stand4hope Posted June 4, 2004 Share Posted June 4, 2004 Ok, friends. I'm ready to let it all out. We got the "official" results today. As you know, we got the PET scan results on Tuesday because of the severe shoulder pain my husband was having. I asked for a copy of the report, and the rest of the report was a shock. The cancer is now in the following areas: lung, brain, heart, liver, shoulder, upper and lower spine, hip, rib and pelvis. The shoulder was the most intense, and the rib was the least intense. Today's CT results confirmed a small (17mm) tumor in the liver, and that the pericardial effusion is distinctly larger than the last scan. The treatment plan is that the radiation will begin on Monday for the shoulder. The onc discussed Iressa and Cisplatin as being about the only options. He gave the same info that all of you have provided about Iressa, that the success is limited and most effective in females that have never smoked. He discussed the side effects of the Iressa and Cisplatin. He said the Iressa success rate is about 10%, and the Cisplatin about 30%, at least at this level of advanced disease. After he got his first IV of Zometa, we went across the street for our second appointment which was with the Novalis onc that gave us the results of the MRI. The four remaining brain tumors are stable - no change. The primary onc was very kind when presenting all of this and referred to it as "systemic worries". He is a fantastic doctor and has been very aggressive with my husband's cancer because of his good health. He left the options of trying Iressa and Cisplatin to us and asked us to think about it. He said he could get the Iressa now, but would prefer that he wait until after the shoulder radiation is finished before starting Cisplatin. My husband is devastated - very shocked and very angry. I think I am also still in shock, but at least now I can talk about it without crying. Over the next few weeks, my personal plan is just to be with him as much as possible and just wait for him to talk it out. Eventually he will - but I have to be patient. There it is - FULL DISCLOSURE. I have to sign off right now because we are meeting family for dinner. I am thrilled that my husband is going to go, too. I didn't think he would want to. I'll be back on later tonight. I love you all, Peggy Quote Link to comment Share on other sites More sharing options...
Elaine Posted June 4, 2004 Share Posted June 4, 2004 Peggy, I am so saddened by the results you wrote. I dont think there are words to make the shock and pain any better for either of you. After while, I thought I would be numb to reading bad news, but I am not. I still cry. But like you keep saying, there is always that four letter word--HOPE. I don't know if it will help or hurt for you to read the post I did late last night on "Who am I now" etc and the many thoughful responses to it. If it helps read it, if not just close it up. It may offer some insight, and then again it may have nothing to do with how your husband feels. I am glad you two are going out. Some time away from it all is a blessing. elaine Quote Link to comment Share on other sites More sharing options...
Snowflake Posted June 4, 2004 Share Posted June 4, 2004 Peggy, It's still "do-able". Don't give up that Hope and Faith you have in such abundance! Many on here have been treated for bone mets... Iressa may appear to work better MOSTLY in women who've never smoked, but it also works in some men. Not sure on the other one listed, no experience there... Hang in there, I'm with you all the way! Becky Quote Link to comment Share on other sites More sharing options...
ginnyde Posted June 5, 2004 Share Posted June 5, 2004 Peggy, The only odds that are not good are 0%. I have not liked any of the odds Earl has heard but this little voice in the back of my optimistic brain said why can't Earl be in the 10% or the 30%. You have got to think that way or you will go bonkers. The first few days of bad news are bad days. And with the added burden of your Dad, this is really tough for you. But the little bird of optimism will sneak back into your life and you will work as hard as you can to have your sweetheart in that winning percent. I wish Earl would talk to me about how he feels about this dam* disease. He is the poster child for macho men don't eat quiche or discuss feelings. You have been in my thoughts and prayers the last few days. I will pray extra hard tonight for you and your family. Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted June 5, 2004 Share Posted June 5, 2004 PEGGY, I'm verysorry to hear that.However don't give up hope.Give the treatments a chance WHO KNOWS.We are all here for you whenever we are needed. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 5, 2004 Share Posted June 5, 2004 Peggy, I am sorry that this thing has spread so extensively. I am with the others --hold on to the hope and your faith. There are still things to try. You both are in my prayers. Don Quote Link to comment Share on other sites More sharing options...
Addie Posted June 5, 2004 Share Posted June 5, 2004 No one can fault you for needing some time to absorb such news, Peggy. Not that anyone here would, anyway.... But I keep thinking of your user name and why you chose it....and I know, despite the news you just received....that you WILL continue to stand for hope. And we will be standing right there with you! Guaranteed! I'm glad you were out with family tonight....and gladder still that hubby was willing to go. In the face of bad news....it often helps to be with loved ones and find some time away from what is running thru our heads. Keeping you both in my continuing prayers....and throwing in a few extra...just because. Quote Link to comment Share on other sites More sharing options...
karenl Posted June 5, 2004 Share Posted June 5, 2004 Hi Peggy So sorry to hear about the progression of the cancer. I have to ditto everyone else here and say keep up the fight!!! There is still plenty of reason to hope and still treatment options. If you are looking for inspiration, try www.gawler.org My sister and I have both mentioned this man before. He didn't have lung cancer, but he had 'terminal' osteogenic sarcoma, and at one point was given 2-3 weeks to live. That was 30 years ago, and he continues helping others to battle cancer through non-traditional therapies. I'm not suggesting you should necessarily adopt his treatment programme, merely offering an example of a man who has beaten EXTREMELY bad odds - it CAN be done! Keep the faith! Karen Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted June 5, 2004 Share Posted June 5, 2004 Peggy so sorry to hear this. Hang in there. My thoughts and prayers are with the both of you. Peace, take care and God Bless. Rich Quote Link to comment Share on other sites More sharing options...
Geoff Posted June 5, 2004 Share Posted June 5, 2004 Peggy, My heart goes out to you and your husband as you digest this news. I echo everyone’s statements don’t loose faith or hope. I will be praying for the specific areas of concern. Also I don’t know what if any supplements or additional meds you husband is on but I’ve been reading a lot about celebrex and green tea. Here is a link to a site regarding celebrex. My mom is on 400 milligrams a day her Onc at Sloan had no problem prescribing it and she (the onc) is very conservative. http://www.med.cornell.edu/news/press/2 ... 14_03.html God bless, Geoff and Melinda Quote Link to comment Share on other sites More sharing options...
Andrea Posted June 5, 2004 Share Posted June 5, 2004 Peggy, My heart goes out to you. I am sorry I missed this post yesterday. You have so much strength and courage and please never ever give up HOPE. I am glad that you are happy with your onc and I hope the new treatments work and especially that the physical pain lessens in the shoulder area. I am not sure what to say, I just want you to know I am thinking of you and your fammily Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 6, 2004 Author Share Posted June 6, 2004 Once again, thank you each and every one. You are all so very wonderful. Yesterday and today were better, however, tonight hasn't been so great. It has suddenly hit my husband that he might not make it through this. He said it was the first time over the past 10 months he has even considered the possibility. I'm having a hard time dealing with this sudden realization and his shocked and angry reaction. It has concerned me all along that he didn't know, and didn't want to know, how serious this disease is. I've debated for months whether or not to tell him how tough this fight was going to get, but because of his wonderful optimistic attitude that he was going to beat it, I just didn't have the heart to tell him what COULD happen. I still think I made the right decision because he would have been just as shocked then, and plus, he wouldn't have liked hearing it from me anyway. It was better that he hear it from the doctor. I think perhaps if he had known the "possibilities" he wouldn't have fought as hard as he has. I just pray, pray, pray that he will continue to be optimistic and fight this disease. I have told him that the choice is his. I've given him the information he wanted about the drug choices and he isn't happy about either one. BUT, Geoff, a little while ago, I printed the link on the Celebrex info you provided above and gave it to him, and I think it is helping to give him some renewed hope. Thank you very, very, very much for that link. The temperature in this house has been about 350 degrees tonight, and I think that article just reduced it to about 150. God please help us! In Jesus' name, amen. All my love to you all, and again, thank you, thank you, thank you. Peggy Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 6, 2004 Share Posted June 6, 2004 Peggy, My heart is breaking for you and your husband just having to deal with this shock. We still keep the prayers coming for stablization and for your husband to get past the anger, which is normal. God Bless you both. Quote Link to comment Share on other sites More sharing options...
Addie Posted June 6, 2004 Share Posted June 6, 2004 I imagine it must feel something like getting that original dx, when one has been so optimistic and then gets hit with news like this. I wish there were some way to just wave away the anger and the shock of those possibilities that your hubby was too optimistic to even consider before. Would that it was so easy. I'm glad the article on Celebrex has provided a break in the mood...and I'm sending up a prayer that renewed hope will keep the temperature down in your house and keep you both moving ahead with strength, purpose, hope and determination. Many, many others have overcome setbacks already. I'm sending all my positive thoughts that this setback for you will be overcome as well. Prayers will continue....and I'll be thinking of you both. Quote Link to comment Share on other sites More sharing options...
Ry Posted June 6, 2004 Share Posted June 6, 2004 Peggy, I'm glad to hear your doctor is being aggressive and working hard for you. I answered your PM on Iressa. Wish you both the best. Rochelle Quote Link to comment Share on other sites More sharing options...
J.C. Posted June 6, 2004 Share Posted June 6, 2004 Peggy, The oncologist already talked about NEXT plan for your husband, so that is HOPE, Your husband opened up to you tonight, that is FAITH in you. Prayers going your way, so all will be for the best, communication between you and your husband, about his feelings and treatments that will help him and renew his hope and faith. Hugs. J.C. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 7, 2004 Author Share Posted June 7, 2004 Thank you again. All of your comments, prayers and good wishes mean so much to me. Also, thanks to those of you who sent responses to my questions about Cisplatin on another forum. I wanted to let you know that we have actually done some talking about all this and he has decided to give Iressa a try. He isn't going to start it though until next week (6/14) because he doesn't want to deal with any side effects this week while he is on vacation. The week was supposed to be a motorcylce trip which he, of course, cannot do now, so he said he is going to enjoy it like he had originally planned. I don't blame him for that, and I fully support that decision. We don't have to decide about the Cisplatin for several weeks because of the radiation, so we decided to not even think about that one until the time gets closer. We are also considering Celebrex, as well as an alternative method called IV C (intravenous ascorbic acid or Vit. C) that Dave S and Cheryl have received. Radiation to the left shoulder will start tomorrow and continue for 14 treatments (M-F). Today was a much better day. Ginny, you are right, the first few days of bad news are the worst - I remember the same type of feelings and reactions after the initial diagnosis. Once again, thank you for all for being here for me, and may God bless you all. Love, Peggy Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted June 7, 2004 Share Posted June 7, 2004 Peggy, I don't know how I missed this post before. My prayers and heart are going out to you and your husband. As soon as I post this, I will say a prayer, especially for both of you. Throughout the day, whenever I think of it, I send up prayers for everyone on this board. May God give you both hope and comfort. May He ease the stress you are feeling. Cat Quote Link to comment Share on other sites More sharing options...
Tiny Posted June 8, 2004 Share Posted June 8, 2004 Dear Peg- Just logged on after an absence of a few days and was disheartened by your news. But as I read further it looks as if you have alternatives and some things to try and that you are both commited to trudging onward through this morass called LC. The vacation idea sounds great--enjoy the trip and hope you can compartmentalize the LC to a spot far back in your minds until you get back. Praying for you. Quote Link to comment Share on other sites More sharing options...
DianeR Posted June 9, 2004 Share Posted June 9, 2004 Peggy, I am so very sorry to hear about your husband's results. He does sound like he is a real fighter. I hope and pray the Iressa works for him. I think it is wonderful he is going on vacation and this alone can do him a world of good! My thoughts and prayers are with you both. Diane Quote Link to comment Share on other sites More sharing options...
karen335 Posted June 9, 2004 Share Posted June 9, 2004 Peggy, I just saw your post. I am sorry to read the results of your husband's tests. He is a strong person and in otherwise good health. With the Lord watching over him, he will persevere. Just believe in your heart and our prayers are answered. We claim that healing for your husband... Thinking of you and always in my prayers. Blessings, prayers and hugs, Karen Quote Link to comment Share on other sites More sharing options...
sharyn Posted June 10, 2004 Share Posted June 10, 2004 Peggy, So sorry for the delay in this reply... I did not see the post earlier. I am sorry that you didn't get the best news, but I have to say your Onc impresses me immensely... As long as he says "lets try" there is HOPE and you and your husband must remember that and keep kicking butt!!! My prayers are with you... Sharon Quote Link to comment Share on other sites More sharing options...
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