Wife of lung cancer patient

banjo
banjo Member Posts: 4
edited March 2014 in Caregivers #1
Hi,
I'm new here and feel the need of hearing from other spouses of lung cancer victims. My husband was diagnosed in December with lung cancer which had spread to his brain. He underwent 6 radiation treatments with no side effects. Then he started chemo, an every three week dosage of taxol and carboplatin. Now, facing the 4th treatment this week, he is struggling to keep up his appetite and fight the loss of energy. WHile he is still going to the office daily, he is SO tired and spends weekends in his recliner. This upsets me to see him and feel totally helpless. WHile he is insistent I maintain my life and activites, I feel so guilty if I get out and have a good time.
How do you all deal with the side effects of chemo? When does it get better? I need to hear good survivor stories and helpful ideas for maintaining "me" to help him.
Thanks much
Banjo

Comments

  • MarineMom1955
    MarineMom1955 Member Posts: 2
    #2
    Hi, Banjo,
    I'm new here, too. My husband who is 48, was diagnosed with lung cancer last June, 2002. He went through 5 months of chemotherapy and 6-1/2 weeks of radiation treatments on a daily basis. He was so sick he couldn't work and hasn't been back to work since. One thing I will recommend for appetite is Megestrol Oral. My husband, Steve, got so bad with eating and the Megestrol made a huge difference.
    Unfortunately, the day we found out he had pretty much beaten the lung cancer, we also found out it has spread to his brain. That was devastating. He went through more radiation, whole brain because there are 3 tumors and was placed on Dexamethasone (steroids). They lowered his immune system to the point where he ended up with pneumonia so serious that the docs told me he wasn't going home. Well, he came home but he's not the same.
    They've told me that there's not much else they can do so we are at home together, waiting. I envy you in a way, having an outside life. I worked for a couple of months but had to take an indefinite leave almost 2 months ago. Getting out just to go to the store is almost impossible. But one piece of advice: DON'T feel guility...it's not your fault. I've been living with guilt and everything else that comes with this illness for almost a year. I'm still here because I love him so much that I won't let myself fall apart.
    Talk to your doctors about the Megestrol Oral for the appetite and just love him as much as you can. My husband's favorite thing right now is a large Dairy Queen ice cream dipped in chocolate. And since there isn't much else I can give him right now, he gets it whenever he wants!
    Hang in there and feel free to email me. Maybe we can support each other as friends.
    Sincerely,

    Jana
  • banjo
    banjo Member Posts: 4
    #3
    MarineMom1955 said:

    Hi, Banjo,
    I'm new here, too. My husband who is 48, was diagnosed with lung cancer last June, 2002. He went through 5 months of chemotherapy and 6-1/2 weeks of radiation treatments on a daily basis. He was so sick he couldn't work and hasn't been back to work since. One thing I will recommend for appetite is Megestrol Oral. My husband, Steve, got so bad with eating and the Megestrol made a huge difference.
    Unfortunately, the day we found out he had pretty much beaten the lung cancer, we also found out it has spread to his brain. That was devastating. He went through more radiation, whole brain because there are 3 tumors and was placed on Dexamethasone (steroids). They lowered his immune system to the point where he ended up with pneumonia so serious that the docs told me he wasn't going home. Well, he came home but he's not the same.
    They've told me that there's not much else they can do so we are at home together, waiting. I envy you in a way, having an outside life. I worked for a couple of months but had to take an indefinite leave almost 2 months ago. Getting out just to go to the store is almost impossible. But one piece of advice: DON'T feel guility...it's not your fault. I've been living with guilt and everything else that comes with this illness for almost a year. I'm still here because I love him so much that I won't let myself fall apart.
    Talk to your doctors about the Megestrol Oral for the appetite and just love him as much as you can. My husband's favorite thing right now is a large Dairy Queen ice cream dipped in chocolate. And since there isn't much else I can give him right now, he gets it whenever he wants!
    Hang in there and feel free to email me. Maybe we can support each other as friends.
    Sincerely,

    Jana

    Hi Jana,
    Thanks SO much for your response and we will definitely speak to our oncologist Thursday about the Megestrol Oral. Is it OTC or Rx?
    Yes, I know I am fortunate that my husband can go to the office daily and that I can get out and about. It is a horrific disease and we are fortunate to have so much.
    My heart goes out to you and your hubby......it is so devastating to sit and watch a loved one suffering.
    On another tact, this site is so new and I am not sure how to email you direct or if you want to do that. Maybe this site is preferable. Let me know.
    I'm not even sure I'm responding to your reply!! COmputering is NOt my thing!!
    Keepin touch and together we can figure this all out..........maybe!!
    Marcia (Banjo)
  • MarineMom1955
    MarineMom1955 Member Posts: 2
    #4
    banjo said:

    Hi Jana,
    Thanks SO much for your response and we will definitely speak to our oncologist Thursday about the Megestrol Oral. Is it OTC or Rx?
    Yes, I know I am fortunate that my husband can go to the office daily and that I can get out and about. It is a horrific disease and we are fortunate to have so much.
    My heart goes out to you and your hubby......it is so devastating to sit and watch a loved one suffering.
    On another tact, this site is so new and I am not sure how to email you direct or if you want to do that. Maybe this site is preferable. Let me know.
    I'm not even sure I'm responding to your reply!! COmputering is NOt my thing!!
    Keepin touch and together we can figure this all out..........maybe!!
    Marcia (Banjo)

    Marcia,
    my email address is marinemom1955@yahoo.com
    Drop me an email and we can communicate through there.
    The Megestrol Oral is by prescription but is relatively inexpensive if you have insurance coverage for Rx.
    Glad I could help in some small way.

    Jana
  • rosie43539
    rosie43539 Member Posts: 55
    #5
    Hi Banjo, I don't have any experience with lung cancer, but I do have experience with taxol & carboplatin. I am a 2 1/2 year survivor of ovarian cancer and those are the same medicines that I took. Unfortunatly, my husband was diagnosed with Stage IV Renal Cell Cancer with mets to the lung and liver almost 11 months ago. So I have seen both sides of the coin. He too has trouble with weight loss and loss of appetite. He took the medicine that Mariesmom suggested but is on something now called Oxandrin and he is eating great. I also make protein shakes for him. 3 scoops vanilla ice cream, 1/4 cup of powdered milk, 1/2 to 2/3 cup whole milk and the flavoring of his choice. Blend it until smooth and it taste great. Try 2 TBSB peanut butter, it adds 8 more grams of protien. Without it still has almost 15 grams. My husband hates the taste of Boost and Ensure, this has no vitamin taste.Also the taxol annd carboplatin wore me to a frazzle, I was on the same 2 week schedule as your husband. Took my blood counts down very low especially the platlet count. E-mail me if you want to, my regular e-mail address is rosie5053@yahoo.com I hope everything goes well. Good Luck!
    Love and Prayers rosie
  • vperarson
    vperarson Member Posts: 2
    #6
    I'm a wife of small cell lung cancer,now we are takeing both chemo nad radiation, so just hang in there and pray, put him on prayer groups, and have faith, miricals can and do happen. my husband took both chemos you are talking about, now he is on camptosar. 2weeks on and 1 week off,radiation for 5 weeks 5 days a week, ,good news the combination is working, the tumor is shrinking,thank god, but there is no cure, can come back, but honey a year or two, I'll take, at least we are to gether,and what he is going through we as caretakers and wife's go through it to, I'm new here to this is my first time to write to any one, so banjo hang in there and if you want to email me this is my email address, viapearson@tds.net. I would love to be friends with you.
    love and hugs
    vperarson
  • Barneynurse
    Barneynurse Member Posts: 1
    #7
    MarineMom1955 said:

    Hi, Banjo,
    I'm new here, too. My husband who is 48, was diagnosed with lung cancer last June, 2002. He went through 5 months of chemotherapy and 6-1/2 weeks of radiation treatments on a daily basis. He was so sick he couldn't work and hasn't been back to work since. One thing I will recommend for appetite is Megestrol Oral. My husband, Steve, got so bad with eating and the Megestrol made a huge difference.
    Unfortunately, the day we found out he had pretty much beaten the lung cancer, we also found out it has spread to his brain. That was devastating. He went through more radiation, whole brain because there are 3 tumors and was placed on Dexamethasone (steroids). They lowered his immune system to the point where he ended up with pneumonia so serious that the docs told me he wasn't going home. Well, he came home but he's not the same.
    They've told me that there's not much else they can do so we are at home together, waiting. I envy you in a way, having an outside life. I worked for a couple of months but had to take an indefinite leave almost 2 months ago. Getting out just to go to the store is almost impossible. But one piece of advice: DON'T feel guility...it's not your fault. I've been living with guilt and everything else that comes with this illness for almost a year. I'm still here because I love him so much that I won't let myself fall apart.
    Talk to your doctors about the Megestrol Oral for the appetite and just love him as much as you can. My husband's favorite thing right now is a large Dairy Queen ice cream dipped in chocolate. And since there isn't much else I can give him right now, he gets it whenever he wants!
    Hang in there and feel free to email me. Maybe we can support each other as friends.
    Sincerely,

    Jana

    My husband is 46 with NSCLC that resulted in the loss of his left lung in May. This was followed up with the removal of a brain metastases in October. He just finished 18 round of WBRT and is on number 3 of 6 Novalis treatments. He is on oxycontin and decadron. He is going to start temedar next week. He had radiation and chemo before the lung surgery, so this is the second round of radiation. He goes from not wanting people to treat him like he is sick, to someone who has to be taken care of every minute. Our lives have been day to day for over a year now and I find myself wondering what is next. I keep weight on him by using half and half, protein powder, breeze juice and soy milk. The decadron makes him hungry all the time. He can't work out and is getting weak legs and arms and we have not had sex in lord knows how long....I love him and will do whatever it takes, but sometimes the days all run into each other...
  • mistofer90
    mistofer90 Member Posts: 1
    #8
    Hi! This is my first time on CSN, and i am surprised and happy to find someone who is going through the same thing as i am. My husband and i got married in April of 2003, and on our one-month anniversary, we found out he had stage IV adenocarcinoma of the lung. He is 27, and i am 23. Our whole married life has been consumed by his cancer. He was given Cisplatin and Gemzar for several months, and it shrank his tumor and spots a little, but not near enough. His chemo wiped him out so badly that he had to leave his job and stay home. He is still off of work, and is now taking Iressa. We will not find out if it is working until February 13th, when we meet with his Doctor about his CT scan. I am very worn out and exhausted from this whole thing, and feel like giving up all of the time. I was so positive at first, but now i am losing hope, as he becomes sicker and weaker, and there is nothing i can do. As much as i do not understand what he is feeling, he has no clue what i am going through, either. I cannot stand just watching him lie there on the couch too weak to get up and take a walk or go to the mall like we used to. I, too, feel guilty about going out - i am still young, and still want to have fun, and i feel like i have to do things for myself in order to stay sane. But then, I come home and see the look on his face and know that he wants to go out too, but he can't. that's when i start feeling really bad about doing things for myself. I have not asked our Doctor how much longer he thinks my husband has, because i honestly do not want to know. I am thinking that if this Iressa is not working, he will have to tell us, because our options are running out. Please know that you are not alone, and i would love to talk to you or anyone that is feeling this way. I have a feeling this will make me feel a lot better!
  • gronyath
    gronyath Member Posts: 1
    #9
    mistofer90 said:

    Hi! This is my first time on CSN, and i am surprised and happy to find someone who is going through the same thing as i am. My husband and i got married in April of 2003, and on our one-month anniversary, we found out he had stage IV adenocarcinoma of the lung. He is 27, and i am 23. Our whole married life has been consumed by his cancer. He was given Cisplatin and Gemzar for several months, and it shrank his tumor and spots a little, but not near enough. His chemo wiped him out so badly that he had to leave his job and stay home. He is still off of work, and is now taking Iressa. We will not find out if it is working until February 13th, when we meet with his Doctor about his CT scan. I am very worn out and exhausted from this whole thing, and feel like giving up all of the time. I was so positive at first, but now i am losing hope, as he becomes sicker and weaker, and there is nothing i can do. As much as i do not understand what he is feeling, he has no clue what i am going through, either. I cannot stand just watching him lie there on the couch too weak to get up and take a walk or go to the mall like we used to. I, too, feel guilty about going out - i am still young, and still want to have fun, and i feel like i have to do things for myself in order to stay sane. But then, I come home and see the look on his face and know that he wants to go out too, but he can't. that's when i start feeling really bad about doing things for myself. I have not asked our Doctor how much longer he thinks my husband has, because i honestly do not want to know. I am thinking that if this Iressa is not working, he will have to tell us, because our options are running out. Please know that you are not alone, and i would love to talk to you or anyone that is feeling this way. I have a feeling this will make me feel a lot better!

    Hi. this is my first time writting on this sight my husband is also on iressa he has been on it since september and all his tumors have disappeared. the doctors say he is doing great. my heart goes out to you because you did not get a chance to have a life with your husband. i have been married for 35 years. i am 51 now. I think the illness takes as much out of the care giver emotionaly as it does physicaly out of the patient. my husband has had one lung removed 75 radiation treatments and other chemo he also had throat cancer. he goes to work each day and the only time he has had off of work was a week at a time when he had surgery he does property maintenance and he says he continues to go to work all the time because if he did not push himself he would just give up. you need to get your husband out and envolved in things as much as posible. He needs to stop thinking of himself as a sick person and go on with life other wise he will get very depressed. By the way when my husband was first diagnosed in october 2000 we were told he would notlast past six months. we were also told when he had to have more cancer cells removed last year that he would not live out the year. with iressa all the tumors have disappeared. so keep hopping and praying for your husband. Take care of yourself and try to keep your spirits up.

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