Guest Michelle Posted June 9, 2003 Share Posted June 9, 2003 Well, I talked to the oncologist this morning and he said the cancer in his lung has grown and Bob is too weak for anymore chemo, so, they are going to give me Iressa pills. The oncologist said 10-20% chance of this working. He said at this point we can just hope for more time, but he said the prognosis is less than 6 months if the Iressa does not work, and just over 6 months if it does work. WOW this just hit us SO FAST. My husband was doing so well and then BAM...he got so weak and tired and sick so fast and know we are talking months here. My husband called me, crying (he rarely cries) and he said he does not feel he is going to make it and that he was afraid to die. That broke my heart. His oncologist has always been very upbeat w/Bob but this time he looked sad and he didn't offer much hope and my husband took that VERY hard. Has anyone here been on Iressa w/success? I pray this works. See my husband's case is complex now as he has a blockage in his heart, malignant fluid around the heart, no voice (just a faint whisper), massive phlegm in his throat that causes him to gag when drinking/eating and then he vomits....and he dehydrates. I asked about a feeding tube and the doctor said no. The doctor asked me if my husband has a DNR order and I said he just took care of that when they admited him Sunday morning. This is so sad and so shocking and so painful. I am just in agony - my heart is breaking and my goodness my poor husband is suffering so. A week ago we were out shopping and now he is fighting for air and on oxygen. Does this stuff just take a turn for the worse so fast? Thank you, please pray for my husband, it would be much appreciated. ~ Michelle Quote Link to comment Share on other sites More sharing options...
rayroy Posted June 9, 2003 Share Posted June 9, 2003 Michelle goo d luck to you and your husband and dont give up hope. My dad seemed like a goner and that was 7 months ago. Get a second opinion research about clinical trials or alternative treatments. Never give up and tell your husband that other treatments can work. I will prey for you both. Quote Link to comment Share on other sites More sharing options...
Terrie Posted June 9, 2003 Share Posted June 9, 2003 Michelle - I will be glad to pray for you and your husband. Perhaps you should try for a second opinion. I will pray that the Iressa works and your hubby takes a turn for the better. Terrie Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted June 9, 2003 Share Posted June 9, 2003 Michelle so so sorry to hear about this! he does have a chance, let him try the Iressa and see if helps. all i can say is educate yourself as much as possible and seek a 2nd opinion if need be. Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted June 9, 2003 Share Posted June 9, 2003 Michelle, I agree, call around to other ONC.'s someone out there has seen this and it can turn back again just like that to good news. Quote Link to comment Share on other sites More sharing options...
Ry Posted June 9, 2003 Share Posted June 9, 2003 Michelle, My husband has been on Iressa approximately 3 months, it appears to be working but we won't know for sure until July when he has a CT scan. The doctor says his lungs are getting clearer and he thinks he is getting shrinkage of his tumors. If nothing else he certainly feels better and has a better quality of life. Hopefully your husband will get a good result too. Have you read Bernie Siegels books? If not, they are great to listen to on tape and very inspirational for your husband. He should try the visualizatin techniques with the Iressa (visualize it killing his tumor) and see if it helps him. All the best to you both. Quote Link to comment Share on other sites More sharing options...
Carol Lee S Posted June 9, 2003 Share Posted June 9, 2003 Michelle, Get a second opinion or even a third, there are so many alterntive things to try. I understand your despair, the Doctor can made a huge difference by their tone; they set the stage for your emotional being. Don't let your husband get down, Doctors are scientists not God, get that second opinion and keep coming to this Board for support! Carol Quote Link to comment Share on other sites More sharing options...
Carleen Posted June 9, 2003 Share Posted June 9, 2003 Michelle, I am so sorry! I do agree with the others here. Get second, third, fourth, tenth opinions. Look into clinical trials and other chemo drug combinations. There is still hope, and where there is hope, there is a way. I am praying that the IRessa works, and that he regains his strength and health. Also, I guess my husband is taking a chemo drug that is somewhat new and experimental, CPT-11. He takes it with Cisplatin, but I've heard of clinical studies with it alone where they say it still has positive effects. On the weeks he has it alone, it seems to be relatively easily tolerated. He has little nausea, not much fatigue, in fact after he receives treatment he goes back to work for the day, and doesn't miss a beat. Maybe that could be something that will work for your husband. Shannon has had a lot of wonderful things to say about the Cancer Treatment Centers of America. Maybe a call to them would show some options. Oh, I just HATE this disease!!!! When I see such warm and wonderful people suffering so much my heart breaks. I am praying hard for you and your husband. God Bless you Michelle Carleen Quote Link to comment Share on other sites More sharing options...
MichelleZP Posted June 10, 2003 Share Posted June 10, 2003 Thank you all for the replies. So I can get a second opinion? Forgive my ignorance but I hadn't a clue any other doctor would touch a case like this. When my husband was first DX in April 02 his first oncologist came in his hospital room, looked at him, and said, "You will be dead in six months, any questions?" WELL...I called and said, "YOU ARE FIRED." That was it. Imagine the poor treatment my husband would have been given had I not fired that doctor! I called Ireland Cancer Center as it is number one in our area along w/the Cleveland Clinic and Ireland took him. His doctor gave him so much hope and he treated the cancer aggressively. Well Bob has had three rounds of chemo and he did WONDERFUL w/each round. He even had a brief remission in the Fall. So, why do they stop chemo after only three rounds? Is it due to the good stuff being killed as well as the cancer and the doctor must decide when enough of the good stuff has been destroyed? I am confused...why can't my husband have more chemo and not just Iressa? I called the makers of Iressa today and was told by THEM it only has a 13% positive response - well that is not good enough for me. I want my husband to have THE BEST...so I should call the Cleveland Clinic in the morning and ask for a second opinion? How would they see him - he is hospitialized. Well I spent the afternoon/early evening w/my husband. He looks good - his color is good. He is VERY down but I got him to smile and laugh several times. He grabbed me and hugged me harder than he ever has and told me how much he loved me. I know he is scared as am I but I won't come across to him as being scared. I won't kill his hope. So while I was there they took him to get a CAT scan of his throat - well, first of all the tech left him down there after the CAT scan was complete - for over a half hour...the lady paged and paged the tech to come get my husband and get him back to his room and my husband said when he did finally show up he smelled like smoke and acted funny! You should have seen how he wheeled my husband in his room...he went SOOOO fast. Then my husband's IV went dry and the alarm went off...we had to wait a half an hour and page the nurse...she said, "Yes." My husband said, "My IV is out and the alarm is going off." She said, "We will be right there." Well a half hour passed before someone came to put a new IV bag on. Then his dinner - he had to fast today due to so many tests - well the man was literally starving so he beeped the nurse and asked for dinner and she said it will be right there. A half hour passed...a nurse came in to tend to the other patient in the room and we reminded her, "Dinner - hungry over here." She said she was sorry and would see what was up. Another half hour went by. I went to the desk and said, "Listen, my husband is STARVING...can you PLEEEEASE call the kitchen now while I am standing here and see where his dinner is?" They called and dinner was up within 5 minutes. Then he asked for his pain meds about eight times as his throat hurts him terribly - I again had to go "remind" them he is in PAIN and he needs his medicine as they didn't give him ANY all day - so they said they would be right in and I said I was waiting right there and would accompany the nurse IN the room as I was not allowing my husband to wait again - so they rushed and got it and I walked w/the nurse to the room and he got his medicine. NOW WHY did I have to run the show? What the heck is wrong w/them? I won't allow my husband to have hunger pains and pain from their lack of good care. WHEW... Now we get the results of the CAT scan to the throat in the morning. My husband cannot drink water or ANY liquid as it aspirates in his lungs due to a faulty valve - I saw the name of this - dysphagia. He needs speech therapy - why, no clue. I am not a doctor but I know enough to know speech therapy alone is not going to cut it. I WANT HIM HOME...he wants to BE HOME...the nurse said he cannot come home until he can have liquids and it does NOT look like he will be able to have liquids for a LOOOOOOOOOOOOOOOOOOONG time. The oncologist told me he is not planning on keeping Bob long - so how on earth can he come home if he cannot drink liquids? He will dehydrate. What a complication to have. :( CALGON... Thanks for listening - prayers would be most welcome and appreciated. Quote Link to comment Share on other sites More sharing options...
Tiny Posted June 10, 2003 Share Posted June 10, 2003 Michelle, My heart is breaking for the two of you. The care at the hospital sounds really substandard...is there another hospital choice?? Is there a patient advocate whom you could call? How about contacting one of the supervisors??? Be sure to keep ACCURATE notes about all this...for example, how long it takes them to respond when you ask them about pain meds, etc. Accurate information may be really helpful in your obtaining better care for him. What in the world happens when you are not there?? Best of luck to you. You are both in my prayers and requests for blessings. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 10, 2003 Share Posted June 10, 2003 Dear Michelle, I cannot believe the type of care your husband is receiving. Thank goodness you are there to demand better. But it is incredible that you have to step in like this and take charge in order for things to happen. I will pray for the two of you, Peg Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted June 10, 2003 Share Posted June 10, 2003 I had similar experiances at the hospital when mom was in. We were constantly asking for her food, pain meds, etc.... Needless to say we told her onc. that we would NOT go back to that hospital and if he did not work at another in our area, could he recommend another onc. well fortunately for us he did also work at the other hospital as well. Unfortunately they do not care about patient care like they used too. Our moms nurse told us they are under more and more pressure to get paperwork done now and not to cater to patients, Our nurse was leaving that hospital because she said that was not why she went into nursing. Quote Link to comment Share on other sites More sharing options...
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