pjoi4
05-05-2006, 07:45 PM
Hello Everyone,
I know it’s been awhile since I last posted on my husband with nsclc. I just wanted to focus on getting through his treatments. I slowly watch the chemo physically take the life out of him. He looks like the picture of death. He was supposed to take 8 rounds of chemo and was told to stop after round 6. The CT Scan at that time showed no changes at all and that the tumor remained unchanged. We were told that you could have three types of results, unchanged, growing, or shrinking. My husband opt to continue until the 8th round. Upon our doctor's visit on May 2. My husband had told the doctor that he had been coughing up pinkish like stuff in his phlegm. The doctor immediately told him that he was not going to administer the Avastin anymore. He was supposed to stay on Avastin even after the last treatment. But any signs of blood in the phlegm could mean that he might be bleeding internally. He also indicated that the 8th round of chemo would not make any difference because according to this latest CT Scan a row of black lymph nodes have appeared along the lining of his pleural but everything else remains the same. The doctor said for my husband to either start on the Tarceva pills or he could take a month or two off to feel good. We were told that the side effects of the Tarceva were rashes and diarrhea. We were also told that because my husband was never a smoker that this would be the best choice for his 2nd line of treatment since the 1st line no longer is responsive. My husband thanked the doctor very much for his quick action in getting him started on his treatments. Out of respect for the doctor my husband also mentioned to him that he would seek a second opinion during his break possibly at MD. Anderson and that he wanted the Dr. to know this. Our Onc is a young Dr. and have a great bedside manner. But we feel that he has taken us as far as he could and that we needed to try something a little different across the street. MD Anderson is just a hop and a skip down the street. Of course, the Dr. (Onc) had his say about how you might be a test case or an experiment case and that everything that they had over at MD. Anderson they had it there. The Onc also went as far to say that the only reason you would be looking for a second opinion is if you are looking for hope? Why does he think we are going through all this pain and suffering in the first place? He also went as far to say we must all die someday. It was as if to say, it wouldn’t do you any good to go over there because it will be a waste of time. I was happy with the Onc up until that point of the conversation. I immediately called M.D. Anderson the next day. I had already done my research on 10 doctors that was accepted by our Blue Cross HMO and they were all on the list. We are fortunate that my husband was able to get approval for long-term disability. We just have to pay our own portion of the insurance to his work. I spoke to a lady there who was so nice and asked me a few questions and got the process started right-away she gave me a list of 7 things that they would need from his chart to get started and also warned me of possible trouble to get the referral from the PCP's office. I had my husband sign off on the release of medical records and before we left the doctor's office let them now we need them to expedite things. I hope that by Monday we will have the necessary paperwork sent to M.D. Anderson. I was told that an appointment could be made 2 to 3 days after they receive everything. We were very glad. I just have to stay on top of things to make sure that everyone does what they said they would do in reference to his medical records being sent to us and MD. Anderson. My husband does even want people to see him anymore. He is very subconscious about his looks. He was really down right before the results and I had to try to perk him up. After getting the results, I convinced him to tell his mom who will stay with us until he gets better. I told my husband that it is not fair to keep carrying this deep dark secrete around. I was getting tired of constantly lying to his family about his health and I was also getting tired of listening to him put 20 different spins on what's going on with his health when he talks to others on the phone. We have been carrying this secrete now for 6 months. I felt at least his mom deserves to know. My husband is from a completely different culture and I knew that his mom would talk to other family from back home. This has caused a lot of chaos now. His mom sort of knows the truth. She cried all night and this morning I took my husband out for a drive and his mom called most of his sisters and brothers. There are 5 of them. They started blowing up my husband's cell phone demanding to know what's going on and why is mommy calling them crying. They even demanded to speak with me wanting to know what is going on with my brother’s health as if to say that I am doing something to him. I am prepared for a weekend of hell and torture. Everyone seems to want to know the bad news but can't seem to handle it once told. What could they do? They all have suggestions and answers as to what we should be doing an who we should be seeing not taking into account that medical insurance plays a huge part in everything. I told my husband that I would rather he tell his family now that he sort has good spirits and some energy than to try to tell his family at his weakest hour. I told him to remain calm do not shout and do not get upset. We have dealt with this just the two of us for 6 months. I wanted him to please remain calm because there is nothing that any of his family members can do besides pray for him, wish him well, and call occasionally to see how he is doing. Yelling and shouting, and getting mad does not solve his problem. They seem to keep forgetting this health battle is not about them, it is about him.
Sorry for being so long winded today but so much has happened since my last post. I will keep you all posted on the second opinion (please pray for us) if we get the opportunity to see the Onc. at MD Anderson.
God Bless You and Your Families Every Single Day!
Renea
I know it’s been awhile since I last posted on my husband with nsclc. I just wanted to focus on getting through his treatments. I slowly watch the chemo physically take the life out of him. He looks like the picture of death. He was supposed to take 8 rounds of chemo and was told to stop after round 6. The CT Scan at that time showed no changes at all and that the tumor remained unchanged. We were told that you could have three types of results, unchanged, growing, or shrinking. My husband opt to continue until the 8th round. Upon our doctor's visit on May 2. My husband had told the doctor that he had been coughing up pinkish like stuff in his phlegm. The doctor immediately told him that he was not going to administer the Avastin anymore. He was supposed to stay on Avastin even after the last treatment. But any signs of blood in the phlegm could mean that he might be bleeding internally. He also indicated that the 8th round of chemo would not make any difference because according to this latest CT Scan a row of black lymph nodes have appeared along the lining of his pleural but everything else remains the same. The doctor said for my husband to either start on the Tarceva pills or he could take a month or two off to feel good. We were told that the side effects of the Tarceva were rashes and diarrhea. We were also told that because my husband was never a smoker that this would be the best choice for his 2nd line of treatment since the 1st line no longer is responsive. My husband thanked the doctor very much for his quick action in getting him started on his treatments. Out of respect for the doctor my husband also mentioned to him that he would seek a second opinion during his break possibly at MD. Anderson and that he wanted the Dr. to know this. Our Onc is a young Dr. and have a great bedside manner. But we feel that he has taken us as far as he could and that we needed to try something a little different across the street. MD Anderson is just a hop and a skip down the street. Of course, the Dr. (Onc) had his say about how you might be a test case or an experiment case and that everything that they had over at MD. Anderson they had it there. The Onc also went as far to say that the only reason you would be looking for a second opinion is if you are looking for hope? Why does he think we are going through all this pain and suffering in the first place? He also went as far to say we must all die someday. It was as if to say, it wouldn’t do you any good to go over there because it will be a waste of time. I was happy with the Onc up until that point of the conversation. I immediately called M.D. Anderson the next day. I had already done my research on 10 doctors that was accepted by our Blue Cross HMO and they were all on the list. We are fortunate that my husband was able to get approval for long-term disability. We just have to pay our own portion of the insurance to his work. I spoke to a lady there who was so nice and asked me a few questions and got the process started right-away she gave me a list of 7 things that they would need from his chart to get started and also warned me of possible trouble to get the referral from the PCP's office. I had my husband sign off on the release of medical records and before we left the doctor's office let them now we need them to expedite things. I hope that by Monday we will have the necessary paperwork sent to M.D. Anderson. I was told that an appointment could be made 2 to 3 days after they receive everything. We were very glad. I just have to stay on top of things to make sure that everyone does what they said they would do in reference to his medical records being sent to us and MD. Anderson. My husband does even want people to see him anymore. He is very subconscious about his looks. He was really down right before the results and I had to try to perk him up. After getting the results, I convinced him to tell his mom who will stay with us until he gets better. I told my husband that it is not fair to keep carrying this deep dark secrete around. I was getting tired of constantly lying to his family about his health and I was also getting tired of listening to him put 20 different spins on what's going on with his health when he talks to others on the phone. We have been carrying this secrete now for 6 months. I felt at least his mom deserves to know. My husband is from a completely different culture and I knew that his mom would talk to other family from back home. This has caused a lot of chaos now. His mom sort of knows the truth. She cried all night and this morning I took my husband out for a drive and his mom called most of his sisters and brothers. There are 5 of them. They started blowing up my husband's cell phone demanding to know what's going on and why is mommy calling them crying. They even demanded to speak with me wanting to know what is going on with my brother’s health as if to say that I am doing something to him. I am prepared for a weekend of hell and torture. Everyone seems to want to know the bad news but can't seem to handle it once told. What could they do? They all have suggestions and answers as to what we should be doing an who we should be seeing not taking into account that medical insurance plays a huge part in everything. I told my husband that I would rather he tell his family now that he sort has good spirits and some energy than to try to tell his family at his weakest hour. I told him to remain calm do not shout and do not get upset. We have dealt with this just the two of us for 6 months. I wanted him to please remain calm because there is nothing that any of his family members can do besides pray for him, wish him well, and call occasionally to see how he is doing. Yelling and shouting, and getting mad does not solve his problem. They seem to keep forgetting this health battle is not about them, it is about him.
Sorry for being so long winded today but so much has happened since my last post. I will keep you all posted on the second opinion (please pray for us) if we get the opportunity to see the Onc. at MD Anderson.
God Bless You and Your Families Every Single Day!
Renea
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tuckygal
05-05-2006, 08:10 PM
Renea, God bless you and your husband and family also. In almost every situation with a serious illness, there are family members who don't know how to handle it and let it all come out in anger, at the illness but it comes across as anger at people. I will keep you in my prayers, with the number one prayer being that the doctors at the other facility can come up with treatment your husband will respond to. Just know that so many here are thinking of you and praying for you. Love from Ky., Pat
Janmarie2
05-05-2006, 08:24 PM
Renea, So sorry to hear of all that has been going on in your life since you last posted. I think getting a 2nd opinion at MD Anderson is a great idea and most I have heard talk about them have been happy with the care they got there. I also want to say shame on that doctor with his comment about hope as long as a perosn is alive they need to have hope. I think when dealing with cancer the focus of hope changes as we move along in the battle but until we are dead we need hope and no one has the right to dismiss it.
I hope things settle down with the family, perhaps it is just the anger of having not been told about this earlier and when they adjust to the news they will calm down. Anger is often born of fear and right now they may just be consumed with fear.
My mom is one that responded well to Tarceva so If that is what they decide to try on your husband I hope he sees the results she did as it is responsible for my mom still being with us and doing as well as she is despite being NSCLC stage IV since June 2004. My paryers to you and your husband. JanMarie
I hope things settle down with the family, perhaps it is just the anger of having not been told about this earlier and when they adjust to the news they will calm down. Anger is often born of fear and right now they may just be consumed with fear.
My mom is one that responded well to Tarceva so If that is what they decide to try on your husband I hope he sees the results she did as it is responsible for my mom still being with us and doing as well as she is despite being NSCLC stage IV since June 2004. My paryers to you and your husband. JanMarie
pjoi4
05-05-2006, 11:43 PM
Pat and JanMarie,
Thanks for your prayers and kind words. JanMarie, I searched your previous posts regarding Tarceva for my husband. I showed him the post regarding your mom's success with this drug. He was very excited to read about the wonderful results that your mom was having with Tarceva. It gave him a huge burst of hope and energy and he is very anxious to continue the fight with more fire than before! He knows the odds with any drug and their effects.
Again, thanks for making our evening a joyful one after a very long and stressful week. It is so nice to read about the shoes you will walk in before the journey so you know what to probably expect.
Renea
Thanks for your prayers and kind words. JanMarie, I searched your previous posts regarding Tarceva for my husband. I showed him the post regarding your mom's success with this drug. He was very excited to read about the wonderful results that your mom was having with Tarceva. It gave him a huge burst of hope and energy and he is very anxious to continue the fight with more fire than before! He knows the odds with any drug and their effects.
Again, thanks for making our evening a joyful one after a very long and stressful week. It is so nice to read about the shoes you will walk in before the journey so you know what to probably expect.
Renea
Janmarie2
05-07-2006, 09:56 PM
Renea, I am glad that my mom's experience with Tarceva can be an inspiration to your husband. Elsewhere I have read posts by others that have had such success with it and are now in year two of taking it as well as some that started out on Iressa and did 2-3 yrs of it then switched to Tarceva and are still going. I even wonder if my mom's doctor should have kept her on it longer, he took her off when the liver mets began progressing yet I have seen some cases where some people did have some progression but stayed on it and added chemo to the batlle and had great next scans. Tarceva does only work for a small percent but when it does it seems like the results usually pretty outstanding.
I do not know if I mentioned in any of my pasts posts how after first line chemo of carboplatin and Taxol my mom was so weak and the doctor told her he would give her two months off for her to go enjoy herself and she asked how can I do that when I can not do anything? He just ignored that but as time went on she got weaker and weaker and with Christmas approaching we all wondered if she would be alive to see it and we all felt certain it would be her last if she did make it that long. She got so weak she could not walk more then a few steps and was very short of breath too. My mom use to have beautiful legs even in her late 70's and one day while shopping and wearing shorts an elderly man approached her and told her she had beautiful legs, well she tought it was a pick up line! A few weeks later some friends from work were looking at some photos of my mom with some puppies we helpd rescue and several of them said " wow your mom has beautiful legs!" So I do not think the old man was trying to pick up on her . Anyway her beautiful legs became sticks from muscle wasting atrophy so to take her anywhere we used a wheelchair.Yea things were looking their darkest and she looked near death. Then at a visit to her oncologist I noticed she had a low grade fever and called it to his attention, well he wanted to write it and everything else off to cancer progression . He heard crackles in her chest and said " oh she has a pleural effussion again" I insisted he check her for a urinary tract infection( UTI) and pneumonia, he finally gave in and checked for the UTI which was positive but would not order a chest Xray. We went around him ( not easy to do with Kaiser as your HMO)and contacted the pulmonary doctor she had seen a few times and convinced him to order a chest xray and sure enough she had a pneumonia, her whole right lung was whited out so he put her on better antibiotics then the oncologist had given her for the UTI and the oncologist started her on Iressa( a month later switched her to Tarceva which had just come out). She went home took her meds and by the very next day was able to walk down the hall without feeling as short of breath and everyday got better and as she walked more she got stronger and went from the brink of death back to living a quality life. It all happened so fast after starting the drugs. I was quite angry to think that they would have allowed her to die back in Dec 2004 as she probably would have become septic in another day or two. Boils ones blood to see that!
I am telling you this story to show you that even when things may look the darkest there still is hope as 2005 was a very good year for my mom despite how the end of 2004 looked. As I said before My family will always be thankful the Gentec for inventing Tarceva and I even called them to tell them this as while it may not save her life it took her from deaths door to a quality life. I really believe that in the not so far future the biological drugs will replace chemo and cancer treatment will be managed more like a chronic illness then a terminal one, lets hope I am right! I have to get to work so grab on to that Hope and I will send lots of prayes your Husbands way, Best wishes to you both, JanMarie :cool:
I do not know if I mentioned in any of my pasts posts how after first line chemo of carboplatin and Taxol my mom was so weak and the doctor told her he would give her two months off for her to go enjoy herself and she asked how can I do that when I can not do anything? He just ignored that but as time went on she got weaker and weaker and with Christmas approaching we all wondered if she would be alive to see it and we all felt certain it would be her last if she did make it that long. She got so weak she could not walk more then a few steps and was very short of breath too. My mom use to have beautiful legs even in her late 70's and one day while shopping and wearing shorts an elderly man approached her and told her she had beautiful legs, well she tought it was a pick up line! A few weeks later some friends from work were looking at some photos of my mom with some puppies we helpd rescue and several of them said " wow your mom has beautiful legs!" So I do not think the old man was trying to pick up on her . Anyway her beautiful legs became sticks from muscle wasting atrophy so to take her anywhere we used a wheelchair.Yea things were looking their darkest and she looked near death. Then at a visit to her oncologist I noticed she had a low grade fever and called it to his attention, well he wanted to write it and everything else off to cancer progression . He heard crackles in her chest and said " oh she has a pleural effussion again" I insisted he check her for a urinary tract infection( UTI) and pneumonia, he finally gave in and checked for the UTI which was positive but would not order a chest Xray. We went around him ( not easy to do with Kaiser as your HMO)and contacted the pulmonary doctor she had seen a few times and convinced him to order a chest xray and sure enough she had a pneumonia, her whole right lung was whited out so he put her on better antibiotics then the oncologist had given her for the UTI and the oncologist started her on Iressa( a month later switched her to Tarceva which had just come out). She went home took her meds and by the very next day was able to walk down the hall without feeling as short of breath and everyday got better and as she walked more she got stronger and went from the brink of death back to living a quality life. It all happened so fast after starting the drugs. I was quite angry to think that they would have allowed her to die back in Dec 2004 as she probably would have become septic in another day or two. Boils ones blood to see that!
I am telling you this story to show you that even when things may look the darkest there still is hope as 2005 was a very good year for my mom despite how the end of 2004 looked. As I said before My family will always be thankful the Gentec for inventing Tarceva and I even called them to tell them this as while it may not save her life it took her from deaths door to a quality life. I really believe that in the not so far future the biological drugs will replace chemo and cancer treatment will be managed more like a chronic illness then a terminal one, lets hope I am right! I have to get to work so grab on to that Hope and I will send lots of prayes your Husbands way, Best wishes to you both, JanMarie :cool:
kris114
05-18-2006, 07:38 PM
Yes, please have your husband try the Tarceva. My mother had the malignant pleural effusion, and two oncologists and her surgeon basically said there was nothing they could do. I learned about Tarceva from JanMarie on this message board. My mom is a non-smoker with NSCLC adenocarcinoma; she also has the genetic mutation in her tumor that is responsive to Tarceva. We went to a third oncologist and he immediately started her on Tarceva. Last week after 2 months on the Tarceva, her pet scan came out with no sign of the cancer. It is a miracle, and I thank God every day for finding this message board, and for the support and ideas that are shared by everyone, especially Janmarie. I understand that the Tarceva is a very targeted drug, and only works for about 10% of lung cancer patients, so I don't want to raise any false hopes, but I've put everything in God's hands. God bless you and your husband.