Question about stage 3 or 4 quality of daily lives

MichelleP
MichelleP Member Posts: 254
edited March 2014 in Lung Cancer #1
I haven't been on this board very long, but reading many posts from people with stage 4 nsclc I see that many are actually leading fairly normal lives. The reason I'm posting this question is because my husband was just diagnosed with stage 3 lung cancer yet he lives in bed most all the time and can barely walk two feet. I don't understand the difference here. Can anyone help me understand why this can be?
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Comments

  • ARobben
    ARobben Member Posts: 46
    Other things to look for
    Has he begun chemotherapy yet? Chemo can affect different people differently and at different times.

    Another thing that comes to mind for me, because of my personal experience, is Pulmonary Embolisms (blood clots in the lungs). When I was diagnosed with Cancer (Stage 4 NSCLC), I was diagnosed with Pulmonary Embolisms a few days later. The doctors informed me that lung cancer did not typically present with the sort of extreme shortness of breath and fatigue that I was experiencing. I was put on blood thinner for six months which helped to clear up the clots. This is something I may ask your doctor about. They have to do a special CT scan with contrast to detect the Embolisms. They can be easily overlooked if you're not specifically looking for them.

    Just a thought. Hope this helps!
  • MichelleP
    MichelleP Member Posts: 254
    ARobben said:

    Other things to look for
    Has he begun chemotherapy yet? Chemo can affect different people differently and at different times.

    Another thing that comes to mind for me, because of my personal experience, is Pulmonary Embolisms (blood clots in the lungs). When I was diagnosed with Cancer (Stage 4 NSCLC), I was diagnosed with Pulmonary Embolisms a few days later. The doctors informed me that lung cancer did not typically present with the sort of extreme shortness of breath and fatigue that I was experiencing. I was put on blood thinner for six months which helped to clear up the clots. This is something I may ask your doctor about. They have to do a special CT scan with contrast to detect the Embolisms. They can be easily overlooked if you're not specifically looking for them.

    Just a thought. Hope this helps!

    ARobbin
    Thank you so much for mentioning this to me. I will be seeing the oncologist on July 7th and I will be sure to ask him about this. The odd thing about my husbands cancer is that even though he is a senior, his health was great and he was working out at the gym 3-4 days a week. The only indication we had before his diagnosis was a occasional cough that did not seem to go away. Once I took him to the doctor it's been one nightmare after another and this all started a couple months ago. I sincerely appreciate your adivce ARobben and I wish you all the best in your recovery!
  • Jager
    Jager Member Posts: 32
    Hi MichelleP
    Where in the lung is the tumor located?

    My shortness of breath was caused because the tumor is blocking one of my lung lobes.

    Is he under kemo? That also affects you for a few days after every kemo.

    Another reason could be that his inmune system is compromised fighting.

    You need to ask for a complete blood test and with it his doctor can check his red/white cell account, if there is any infection or any other problem that can be treated.

    I tell you this because my doctor ask me for one of this blood examinations every time I go to see her and she can even tell if I am smoking or not (even if I try to cheat), she can detect everything and prescribe me some medication to boost me up again.
  • MichelleP
    MichelleP Member Posts: 254
    Jager said:

    Hi MichelleP
    Where in the lung is the tumor located?

    My shortness of breath was caused because the tumor is blocking one of my lung lobes.

    Is he under kemo? That also affects you for a few days after every kemo.

    Another reason could be that his inmune system is compromised fighting.

    You need to ask for a complete blood test and with it his doctor can check his red/white cell account, if there is any infection or any other problem that can be treated.

    I tell you this because my doctor ask me for one of this blood examinations every time I go to see her and she can even tell if I am smoking or not (even if I try to cheat), she can detect everything and prescribe me some medication to boost me up again.

    Jager...we don't know
    Jager...we don't know exactly where the tumor is located yet. We won't see the onc till July 20th. All I do know for sure is that it's outside of the lung because be had what they call malignant plueral effusion. He is taking chemo of Gemzar/Carbo. We've just begun this journey and he has only had about four treatments. And yes it totally zaps his blood counts. In fact, we are going for 3 units of blood again tomorrow and he is on Prednisone again.
  • Jager
    Jager Member Posts: 32
    MichelleP said:

    Jager...we don't know
    Jager...we don't know exactly where the tumor is located yet. We won't see the onc till July 20th. All I do know for sure is that it's outside of the lung because be had what they call malignant plueral effusion. He is taking chemo of Gemzar/Carbo. We've just begun this journey and he has only had about four treatments. And yes it totally zaps his blood counts. In fact, we are going for 3 units of blood again tomorrow and he is on Prednisone again.

    Hi MichelleP
    I obviously don´t know if you have insurance as this medication is very expensive, $2500.00 USD a shot here in Mexico but it is really good to help his inmune system to hold on kemo attacks, the name is Neulastim, it is made by Roche.

    As I said to ARobben in another post, recently they changed this medication for another one named Bioclin or Biocilin (I promise I will give you the name as soon as I return home), it seems to be cheaper but for me it was a really good change from Neulastim, my oncologist prescribed me one shot for 7 days after kemo and I did great, still some tired for a few days but nothing compared to past experiences, I was able to assist my wife at hospital, to be there when my new baby came to this world and to deal with doctors, medications, to carry them home and assist them the first days when wife was not able to move.

    I am mentioning this because I have a blood test a week after kemo and two days before next one, all leucocites (don´t know if it is written right) and the important things the oncologist check are always above the normal-maximum level (which seems to be good) as first I started kemo with Alimta/Cisplatin, then, after a treatment she gave me (with medications I told you above), she added Avastin to the misture and I am doing fine.

    I am taking my kemo every 4 weeks and something I have noticed is that after 3rd week I started to feel a little tired until next kemo. Doctor said that I am supposed to take my kemos every 3 weeks but that means to loose more than half my income and I can´t afford that as I am paying my home, my car, my retirement founds and a lot of things you get for your family. Many people would say money or possesions are not worth it and I already considered that but my feeling is: If I am going to die, I don´t want to leave my family in poberty, so I choosed to keep working as I am strong as usual and to get my kemos every 4 weeks. I can stand a week or a few days of the week feeling a little tired

    I receive Prednisone only for 3 days, one the night before kemo, then two days after kemo and that´s all.

    Cheers

    Mario
  • MichelleP
    MichelleP Member Posts: 254
    Jager said:

    Hi MichelleP
    I obviously don´t know if you have insurance as this medication is very expensive, $2500.00 USD a shot here in Mexico but it is really good to help his inmune system to hold on kemo attacks, the name is Neulastim, it is made by Roche.

    As I said to ARobben in another post, recently they changed this medication for another one named Bioclin or Biocilin (I promise I will give you the name as soon as I return home), it seems to be cheaper but for me it was a really good change from Neulastim, my oncologist prescribed me one shot for 7 days after kemo and I did great, still some tired for a few days but nothing compared to past experiences, I was able to assist my wife at hospital, to be there when my new baby came to this world and to deal with doctors, medications, to carry them home and assist them the first days when wife was not able to move.

    I am mentioning this because I have a blood test a week after kemo and two days before next one, all leucocites (don´t know if it is written right) and the important things the oncologist check are always above the normal-maximum level (which seems to be good) as first I started kemo with Alimta/Cisplatin, then, after a treatment she gave me (with medications I told you above), she added Avastin to the misture and I am doing fine.

    I am taking my kemo every 4 weeks and something I have noticed is that after 3rd week I started to feel a little tired until next kemo. Doctor said that I am supposed to take my kemos every 3 weeks but that means to loose more than half my income and I can´t afford that as I am paying my home, my car, my retirement founds and a lot of things you get for your family. Many people would say money or possesions are not worth it and I already considered that but my feeling is: If I am going to die, I don´t want to leave my family in poberty, so I choosed to keep working as I am strong as usual and to get my kemos every 4 weeks. I can stand a week or a few days of the week feeling a little tired

    I receive Prednisone only for 3 days, one the night before kemo, then two days after kemo and that´s all.

    Cheers

    Mario

    Thank you Jager....I will
    Thank you Jager....I will certainly check into these medications. I appreciate your help with this issue. My husband also takes prednisone but 21 out of 30 days a week.

    Good luck to you and I will keep you and your family in my prayers! Keep in touch and let me know how you're doing?

    Michelle
  • Jager
    Jager Member Posts: 32
    MichelleP said:

    Thank you Jager....I will
    Thank you Jager....I will certainly check into these medications. I appreciate your help with this issue. My husband also takes prednisone but 21 out of 30 days a week.

    Good luck to you and I will keep you and your family in my prayers! Keep in touch and let me know how you're doing?

    Michelle

    Seems you are online, hope you read this soon
    it Seems neulastim is not available in the USA but I found a website in english that explain everything very clear so you can check the main ingredient of the formula and ask your doctor for a medication available in the US with same ingredient.

    check this link please, very clear and illustrative.

    http://www.medsafe.govt.nz/Consumers/cmi/n/neulastim.htm

    Cheers


    Mario
  • stayingcalm
    stayingcalm Member Posts: 650
    Jager said:

    Seems you are online, hope you read this soon
    it Seems neulastim is not available in the USA but I found a website in english that explain everything very clear so you can check the main ingredient of the formula and ask your doctor for a medication available in the US with same ingredient.

    check this link please, very clear and illustrative.

    http://www.medsafe.govt.nz/Consumers/cmi/n/neulastim.htm

    Cheers


    Mario

    Neulastim = Neulasta
    Here, its Neulasta - similar name; its a shot that helps rebuild the blood cells that chemo and radiation deplete. Very expensive. I was lucky enough to be in a clinical trial and the trial drug company paid for everything. I think there are programs to assist with payment, though.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788

    Neulastim = Neulasta
    Here, its Neulasta - similar name; its a shot that helps rebuild the blood cells that chemo and radiation deplete. Very expensive. I was lucky enough to be in a clinical trial and the trial drug company paid for everything. I think there are programs to assist with payment, though.

    Neulasta
    Neulasta is a white blood cell count builder, as far as I know, and a subset, if you will, of Neupogen. Neulasta is a short-term fix while Neupogen is expected to last much longer.

    I was injected with Neupogen rather than Neulasta when my WBC count was too low to do chemo as they wanted a more 'enduring' positive effect. As I recall, the Neulasta shot is good for a day or two, while the Neupogen shot is good for a couple of weeks, although the side effects are also purportedly more acute (I had no problems).

    I am not sure this helps.

    By the way, and I am only going to say this once and hope that it does not seem untoward: the woman in that photo, stayingcalm, is truly a beautiful woman.

    Take care,

    Joe
  • Jager
    Jager Member Posts: 32

    Neulasta
    Neulasta is a white blood cell count builder, as far as I know, and a subset, if you will, of Neupogen. Neulasta is a short-term fix while Neupogen is expected to last much longer.

    I was injected with Neupogen rather than Neulasta when my WBC count was too low to do chemo as they wanted a more 'enduring' positive effect. As I recall, the Neulasta shot is good for a day or two, while the Neupogen shot is good for a couple of weeks, although the side effects are also purportedly more acute (I had no problems).

    I am not sure this helps.

    By the way, and I am only going to say this once and hope that it does not seem untoward: the woman in that photo, stayingcalm, is truly a beautiful woman.

    Take care,

    Joe

    Neulastim
    Hi Soccerfreaks, good afternoon.

    I know for sure Neulastim is good for a week according to my doctor, that´s the reason for her to prescribe 7 (1 every day) shots of the other medication when neulastim was not available at the hospital.

    Now, a week is the lapse of time when kemo chemicals are in your blood torrent (at least, the time when it is more concentrated) so it helps, I know it is expensive but as I stated in my first post, I don´t know if they have insurance or free medications as I am Mexican and don´t know the american Health system.

    Now, something that I am thinking about, the fatigue that people feel is because the medication is in their blood torrent and killing good and bad cells. Now, with my first kemo I had this tireness just for 3 or 4 days (with Neulastim shot included), after that, I felt as strong as healthy like before the disease so recovering or keeping your white blood cells count in the high levels is usefull to keep the fatigue away?

    Some other major point to consider here is the psicological side of the disease Michelle. When diagnosed I was so affected that first week I spend it laying in the couch in my living room, felt really tired, wasted as some may say. I analized the situation and after a month, I did find some curious stuffs, when at home thinking only in my disease, I felt tired and wanting to do nothing else than been at home but when the time came to go back to work, I felt really fine as to go offshore for 14 days and I spent this time working, busy and not thinking about cancer so I think my mind was playing tricks, you know, at home everybody was aware of the illness, everybody was paying attention to me, I assumed the victims role and my body started to react that way.

    Talk to his doctor, if there is not a medical explanation for this problem, it may be good to try to get him out of bed for short periods of time and to try to do other things together (no need to be physical demanding) as playing a board game, sitting in the front yard, go out in the car to nowhere, you know, just to get him out of your home to see other people, new constructions, nature, going to a far starbucks to get a coffe and a piece of cake, etc. that can distract his mind from mind traps.

    Just my 2 cents.

    Cheers

    Mario
  • stayingcalm
    stayingcalm Member Posts: 650

    Neulasta
    Neulasta is a white blood cell count builder, as far as I know, and a subset, if you will, of Neupogen. Neulasta is a short-term fix while Neupogen is expected to last much longer.

    I was injected with Neupogen rather than Neulasta when my WBC count was too low to do chemo as they wanted a more 'enduring' positive effect. As I recall, the Neulasta shot is good for a day or two, while the Neupogen shot is good for a couple of weeks, although the side effects are also purportedly more acute (I had no problems).

    I am not sure this helps.

    By the way, and I am only going to say this once and hope that it does not seem untoward: the woman in that photo, stayingcalm, is truly a beautiful woman.

    Take care,

    Joe

    :)
    Thanks, Joe, that's a sweet thing to say! Me about a year ago and a happy accident of computer-screen backlighting is all.
  • MichelleP
    MichelleP Member Posts: 254
    Jager said:

    Neulastim
    Hi Soccerfreaks, good afternoon.

    I know for sure Neulastim is good for a week according to my doctor, that´s the reason for her to prescribe 7 (1 every day) shots of the other medication when neulastim was not available at the hospital.

    Now, a week is the lapse of time when kemo chemicals are in your blood torrent (at least, the time when it is more concentrated) so it helps, I know it is expensive but as I stated in my first post, I don´t know if they have insurance or free medications as I am Mexican and don´t know the american Health system.

    Now, something that I am thinking about, the fatigue that people feel is because the medication is in their blood torrent and killing good and bad cells. Now, with my first kemo I had this tireness just for 3 or 4 days (with Neulastim shot included), after that, I felt as strong as healthy like before the disease so recovering or keeping your white blood cells count in the high levels is usefull to keep the fatigue away?

    Some other major point to consider here is the psicological side of the disease Michelle. When diagnosed I was so affected that first week I spend it laying in the couch in my living room, felt really tired, wasted as some may say. I analized the situation and after a month, I did find some curious stuffs, when at home thinking only in my disease, I felt tired and wanting to do nothing else than been at home but when the time came to go back to work, I felt really fine as to go offshore for 14 days and I spent this time working, busy and not thinking about cancer so I think my mind was playing tricks, you know, at home everybody was aware of the illness, everybody was paying attention to me, I assumed the victims role and my body started to react that way.

    Talk to his doctor, if there is not a medical explanation for this problem, it may be good to try to get him out of bed for short periods of time and to try to do other things together (no need to be physical demanding) as playing a board game, sitting in the front yard, go out in the car to nowhere, you know, just to get him out of your home to see other people, new constructions, nature, going to a far starbucks to get a coffe and a piece of cake, etc. that can distract his mind from mind traps.

    Just my 2 cents.

    Cheers

    Mario

    Thank you Jager...I will
    Thank you Jager...I will talk to the docs about this medication as soon as I can. If it's expensive no doubt the insurance company will deny it to us though. They seem to be denying everything lately including nausea and sleep meds. The doctor had ordered nursing, physical therapy and a home health aide to help. They each were allowed three visits and put in a new request for additional. That was over a month ago and we're still waiting. It's so sad to know that my husband dedicated 42 years of his life to NASA and this is the insurance they give him? Medicare won't pay anything unless he agrees to hospice which he won't because he's still in total denial. I tried talking to him about the prognosis and he cut me off immediately saying he didn't want to discuss it....so we won't.
  • MichelleP
    MichelleP Member Posts: 254

    Neulasta
    Neulasta is a white blood cell count builder, as far as I know, and a subset, if you will, of Neupogen. Neulasta is a short-term fix while Neupogen is expected to last much longer.

    I was injected with Neupogen rather than Neulasta when my WBC count was too low to do chemo as they wanted a more 'enduring' positive effect. As I recall, the Neulasta shot is good for a day or two, while the Neupogen shot is good for a couple of weeks, although the side effects are also purportedly more acute (I had no problems).

    I am not sure this helps.

    By the way, and I am only going to say this once and hope that it does not seem untoward: the woman in that photo, stayingcalm, is truly a beautiful woman.

    Take care,

    Joe

    Joe, is there a shot for red
    Joe, is there a shot for red blood cells too? All of his counts were at a dangerous level last Tuesday. He just had 3 units of blood on Thursday...plus prednisone at home.
  • wicker_woman
    wicker_woman Member Posts: 19
    MichelleP said:

    Joe, is there a shot for red
    Joe, is there a shot for red blood cells too? All of his counts were at a dangerous level last Tuesday. He just had 3 units of blood on Thursday...plus prednisone at home.

    Procrit is the shot for red
    Michelle,

    I'm a Stage III-B NSCL - Large Cell suvivor. During my treatment my red blood cells count was always low and I would get a shot of Procrit just about every time I completed chemo. After my surgrey I had to have a trasfusion also.
  • MichelleP
    MichelleP Member Posts: 254

    Procrit is the shot for red
    Michelle,

    I'm a Stage III-B NSCL - Large Cell suvivor. During my treatment my red blood cells count was always low and I would get a shot of Procrit just about every time I completed chemo. After my surgrey I had to have a trasfusion also.

    When he went for blood tests
    When he went for blood tests last week they did give him a shot, maybe it was Procrit.....I'll ask. Following that shot we did have to go for another 3 units of blood. Seems like we have to do that following all chemo's.

    Wicker....I added you as a friend here. I really was inspired reading about your journey and it gives me hope for my husband. Thanks!
  • wicker_woman
    wicker_woman Member Posts: 19
    MichelleP said:

    When he went for blood tests
    When he went for blood tests last week they did give him a shot, maybe it was Procrit.....I'll ask. Following that shot we did have to go for another 3 units of blood. Seems like we have to do that following all chemo's.

    Wicker....I added you as a friend here. I really was inspired reading about your journey and it gives me hope for my husband. Thanks!

    Friend List
    Michelle,

    I'm happy that I can share my journey with you and others on this site. As I said when I was diagnosed almost 8 years ago I was looking for hope and really did not find much. I owe my life to those that took a chance on me at Vanderbilt. If you have any questions, please e-mail me here on the site and I will try and help.

    Marilynn
  • Jager
    Jager Member Posts: 32
    MichelleP said:

    Thank you Jager...I will
    Thank you Jager...I will talk to the docs about this medication as soon as I can. If it's expensive no doubt the insurance company will deny it to us though. They seem to be denying everything lately including nausea and sleep meds. The doctor had ordered nursing, physical therapy and a home health aide to help. They each were allowed three visits and put in a new request for additional. That was over a month ago and we're still waiting. It's so sad to know that my husband dedicated 42 years of his life to NASA and this is the insurance they give him? Medicare won't pay anything unless he agrees to hospice which he won't because he's still in total denial. I tried talking to him about the prognosis and he cut me off immediately saying he didn't want to discuss it....so we won't.

    Update
    Michelle,

    The other medication I receive is named Biocilin, as usual (it seems) it is not available with that name in the US, the component is "Filgrastim". I found it in the USA as Neupogen (filgratim) in the web, don´t know if that is the laboratory or comercial name.

    It seems to be cheaper with great effects compared to Neulastim, but I don´t know for sure.

    Cheers

    Mario
  • looch969
    looch969 Member Posts: 27

    Friend List
    Michelle,

    I'm happy that I can share my journey with you and others on this site. As I said when I was diagnosed almost 8 years ago I was looking for hope and really did not find much. I owe my life to those that took a chance on me at Vanderbilt. If you have any questions, please e-mail me here on the site and I will try and help.

    Marilynn

    Information on Vanderbilt

    Marilynn,

    What treatment did you receive? Was it a clinical trial? I have stage IV Non Small Cell Lung Cancer both lungs with mets in right rib, shoulder & lower back.

    Tomorrow will be my second round of chemo. I receive Carboplatin, Alimtra & Avastin. Any information you can give me will be greatly appreciated.

    Thanks,


    Tamie
  • Jager
    Jager Member Posts: 32

    Neulasta
    Neulasta is a white blood cell count builder, as far as I know, and a subset, if you will, of Neupogen. Neulasta is a short-term fix while Neupogen is expected to last much longer.

    I was injected with Neupogen rather than Neulasta when my WBC count was too low to do chemo as they wanted a more 'enduring' positive effect. As I recall, the Neulasta shot is good for a day or two, while the Neupogen shot is good for a couple of weeks, although the side effects are also purportedly more acute (I had no problems).

    I am not sure this helps.

    By the way, and I am only going to say this once and hope that it does not seem untoward: the woman in that photo, stayingcalm, is truly a beautiful woman.

    Take care,

    Joe

    Hey Joe!
    in the end it turned to be that the "other" medication I have been talking about is the same you are talking about in this post, it´s just that it has a different name in the USA.

    Yes, this one has been better for me and it seems to be cheaper than Neulastim.

    What puzzled me is that you said that you receive only one shot for 21 days? I am receiving one shot every 24 hours for seven days after kemo day.

    It worked great for me and will ask for this one tomorrow instead of neulastim.

    Tomorrow is going to be my 4 kemo session, waiting for it as I am not feeling at 100% today. It may be that my kemo must be every 3 weeks and I am taking it every four so last 2 or 3 days I start to feel tired and achy but tomorrow will return to normal as it had happened before.

    See you later mate.

    Mario
  • Jager
    Jager Member Posts: 32

    Neulasta
    Neulasta is a white blood cell count builder, as far as I know, and a subset, if you will, of Neupogen. Neulasta is a short-term fix while Neupogen is expected to last much longer.

    I was injected with Neupogen rather than Neulasta when my WBC count was too low to do chemo as they wanted a more 'enduring' positive effect. As I recall, the Neulasta shot is good for a day or two, while the Neupogen shot is good for a couple of weeks, although the side effects are also purportedly more acute (I had no problems).

    I am not sure this helps.

    By the way, and I am only going to say this once and hope that it does not seem untoward: the woman in that photo, stayingcalm, is truly a beautiful woman.

    Take care,

    Joe

    Hey Joe!
    Sorry, posted twice same comments, lol.

    Mario