Catch up regarding John who has nsclc, stage IV. He had the fluid drained from around the left lung and did fine through that procedure. They drained over a liter of fluid. He started another round (round three) of chemo which was to consist of four sessions and the a break. After the third one he was put in the hospital because of diarrhea, dehydration, and some more bleeding of the GI tract which started right after the third chemo. So he got three out of four of the chemo's scheduled. His doctor, Dr Hayes, has stopped treating him for at least two months. We are scheduled to see her (female oncologist and we really like her) December 19 and if he is okay he can have another chemo round. I don't think he will tolerate any more chemotherapy. He weighs 117 and is 6' tall. He looks so bad.

In the meantime he was getting out of bed last Saturday morning to go to the bathroom and he fell between the wall and the bed. His legs could not work and they still aren't working. He is no longer ambulatory. He talks in his sleep and makes sounds when he isn't talking. He can't control bowel movements as they come on without warning. We are now using the Depend type garments.

He is not eating and if he does it is very little. He made a joke (?) last night to our son-in-law about not eating and dying. He said he was joking but I don't think he was. His mother had pancreatic cancer and she just quit eating and died. In many small ways I think he is letting me know that he wants to go from this life.

Does anyone have any idea about prognosis with nsclc, stage IV. John was diagnosed a year agoo on Oct. 22, 2005. I know that everyone is different but since we are considering hospice I thought I would check on this board to perhaps get an average.

I don't know what to do next. Do we need the hospital, the Home Health Care, The Hospice. I have a message to his oncologist but I think she is out of state and on leave for the holidays so maybe I'll hear from her soon.

Any info would be most HELPFU. L:confused: L

linda

Linda,

I am so sorry to hear the update on John.It sounds like you may be at a point where hospice needs to be considered and further treatment stopped.

My mom died last night and if there was one thing I could have gone back and done over it would have been to stop her treatment earlier before it totally wiped her out as maybe then she would have had some enjoyable days before she died. The last chemo just wiped her out and these past few weeks she could not longer get out of bed by herself, feed herself do anything for herself and she seldom spoke and even then only with one of us asking questions and often her answers would not really be what I think she wanted to say.

If she had not have pressed on with chemo like she did then I feel she would have been stronger until the cancer took her. As it is I do not think her liver mets had progressed enough to kill her as she had no signs of jaundice that one sees with end stage liver problems and she had no tumor in her chest for the past 1.5 yrs ( Thanks Tarceva ).She may have lasted several months and done better until the liver started to fail had the chemo not wiped her out like it did.She just never bounced back from her last dose. I think yesterday she may have thrown a pulmonary embolism as people that are not up walking around tend to develope them.My mom had not been on Oxygen and had no problems with shortness of breath but yesterday when we got her up she kept acting like something was wrong but she just could not say what and as the day progressed she became more short of breath from Hypoxia ( lack of Oxygen) so something happened that changed her oxygenation and my best educated guess is a pulmonary embolism and when she was acting like something was wrong she was possibly having pain having thrown the embolism so in the end her lungs not being able to get enough oxygen into her blood ( even when we put oxygen on her) caused her prolonged but quiet death.

I think there just comes a time in this battle where you have to shift from the fighter of cancer to the fighter for comfort. It does not mean giving up hope it just means that the focus of that hope now shifts to hoping for a painful, peaceful journey foreward to the next life for your loved one.

John's "joke " about not eating and just dieing may be a way that he is testing you to see if you are ready and willing to let him go.Often dieing people "test" us to see if we are ready as the pain of leaving a loved one unable to cope with the death is a heavy burden for them. Knowing what I now know I think I would view his comment as a gift as maybe he is saying he is ready to go now.If that is what it is then be thankful for it and listen to other hidden message he may be giving you.

I really do not think there is a good average for prognosis as you said your self everyone is different and part of that could be do to none of us knows how long the cancer was there before it was discovered.

I hope this helps. I did not come here today to offer replies but when I saw your post I had to tell tell you what I am currently feeling having watched my mom pass last night and believe me posting this has helped me today.

God bless and take care Linda ((((((Hugs))))) JanMarie:angel:

Hi Linda, I agree with JanMarie 100%. There comes a time that the focus needs to move from "curative" forms of treatment, to "pallative". To make these wonderful people more comfortable and ease their pain. Hospice was wonderful to Bud and I. I can't thank them enough. Your oncologist will need to write an "order" for you to get hospice care otherwise your insurance probably won't pick it up.

Sounds like John is trying to prepare you Linda. Bud did the same thing with us and what a dreaded moment that is, when you hear those kinds of words. They need to know that it's OK and you'll be OK. We all told him it would be OK, but now I don't know I'll ever be OK again. But if they worry we won't be able to continue on, they hang on to life however painful and miserable it might be because they don't want to inflict any more pain on us by leaving.

I keep you in my prayers daily Linda. As far is averages, Bud first started showing symptoms in Nov 2004, with official dx in February 2005 after the biopsy. He died Nov 2006. So for him 24 months, but who knows really since the cancer had been growing in him for some time before the symptoms appeared.

Take care of yourself too!
Love and prayers,
Jan

JanMarie: I'm so sorry, but yet grateful, that your mom is traveling a new road. A women I spoke with at a hospital here in Houston got up to leave the waiting room and turned to me and said "I'll see you on the other side". I don't know what the afterlife is all about but I do believe there is one. God Bless You.

Thank you so much for taking the time in the midst of your pain to respond to me. You are special.

I believe John is on his way to traveling a new road. I just got through bathing him (sponge bath). If there is any muscle left I can't see it. I think he enjoyed his bath but it tired him. I gave him one of his anxiety pills as it relaxes him and makes him sleep. Our little dog is lying on his legs and stays there all day if I let her. I believe Ebby Elizabeth (dogs name) knows something bad is wrong. John has not said any more about dying and I have never seen anyone die but I don't know how he can continue to sustain life much longer in the condition he is in. I haven't heard from the oncologist but tomorrw I will be speaking to hospice. I understand they will evaluate his need for hospice?

I can a call early this morning and my friend for thirty had a heart attack last night around 11:00. She is okay and has one stent in the main artery. She called me around 9:00 last night to see how we were doing. She was crying and said she is afraid she won't get to see John again. Bless her heart she is a true loving friend. I pray that I don't lose her too.

I'm glad your posting helped you. It sure helped me. I pray you and your family are able to celebrate your mom's life. She must have been a very good person because she raised a caring daughter like you.

linda

Linda,
Sorry to hear John seems to be slipping so quickly. There have been many, many times Stan has seemed like that too and not sure how he has doone it, but he has survived 17 months with SCLC which he has 50 mets in his brain, is in his liver, lungs, bones, adrenal, obiviously his lymph system and so on and so on and still pushes on. He has outlived whay any doctor thought and I thank God everyday. Stan is on his 4th line of chemo treatment, but they will only do one more on Dec. 4th and put a stop to it so he can enjoy the holidays, but honestly I am worried the next one might kill him. He is weaker, but sill pushes on and I think it is because our boys...one 17 and one 10. They are the highlight of his life.
I do hope you can get hold of the doctor soon to help you figure out what to do and what path to follow as far as treatment or hospice. You mentioned you have never seen anyone die....oh, it is not an easy thing to deal with as I am sure you can imagine. We watched my FIL die of cancer 5 years ago and that image is still with me today. I do hope you have faith and have a good support of friends as you will need it. I am not trying to scare you, but please nothing can honestly prepare you for losing a loved one, but you need to be surrounded by love and friends and a huge amount of faith.
I will pray for John and somehow hope he rebounds and starts feeling better! Miracles are out there!
You take care and thanks for sharing.
Kim

Hi Linda,

Jan is right in stating that the Onc has to write the order for the hospice care. My husband was diagnosed with Stage IIIB nsclc last October also. He has since moved to Stage IV. I can't began to tell you the ordeal with all the surguries, pain meds, chemo on and off etc. My husband has always been a fighter throughout this whole ordeal. It was as if he was saying I can't die yet I still have alot of things I still need to do first. Now he is tired. He likes for us to meet up in our bathroom where no one else can hear us and talk about how the day will go because he is constantly in a state of confusion and he is so apologetic about asking me over and over again about his meds. He said to me just this morning that he hopes that he can share with me that he doesn't want to take any more meds and that he hopes that I know what his wishes are if something were to happen to him. He also said that he hopes he doesn't sound as if he is given up hope because he knows that his mom does not want to hear him say he doesn't want to take anymore meds. He made the mistake of saying that last night and she freaked out on him. I told my husband that even though he has been diagnosed with a terminal illness we still do not know when our time is up. I still drive on the road and anything could still happen to me. I let him know that it's ok to feel the way he is feeling and that we should be able to talk about the sad things even though they hurt.

Our Hospice nurse is great. My husband loves her. She visits three times a week and she calls to check on him at least twice a day. It was difficult for my husband at first to accept hospice care because he was confused as to how they worked. He still asks for blood work to be done and wants to know if needed if he can have a blood transfusion. I still think that he is in denial still.

God Bless You Linda and Your husband John

Hugs and Prayers

Renea