Guest kjdenver Posted January 8, 2004 Share Posted January 8, 2004 I have been away from the boards for a while. I moved from Denver to Richmond to care for my father who is 80. We made it throgh the radition and chemo to the initial diagnosis of lung cancer. Since Thanksgiving we have been recovering at home from the last round of radiation to the bone cancer in his hip. Recently he has had trouble breathing and it was determined that he had about 2 liters of pleural effusion. The right lung is eloculated so they could only remove about 500 cc of the fluid from one pocket, which helped somewhat with the breathing. Neither the oncologist nor the pulmonologist are eager to do an additional CT scan. Neither has suggested a PET scan. Apparently we are past the radiation stage and even the chemo stage and are left with only medication treatments like IRESSA. My father still has enough strength to get out of the house on crutches, uses the bathroom himself and bathes himself with some assistance. His sleep and eating schedule is very regular. I would love to hear from anyone who can help me understand whether we are facing a rapidly approaching end stage or what might lie ahead? Could I hope to stabalize this condition for a while through future removal of pleural effusion? I am worried about the spread of the bone cancer to other parts of the body but doctors said they can not test for that but we should keep an eye out for symptoms.... Should I push for a proactive test for cancer in the brain? We have no symptoms yet -- what are the symptoms aside from confusion? Lost and devastated son. Any words of encouragement would be appreciated. Love to everyone who is caring for a loved one. Quote Link to comment Share on other sites More sharing options...
bobmc Posted January 8, 2004 Share Posted January 8, 2004 Hello Kevin; "Tuff stuff" you and your dad are going through, thank goodness he has you in his corner, you'll both be in my prayers!! I have the brain mets, symptoms to watch for are: 1. A persistent headache with or without vomiting. 2. seizures - ( change in type or frequency ) 3. double vision, mental changes, speech difficulty 4. stroke ( brain hemorrhage) 5. confusion 6. Any numbness, arm or leg weakness, back pain, difficulty walking. 7. loss of control of bowel or bladder. note: numbers 6 &7 are more consistent with spinal mets. Hope this helps and good luck to ya!! God bless and be well Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01 MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack PET taken 1/5 - hot spot in mediastinum May be cancer?? "Absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
john Posted January 8, 2004 Share Posted January 8, 2004 You can ask about Zometa or a "biphosphonate" for the bone mets. They are supposed to keep the bones from breaking and prevent more bone mets Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted January 8, 2004 Share Posted January 8, 2004 Hi Kevin, The doctors might be discouraged if the pleural effusion they did remove contained cancer cells. Ask them, and ask them if they would try to remove the rest of the fluid. Your father will feel much better, I am sure. If your dad wants to be more proactive and aggressive in his treatment, ask the doctors. If they won't, fire 'em and get ones who will. Your dad is plenty young enough to fight this thing off, if that's what his mind is set on doing. Just my humble opinion. MaryAnn Quote Link to comment Share on other sites More sharing options...
Don Wood Posted January 8, 2004 Share Posted January 8, 2004 Hi, Kevin! I walk in your shoes as a caregiver. It is one of the hardest roles we can be asked to perform for a loved one, but an honor. I agree that you should check other opinons about your options. And I do recommend also looking into Zometa for the bone mets. Keep us posted, guy. Don Quote Link to comment Share on other sites More sharing options...
mirrell Posted January 9, 2004 Share Posted January 9, 2004 my dad had loculated pleural effusion. the doctor can use streptokinase to help melt the pockets and get the fluid out. ask about this. mirrell Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 9, 2004 Share Posted January 9, 2004 Hi Kevin, I would also like to add that for the bone mets, you might want to ask your doctor about Aredia. It is also for the bones. I have a friend who has bone cancer and the doctor took her off of Zometa because it has too many liver side effects. She said the mets to the bone is gone. You might want to research this yourself. Wishing you luck and prayers for your father and you... God Bless Karen Quote Link to comment Share on other sites More sharing options...
norme Posted January 9, 2004 Share Posted January 9, 2004 You asked about brain mets. I can only tell you that my husband had weakness in his leg one day and he almost fell. I know when my mom had mets to the brain, she had a seizure. they are people who have headaches and that is how they find the mets. It is not just one thing but many different things that can happen to test for brain mets. As for a pet test, i would insist on it so that you know where all the cancer is? Sometimes we caregivers have to fight to get what needs to be done done. Quote Link to comment Share on other sites More sharing options...
Guest Posted January 9, 2004 Share Posted January 9, 2004 Hi Kevin, I know the feeling of wondering where exactly this disease is headed and how quickly it will happen. I have been in the same boat with my own dad. He was 82 when diagnosed in Jan of 2002 with NSCLC/BAC - tumor in one lung only. As far as the pleural effusion, determine whether the cells in the fluid are malignant or not. A test may have been run when the fluid was drained. If the fluid is malignant and it continues to build it, it will definitely affect your father's ability to breathe, and he will have to have it removed. You will have a few different options once that determination is made. Even though a couple of my father's doctors recommended pleurodesis, he decided to follow the suggestion of his oncologist and have a PleurX catheter inserted into the pleural cavity. At his age the oncologist felt that it would be a tough procedure for him to go through, especially after having completed radiation a few months before, with no guarantee that the procedure would completely eliminate the effusion. Rather than go on about all of this, if any of this info is helpful to you and you'd like to hear more about it, please let me know. I'd be happy to share. As far as a timeline goes, my dad was dx'd with the effusion 8/02, determination of MPE 10/02, given a prognosis of six months or less at that time, and he's still here. I haven't had to deal with bone mets yet, so I can't offer you anything along those lines. However, the pleural effusion is something that we've had a lot of experience with. My dad's pulmonary doctors wanted to move on it quickly, so be sure to check on that thoroughly. I'm so sorry that you're going through all of this... Nina Quote Link to comment Share on other sites More sharing options...
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