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Thread: Dad has Stage IV Lung Cancer

  1. #1
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    Dad has Stage IV Lung Cancer

    My dad was diagnosed 2/2/2012 with Stage IV Lung Cancer with METS to the Brain, Spine, Bones, Adrenal Glands, Lymph Nodes, Omentum, ribs (pretty much all over). He is scheduled to begin Whole Brain Radiation on Monday 2/27. His Ondologist gave him a prognosis of 1 - 3 months without Chemo and suggested radiation to reduce complications from the tumors in his brain. The radiologist told us that he has 10 tumors in his brain the size of marbles and a very large mass in his neck (Brain Stem/top of spine). My concern is the radiologist told my father he had 7 months. He told us that the oncologist told us 1 - 3 months to scare my father into doing radiation. He said Oncologists do this a lot to scare patients into treatment. My father is refusing Chemo because he does not want to endure the side effects. His mother passed from Lung Cancer 21 years ago and he does not want to endure what she did so he has made peace with the 1 - 3 months. I found my fathers Oncologist to be very supportive of my dad's decisions and due to the METS thru his body said Radiation to his brain would give him a better quality of life but would not prolong at all. This Radiologist upset me because my father was OK with the 1 - 3 month prognosis. When he heard the 7 months he panicked. Has anyone ever heard of a radiologist changing the prognosis? This guy will not be administering the WBR, he was sitting in for another Radiologist that was out on vacation. On top of all of this my dad had a Heart attack on Sunday 2/19 and refused all life saving measures. He survived it and is now staying with me while he goes thru radiation. He is nervous for radiation because he does not know what to expect. His main hope is to avoid nausea and vomiting. He is ok with losing his hair, but does not want to spend his final months with nausea and vomiting.

    I know I'm rambling, but this is new to me and I'm trying to learn as much as I can to help my father thru the next few weeks.

  2. #2
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    Hello lalle,

    I am so sorry that your Dad is so sick. I am angry that this radiologist was such a *&*(. Your oncologist is correct in his assessment of your Dad's prognosis. I hated being feeling fooled by the treatment team into thinking that my mom had longer than she did. My family doctor was honest with me and I appreciated that. That being said, surviving a heart attacke at this point - he is one tough guy. Expect the worse ad hope for the best - whatever that looks like.

    There really is nothing you need to learn that you don't already know how to do. Be there for him, support his choices, live every day that you have left together. Let your dad know that you are happy to do anything he needs, that he is never being a burden because you feel so helpless that any little thing you can do is better than nothing. That you will be okay and that you love him. You can't be his doctor or his nurse, you can be his daughter - the best one you got.

    Hopefully the radiation will help with the brain mets, but keep an eye out for nausea and vomiting. I suppose it can be a side effect of the rads but, in my experience, it will be the tumours that can cause this. Take it seriously and take your dad in for a check if it happens. It never hurts to make sure.

    Never worry about rambling, I do it all the time and I am almost 2 years out. We are here to listen and help as much as we can. None of us can tell you how long you have left with your dad we can only hope along with you that it is quality time and reassure you that you will, in time, find peace.

    Hugs and hope,

    Lori

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    Hi lalle,

    So so sorry to read about your Dad, Dad's are great (most of the time ))) and they are meant to always be there no matter what. Sounds like you Dad means alot to you and it's sad you have had to come here for answers, bless all your hearts.


    There are lots of lovely people on here to offer you answers to your questions but in all honesty speaking with your Dad's oncologist is the best thing ever. Your Dad can get tablets to control the vomiting if this occurs and also for heart burn as my Mum had heart burn through having radiotherapy. I guess and you no doubt have or are doing, will be sat at your laptop searching through different sites for answers, have been there myself as my Mum also has stage 4 lung cancer. The most important thing now is to be there for your Dad, stop reading and searching and God I know its hard as I have done it too, but it makes no difference really it doesn't. You never ever imagine your Mum or Dad not being there anymore and when things like this happen you panic, you will sit and search, read, look up till all hours of the morning learning about things you should never need to know and for what.......yes knowledge and that's not a bad thing and beacuse you want to help.

    The best thing you can do for your Dad is to be there and spend as much time together. By what you have written your Dad sounds like a great strong man, it will be tough on all of you and I send you my love xxx

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    Hi lalle, Welcome to our Forum but very sorry that you need to be here. I'm sorry to hear about your Dad. I just wanted you and your Dad to know that the side effects from whole brain radiation are not bad. My Dad was also diagnosed with stage 4 and also had mets to the brain. He had 5 whole brain radiation treatments as well as radiation to his right lung. He also did not want chemo, nor was it offered. He wanted to ensure that his time left had some quality. Anyhow...the radiation to his brain caused him to lose about half his hair...it didn't look bad just a little thinned out. About a week after the radiation he found himself more tired and a little weaker. The steroids that they put him on to offset any brain swelling increased his appetite and gave him a little more energy. All in all, he did not regret having the radiation done. It's pretty successful in shrinking brain tumors and having his brain impaired. I know you've travelled this road with your Mother before, but this can't be easy on you or your Dad. I'm sorry that you are once again facing this beast. My Dad stayed with me after he was diagnosed and although it was tough, I wouldn't have traded that time with him for anything in the world. This forum helped me alot and gave me support and advice when I needed it the most. Try to remember that the prognosis a doctor gives is just based on outdated statistical averages and his best guess... everyone responds differently to lung cancer and you just never know how much time is left. Only God knows that for sure. My Dad was given 6 months and we only had 10 weeks with him after he was diagnosed. It's a sad sad journey but we're here if you need to lean on someone. Let us know how he's doing ....God Bless.
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  5. #5
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    Thank you all for your responses. I have found my fathers Oncologist to be very open and honest with us. Unfortunately my dad did live 2 hours away from my home so I need to find another Oncologist. I'm waiting on an appt with him. I needed to have all his records and path reports sent to me to bring with to the new doc and I just finished reading those reports. We've seen the PET scan on CD and saw how much the cancer has spread. It's quite shocking to see all the spots thru out his body. In reading the report, I see more areas that his cancer has spread to. He has mets to his pelvis, liver and pancreas as well as many other areas in his upper body. I don't know how he is not in any more pain now. He really is one tough man. He is currently taking morphine 30mg 2 times a day (time release) Vicodin and also the steroids to control the swelling in the brain. I have noticed that he is confused a lot more and does have some memory problems now. But I swear to look at him and talk with him you would never know what was going on. I do plan on contacting Hospice today to discuss the future. I fear that this will all happen rather quickly, since 2/2 he has lost 20lbs so he is losing weight drastically. The steroids are giving him his appetite back and he is hoping to gain weight back, but I don't think that will happen for him. Again, his biggest fear is pain and burdening his kids. I tell him constantly not to worry about us, we will be fine and that I am happy to take care of him while he goes thru this.

    Today is his first WBR treatment so he is understandably nervous about that. Again, than you all for your kind words.

  6. #6
    Senior User breannishome's Avatar
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    Lalle09,

    I am new to this as well. My mom was diagnosed 2 weeks ago. This will actually be my first reply to someone. I wish you all the best today with your dad and his WBR treatment, hopefully things will go smoothly. Let us know how it goes.
    Breann

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    Well, my father had his first whole brain radiation treatment. Radiologist told him he could eat when he got home, he had a very small bowl of beef stew and within 15 min vomited it all up. Doc told him there would be no vomiting and after 1st treatment he vomits. Is this normal?

  8. #8
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    IMO vomiting and nausea could be a side effect of the radiation. I feel like the doctor shouldn't make blanket statements like that. The internet seems to say that nausea is a less common side effect, but not unheard of. My boyfriend got WBR but didn't get any nausea...but again, he hasn't any nausea with any of his treatments.

    http://www.oncolink.org/experts/arti...?id=2368&ss=21
    Boyfriend, 25, dx'ed Stage IV NSCLC 6/29/11. Malignant pleural effusion, liver/spine/lymph mets. Adenocarcinoma w/unknown primary! So confusing.

    Jul '11: 2 cycles Carboplatin/Alimta (failed)
    Oct '11: Docetaxol/ramucirumab/Xgeva/Neulasta
    Dec '12: Liver met growth
    Jan '13: 10+ brain mets, 2 wks of WBR
    Mar '13: CDK 4/6 inhibitor trial (failed)
    May '13: Tested ROS1+
    June '13: Xalkori clinical trial for ROS1+
    Aug '13: Liver mets gone, lung spots gone. Doing great so far!
    Mar '14: Leptomeningeal progression. Ommaya reservoir put in for intrathecal methotrexate.
    May '14: Tolerating chemo, hoping for good news...

    Blog: http://ros1positive.wordpress.com/

  9. #9
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    Hi lalle, hard to say if the radiation caused the vomiting. It is not usual but it is possible. I could also be a stomach bug or even nerves from all this stress. Mention it to the doctor and they can get him on some anti nausea medication that should work. My Dad never had any nausea. How is he feeling now?
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  10. #10
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    Irish, he is doing better. He did have some toast about 4 hours after the treatment and was fine. My brother is taking him to his treatment today and will ask about the anti nausea meds for him. He's also going to eat a little a few hours before treatment today. He showed me where they did the radiation which was in 3 areas. Whole Brain, middle of spine and tail bone area. My father told me that he told the docs last week when they were doing the planning session that he wasn't sure if he wanted to do the spine at all, but then when he went yesterday he decided to do those areas too. So, the spot for the middle of the spine is right above his stomach. I'm thinking that is what caused the vomiting. I thought they would go thru the back, but they are going from the top of his stomach so I wonder if that's the issue. They also changed his sessions from 10 to 15 total sessions.

  11. #11
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    My father completed is first week of WBR and Radiation to his spine. So far so good, haven't notice any signs of fatigue. Because we moved him from his home 2 hours away to my home, I was able to get him an appt with an oncologist closer to my home. This oncologist suggested that my dad have an injection (can't remember the name of the drug) on Tuesday to help keep his bones strong. Because the cancer has spread to his bones, he is concerned about my father's brittle bones and strongly encouraged him to have the shot. My dad is very afraid of pain and does not want to experience any broken bones so he is going to go ahead with this shot.

    New issue in the last 2 weeks is the onset of hiccups. My dad has these bouts of hiccups every single day for hours on end that he just can't seem to get rid of. The oncologist told him this was very normal for patients with Lung Cancer. Has anyone ever heard of this?
    71 year old Father diagnosed 2/2/2012 with Stage IV Lung Cancer NSCS with METS to the Brain, spine, bones, Adrenal Glands, Lymph Nodes, Liver, Pancreas, omentum.


    Heart Attack 2/19/2012
    Whole Brain Radiation and Radiation to the Spine 2/27/2012 completed 15 sessions on 3/16/2012
    Heart Attack 3/10/2012

    Passed away 3/26/2012[/B] I love you dad, you will be missed.

    http://www.cancerforums.net/threads/...IV-Lung-Cancer

  12. #12
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    Hi Lalle, Good to hear that your Dad is tolerating radiation well. Hiccups are common with lung cancer...I seem to recall seeing some folks with some remedies on this forum before but I can't remember what they used to stop them. I'll check around to see if I can find anything on an older thread for you. They can really be a pain in the butt and hard to deal with. Looks like his doctors are on top of things for him. How are you holding out? God Bless.
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  13. #13
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    Hi Irish,

    Thank you for asking about how I am holding up. I'm doing ok, my brother lives about 10 min away from me so he has been helping out with transporting my dad to radiation. We've been switching days. My sister also drove in from her home (about 4 hours away) to spend the weekend with me and to help out so that I could attend an event with my youngest son. I do have the support of my siblings which is great. My kids are 20 (college) and 17 (Jr in high school). I don't really want to burden them with what is going on in the home, so I don't really ask them for much help and my husband is also helping. I do have a great support system which is good. I am going to be contacting Hospice this week. My father is very much against that, but I don't see how I have a choice. I am going to need their assistance sooner or later. I did have to somewhat scold my dad yesterday which I felt guilty about, but he is really trying to force himself to eat and to exercise (walking thru the house). He told me yesterday he is feeling extremely tired and doesn't understand why he is so tired. He knows the radiation is going to make him fatigued, but he's feeling guilty because all he wants to do is just lay down. I had to tell him that it was ok to lay down and rest. I told him that he needed to do that because all the walking around he was trying to do would fatigue him even more. My scolding was gentle but to the point, I know he doesn't want to burden me with taking care of him but I told him that he needed to just let me do that and stop trying to pretend like he is ok. We all know he is not ok and that he needs his rest. Today starts the 2nd week of whole brain radiation and I can only imagine the side effects from that will get worse this week.
    71 year old Father diagnosed 2/2/2012 with Stage IV Lung Cancer NSCS with METS to the Brain, spine, bones, Adrenal Glands, Lymph Nodes, Liver, Pancreas, omentum.


    Heart Attack 2/19/2012
    Whole Brain Radiation and Radiation to the Spine 2/27/2012 completed 15 sessions on 3/16/2012
    Heart Attack 3/10/2012

    Passed away 3/26/2012[/B] I love you dad, you will be missed.

    http://www.cancerforums.net/threads/...IV-Lung-Cancer

  14. #14
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    Hi lalle, Glad you have a good support system around you to help with your Dad. I know how feel about trying to get your Dad to rest. I wanted to tuck my Dad under my wing and protect him too. What I found was that the more I tried to do for him and the less he was able to do, the more depressed he got. He hated losing his independence. He hated not being able to to be active. He constantly tried not to sleep in the day. I hated nagging him or hovering too close (so did he). We were able to sit down and talk about it and worked out a comprimise. He stayed as active as he was able BUT he also scheduled in an early afternoon nap. With the sheduled nap, he felt more rested and didn't have to fight off nodding off so much. Dad knew that holding onto his weight was important for his survival so he did eat when he didn't feel like it but instead of having 3 main meals a day...he went to 4 or 5 mini meals/snacks with a protein supplement added in. The smaller meals were easier for him to tolerate and we were able to slow down the weight loss a little. I struggled with the issue of moving him over to using a cane...after the radiation, he was unstable on his feet, he tripped easily. I was so worried about him falling that I urged him to use a cane to help him stay stable...I even went out and bought one. It sat around for about 3 weeks before he would use it. (I still have the holes in my tongue from biting it but I didn't nag) After a couple of close calls tripping, he finally picked it up and used it every day but called it his walking stick. He actually grew to like it and used it for everything including pushing the elevator buttons at the hospital. I guess what I am trying to say is that my Dad had lost control of his life after he was diagnosed...It was important that I let him hold on to as much of his independence as possible. As much as I wanted to smother him with kindness, that's not what he needed. He needed to be able to call the shots and make as many decisions for himself as possible. I did draw the line after a solo ATV escapade that got him stuck in a waist deep mudhole in the middle of the forest in a blazing heatwave for 2 hours right after he finished his whole brain radiation. Thought I was going to lose it that day, but looking back on it I'm glad that he was able to live while he was dying. God Bless
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  15. #15
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    Thank you Irish, we talked about that and about him losing his independence. I work full time from home so I am in meetings through out the day. I hear him moving around a lot out there and I'm trying not to hover. He is making his own meals and he does eat many small meals along with drinking ensure or boost. I just want him to know that it is ok for him to rest, he doesn't need to prove to anyone he is ok. He is constantly telling everyone he is in no pain (there is no pain because he is on 30mg of morphine time released 2x a day) and he feels fantastic. But in reality I see him withering away, he's moving much slower now and that's hard for him to accept. He did tell me this morning he is stopping the radiation after today. He doesn't like the way it is making him feel. His mouth feels like it has some sort of layer of bad skin in his cheeks and he has a constant metallic taste in his mouth. This along with the fatigue is more than he agreed to. He is adament that he continue living the way he always does until the end. It breaks my heart that he thinks he can do this. He watched his mother pass from lung cancer, so I know he knows that eventually he may not have the same quality of life as he always has had.

    He asked me this morning what is this radiation he's taking supposed to do? Why is he doing it? I told him what he was told last week that it is to make his quality of life better than what a stroke could do to him. One of the things about me is is that I can't sugar coat (nor does he want me to) and I am fairly blunt. I sat down with him and told him that we will talk with the doctors today about stopping radiation, but before he makes that decision he needs to meet with the doc's first. Basically I layed it out for him and told him he needs to choose the lesser of the 2 evils, basically weigh the good with the bad. Which would be worse, stroke or seizure which could cause parylisis or fatigue?

    I did talk with the doctor today and we are meeting with him before his radiation today. The doctor believes that he has a fungal infection in his mouth and that is what is causing his mouth issues and the metalic taste. This can be easily rectified with an oral anti biotic. On top of this my father is receiving an injection tomorrow for his bones. His cancer has spread to many of the bones in his body (ribs, hips, legs, arms) and they are concerned that he may fall and break a bone (brittle bones) so this injection will be to strengthen the bones. The major side effect with this injection is extreme fatigue. So either way, he will be fatigued.

    He did ask me today that if he stopped radiation how long would it take before he were to have a stroke? Again, heart breaking because I had to tell him that no one could ever really answer that question. He is really thinking long and hard about his options and doesn't want to burden me with him being fatigued. No matter how many times I tell him he is not a burden he still believes he is.

    I'm hoping that our doctors visit today will give him more information to make his decision.
    71 year old Father diagnosed 2/2/2012 with Stage IV Lung Cancer NSCS with METS to the Brain, spine, bones, Adrenal Glands, Lymph Nodes, Liver, Pancreas, omentum.


    Heart Attack 2/19/2012
    Whole Brain Radiation and Radiation to the Spine 2/27/2012 completed 15 sessions on 3/16/2012
    Heart Attack 3/10/2012

    Passed away 3/26/2012[/B] I love you dad, you will be missed.

    http://www.cancerforums.net/threads/...IV-Lung-Cancer

  16. #16
    Senior User breannishome's Avatar
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    Hey Lall09,

    It's nice you have a good support system. My sister, up and moved to Florida from North Carolina a week after finding out our mom had cancer. This only leaves me behind to take care of her, its not so bad at this point though, she even still works when she dosn't have doctors apts. or tests....we havn't started any kind of treatment yet so that might make a difference.

    Like your father, and im sure many others, my mom is also worried about being a burden. She is 70 and I am 26. She almost passed up dialysis because what we all experienced with her mom, until she learned she qualified for PD, which is the kind you can do at home. Even though it was tough for us, we have had the conversation about how much time and effort its going to take but in the end how much it would be worth, having her around as long as we can. I too will support her decisions as long as it's not her just giving up...until, well...

    If you don't mind me asking, what part of his spine was affected?

    You sound like you are taking good care of him. Hope you have a good evening. -Breann
    I'm 26 Female Caregiver to 71yo. Mom on PD dialysis
    Lung Cancer diagnosed 2/10/2012
    Squamous Cell Lung Carcinoma 3b (4.7cm) 3/14/2012
    Start low dose Chemo 3/21/12 every wk for 7 wks. & 2 hi dose 3wks
    Start Radiation 7 wks.
    Switch PDialysis to Hemo. 3times wk/4.5hrs. each
    Hospitalized 3 diff. weeks. double infection, hemorg,pneumonia,cong.heart failure.
    NED 6/21/12
    Switch Hemo. to PDialysis
    Entire lung recur 9/26/12
    Every other scan is opposite.
    She feels GREAT so that's what counts!

  17. #17
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    Hi Lalle, God my heart goes out to you both. My Dad was alot like your Dad...didn't want to be a burden and to us...quality of his remaining life was more important than gaining extra time. He only went for the radiation to shrink the tumors. It shrunk the brain tumor but didn't slow down the lung tumor. He would not even consider chemo. It's so hard to watch a parent wither away. My Dad was always so big and strong and to see that change was heartbreaking. Hang in there...you're doing all the right things and then some. Like you, I believe in total honesty..after all it's their life. I'm glad that your Dad is not in pain..thank God that we now have effective pain killers for this. I understand that once it goes to the bones it could be quite painful. God Bless his heart for trying his best to be ok. Please let us know how the doctor's app't went today. Prayers for you both..God bless
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  18. #18
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    breannishome, to answer you question about what part of his spine is affected. He has 3 large masses in his spine, one at the tail bone, one in the middle of the spine and then the largest mass is at the very tip by his brain stem. That one is the one they are most concerned about.

    Irish, his appt went well today. The doctor said he has Thrush so they gave him meds to take care of that. He's also having acid reflux so they gave him meds to help with that too. After talking with the doc today, my dad says he will probably finish the radiation this week. He's not sure he will go for a 3rd week of treatments. He did ask the doctor what's the point of all the radiation and the doc pretty much said what I've been telling him. Except this time he said, if you give up now, you will have all the side effects with no benefits at all. That statement right there made him think about it. He said he feels much better today about the radiation. But who knows what he will feel at the end of the week. We will see.

    He's feeling pretty good right now, had me stop at McDonalds to get him a Hamburger and a strawberry shake. He totally forgot about the thrush and unfortunately it didn't taste quite as good as he was hoping it would taste. So I will need to take him again next week after this thrush is gone.
    71 year old Father diagnosed 2/2/2012 with Stage IV Lung Cancer NSCS with METS to the Brain, spine, bones, Adrenal Glands, Lymph Nodes, Liver, Pancreas, omentum.


    Heart Attack 2/19/2012
    Whole Brain Radiation and Radiation to the Spine 2/27/2012 completed 15 sessions on 3/16/2012
    Heart Attack 3/10/2012

    Passed away 3/26/2012[/B] I love you dad, you will be missed.

    http://www.cancerforums.net/threads/...IV-Lung-Cancer

  19. #19
    Senior User breannishome's Avatar
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    Thanks for the update lalle. I was curious cause my mom goes for a spine MRI Wed. and I was wondering if it liked a certain part of the spine....well....maybe not.

    I guess sometimes its easier to see things when the doctor tells you instead of other people....esp. the people you feel like your a burden too.

    At least your dad WANTED something to eat, even though it didn't turn out to be all that great. I am guessing thursh changes the way things taste.

    Take care...talk soon.
    Breann
    I'm 26 Female Caregiver to 71yo. Mom on PD dialysis
    Lung Cancer diagnosed 2/10/2012
    Squamous Cell Lung Carcinoma 3b (4.7cm) 3/14/2012
    Start low dose Chemo 3/21/12 every wk for 7 wks. & 2 hi dose 3wks
    Start Radiation 7 wks.
    Switch PDialysis to Hemo. 3times wk/4.5hrs. each
    Hospitalized 3 diff. weeks. double infection, hemorg,pneumonia,cong.heart failure.
    NED 6/21/12
    Switch Hemo. to PDialysis
    Entire lung recur 9/26/12
    Every other scan is opposite.
    She feels GREAT so that's what counts!

  20. #20
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    First off Lalle, as a fellow lung cancer patient, your dad is in my prayers. I hope that the docs are ale to keep his pain low and honor his wishes to provide a little better quality of life. Secondly do you or anyone know when they decide to use radiation as a treatment. I am stage IV with some mets to lymphs, both lungs, pleural cavity, but my docs have not talked about radiation at all. Please let your dad know everyone here is praying and pulling for him to live out his time comfortably and happily.

 
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