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alicia

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Everything posted by alicia

  1. Thanks Judy. He's actually been using a stool softener since beginning the chemo due to the anti nausea meds, etc.
  2. Thank you all again. For Joan, my dad has begun to realize the importance of pain meds. He was convinced by all of the reports you hear about pain pills being addictive that he would somehow become an "addict", but a nurse finally explained to him that he will function much better and heal better if he takes the pill when he really needs it. He still tries to wait as long as possible but at least he'll take one now. For Mitzu, we did ask the doctor's about the fluid around the lungs constricting the heart and causing the erratic heart rate, but they told us that wasn't the problem and they are still convinced that it was a result of the window operation that was done on Dec. 16th to remove fuid around the heart and they also think that the cancer has spread to either the lining or the heart itself. They finally stabilized his heartrate last night and then before my mom even got there this morning, the cardiologist saw him and ordered him to be released. I thought they were going to monitor him for 24 hours with the IV meds and then give him the pill form for 24 hours to make sure it stayed stable, but I guess not. Maybe my dad pleaded to go home since it's his birthday tomorrow. Anyhow, they then had the nerve to call my mom to update her of his release at about 10:30am and tell her that he must be out by 11:00am or else the insurance will charge an out of pocket stay for another day and that if nobody was there to pick him up by 11:00, they would send him out to wait in the public waiting room in located in the main entry lobby of the hospital. Unbelievable! So I called and spoke to a different nurse to say that my mom was on her way and would be there at 11:15, and she said they would let him stay until she got there. So annoying! Plus, I've been sick this whole week with a cold that turned into bronchitis, so I haven't even been able to see him. Sorry to vent. Anyhow, my dad is quite depressed right now and doesn't want to talk much. The doctor's want him to do another procedure to remove the fluid from around his lungs where he'd have to have drainage tubes in for several weeks, but he hasn't decided if he wants to do that yet. I think we'll just try to get through his birthday without anymore doctors and go from there. Thanks for listening --Alicia
  3. Alimta is known to cause shortness of breath, which could be contributing to his problem. Perhaps the Predinsone kept it at bay, but without it, it is more severe. My dad just recently had a problem with Alimta. One of his main complaints has always been shortness of breath and the Alimta made it significantly worse. ==Alicia
  4. Thanks again everyone (Kelly, Heather, Welthy and Ernie) Ernie, thanks for the suggestions. I read your story and was amazed at your progress and dedication to diet and supplements, etc. Unfortunately, my dad is nothing like that. He can barely swallow a pill and can't stand taking the few medications that he has to take and doesn't care to try vitamins and supplements that we've suggested. My dad would definitely not be willing to fly for a second opinion. To be honest, my dad is just not a fighter, and as much as that annoys his family around him, he has lived 64 years with that attitude and personality and nothing we can do will change that. If anything, it just causes him more anguish and stress for us to keep bringing up other alternatives because he just can't process all of the information. It would take forever to explain what I mean, but the point is that he is a "homebody" and is only willing to do what is available to him at his medical facility. It was hard enough for him to make the decision to proceed with chemo, etc. because he gets so discouraged and hates hospitals so much. He went from never having to go to the doctor (which he's now grateful for) to being there 3 or 4 days a week and getting poked and prodded and having allergic reactions and going to the ER and everything else, and he's just disgusted with it all. In the end, only he can make decisions as to how to proceed with his care, so we have to respect that even if we don't completely agree with it. There is no question that I do not wish to prolong his life for my own selfishness if that means he will be miserable and have no quality of life, but it would be nice to know that we tried the options that could potentially give him more quality time during which he still feels good. His heart rate went down a little this morning, so they are still trying different drugs to stabilize it. At this point, they say any surgery around or near the heart can cause rapid or erratic heart beat as a side effect, but with all of his conditions, it is more extreme. They still haven't proven it, but the doctors believe that the cancer has spread to the heart or the lining around the heart which is also contributing to the problem. As for the fluid around the lungs, the only way to remove that "permanantly" would be to do another procedure with drainage tubes, which my dad has not decided whether or not he is willing to do at this point. As dor the Avastin, I'll have to look into that. I know there was a drug (I thought either Avastin or Tarceva) that he couldn't use due to being on Coumadin. Thanks for all of your help and suggestions. I'll let you know what happens.
  5. Thanks everyone. I wish I found this site sooner. (Although I'm sure we all wish we never had a reason to find it all) --Alicia
  6. Thanks, Don. I went on Dr. West's site ad sent him an email. Hopefully he will have some advice. Best wishes to you. --Alicia
  7. Hi. My name is Alicia and I'm 29 years old. My dad is 63 (will be 64 on Jan 1st) and was dx'd with nsc Lung Cancer in on May 11, 2006. He never smoked, and was healthy and active and hardly ever went to the dr since having his tonsils removed when he was a kid. In November 2005, he started havin leg/hip pain, which he thought was a sciatic nerve problem. He had been playing on an adult softball league and thought he might have pulled something. He then started noticing SOB and some wheezing. (He'd been dx'd with "athlete's asthma 5 or 7 years prior because he would wheeze a little bit if he was exercising and sprinting the last lap on the track) The wheeze started turning into more of a bubbling or percolating sound like when water is boiling on the stove, which he found odd and that's what pushed him to go the dr. After months of going back & forth and having x-rays, CAT scans, inhalers, antibiotics, etc., we finally demanded that a biopsy be done. It was done on May 10, 2006 (my birthday), and on May 11, he was told that it was indeed cancer. The PET scan revealed that it was Stage IV and that it had spread to both lungs, lymph nodes, the liver, portions of the spine and he has a tumor on his femur bone. (I know there are several other small spots, but I'm not thinking clearly enough to name them all) Anyhow, he started Carbo/taxol on June 14, 2006 and did okay the first treatments but had severe leg pain as his main side effect. On June 19th, the dr. called and said that his CAT scan revealed the he had a pulmonary embolism and told him to go to the ER and be admitted to the hospital. They saw that he also had some pleural effusions as well as some fluid around the heart, but decided to let that be for now and see if the chemo, blood thinners and lasix would alleviate that. They started him on blood thinners (Coumadin)which he's been on ever since. When he went for round 2 of Carbo/Taxol on July 6, 2006 he had a reaction and they sent him to the ER. They did not "challenge the Taxol" as I've heard be done to others after this event. He was switched to Carbo/Gemzar, which he started on July 14, 2006. He then began getting Aredia infused for his bones as well beginning August 4, 2006. He did okay throughout these treatments and was still playing softball when he felt up to it. He had 1 or 2 treatments postponed due to low counts, and was eventually given procrit beginning in October. CAT scans showed that there was a slight reduction in tumor size after the carbo/taxol treatment, but with the Gemzar, things had just been held at bay by the end of his 6 cycles. He had a month off from November to December and was feeling great. Said he felt better than he had since being dx'd and was playing baseball and seemed to have his wind back for the most part. He began a new treatment with Alimta on December 6th 2006 and thats when everything went downhill. He was really tired and then had some type of stomach issues for a few days with diarreah. On Dec. 15th, he started having pain across his chest that became severe along with shortness of breath. He was rushed to the Er, and they kept giving him nitro in case it was a heart attack. It took hours before they could give him pain meds and my dad doesn't usually complain, but his pain was like a 15 on a 1 to 10 scale, and you could tell. They finally did a CAT scan, etc. and found that there was excessive fluid in between the heart and the pericardium that was constricting the heart. On Dec 16th at 7pm the dd a "window" operation to drain fluid and make a hole in the sac to allow fluid to drain so that it wouldn't build up. They drained 1200ccs (more than a liter) of fluid just from around the heart. He looked much better the next day, but then each day he seemed to feel worse. He still felt short of breath, he had pain in his back, his blood pressure would get low and his heart rate high. They monitored him and he stayed in the hospital until Friday Dec. 22nd. We knew he didn't seem that well to come home, but the doctors said he was okay. The whole weekend, he had a lot of pain in his chest and back and had to take pain pills, which he tries to avoid at all costs. He was very tired and still had labored breathing and his blood pressure and heart rate kept going all over the place. We had a nurse check on him and she said he seemed okay. Then on Dec 27th he just slept a lot and seem out of energy. On Dec 28th, the nurse checked on him again and his blood pressure was only 90/76 and his heart rate was 140. So he went to the Er yesterday and they still haven't been able to get his heart rate to go down after several does of medication that would normally help. Last night at about 9pm, they drained 1 liter of fluid from his right side with a needle and decided not to do the other side for fear he would be to weak. As of yet, this hasn't helped. The dr's don't know why the heart is racing except to guess that the cancer has spread to the heart, yet the fluid tested from the heart drainaged was negative for cancer and they haven't seen anything in the x-ray, EKG, CAT scan, etc. His heartrate is still 130 and up. Anybody with any symptoms even remotely similar? Was it coincidence or did the Alimta really screw things up? I'm reading now that Alimta isn't reccomended for those with pleural effusions, yet they knew he had them, so could that have made it worse? Any advice would be greatly appreciated. He hates hospitals more than the average Joe and he just go out before Christmas and was in there for my mom's birthday, and if he's in the hospital for his birthday on Monday, I think he'll just walk out. Thanks
  8. Hi. My name is Alicia. I am 29 years old and my father was diagnosed with Stage IV nsc Lung Cancer in May 2006. He never smoked and had been healthy until November 2005 when he started showing symptoms of SOB and wheezing. I hope you all can give me some advice as I've read through previous post and you seem very supportive. I will post a message updating the events as of late as well as my questions. Thanks.
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