Life expectancy - liver metastasis

MicheleBurnside · New User Joined: 21 Feb 2007 Posts: 8 Location: Irvine,CA.

[quote="MPapailiou"]I'm so sorry for your loss d4nnie.
Your father sounds as a great man. Treasure his memory.

My deepest sympathy

Mandy[/quote]

Hello!
I am new to this web site. I am getting so much information from you all. Thank you so much. I think my father has something very similar to MPapailiou 's mother. My father was diagnosed with NSCLC about 3 weeks ago. THey were told then that the tumor was inoperable in the left upper portion of his lung pressing on the vena cava artery I believe is what they told me. At that time he had only had a CT Scan. My MOTHER was so upset with his diagnosis and because the doctors wanted to move forward with treatment very quickly that she kept my father from receiving any treatment or tests. She of course watched his decline very quickly and last week after the doctor and radiology dept kept calling my dad took him back to the doctor and has finally taken him for what will be his 7th radiation treatment tomorrow. (He had an MRI on Friday and a PET Scan on Monday) Today being Wednesday the radiologist told them that my dad's lung cancer has metastisized to the liver, abdomin, pelvic bone and he has a collapsed lung, and he doesn't know how long he has to live. My mother is in total control of my father. He is the dearest sweetest man in the world. She is mommy dearest. She just let me come and visit him for the first time in years this weekend. She has always brought him out to see me at my home when the time suited her and he goes along with it. He looks terrible. The last time I saw him was at Christmas, and I knew something didn't look right then. I am not surprised that my father has lung cancer, he started smoking when he was 9 and he will be 80 this March. I am frightened and I don't know what to do. I love my father very much he means everything to me. I'm (as all of my family is) scared to death of my mother. I have been planning a huge 80th Birthday party for my father which is going to take place on March 24th. Now that we have received this news I am concerned about how he will be feeling then. He already gets exhausted walking from the living room to the kitchen. He sleeps all the time. He has had up until yesterday a great appetite and he still has lost 10 pounds in the last 2 weeks. My Mother and my Father tell me not to cancel or change the date of the party that he will be there. I don't care if we have to bring him in a hospital bed, if that's what he wants, but he thinks that after a few more weeks of radiation treatment he is going to walk in there of his own accord and sit and visit with everyone. He said that they told him he would be feeling better. Is this possible? No one has mentioned stages. but it sounds like stage IV to me just by what I've been reading on the internet. He is so weak now. Isn't the radiation only going to make him weeker? And with it metastasized to the liver, pelvid bone, and abdomin, and too along with a collapsed lung is it really realistic to think he will be able to attend this party with any sort of dignity? My father is a very private man. I don't see him feeling that much better in a few weeks. I know no one knows how long he is going to live, but can anyone tell me what they personally think based on their own personal experience? I believe they are even going to start Chemo therapy sometime next week. I personally would love for my father to be around for the rest of my life, but I don't want him to physically suffer he has already mentally suffered for his whole life with my mother. People have told me there are medications now that take care of the nausea and vomiting. Will he really be getting stronger after another couple of weeks or will he be only getting weaker??? Please someone let me know. My mother has at least been cordial to me and allowing me to visit my father, but everything has to be on her terms. When I first wanted to give him this party she was so upset with me, and now she is so happy with me. I just want to do what is best for my father. I have 2 children and I am busy with them, but I am constantly thinking about my father. Whenever my mom says I can come over I am going. I just pray when the end comes I will be there. I don't want him to die with just my mother there. What signs should I look for to know if the end is very near?
Michele
_________________
Daughter of Kenny, who passed away March 28,'07 4 months after diagnosis (NSCLC IV with metastasis throughout entire body, except brain)

MPapailiou

Hi...

It seems that you're dealing with a very difficult situation. Yes, your father's case seems similar to my mother's. He is definitely in a IV stage and that's because his lung cancer has already metastasised in other parts of the body.

My Mom's situation got deteriorated because of the liver metastasis. It was actually her liver cancer and not the lung cancer that caused her passing away. In her last month she lost more weight, couldn't walk without getting tired and was sleeping all the time. In her last weeks she got jaundice and they were giving her morphine in order not to feel any pain. She was asleep almost all the time. In her last days she just "slipped" in some kind of coma and nevr woke up.

But that's was my mother's case. Every case is different, it doesn't have to be the same with your father.

I wish you strength. Remember that you will not ever have a second chance with your father's "last days". Try to think, when you will be with yourself a few months after his passing away, what would you like to have done and said in order to be in peace with yourslef and his soul. And do exactly that, no matter of what your mother tries to pull.

Best wishes,

Mandy
_________________
Mandy
Daughter of Jean, who passed away on May '06, 9 months after diagnosis (NSCLC IV, with liver and bone metastasis)

Our spirits are eternal. Keep the chin up!

MicheleBurnside · New User Joined: 21 Feb 2007 Posts: 8 Location: Irvine,CA.

Mandy,
Thank you so much for replying to me on this. I really have no one to talk to. No one in my family wants to discuss or know anything. I want to know so I can make sure that my father is comfortable, and not in any pain. My father is going to try chemo, but he says if he gets sick he is going to stop. I'm assuming that he is going to get sick. I don't know what the benefit would be with him taking Chemo. Is he ever going to get even a brief sense of strength? He so desperately wants to go to this darn birthday party that I'm planning, and I want him to go so he can see all of his family since we have not ALL been together in over 20 years, and I can see this is all he is holding on to right now. But I don't want him to think that he has to do this for me. Do you think any of this treatment is going to make him feel better in 4 weeks or weaker? If he stopped the treatment now I fear that his decline will accelerate rapidly. Is there any medication that I see advertised on TV that can help him build up a little strength or at this stage is this just not possible? It's so hard to see him deteriorating so fast. What would you do? My father is not a religious man, but I am and I am praying for guidance and peace for him. I say I'm ready to let him go, and I'm very strong around him, but I want to curl up in a ball and just cry like a baby.
Michele
_________________
Daughter of Kenny, who passed away March 28,'07 4 months after diagnosis (NSCLC IV with metastasis throughout entire body, except brain)

MPapailiou

Hi Michele...

I know how you feel... My mother didn't have any radiation, so I don't know anything about it. She only had chemo but didn't suffer from it. When she started getting the chemo treatments she got better for 2-3 months. She took pills from nausea and everything so, she was really okay, no really bad side effects. Of course, after this period her situation deteriorated rapidly. Chemo would only help for prolonging her life for 1-2 months which was not what she wanted, so after a while she just got palliative care.

I think that if your father really wants to be to his birthday party, even for saying goodbye to everyone, he will make it. My mother only relaxed when she felt that she has closed everything behind. Then she let herself to cross over to the other side.

I wish you strength,

You can PM me anytime,

Mandy
_________________
Mandy
Daughter of Jean, who passed away on May '06, 9 months after diagnosis (NSCLC IV, with liver and bone metastasis)

Our spirits are eternal. Keep the chin up!

mph101 · New User Joined: 28 Feb 2007 Posts: 2

Hi,
I've been lurking since Nov & have obtained a lot of good information, yet very sad. My domestic partner was being tested for liver cancer in Nov though there were no Symptom's that we could tell. In fact when he first told me he was getting some test for possible liver cancer I didn't pay much attention. The reason is he has HIV and every test known to medical science has been preformed over the years. He gave me some test results one day and I said I would read them later. A week or so later while cleaning my desk I noticed the results and gave them a look over. I suddenly became extremely alarmed and went right to the web to research. I found that the continuing test he was taking were step for step what I was reading for primary liver cancer. From blood work to MRI.
At this point I knew in my heart he had liver cancer because I know that insurance doesn't pay for expensive test without reason or for prevention and he was re taking test. The biopsy was painful and done wrong so he had to get another.
On Dec 8th it was confirmed he had liver cancer and though his general doctor told him little about the severe conditon of it She had to know more about it then the information she gave out. My partner only knew cancer is not good not how severe things were already.
A few days before Christmas we met with the Oncologist who passed us directly to a specialist surgeon who from the get go said resection. I had already read that a resection wasn't a option for a tumor over 5 cm, and brought this up to him. My partners tumor was already 9 cm. I wasn't surprised by the arrogance of the surgeon when he said he could do this and doesn't like to fail. The chance of dying due to liver failure was 30% because of HIV where as he stated normally it is about 10%. I pushed forth again saying I have read a lot and nothing I have read said a resection could be done on a tumor larger than 5cm. We went home to talk about it. It was his decesion though I knew if he did it he would never come home.
The decesion was made for a embolization first then the resection by the staff at the hospital. This is the embolization that shoots the little coils into the tumor. The date now is mid January 2007. Once the embolization was done it seemed to let the Genie out of the bag and things went downhill very fast. In fact there was nothing positive about the embolization. My partners health slid fast. He was given 6 to 8 months to live and the cancer had spread to the other lobe a resection was now out. Onward to a chemo embolization which was supposed to be done yesterday. The medical world drags butt and answer machines block direct communication from a real human to tell you in person how slow things are so your loved one may die before you get a call back.
My partners health slowly decayed but it wasn't severe enough to truly notice. The good times became less daily and pain was increasing. Last Wed. night a dramtic turn happened and the pain level jumped 10 fold. He is a tough guy being through a lot of health problems but I had never seen him in such pain. It was numbing and heart breaking to watch this go on for 48 hours straight and the pain meds doing no good. While I was calling the Doctors I had to honer his demand to not do anything because he will get better. He didn't. He also stopped eating last Wed (02/21/07) and since that time ate only a sandwich on Sat night when the pain went down. On Sunday even with the narcotics higher dosed he fell into even worse pain than before and it was unbearable, there was nothing I could do other than feed him pills at higher amounts then prescribed.
He didn't want Hospice care even though we are well versed in the fact Hospice doesn't mean dying, as you learn when you have a disease such as HIV - Hospice has always been. So Hospice couldn't sign him without his consent on Sunday. Monday morning I called Hospice and told them we needed help and I don't think my partner is of sound mind due to pain and narcotics therefore I am now taking the power of att. & health surogate. They came out confirmed my reasoning with a Doctor and now under Hospice care today, though they haven't done what they said already I hope this will not be the case.
I know many people who have died painful deaths from AIDS but I never had or knew anyone that stayed at home to pass away naturally. My partner will do this. There is a big differance in going to a hospital/nursing home seeing a loved one and then going home while a nurse proffesional takes care of the person You don't see all of what goes on 24/7. That is bad enough yet the sanatized version of what death really is when you are with a person all day & night.
Already this is a nightmare and likely the worse thing I have had to go through in my life, but I will do what needs to be done and do it out of love and respect. Palliative care seems harsh when not understood but even after trying to understand it you just want to shove a cookie or something in your loved ones mouth. Things will be worse when he stops drinking water. Watching the decline is horrible yet we are told part of the human experience that most don't want to see or understand. This is understandable.
I never thought that the withdraw of food would be the start of the body shutting down, and that is what through me for a loop. It is unbearable to watch because if he would only eat something. I no longer ask him about eating. He is now I would guess about 100lbs in a week and has no desire to see family or friends. This is another thing I didn't think of with having a loved one at home. In a hospital visiting hours are generally respected by friends and all but the closest family. In my home I get the wrath of anger because I don't want people coming over when they feel like it. First off he wishes people not to see him like this and could care less about anything other than stopping pain.
He is drinking but maybe not as much as yesterday. Keeping him doped up cures the pain but there is no real person to visit with because he is out of it.
We are both in our late 30's. Hepatitus B & C go hand in hand with HIV most of the time, yet there is little testing for hepatitus when you get lab work for HIV. Again the insurance companies don't pay for testing in a lot of cases they deem not important, like paying for flu shots.
Perhaps had we known then the cancer could have been caught before it was 9 cm in Nov and now its 11 cm with spreading into the other lobe. Of course chemo of any sort is out. It would kill him faster due to the HIV.
He didn't get anywhere near the 6 to 8 months, just about 1-1/2 month and that is how it happens.

He is in the other room sleeping or passed out from the drugs but at least he isn't screaming, moaning, & crying.
One thing that I hadn't read about was the intense back pain. He thought it was a pulled muscle and still doesn't want to hear it could be the cancer spreading into his spinal column or the tumor pushing against his frame. He still puts the heating pad on his lower back and though that may not be a good thing I don't stop it or say anything else.
Every minute now seems like a day and simply there were no good options for this type of cancer by the time discovered and the options offered didn't mean squat about quality of life just increasing quantity.
Neither he nor I think quantity is ever better than quality but most of these liver cancer solutions don't offer any quality and the result is so sad. I know there are success stories and I am hoping something good will happen and something new can be tried. I keep my opinions inside around him and talk about projects we are going to do around the house in the spring. I also knew with HIV,hepatitus, & liver cancer it was really the end I just thought we would get some quality time berfore things took a dump. We didn't.
Dec 06 - Feb 07 total time
Things happened very fast, really it shocked me how fast things went downhill. Not much time to get ready and too much time to cry.
Take Care,
Mike

MPapailiou

Hi Mike...

I feel so much for you and your partner. Even though my mother didn't have HIV, she had a hard time herself... She was in the hopsital but I was staying with her 24/7, I was living in the hopistal too, so I know how it is to witness everything.

Her health adventure led me to more spiritual search, even when she was in the hopistal (not religious). If that would mean anything to you, after she passed away, I actually felt her and saw her spirit smiling in relief. Your partner's adventure and yours was hard, but it is time for you to look ahead. He is well where he is right now. Write down all your happy memories from him, talk to him, tell him how grateful you are for the time you spend together, he can listen. Don't have your mind stuck on the disease, just the happy moments, that's what I did and it helped a lot!

Wishing you the best,

Mandy
_________________
Mandy
Daughter of Jean, who passed away on May '06, 9 months after diagnosis (NSCLC IV, with liver and bone metastasis)

Our spirits are eternal. Keep the chin up!

mph101 · New User Joined: 28 Feb 2007 Posts: 2

For the nice people who have sent me replies I want to thank you. I would or will write you a note when I have time.

The situation that has developed for which I have no understanding of handling is that my partner has become a extreme live wire. He doesn't sleep and he is constantly into things like a 6 yr old. The nurse told me Sat that likely that was his last surge of energy when he pulled down the heavy stairs leading to the attic and then going up into the attic. I was napping because when I checked him he was sleeping soundly. Had I not had his sister here anything could have happened to him in the attic of the house. Electrocution, nails sticking out, falling through the ceilings, who knows.... but one thing is certain it wasn't his last surge of energy. He is non-stop getting into everything. He is in and out of the bathroom at least 8 times per hour. Has stopped up the toliet with toliet paper 2 twice then flushing flooding the bathroom and hall. He just took a TV remote apart breaking it. He tried to bust the front door out of it's hinges because it was locked. He is moving dishes, and other articles from inside cabinets and closets all over. He has thrown drop rugs out the bag door. He has thrown food all over the floor from the refrig. He has pulled a case of soda's out and opening them all thus ruining them.
From hardly no drinking to drinking a lot and leaaving glass or cups everywhere. You get the idea. I am not able to sleep at all because he is non-stop and I must follow him and try to keep him under control. I have doped him up with enough drugs to drop a elephant and yet he will not stay in bed for more than 5 or 10 minutes. In the past 48 hours I bet he hasn't slept more than 3 hours total, but I got a little more due to his sisters coming to assist. None of us can get over this. He weighs about 95 lbs, is so frail he cannot support a IV port and hasn't eaten any solid food for 8 days now. Though he is getting a occasional popsicle and had a full glass of milk.
I find this amazing really because Sat he looked like death was at hand but yesterday look was better yet still extremely poor.
Some times I look for the humor. He was walking around with just a long pull over shirt but no pants of any type and he put white socks & tennis shoes on walking around the house. He has no more underwear he either threw them in the trash or hid them.
There is no sensible talking from him though he knows who everyone is and is talking, and its a shame because I truly wanted a period to talk in a calm manner while the chance was there but the pain must be controlled with medications. From the litature Hospice has given me I see few signs of the last hours. But I know at any time something could fail leaving him dead or in a coma.

I have a couple minutes now because he is taking his 5th shower of the past 3 hours.
None of this is what I expected for a prolonged period or the strength such a ill, weak person would have.

Take Care,
Mike

MicheleBurnside · New User Joined: 21 Feb 2007 Posts: 8 Location: Irvine,CA.

Mike,
Hello! Wow! I don't know that I have ever heard of someone gettting so much energy after being so weak and in bed. What did the doctors explain for this? I wish & Hope my father would get any kind of energy. Just to sit up for a little while and talk even for a few minutes the way he used to. My Mother & Father got into a horrible car accident yesterday morning on the way to his radiation treatment. The car was totaled and they were hurt but they refused medical treatment> The police called me on the phone and told me I should meet them at their home and take them to the hospital. I spent all day and night at the hospital which of course I didn't mind, but my father especially was in such bad pain. He could have been gettting treatment at the hospital almost 3 hours earlier if they would have went in the ambulance. It is just so hard to see him deteriorating so fast. MY mother is now injured too and she is the one who is taking care of his daily needs, she won't let anyone else do anything, unless it is her idea. I'm sure I told you I planned an 80th birthday party for him on the 24th of this month before we knew of the cancer. He wants so bad to go. I just don't know how he's going to do it. He has another Chemo treatment tomorrow and then his oncologist said that they will check his blood work in another week and he may need a transfusion and alignment of other things in his blood and he thinks he will be able to perk up a little bit to take the ride and sit up for a little while. I feel so bad, I don't want him to think he has to do all this for me and he says he's not but I can't help but feel that he is. Hang in there. I would love to know what the doctors attribute your partners sudden burst of energy to.
Michele
_________________
Daughter of Kenny, who passed away March 28,'07 4 months after diagnosis (NSCLC IV with metastasis throughout entire body, except brain)

andrewnolan · New User Joined: 25 Mar 2007 Posts: 1

I'm sorry to hear about your mom. This past summer I lost my uncle to liver cancer...It was horrible. He lived in Miami, and for the first time in many years he landed a big time job. He and my aunt and cousins were all set to move to Arizona. One day he told my aunt that he could'nt move, and days later was diagnosed with Liver cancer. We received mixed messages from different doctors, so my father flew down from new york to force some answers out of them...He came back home with the idea that his brother could survive for many months or maybe even a few years. 13 days later he got a call that if he wanted to see his brother again, he would have to come back immediatly. My uncle died that night, my parents didn't make it in time. I think this is a perfect example of why you should spend all the time you can with you mother, because it is so unpredictable as to what might happen. It haunts my parents to this day that they didn't make it back in time, and has left us all permanently saddened. It has reawakened my strong fear of death.

MicheleBurnside · New User Joined: 21 Feb 2007 Posts: 8 Location: Irvine,CA.

HELLO All! My father passed away 2 days after the 80th birthday party that I planned for him and my aunt. I had to have 2 separate parties as my father was in the hospital. He lived just 2 short months from the date of diagnosis. I thought I was mentally prepared for his death, but I miss him so much. He was literally holding on so he could see his whole family together which he hadn't ever had. I'm glad he is no longer suffering, butymy father wanted me by his side the whole time he was very scared. I tried to stay with him all the time, but I had to take his sister to the airport and so I just spoke to him by phone that day and he passed away in his sleep. I feel so guilty. I feel like I let him down. I miss him an am so proud to have been daddy's little girl. There are some things I think I would have done differently but the outcome would have still been the same. My aunt has now been diagnosed with the same thing. I will be helping my cousin through this. You become so much more knowledgeable about cancer. doctors, treatments, and Medicare than you really thought you would. This site has been such a great source of comfort to me. I hope to keep in touch and perhaps be of comfort to others.
_________________
Daughter of Kenny, who passed away March 28,'07 4 months after diagnosis (NSCLC IV with metastasis throughout entire body, except brain)

Danabw · Posted: Tue May 01, 2007 10:09 pm Post subject: Not alone

Late last night I was searching the internet for information on the last stages of liver cancer. I was so happy when I ran across this forum and then was immediately filled with sorrow. Because to find what I was looking for also meant that too many people are suffering and overwhelmed with pain and grief.
I read so many life stories filled with pain but what moved me the most was the outpouring of love that flows through your words. To those of you that have cancer, you are the bravest group of people that I know. To the loved ones that are caring for a cancer patient, you too are brave. I have the utmost respect for each of you.
Three years ago my mother was diagnosed with ovarian cancer and the tumor was removed. Over a year ago the cancer metastasized to her liver and she opted not to receive any treatment. The cancer was slow growing until about 6 months ago when we were told it had spread. Since she is not receiving chemo the doctor is not running any tests so we don’t know exactly where.
A few weeks ago, after a physical exam, he determined that the cancer is growing rapidly in her abdomen where the ovary once was. He guessed that the tumor was the size of a small basketball. This is undoubtedly the cause of all of her pain now because it is pressing on so many organs and nerves. It is making it very painful for her to stand up or walk. We are struggling to find the correct doses of medication to stop the pain. She doesn’t like the way she is feeling right now and attributes all of her confusion to the medicine. She is also having terrible nightmares and ‘sees’ and ‘hears’ things that aren’t there. She is filled with overwhelming fear and I’m sure being bedridden doesn’t help.
Last week Hospice told me that they thought that she might have 2 months left, but of course they don't know for sure. I moved in with my mother to help take care of her and we've realized this weekend that she will need someone to sit with her during the day. Tomorrow will be my first day to leave her in 5 days. I don’t want to but I have to trust the sitter that we have chosen. She is the daughter of a woman that sat with my grandmother during her last months so I know that she is more than capable. I’m just feeling that I don’t want to leave. I don’t want to be at work. I want to be here.
I awoke early one morning only a mere week into caring for my mother. I was feeling disjointed and alone. Wondering how I was going to do everything that needed to be done. I began to pray. ‘God this is not about me. This is not about ‘can’ I do it. I will do it because it has to be done. Please give me the strength just as you are giving her the strength to make it through each day. I want to be here and there is no other place I would rather be. Help me to remember that she gave me life and then she gave up hers for me. Help me to make the most of her every waking moment. Whatever is going on in my life is insignificant compared to what is going on in hers. My needs are not first. With your grace please work through me to be all she needs me to be.’
_________________
Dana

csweens · Regular Joined: 02 Apr 2007 Posts: 29

Dana -
What a beautiful prayer - I am moved to tears - it is soooo sums up what it's all abougt - I know God will grant your wish - what a wonderful daughter your mother has raised.

You're in my thoughts and prayers -
Cindy

Danabw

Cindy - Thank you for your prayers, you have mine as well. I just finished reading your posts and you certainly have had a rough time of things. I think that we all need to give ourselves a break sometimes. Not away from the situation but to give ourselves permission to not always be strong. I have what I call 'Howl at the moon moments'. I have a great friend that I sometimes can just let my hair down with and say whatever I am thinking. It is not always logical, but who cares! The situation is still there afterwards but it feels good to just howl.
I can't imagine what you are going through and on top of that having to keep strong for your son as well. You are truly remarkable!
How is your Dad doing this week? AND...how are YOU?
_________________
Dana

csweens · Regular Joined: 02 Apr 2007 Posts: 29

Hi Dana -
Thanks for your kind words - I know what you mean about "howling at the moon" - I've done my fair share in the last couple of months. My Dad is doing pretty good right now - and I'm hanging on - just started with a therapist to try to come up with some coping skills to balance everything - How is your Mom doing? How did you make out with your sitter? Are you coping ok with her there and you at work?
Thanks but I don't feel remarkable - just doing what I have to do......
You and your Mom are still in my thoughts and prayers
Cindy

Danabw

Mom has had a few bad days. Not fun to talk about, but severe constipation followed by a lot of diarrhea. She is horrified at what I've had to do I honestly haven't minded. I'm trying to help her keep her dignity but there are things that just have to be done.
She has been sleeping a lot and dozing off right in the middle of conversations. I've read so much about cancer patients slipping off into comas that I would watch her and just think 'Is this it?'.
This afternoon when I came home she wanted to get up and sit in the sunroom. We sat and talked for over an hour and it was the most lucid conversation we have had in a while.
We have talked all night and watched some tv. I'm afraid to get too excited but I really enjoyed having her back with me more like herself.
The sitter has been pretty good. She comes in at 7:30 so I can get to work at 8:00 and then I relieve her at 3:30. My sister actually spent the night last night so I got to go home and see my 2 cats. It was good to sleep in the bed with them.
I am very fortunate that my boss is allowing me to be flexible. I am staying with Mom on Mondays and Tuesdays and working from here. The rest of the week it is hard to leave her. I just have to have faith that we have chosen the right sitter.
I hope your therapist is able to help you with your stress. It's so easy to say the words about what someone 'should do' but quite different to actually be able to follow the advice.
I'll pray for you and your father and mother tonight. What are their names?
_________________
Dana

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