renee_ky

I just called the radiation center, in an attempt to ask. I was told to ask for a doctor when I got there, and ask them about it. I will do that. I will let you all know what they said about it. His appointment is 2:15, we are Eastern time. Renee

As always- Thank you all for your guidance. I will ask about the Amifostine this afternoon, before his treatment. It is worth a shot!

Helo all- Scott is taking 400 rads of radiation to the chest, all of the way through from the front, and all of the way through from the back. Tomorrow, this intensity of the radiation will be dropped to a theraputic level (not sure what that will be). The problem is, per the Radiologist, this will burn his esophagus pretty badly, which will in turn cause digestion problems and make it very difficult for him to swallow. The last thing he wants is a feeding tube, if he can not swallow. Do any of you know of anything that will maybe smoothe the esophagus, so that it is not so difficult to swallow? Per the radiologist, there is not a whole heck of a lot you can do about it, except try to drink some pepto bismol. Thanks! Renee

Scott made the decision to restart chemo therapy, and radiation. The chemo is VP 16, he will take this orally for 21 days. The radiation also started immediately following his appointment with his oncologist on Thursday. They started radiation at 400 rads, the area being radiated is large enough to target the large mass in his left lung, and the small amount that has moved to the right side. The ribs are being radiated as well. On Tuesday, they will drop the strenght of the radiation, and he will continue radiation with a cycle of 14 days total. The test results on Thursday were not as bad as we all expected. It was determined that the mass in the left lung has almost completely blocked the left bronchi, and has started moving to the right side. The mass in the rib area is small enough to control. The 2 spots on his liver arr still there, but has not increased. Other than that, no other growth was found. There is one spot in the T8 of spine that is questionable, but they are not concerned about it right now, because the radiation will also hit this spot. He has pleuricy (sp?) in his left lung, as well as a little pneumonia. Per the Doc, the pneumonia is not from an infection. They started him on an anti-dieuretic antibiotic because he is retaining fluid, and his sodium is low. His fluid intake has been limited to 1 & 1/2 quart daily. The doctor explained that this is due to a hormone that is created by the cancer, and the anti biotic will aide in reversing the effects of the hormone. He gets around really good still, but I am not sure when it is best to call hospice. The oncologist and I discussed this, he suggested that I do not call hospice until he has said he that there is no longer anything he can do to help Scott. For now, he will contimnue chemo and radiation. Though they call this "comfort care" and continue to tell us that there is no hope for survival, we will continue to pray for our miracle.... God bless you all and thank you VERY much for all of the prayers! Renee

Scott made the decision to restart chemo therapy, and radiation. The chemo is VP 16, he will take this orally for 21 days. The radiation also started immediately following his appointment with his oncologist on Thursday. They started radiation at 400 rads, the area being radiated is large enough to target the large mass in his left lung, and the small amount that has moved to the right side. The ribs are being radiated as well. On Tuesday, they will drop the strenght of the radiation, and he will continue radiation with a cycle of 14 days total. The test results on Thursday were not as bad as we all expected. It was determined that the mass in the left lung has almost completely blocked the left bronchi, and has started moving to the right side. The mass in the rib area is small enough to control. The 2 spots on his liver arr still there, but has not increased. Other than that, no other growth was found. There is one spot in the T8 of spine that is questionable, but they are not concerned about it right now, because the radiation will also hit this spot. He has pleuricy (sp?) in his left lung, as well as a little pneumonia. Per the Doc, the pneumonia is not from an infection. They started him on an anti-dieuretic antibiotic because he is retaining fluid, and his sodium is low. His fluid intake has been limited to 1 & 1/2 quart daily. The doctor explained that this is due to a hormone that is created by the cancer, and the anti biotic will aide in reversing the effects of the hormone. He gets around really good still, but I am not sure when it is best to call hospice. The oncologist and I discussed this, he suggested that I do not call hospice until he has said he that there is no longer anything he can do to help Scott. For now, he will contimnue chemo and radiation. Though they call this "comfort care" and continue to tell us that there is no hope for survival, we will continue to pray for our miracle.... God bless you all and thank you VERY much for all of the prayers! Renee

Thank you all very much! As Beth suggested,it will not be long before I call hospice, I discussed this with our families, and everyone agrees, when the time is right, hospice needs to be involed. I know there is so much they can do for him. Scott went for CT scans yesterday, and for a full bosy bone scan today. The bone scan was rough for him because he had to lay flat on his back for so long. We have a WONDERFUL surprise b-day party for him Saturday, we estimated approximately 200 people were there. It was hectic, but fuin, and more than worth it. Today I fixed dinner for him and just his family, it was very nice. Today is his birthday, he turned 45. The results from the CT scans and bone scan will be given to us Thursday, and course of action will be determined as well. I am preparing fot the worst, but hoping for the best, naturally. Again, thank you so much for all of the prayers and wonderful thoughts. As you know, it makes a difference just knowing that support is there anytime you need/want it. So again, thank you!! Renee

OK.. calling now, thank you!

I knwo I panic easily, and I drive his Oncologist CRAZY (they say I don't) But I never know what to see as "notmal" and what to report. Scott is scheduled for CT scans of chest, abdomen and pelvis on the 12th. And, a full body bone scan on the 13th. And, we go back for the results on the 15th. The oncologist did confirm what the ER said, and that is, the cancer is in his ribs (2 broken) and the tumor in his lung is significantly larger. Here is my concern.This morning, when he coughs deep, he coughs up blood and his chest is "rattling", it sounds horrible. Once he coughs, it stops, but it builds back up in a amtter of minutes. He feels really weak and tired, though he did get up and take a shower, and ate a coupel of crackers. He also feels liek he has acid indegestion, or heartburn. I am worried, I do not know what to do Thanks, Renee

Cat- I wish I was near you, I would come give you a thousand hugs!! Renee

Sandy- That is WONDERFUL news!

Berisa- Scott chose to stop chemo because it was making im very ill. Once the chemo woudl start to taper off, he felt great, but of course by then, it was time to start again. The oncologist agreed with Scott's decision at the time, because he felt better, and quality was the goal. The Oncologist confirmed that the cancer is in his ribs, and the tumor in his lung has increased. The Doctor has ordered CT scans of his chest, abdomen and pelvis, as well as a full body bone scan. The tests are scheduled for July 12th & 13th. The doctor preferred to discuss this more in detail after he has all of the results. Because this is a systemic cancer, it has most likely spread to other organs and/or bones, which rules out the option of radiation. Most likely, it will be chemo therapy or nothing.

Ginny- I am so sorry. My heart breaks for you, and for Earl. Since he realizes it, I would imagine he is very frustrated and having some new/unfamiliar feelings. You are both in my prayers! Renee

After spending a few hours in the ER last night, after a cough that hurt Scott's back. A cough!! We learned that the cancer has now spread to his ribs. The cough caused 2 ribs to break, because they were so weak. We also learned that the tumor in his lung has increased significantly in size. Overnight, he has gon from doing great to, "we don't think he will make it much longer". As long as we can keep his pain under contol at home, until his Dr appt on Tuesday, he will not need to be hospitalized. On Tuesday, he will be re-checked from head to toe. Please pray!!! Thanks, Renee

Debbie- I am so sorry.. Before replying, I said a prayer for you and your husband. I wish I had an answer for you, but we have not experienced this. Hang in there, and trust the lord! Renee

Beth- My husband was also diagosed with sclc with mets to the liver, hip, spine, brain and lymph nodes in Dec 2003. After radiation (full brain) and three rounds of chemo, he did start trowing up blood. It was not a lot, but it was scary! His oncologist said if it is just a little at a time, not to panic. But, if it seemed to be a cup or more, they would want to evaluate him, just to be safe. I am sorry for you, my heart breaks for you! I know how hard it is to watch him suffer. Scott has been lucky (not lucky to have cancer) but, lucky that he has not had much suffering so far. He does have pain in his back and left leg, but not severe enough for pain meds. Even after they replaced his hip, he only required pain med the 1st day after the surgery. I knwo he is in more pain then he tells me, sometimes he can not stand after sitting, or can not walk for a minute once he stands up. When he coughs (most of the time) he has to lean forward, because it hurts his back. if you ever want to talk, you can PM me. I am new on this board, so I am learning to navigate and find my way around here. You and your hubby are both in my prayers!!

Many of you may know this.. Until the company I work for hired me a case worker to handle home health care and insurance claims, I did not. If you are referred to a specialists by your GP. Or, any charges accumulated while in the hospital that may be considered out of network, this should all be paid as "in-network" by your insurance company. Insurance companies do not advertise this! Once I learned this, I filed 44 appeals with my healthcare insurance provider, for charges that were out of network. They adjusted every single payment, and paid more to the healthcare providers, as an in network charge... thus lowering our balance due!

Becky- I suppose you are right, most men do not talk as openly as we would like. When I spoke to his oncologist, who I sometimes think is my counselor.. he told me not to expect it. He said #1, we men are MACHO.. and #2, the last person a man will (in his mind) burden, would be his wife.

I felt compelled to read some of your posts. And I am sure I will read many more. By seeing messages other people have sent you, it is no question why I feel drawn to you. I just want to say thank you for the words you have spoken with your heart, and have shared with so many others. I see you have touched so many people here and I know you have left a place in many hearts. Renee

I am overwhelmed with all of the warm welcomes. I hope I can help many of you as well, even if it is just listening.. or maybe pick you up when you are feeling down. Like me, I know you are all on an emotional roller coasters. For me, it is very difficult not being able to discuss this with my husband. If I try to talk about it, he gets upset, and tells me that he does not have cancer.. he was mis-diagnosed. Or, he will say he had cancer, but it is gone. I am sometimes not sure if it is denial, or if he has really convinced himself, or maybe he is trying to protect me. In the beginning, jhe spoke very openly about it, but he will no longer do that. They determined his type of cancer from his hip. The hip was so badly affected, it actually broke while we were on our way to the Doctors office to hear that he had cancer, and was terminally ill. He had a full hip replacement before they started chemo in December. Since he has decided to no longer take chemo, I have respected that decision. It hurts me to know he is dying. But, it also hurt me to see him suffering from the affects of a treatment regimen that could not cure him, but only make him very ill. I am thankful for the time that they say was bought with chemo, the last 6 months have been wonderful. Scott said he felt like he was making a deal with the devil whil taking chemo. I also admire his faith. He knows if God is ready to bring him home, he will.. no matter how he tries to delay it. I hope I am doing all I can to assure him I love him more than life. And, I hope the things I do will make a difference to him. I am sure it does.. I just sometimes question if I am doing enough. I REALLY wish I could talk to him, but he is out of the country for 2 weeks. He just left Sunday and it seem like it has been an eternity! If I could talk to him while he is gone, it would not be so bad. But, where they are, there is no telephone and his cell phone will not work. Thank you all very much for your kind words, and your prayers! My prayers are with you as well, and your families.

Rachel- Thank you! I needed to hear that someone has so far beat this thing! I spoke to the omcolgist yesterday,and explained a few things that are now happening with Scott. He said it sounds like the cancer cells have started growing agin! He wanted me to bring him in to be checks, because as you know, this cancer is fast! But unfortunately, he is out of town for 2 weeks, so he can not see the Doctor. He will eb home July 3rd, his appointment is July 6th. Needless to say, I am a basket case, and will be until he is home safely. I miss him terribly! I would have gone with him, but 2 weeks in another country (his friend is getting married) was not an option for me, because I have to work. I am praying for his safe return. The Doctor said things that has me so close to CRAZY this week. Thank you for your response. Keep the positive vibes coming, I will try to bounce them back to you! Congratulations on your success!! Renee

Thank you Theresa- It loks as though you have had more than enough experience in dealing with loved ones with cancer. I am sorry to hear all you and your family has been through.

Hello all- This is the first time I have posted on this board. It looks like a wonderful place. My husband is 44 yrs old, and was diagnosed with small cell lung cancer in December 2003. His cancer was not limited. By the time it was DX, it had spread to his hip, liver, spine, lymph nodes and brain. Radiation successfully removed the tumors from his brain. By choice, he stopped chemo in March. At this time he is not on any pain meds, or any med for that matter. He is still able to push himself to do the things he enjoys. Per a discussion I had with his cncologist yesterday, these days will soon end. I look forward to talking to everyone! Renee