stand4hope

Oh, Bill, I just don't know what to say. I'm so sorry you got this report. I just hate hearing this. I guess your P.S. means your wife is having a hard time coping with this news. Who wouldn't. I am praying hard that it is old and not new growth. God bless, Peggy

Paddy, You will probably get a variety of responses to this. Like Dave, my husband did TERRIBLE with Taxotere (I truly thought the treatment was going to kill him instead of cancer - I hadn't found this website yet), but others here had no problem with Taxotere. Gemzar/Navelbine were much, much kinder to him, but others here have had big problems with them. I guess you just don't know until you get it since it's different for everyone. Keep us posted. Love, Peggy P.S. I responded to your PM.

I've really enjoyed reading this thread. I can most identify with Ann's post about how Dennis didn't want to know anything, just get on with the cure, but she wanted to know everything. That describes us to a "T". My hubby doesn't want to know anything, just tell him what day, what time, and point him where he needs to get the treatment because "I've got work to do." That's it. He just wants to know the treatment options, he picks one, and that's the end of the discussion. I will have to say that I don't like the idea at all of having a statistics forum. I'm afraid that could become a very depressing forum, and I would like to think that we are primarily about hope. I'd rather we let somebody else cover that topic in other places. I also have to say that I've been here for 5 months and don't ever recall seeing a single post where statistics have been shoved at us continually, and I don't miss many posts. Perhaps that happened prior to my joining, but I just haven't seen it, or don't recall it. Where we get into statistics the most is when new people first begin to post. Usually, at the time they begin to talk to us, all they know is statistics. Every single person who responds to them does an OUTSTANDING job of setting them straight about statistics. You did it for me and I have learned from all of you, and I, too, pass on optimism to these new people just like you taught me. The only thing I would like to see changed is the use of the word "wrong". It does bother me when someone tells a new person the statistics are "wrong", because I'm not so sure that's true. I know what they mean when they say that, but I'm no so sure the new person does. I think the new person has two choices, (1) they can believe you and think the actual accuracy of the statistics are dead wrong, or (2) wonder who you think you are to say you know more than the statistics. Does that make sense? The statistics are outdated because of the group of people they apply to, and they also don't tell you how many people died from other causes, but I do think they are reasonably accurate for the time period to which they apply. I love it, though, when everyone tells the new person their personal short story and how they have beat the statistics, how long they have survived, and how many other people who are here that have beat the statistics, and that they (or their loved one) isn't a statistic. I think that gives them HOPE. Love to all, Peggy

Karen, More than anything going on today, I hope that you and your family have the best time ever! Love, Peggy

Nancy, I certainly can't comment on how it feels to be the one that has this disease and the emotions that would result. I can't even imagine the fear and worry that could pass in and out of your mind. I can identify from a caregiver's standpoint, though. Today, I'm very "up" about my husband's disease, but tomorrow you might find me wallowing in worry. It seems like our emotions just have a mind of their own. Just when I think I'm in control - POWEE!!! Right in the kisser! I'm so glad you're feeling better today. Love, Peggy

Bill, I'm so sorry your wife is having all this trouble. Yes, when pain continues in this way, sometimes we need to get more assertive and simply insist on more extensive testing. It sounds like you're the man, though!!! I applaud you for caring enough to look after her so closely and to come here and seek support and advice. Please keep us posted. God bless you both, Peggy

We had a follow-up visit today with my favorite doctor about my husband's shoulder - his radiation oncologist. Every single time we leave this doctor's office we are encouraged, cheered up, and leave with big smiles. This was a simple follow up to see how his shoulder is since the radiation. I didn't even really need to go for this visit because I knew his shoulder was doing great, but I would NEVER pass up the opportunity to visit this optimistic, hope-filled man's presence. We always laugh and he talks to us about other things, too. When he came in, he cheerfully said "Well, there's my friend" and shook my husband's hand. I said, "Am I your friend, too?" He said, "No, only him. We men have to stick together." He then talked to us for about 10 min. about Lance Armstrong, his own bike riding, and my husband's motorcylce riding. He actually went to France and saw Lance Armstrong win the race. This guy just oozes energy. My hubby's shoulder is doing great. There is still a small hole in the bone, and he said that might not completely heal for 4-6 months, but there is no pain, no restriction of movement, and it just looks great. He also always gives him a thorough physical examination - checks his lungs, eyes, glands, heart, belly, his grip, strength, his legs and ankles, and just gives him a good checkup. He also asks him tons of questions. Everything he checked is perfect. The doctor said he just couldn't be more pleased - "Especially, under the cirumstances". He is the picture of perfect health. I'm doing a BIG happy dance!!! We did ask him some questions, that I thought some might find interesting and helpful. Well, actually, I asked all of them, but my husband asked the last one. 1. Since the PET scan shows he has cancer also in his upper and lower spine, with the greatest intensity in the lower spine, why do have to wait and see (or until) he gets pain there before doing radiation in those areas, also his right hip, which also shows it to be quite intense. Answer: We can do that, but the thing is it doesn't really help. He explained that bone mets don't "seed". He said the bone mets have gotten there because they seeded from somewhere else, from the primary lung tumor. He said they CAN grow and cause problems, however, they don't "seed" and start new tumors other places. If he treated an area where there is cancer in the bone, the cancer in that area would be stopped or slowed down in its growth, but it really didn't do anything for all the other spots in the rest of the bones and they can't radiate his whole body. He said the purpose of chemo is to kill the cancer that is in the blood stream (and thus, the bones) that seeded from the lung. He also said many times those areas, especially after getting chemo and Zometa, never cause a problem, so they don't radiate them unless they cause pain. He said if my hubby started to have pain that didn't go away (in other words, not just an occasional twinge, etc.), they would immediately begin radiation. He wouldn't have had such severe pain in his shoulder if (cough, cough) he would have listened to me and got it checked when it first started. 2. Will that hole in the bone go away? Answer: If it does, it will take 4-6 months. (see above) 3. I've heard a lot about PET/CT scans combined in one. Do we have those in Indianapolis? Answer: We can fuse a PET and a CT, but there isn't really a big advantage in having this more expensive equipment and cost to the patient. The treatment is going to be the same. If radiosurgery is going to be done, they get precise location and measurements from a CT. 4. I understand that cancer divides and that's how it grows. I've heard some people say the cancer "ate through the bone." Is that actually what it does? Answer: It doesn't actually eat through the bone. The good cells just can't fight the bad cancer cells, and so, the good cells die and the cancer cells take over. At this point, he said, "OK, that's 4 questions, that's your limit," and kiddingly slapped me on the knee. I told him I was done anyway, but thanks for answering my questions, even if I wasn't his friend. 5. How come they didn't do a PET scan in the beginning to see if I had cancer in all these places? Answer: The treatment would have been the same. We knew from the beginning since there were brain mets, and particularly so many of them, that the cancer was already in the blood stream and there could be bone mets. The way to try to stop it is with radiation to the primary tumor and chemo for the rest of the body. And then later, if chemo hasn't wiped out the cancer and bone mets cause a problem, we use radiation. Well, that's it. Hope that long question/answer helps somebody. I wish you could see my happy face today. It's a lot different than the way I was feeling on Saturday. Love to all, Peggy

Dear GOD: I want to thank You for what you have already done. I am not going to wait until I see results or receive rewards, I am thanking you right now. I am not going to wait until I feel better or things look better, I am thanking you right now. I am not going to wait until people say they are sorry or until they stop talking about me, I am thanking you right now. I am thanking you right now. I am going to thank you right now. I am not going to wait until the children are asleep and the house is quiet, I am going to thank you right now. I am not going to wait until I get promoted at work or until I get the job, I am going to thank you right now. I am not going to wait until I understand every experience in my life that has caused me pain or grief, I am going to thank you right now. I am not going to wait until the journey gets easier or the challenges are removed. I am thanking you right now. I am thanking you because I am alive. I am thanking you because I made it through the day's difficulties. I am thanking you because I have walked around the obstacles. I am thanking you because I have the ability and the opportunity to do more and do better. I'm thanking you because FATHER, YOU haven't given up on me. ~~~~~~~~~~~~~~~~~Author Unknown How about thanking Him right now.

Tree, The side effects from the steroids they give before treatment usually only last a day or two, so the energy level should only be a problem when she gets treatment. (see my note below about this). They are also probably giving her anti-nausea meds by iv before the chemo, and she probably won't get sick. Remember - I said PROBABLY. The anti-nausea meds are great these days, but some do still have problems with nausea. Everybody's different. Even most of the ones that do have a problem, compazine and/or some other meds the doctor can prescribe usually do a great job of keeping the nausea under control. It will be ok. Please keep us posted. God bless you, Peggy *My husband is NOT a talker - he just isn't. On the days he got the steroids on chemo days, I swear he would talk nonstop after we went to bed and, therefore, I couldn't sleep either. I remember laying in bed thinking Ooooooooh Myyyyyyyyy Goddddddddd!! He's possessed! Just as soon as he would stop with one subject, he was off on another.

Tess, Wow! That's all I can say is Wow! That was so incredibly beautiful! Love, Peggy

Jim, That was a mesmerizing story. I don't know how it could be, either. It's one of those things, though, that I'm sure you would feel a lot better about if you had more information. Did your dad not want an autopsy done? Jim, I'm so very, very sorry for your loss and I will pray diligently that you will find peace from God. God bless you, Peggy

Thank you, Tess. I loved that! Are you doing ok? Love, Peggy

David, I've been thinking about you a lot today and wondered how you were doing. I'm sorry you're not feeling well. Hang in there, my friend. We're all rootin' and prayin' for you. Love, Peggy

(((((((((((((GINNY))))))))))))))))) I love you! Tell me what I can do to help. Peggy P.S. Darn. I still think I have time to cancel my $500 order to Hickory Farms for the cheese and sausage rolls. Oh, well, I don't think they delivered to Pennsylvania anyway! P.S.S. I think I can scrape together some things to look like gang clothes from the old cedar chest and head east to whoop on your neighbor. Hmmmmmmm. Would that help?

Yes! Yes! Yes! I feel like singing the Fight Song. You go girl!! Ta-da-da-da-da - CHARGE!!!! God bless you, Peggy P.S. I'm glad we could help with your decision. P.S.S. What is his diagnosis? I know it's probably in your introduction post, but it helps us a lot if you put something in your profile. You can use some of the others as examples. ONCE AGAIN - GO KATE GO!

Amy, Prayers being said that your dad gets good medical attention, advice and treatment. God bless you, Peggy

Nell, We asked our onc if that could happen, and he said it would be extremely rare and he has never seen it. Could be the other way around (prostate to lung), though. Peggy

Charlotte, Your man sounds about as bullheaded as mine. As you know, there's not much you can do except sit back and let him take the lead. Believe me, I know how frustrating that can be. I don't know about you, but I'm also expected to keep my mouth shut about it when HE HAS SPOKEN! LOLOL. And guess what, that's exactly what I do. What was that Cheryl said today about a short fused person living with a long fused person. I haven't posted there yet, but I can identify. Keep us posted. Love, Peggy

Dean, My husband was having low blood pressure 90/65 when he had chemo and radiation at the same time, plus the allergic reaction to the taxotere. He was also unable to stay awake, slept nearly 24/7 and did get dizzy when he stood up, and was wobbly on his feet. It was very scary. The doctor gave him a low dose of decadron (I think 2 mg. a day) to "kick start" him and it worked. In less than week, he began to get energy back, stayed awake, the dizzy spells went away and blood pressure returned to normal. I think he was only on the low-dose decadron for 30 days or less and then he weaned off it, and was even able to return to work full time. Since you haven't had chemo, radiation or an allergic reaction, this obviously isn't causing your low blood pressure, but perhaps the decadron treatment might help. You might mention this to your nurse. Good luck, and I hope you get back some energy soon. Love, Peggy

I agree with Jana, but I do think it's our job to encourage others to know that the statistics are changing constantly and they most definitely can be beat. I also read the post she is referring to and I think it was just another one of those misunderstandings. Obviously, no hurt was intended, but I can see why the reader took the comment the way he did. It will be ok. I also know that a lot of people say the statistics are "wrong". I think they are pretty close to being accurate, plus or minus a few percentage points, however, only as they relate to the time period to which they apply - which is not now. Peggy

Pam, I just read these newest posts and wanted to apologize. When I posted above, I didn't realize you had already called Hospice. I am still so sorry that you are having to deal with this, and I am sorry you have to leave him tomorrow. My prayers are with you, and I still think they should be able to do something to stop his pain. Love, Peggy

Charlotte, I understand your concern. I wouldn't wait to call the oncologist. I would call him/her first thing tomorrow morning. Also, if I were you, I would ask for a PET scan since he has multiple areas of pain. Actually, there is a new combined PET/CT scan you might ask about if it's available in your area. Cancer can't hide from a PET scan, so I would be pushy and ask for one. Cancer frequently does not show up on an x-ray. My husband was just treated with radiation to his left shoulder. The PET scan saw the cancer, but the X-ray didn't. The X-ray DID show the hole, however, where the cancer had eaten through the bone, so there is some adavantage to an X-ray. Keep us posted, Love, Peggy

Oh, Pam, I am so sorry. Your post brings tears to my eyes. I can so identify with what you are going through. I lost my dad on June 25, not to lc, but to COPD, another lung disease. He would be fairly comfortable until they would have to move him to clean him up and he would hurt so bad and be so uncomfortable that his face would turn the color of a beet. It was a different kind of pain, though, and I'm sure not anything like the agonizing pain your dad is having in his back. I'm so sorry. Some people on here have gone to or contacted hospice facilities to get pain relief. I didn't know it before, but apparently, hospice isn't just for the final days of life, but also for pain management. Have you looked into that? There are so many, many ways to control pain these days, that there is just no excuse for your dad to have this much pain. You might need to get a bit aggressive with the health care providers and insist that something be done now. He should not have to go through another night with this kind of pain. Yes, Pam, I will be here for you, as well as so many others on this board. I was just blasted so hard with the deaths here this week, and so soon after my dad's death, that it just sent me reeling. I'm really ok now, and here for you and anyone else that wants to talk to me. All my love and prayers, and PLEASE get cracking on getting the attention level elevated to HIGH ALERT for your precious dad. Peggy

Hi Paige and WELCOME! I'm so glad you found this site. Everyone here is so helpful and friendly that I think you will enjoy your stay very much. Fire away the questions as often as you want, and don't be afraid to ask, just talk, vent or laugh. We love to help as much as we can. I'm sorry that your mom has this disease, but you have come to the right place for support. Please keep us posted. God bless you and your mom, Peggy

Geoff, I am thrilled to hear that your mother is doing so well and that the reports showed so much improvement. It's really refreshing to hear some good news. God bless you, Peggy