hollyridge

God bless your dear mom. Our thoughts and prayers will be with you each day.

I am really nervous about switching. Everyone tells me he's the best. How do I go about switching? Almost all of the onc in this area are in practice together in this huge clinic. Our onc is supposed to be "the savior of all". He told us right from the start that my husband caused his cancer by smoking even though my husband had quit years earlier and I swear I know of some non-smokers with this disease. He says "not a chance." I should have followed my gut. I did not like him from the start but Bill did and so we went with him. Bill has been on three different chemo regimens: Cisplatin/Camptosar, then Carboplatin/VP-16, and then Adriamyacin. The first two regimens gave us complete responses very quickly and then the minute he would declare a remission and stop the chemo it would grow back in a couple of weeks. He really only had one surface tumor for the first 8 months and then it spread to one lymph node in the right armpit and to small amounts on each Adrenal gland. Everything cleared up again within a couple of months of resuming chemo and then we stopped and it came back again. We begged for follow-up radiation but the onc said it was not necessary. Finally 14 months later he decided to get rid of the tumor once and for all and used radiation. The origianl tumor has never returned but now we have mets to the Adrenals, spine, one lymph node, and the "small lesions" in the brain. Against the onc's orders I convinced the radiation doc to radiate the spine and it worked, I then forced them to oder new tests and when the new mets came up we never went back to our onc we just went straight to the rad doc and he started treatment the same day. We need to find a chemo that will clear up the Adrenals. There is a drug designed for Bill's situation which is in phase two but is having some promise. I offered to pay for it out of pocket but the onc said it was worthless to try it. Maybe I shoud seek a second opinion with the onc who is conducting the trial. I am really weary of trying to keep up with this. We need help.

My husband has been fighting this disease now for 20 months. He remains fairly strong although he now has new mets to the brain. The radiation doc says it will respond well to radiation. Our onc told me a month ago (without even seeing him) that he would not make it to Christmas and I should call in Hospice. Well he made it through Christmas and he is making it through treatment and he is not experiencing any pain and he wants to forge on. We go to the movies and out for dinner and play cards with friends and entertain and shop and he plays guitar at church on Sundaysand plays with the grandkids. He is still a very viable man. We see the onc again on Friday but I am really discouraged by his attitude. As long as Bill was in remission and doing really well the onc loved seeing us. Now that the disease is progressing and we really need some intense help he is not interested. He just shakes his head. My husband is still fighting like crazy and we need someone to fight with us. The radiation doc is wonderful. He just keeps plugging along. We want to get into a clinical trial after his radiation but the onc says we are just "chasing our tails". Where do I go from here?

I am so sorry your mom is having a rough time. We are going through some very rough spots right now also. I have been giving my husband anything he wants to eat. Nothing ever sounds good to him so I just give him a normal meal with several different foods and he always eats something. I offer him food every couple of hours. He can always eat applesauce and pudding. He does like smoothies sometimes too. Just keep giving her anything that she might be able to palate. Don't lose hope. . .she may just need this milder chemo to get her back on track.

I am so very sorry about your los. My prayers are with you. Hollyridge

I am so sorry to hear of your loss. Please know that we are praying for you and your family. Hollyridge

I agree that you should see about the Camptosar being combined with a Platinum based drug. The combination is what most oncs are using.

I am so sorry about your friend. I will pray for you and all of the people who are special to you who have battled this horrible disease. God has a plan. . .it is hard to accept but he does have a plan and there is joy at the end of it.[/img]

There is a clinical trial being conducted in several areas of the US on a drug called Velcade (Bortezomib). It is being used successfully at this time to treat people with Multiple Myeloma but it is showing promise for SCLC too. It is specifically for patients who have been previously treated with a platinum based drug and had a relapse or refractory disease. Check this out in your own area and with your doctor. You never know. We were trying to find out more about it when my husband took a turn for the worse.

Has anyone tried Iressa and had success for even a little while?

Anne, I will keep you and your dear mom in my prayers. God bless you and keep you in his loving arms.

I am sorry to say that my dear sweet Bill is doing very poorly. He was fine until the day after Thanksgiving and then pain started in his spine. He still worked until two and a half weeks ago and now he can barely walk with a walker. I take him everyday for radiation to try to help with the pain from the spine mets and it has helped a little. We had Hospice come out and talk to us but he does not want them yet. He still wants to try to get treatment and they won't allow any treatment except for pain. I have my three grown children and their spouses and my parents who are helping me all of the time. We have a hospital bed for him and they put it right up against our bed so we can still sleep holding hands. He is lucid most of the time and other times he speaks nonsense. The pain is horrible sometimes and my heart just cannot take the sadness of watching him suffer. I will not call Hopsice until he wants me to. I can be strong for him. Yesterday I had to wipe him after he went to the bathroom and he started crying because he was humiliated. This is such a nightmare. We bring the gradnkids in almost everyday and they make him happy but they are also sad to see their Papa not moving or playing. I am so tired and I try to keep everything normal and peaceful and nice for him but I feel like I cannot keep up. I pray for God to give me more strength. I pray harder for God to take his pain away. He is only 57 years old. He was such a vibrant man and now he is frail and old looking and weak and sad. I hate this disease so much! I do want to tell all of you about a new stage 2 clinical trial specifically being used on recurrent small cell that was previously treated with a carbon based drug. It is called BORTEZOMIB. It is being used for Multiple Myeloma patients now and is giving them great results for extending life several months. Anne and Debbie. . .I am so sorry and I will pray for you. My heart goes out to all of you who are fighting the last stages of this battle. God be with you all.

My husband, Bill, is experiencing horrendous pain in the past few days that is coming from the mets to both Adrenals. His platelet count is still not back up to a healthy level to start another chemo. Has anyone had radiation for the adrenals? What complications can arise from radiating for pain on both sides like that? The doctor says he will radiate if he has to but it will cause some problems. This pain is so intense that he has to wear the Duragesic patch at 250 micrograms and take Hydromorphone every three hours. Any help is truly appreciated. I had started my communiation on this board by saying he was still well after 18 months but then he suddenly took a turn for the worse.

My husband has been finished with treatment and radiation for about 3.5 weeks now and every other day or so he feels terrible. He worked full time while in treatment but now he is having a very hard time. CT scans show stable disease and no new mets but he is dragging. His blood levels are really low now and especially the platelets so I know that is a big part of it. He has been in treatment since June of 2002 and two months ago was the first time he ever went through radiation. I think that may be the difference. He felt fine during the treatments but now it is very rough. I never know from one day to the next if he is going to be fine or if he is going to be close to wanting to be hospitalized. It is a crazy roller coaster. Onc says it is just his body recovering from a hard chemo. He had Adriamyacin for 4 rounds. Colleen, wife of Bill

My husband has been finished with treatment and radiation for about 3.5 weeks now and every other day or so he feels terrible. He worked full time while in treatment but now he is having a very hard time. CT scans show stable disease and no new mets but he is dragging. His blood levels are really low now and especially the platelets so I know that is a big part of it. He has been in treatment since June of 2002 and two months ago was the first time he ever went through radiation. I think that may be the difference. He felt fine during the treatments but now it is very rough. I never know from one day to the next if he is going to be fine or if he is going to be close to wanting to be hospitalized. It is a crazy roller coaster. Onc says it is just his body recovering from a hard chemo. He had Adriamyacin for 4 rounds. Colleen, wife of Bill

My husband has been treated with CPT -11 and even though he has had some recurrances he is still well and working after 18 months. He has currently has no new mets for the past year and those that he has are on the Adrenals and one lymph node. The main tumor went away with chemo and radiation and has never returned. He is considered extensive stage but is doing well. Please do not lose hope. Seek a second opinion or get into a clinical trial. There is always hope.

We have had more trouble dealing with the side effects of pain medications than anything else. Remember that the chemotherapy is going to reduce his pain and he will not need to use all of the pain meds. The only time my husband has been sick and unable to go to work is when he has gotten sick from pain meds. The chemo usually does not have such ill effects. The blood counts are a problem obviously. Maybe they will reduce the strength of his chemo dose to try to avoid the problem. Things can look very bad one day and then can settle down and go very smoothly the next. Do not panic. It is all a balancing act and they will find the right combination. God bless.

Does anyone ever have trouble with their loved one not doing everything they can to keep themselves healthy. My husband has always done a great job of taking care of himself and getting really healthy since his diagnosis 18 months ago but for the last month he has been not eating the right things and has not been working out as much as he used to and messes up with his medication and then argues with me whenever I ask him to please get back with his program. I really do not understnad what is going on. right now he has residual spots on his adrenals and one lymph node is affected but everything else is clear. He should be feeling great and really giving it his all but something is up. Any help would be appreciated.

Please do not give up hope. There have been many times when things looked grim and then the miracles began. I am praying for you and your mom.

Please do not give up hope. There have been many times when things looked grim and then the miracles began. I am praying for you and your mom.

My husband is getting radiation for a tumor on his chest wall that will not stay gone with chemo. The radiation was started for pain but now the doctos think they can get rid of it. His other met was just microscopic spots on the adrenals. That easily goes into remission with the chemo. He is having a CT scan today to see what the radiation has taken care of so far. Believe it or not, some people do survive this disease. I am praying that miracles happen for all of us.

My husband is getting radiation for a tumor on his chest wall that will not stay gone with chemo. The radiation was started for pain but now the doctos think they can get rid of it. His other met was just microscopic spots on the adrenals. That easily goes into remission with the chemo. He is having a CT scan today to see what the radiation has taken care of so far. Believe it or not, some people do survive this disease. I am praying that miracles happen for all of us.

My husband is 56 years old and was diagnosed in May of 2002 with extensive stage SCLC. He has been on chemo almost continually for 17 months and now has started radiation for the tumor on his right chest wall. He responds completely to the chemo but the tumor starts growing again within weeks of stopping chemo. He has a fantastic attitude and a very strong will. He has only missed three days of work in 17 months and still takes care of everything around the house and plays golf and this summer he bought a boat that we play on several times each week. We have been on four vacations since his diagnosis and are leaving again in a couple of weeks. He just times the vacations to make room for chemo. He is an inspiration to me and our three grown kids and four grandbabies. I am new here but would like to here of other inspiring stories.