for treatment for Jim. I know they gave mum a break from chemo for 2 months and the cancer went mad and grew enormously in that time, the deterioration was very bad until she got back on the chemo.

Bad news today for me, I'm afraid. Mum had a lot of pain (good lung side, near the ribs, sharp pain) and shortness of breath a couple of days ago so my sister took her in to the hospital. They did a bone scan and CT in case the dexamethasone had made her bones brittle/break. Unfortunately they found a spot on her spine, at the T8 vertebra. So I imagine thats what has been causing the nerve-type pain that has annoyed her for a couple of months. They just treated with pain meds and steroid until now which eased the symptoms. They are considering radiation therapy which I know scares her to death.

It's just so hard to be a world away and unable to know what's going on, esp when you're a nurse like me and you can't help at all. I leave again Tuesday so hopefully things stay stable until then. I suppose the spot on the spine doesn't change the outcome, but it feels like a step backwards anyhow .. so I'm a bit miserable tonight!

Hope things are better for you guys at the moment.
Jen

Em said:

HI Jen,
I completely
HI Jen,

I completely understnad how you are feeling. I have felt like this from the moment I woke up today, it just seems like there never is a glimmer of light. One step forward two steps back. I don't know if I mentioned this, but I was finally able to get a prescription for Jim for oxygen, what an ordeal though. He is not using it as much right now, and today he is very tired.

So you are a nurse too like your mum? God Bless you both, I cannot think of a more wonderful profession. There is such a shortage of nurses too, and they put in such long hours. It takes a very special, gifted person to do this job. I am a retired federal bank examiner, and now feel like I am becoming a nurse, Jim had a catheter put in his lung last June and I drained it every day, and then every few days until it was removed in August. Then came the shots (for blood clots after he participated in the clinical trial at NIH last year) now it is bowl problems. My heart just aches for your mum and my Jim and all others suffering from this disease. Even though the doctors at NIH said some of this has progressed, they did say his heart was ok, so we try to focus on that. We have to look for that glimmer of hope I guess. Anyway, I have actually found it rewarding to be able to help those so sick like this, I never thought I could do it, but so far so good. Well, I best go check on Jim.

I have read some things recently about a possible vaccine for lung and maybe mesothelioma too. Are you familiar with the curemeso.org website? MARF Mesothelioma Applied Reserach Foundation, great place and wonderful nurse Mary for assistance. Please keep in touch, comforting to have someone who understands this and can share thoughts.



God Bless,
Emily

Hi Emily, thanks for your
Hi Emily, thanks for your kind words. Yes I always said there's no way I'd be a nurse like mum, thought it was gross, but fell into it and now I love it. Both my sisters are nurses too. I work with very sick people, but it's a whole other thing looking after someone you love, it's so hard to see them sick and in pain. I do know that mum feels better when I am there and always told her that I would look after her if she needed it. It's the hardest thing I've ever done, but I know I will always be glad that I did. Apart from anything, being able to help and spend that time together is a blessing.

They found that the spot on mum's spine was a compression fracture, not a metastasized cancer. Probably due to normal osteoporosis changes plus dexamethasone. So now they can't use the dexa for nausea/pain anymore, so we'll see how she goes with her next chemo. She sounded terrible when I called yesterday, they had just increased her oxycontin and she sounded very tired and had slurred speech. I know she hates that, so we'll see how it settles after her body gets used to it for a few days. They are keeping her in until I get home so she doesn't have to cope with just Dad to help, he's a bit useless with illness although very proud if he gets to give her a pill or some morphine!!

Do encourage Jim with the oxygen - mum was very resistant to it, but it makes a huge difference in both shortness of breath and exhaustion. I can always tell when she's sounding off/tired/sob and tell her to put it on.

I had a nice Easter at a friend's family dinner, although it made me a bit sad that I couldn't be with my own family it was very kind of her to invite me.

Well, 2 more sleeps till I head off back home, so I will be in touch after I get back. Can't wait to see my mum. All the best to you and Jim, hope you had a nice Easter.

Em said:

Mesothelioma
Hi Jen,

I hope you and your mum are both doing well. I am a little behind getting back to you, but Jim had a serious set back this last week. In fact, the last two weeks have been very difficult, as he has declined more then ever before. We have now cancelled this up coming trip to NIH in attempt to see if he could qualify for another clinical trial. We called in Hospice, reluctantly, this week. He is only drinking fluids, no foods since Sunday, the day it seems things really turned around, although a week ago today (Thursday) is when I would say things really started to change. He was very depressed, I called the local cancer center and they doubled his pain meds, which helped, but also made him disoriented. He is so weak and we now have a hospital bed in the house. This is just so heart wrenching, I wish I had better news to write about. Well, I better go and check on him, please keep in touch when you can. Thank you Jen.

God Bless,
Emily

Oh dear, I was worried that
Oh dear, I was worried that was why you hadn't been here. I have been checking to see if you would pop in. I am so sorry to hear about Jim. I hope hospice is helpful, they have been a godsend to us. Mum is also v. depressed, not eating, nauseous and in pain. It's really just miserable, you wouldn't leave a dog like this as they say.

Do the hospice staff leave you with morphine liquid to dose him with if required? That has been the most useful thing for mum when she is really short of breath or in pain.

You are in my thoughts and prayers, look after yourself as well as Jim.