kimblanchard Posted January 7, 2004 Share Posted January 7, 2004 Hi friends, Bill met with the radiation oncologist yesterday to discuss bone mets. Going into the appointment he was feeling very positive, knowing that the cancer in his lungs had shrunk 30% at the last scan and that the brain tumor had been handled effectively last January. However a bone scan revealed new mets to sternum, scapula, ribs, and sacrum in addition to the 2 vertebrae. He was going in with the attitude that he was beating this disease and that the bone mets had to be dealt with. Long story short - the radiation oncologist burst his bubble. She pretty much told him that nothing could be done for the mets - unless they caused him pain - and that he would have to stop the chemo (that is working!!!) if he wanted radiation to stop pain. He left there feeling that even if the lung cancer cleared in the lungs, the bone mets would eventually kill him. He is so depressed today. We are leaving in a few minutes for a chemo appointment. Any words you can offer him??? He won't get online but I will certainly print off any replies and he will read them. Thanks for listening friends. I HATE CANCER!!!!!!!!!!!!!!!!!!!!! Peg Quote Link to comment Share on other sites More sharing options...
cathy Posted January 7, 2004 Share Posted January 7, 2004 Dear Peg and Bill, I am sorry that your news wasnt what you were hoping for. Just remember dont give up, fight with everything you have to fight with, explore all options, take a while to think about what is best for you, then give it all you have. Will keep you in my prayers. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted January 7, 2004 Share Posted January 7, 2004 Peg, so sorry Bill has to endure more mets. You might ask about Zometa. It is a once-a-month IV that helps strengthen bones and ward off bone mets. Lucie has been on it for 6 months now. We were also told that radiation is not done on bone mets unless there is acute pain or the bone integrity is threatened. I am surprised they would stop chemo since Lucie had chemo and radiation at the same time. My prayers are with you both. Don Quote Link to comment Share on other sites More sharing options...
Tami Posted January 7, 2004 Share Posted January 7, 2004 Peg, give him a chance to catch his breath (those negative appointments can really turn you inside out) and then help him get on with living. I would talk with your docs again. If he is otherwise strong and feeling all right why can't they do the radiation and chemo together? When I had my radiation (12 crummy weeks of it!) I had chemo at the same time. It's not fun but it's doable. I'd check on it again--I don't understand why it should be either/or... Especially when the chemo is helping the lungs. Quote Link to comment Share on other sites More sharing options...
john Posted January 7, 2004 Share Posted January 7, 2004 Peg, I agree with Don. Zometa and there are newer biphosphonates (YM529) that help prevent the breakdown of the bone. I think you need a new radiaiton oncologist possibly also. Bone metastasis may cause problems due to fractures or hypercalcemia (sp?). Zometa should prevent these and like Don said prevent future bone mets. Also there are two kinds of bone mets. Lytic (break down) bones and blastic (growth). Lytic mets are the ones that cause fractures. Sometimes they are mixed. BTW - my mom supposedly had bone mets all over but never had pain or problems from them. The liver mets probably were worse for her Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted January 7, 2004 Share Posted January 7, 2004 peg, i dont really know what to say except that I too believe bone mets can be quickly zapped with radiation. maybe he could finish the chemo and then get on the rad schedule?? Quote Link to comment Share on other sites More sharing options...
bobmc Posted January 7, 2004 Share Posted January 7, 2004 Dear Peg and Bill; Sending some prayers for ya!! I agree with Tami, sometimes we just gotta breath a minute, When we hear the news the cup seems always half empty until we able to figure out the alternatives, OVERLOAD, if you know what I mean, give em a (((HUG)))) today, and get on with the battle tomorrow. let go and let God, Peg, know your in my thoughts and prayers. this too shall pass!! God bless and be well Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01 MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack PET taken 1/5 - hot spot in mediastinum May be cancer?? "Absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
Nancy O. Posted January 7, 2004 Share Posted January 7, 2004 Positive vibes being sent your way. I don't have any words of wisdom, but would talk more to the doctor about the options. It seems that others from the forum here have gone through simular situations. My best to both of you. Nancy O. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 7, 2004 Author Share Posted January 7, 2004 Peg I found out several months ago that I had many bone mets and was told by my oncologist that the chemo would take care of them. I believe she was right because I was having lower back pain and it went away without radiation and I haven't had any other bone pain at all. Hang in there and tell Bill not to get discouraged. Bess B Quote Link to comment Share on other sites More sharing options...
Lisa O Posted January 8, 2004 Share Posted January 8, 2004 I have had one doctor burst my bubble, only to find the next one full of hope and encouragement. Please don't hang hope on the words of one fallable doctor. You will remain in my thoughts and prayers. Lisa Quote Link to comment Share on other sites More sharing options...
Andrea B. Posted January 8, 2004 Share Posted January 8, 2004 Dearest Peg, I am so sorry to hear that you didn't get the news you were hoping for and more sorry that one doctor can make you feel so down. Remember that with this awful disease there are dark days and there are bright days. Don't let any doctor discourage you and make you lose hope. My mom was told two weeks ago that she would die in the hospital by a very thoughtless doctor. The first time any doctor has told her anything negative. It made my mom so depressed, but she continued to fight and is continuing now and making great strides. If you are not happy with that radiation oncologist then visit another. When there is life there is hope. Many blessings and a big hug to you. You are both in my prayers. Andrea Quote Link to comment Share on other sites More sharing options...
Connie B Posted January 8, 2004 Share Posted January 8, 2004 Dear Peg and Bill, Well, not much I can add to what everyone else has already said. I think the taking a deep breath and let the dust settle will give you both a better look at that next plan of attack. We never say never here, as you well know. So on that note, I will continue to keep you and Bill in my thoughts and prayers. Stay strong and you know we are all here for you both! Quote Link to comment Share on other sites More sharing options...
LindaMRG Posted January 8, 2004 Share Posted January 8, 2004 Dear Peg and Bill, We just went to the oncologist today with my father. He had terrible shoulder pain so a bone scan was ordered. Bone scan showed nothing is wrong with the shoulder but there is some uptake in a few ribs. It says it could be trauma or mets of course. When I questioned onc as to what he thought was more likely, his response was "It doesnt matter, its not going to change how I would treat you, we know the cancer spread out of the lung so we have to treat it with chemo". He starts Gemzar on Monday. I had been thinking of you all day, thinking how good Gemzar has been for you. He also said (and radiation onc said same thing the other day), they will only radiate those mets (if they are mets) if they bother him and she said they would respond well to radiation. So, why are you thinking that the bone mets are going to kill you? If they start to bother you, theyll take a short chemo break and radiate. I asked why he couldnt have radiation and chemo at the same time since the radiation he had IMRT causes no side effects. (My father also has a mediastinal node affected).Onc felt it still really is very taxing on the body. Especially my father with his already weakened bone marrow, and maybe in your case too as youve been through a lot. If you want to ease your mind, maybe get a second opinion, but if not, let that 'ol Gemzar do its job. And youve got us praying for you too!!! Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 8, 2004 Share Posted January 8, 2004 Peg, Can't add anymore than what everyone else has said. The Gemzar is working, so I would continue with that. Chemo may get rid of the mets. Is Bill in pain? I would do what Don and John suggested and ask about the Zometa There is another med for the bones, I don't recall the name. I will ask a friend of mine about the name. She has breast cancer and it met to the bones, lungs and liver. Her doctor took her off Zometa and put her on this other medicine. She said it is working and there are no side effects. I will try and post tomorrow with the name. Prayers for you and Bill. We need to cheer him up and with all of these posts I hope he feels better. We all care... Hugs and God Bless Karen Quote Link to comment Share on other sites More sharing options...
sherriot Posted January 8, 2004 Share Posted January 8, 2004 Peg, My Mom had bone mets very similar to Bill's. She had twelve radiation treatments for "pain" in June 2003. All of her subsequent Pet scans show no sign of metastatic disease. These treatments were to be palliative-not curative-but she has had great results. Her first oncologist patted her hand and said "you don't have to take treatment if you don't want to" as though she should just go home and wait to die. Thankfully my sister and I dragged her out of his office and found someone who provided hope and optimism. What a difference that made! My prayers are with you and Bill. Sherri Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted January 8, 2004 Share Posted January 8, 2004 Peg, My prayers are with you and Bill also. I think sometimes some of the doctors had a hard time losing their first patients to cancer, so they try to stay uninvolved emotionally, and write things off when the cancer has reached a certain point, I don't think that needs to be the case now when there are so many new treatment options available, but perhaps they're stuck in that behavior. Who knows? Not I. In any case, it's up to you and Bill now to find a doctor to be proactive for you. I know my surgeon and my oncologist were in constant contact, and right around the surgery time my surgeon was chief of the team, and after surgery healed he handed off the lead to the oncologist, but at no time was the radiation oncologist the team leader. It would not have been appropriate, given her narrow focus.. Hang in there, get distracted, and meanwhile talk to your primary cancer care physician about this. I don't think there was a need fo such a negative spin. You're in my prayers. MaryAnn Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted January 8, 2004 Share Posted January 8, 2004 Peg, My prayers are with you and Bill also. I think sometimes some of the doctors had a hard time losing their first patients to cancer, so they try to stay uninvolved emotionally, and write things off when the cancer has reached a certain point, I don't think that needs to be the case now when there are so many new treatment options available, but perhaps they're stuck in that behavior. Who knows? Not I. In any case, it's up to you and Bill now to find a doctor to be proactive for you. I know my surgeon and my oncologist were in constant contact, and right around the surgery time my surgeon was chief of the team, and after surgery healed he handed off the lead to the oncologist, but at no time was the radiation oncologist the team leader. It would not have been appropriate, given her narrow focus.. Hang in there, get distracted, and meanwhile talk to your primary cancer care physician about this. I don't think there was a need fo such a negative spin. You're in my prayers. MaryAnn Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted January 8, 2004 Share Posted January 8, 2004 Peg, My prayers are with you and Bill also. I think sometimes some of the doctors had a hard time losing their first patients to cancer, so they try to stay uninvolved emotionally, and write things off when the cancer has reached a certain point, I don't think that needs to be the case now when there are so many new treatment options available, but perhaps they're stuck in that behavior. Who knows? Not I. In any case, it's up to you and Bill now to find a doctor to be proactive for you. I know my surgeon and my oncologist were in constant contact, and right around the surgery time my surgeon was chief of the team, and after surgery healed he handed off the lead to the oncologist, but at no time was the radiation oncologist the team leader. It would not have been appropriate, given her narrow focus.. Hang in there, get distracted, and meanwhile talk to your primary cancer care physician about this. I don't think there was a need fo such a negative spin. You're in my prayers. MaryAnn Quote Link to comment Share on other sites More sharing options...
norme Posted January 8, 2004 Share Posted January 8, 2004 Peg, Just saw your post and my heart is heavy for the pain Bill must be enduring in his mind right now. That darn roller coaster. Buddy supposely had bone mets in his ribs and had 10 radiation treatments for them however we know that scans on buddy are crazy so don't know if he really had them or not for they aren't showing to be there now so either the chemo and radiation worked in that spot, who knows for they show clear now (if that scan is right). Tell Bill, it is not the end of the world if he is feeling good and the mind working good, for he is a fighter and he can fight to put these mets in remission to. Mind over body. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted January 8, 2004 Share Posted January 8, 2004 Dear Peg, Sorry for the late post. I hope you have taken a couple of deep breaths and begun the next phase of this journey. With each new day and each treatment there may yet be good results at the end of the journey. Ginny Quote Link to comment Share on other sites More sharing options...
Tiny Posted January 8, 2004 Share Posted January 8, 2004 Peg- Likewise, I'm jumping in here late. You've received very good advice from everyone, so I would just reiterate to get additional opinions. You know we are all praying for you guys. Take heart. Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted January 9, 2004 Share Posted January 9, 2004 Peg, When your oncologist is discouraging it is hard to maintain hope. I want to pass this along from "Chicken Soup for the Sourviving Soul." I shared it once befor, but felt it was worth sharing again. As I ate breakfast one morning, I overheard two oncologists conversing. One complained bitterly. "you know, Bob, I just don't understand it. We used the same drugs, the same dosage, the same schedule the same entry criteria. Yet I got a 22% response rate and you got a 74%. That's unheard of for metastic cancer. How do you do it?" His colleague repled, "We're both using Etoposide, Platinum, Oncovin and Hydroxyurea. You call yours EPOH. I tell my patients I'm giving them HOPE. As dismal as the statistics are, I emphasize that we have a chance." William M Buchholz, M.D. Peg look at ow remarkably well Don's Lucie is doing! Hang in there, keep the faith. We are all praying for you and Bill! Cheryl Cheryl Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 10, 2004 Author Share Posted January 10, 2004 Friends, Now that we have had a few days to digest all of this and think of what everyone has said - we are regaining strength and hope once more. Thank you so much for taking the time to respond to my post. Bill read all of them. Blessings to each and every one of you, Peg and Bill Quote Link to comment Share on other sites More sharing options...
LindaMRG Posted January 10, 2004 Share Posted January 10, 2004 So glad you posted, Peg, been thinking about the two of you every day. Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 10, 2004 Share Posted January 10, 2004 Peg, The other medicine for bone mets instead of the Zometa is Aredia. My friend said the reason that her onc took her off of Zometa is because it has bad side effects on the Liver. I hope this helps and I am glad to hear that Bill is in better spirits. Prayers for you and yours... God Bless Karen Quote Link to comment Share on other sites More sharing options...
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