Barb73 Posted April 22, 2009 Author Share Posted April 22, 2009 Hi There, (((Jamie))) Yes, you, Bill and I began this the very same month and have been very blessed with your friendship, truly. Today, we will be talking to our oncology doctor about "the plan." He wanted to hold off on the chemo if it had just been the nodule. However, since it is a good bit more (shoulder, once again), we need to get on with dipping into the chemo pile. So far, so good, though, Bill seems to be alright with the whole scenario. Of course, we will know better today after "the talk." When we began all of this, the oncologist told us that he would be treating this as a "chronic." He also mentioned that Bill could die from it. That last part was said very quickly, and he was back onto more positive words and hopes, and has been so ever since. What we have discovered is that, in order to be a survivor, we need to be proactive in the treatment choices, and most especially, with the questions. We will be going over there with that travel bag of good vibes from all of you here, and with a certain strength. Maybe we're stubborn, but we don't cave easily. If we had, we would have been a fine mess by the time this four years, four months had passed. We wouldn't have been too good for much. So, here we go....once again. ....and Jamie, thank you for the prayers. Goes without saying, they are very important in all of this. Love, Barbara Quote Link to comment Share on other sites More sharing options...
Barb73 Posted April 23, 2009 Author Share Posted April 23, 2009 All the talk about the RFA (radiofrequency ablation) has been ditched. Reason? Well, it seems that our doctor talked to the "other" doctor and he said it wouldn't be good to use it on vital structures (neck? shoulder? vital?). Doesn't make one particle of sense to me. I am thinking it could be Bill's age. Sorry. The oncologist said we could begin the navelbine tomorrow, but the PA in the room whispered something to the oncologist (don't you hate when that happens?) and we were offered next Tuesday to begin. Turns out we have an appointment that morning at Bill's urologist (follow up for blood test), but I will call this morning, and see if we can change that. Maybe we could do both. The other is in the early morning, and the infusion is in the afternoon. Thinking two appointments on the same day are pushing it and may be too stressful for Bill. Yes, maybe change it altogether. The plan: Stay on the Tarceva (see what two can do) and add the navelbine. One infusion for each week for three weeks, and one week off. Was read the side effects. Concurred with what was told by good source on this board. I asked, "What about if the node in neck and the area in the shoulder still grow?" Answer: "We'll try something else - like Taxotere." We are going forward and hope that this does the trick at holding things, at least, stable. Leaving that office wasn't the same as other exits. It took all of my fortitude to hold strong. Why? It's because I don't have the same faith in the answers we received re the rfa. Something wasn't right. Thought I would post this morning after a fair night's sleep. Am up early and still wondering. Someone, tell me I'm being paranoid. Barbara Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted April 23, 2009 Share Posted April 23, 2009 Hi Barbara. You might want to ask what vital structures are at issue, just to set your mind at ease. In the general area but not really that close, I don't think, I can think of the spinal cord and/or brain stem and the trachea. But closer perhaps, there are the carotid arteries, which they don't like to mess around with... Anyway, good luck with the new plan! Ellen Quote Link to comment Share on other sites More sharing options...
Barb73 Posted April 24, 2009 Author Share Posted April 24, 2009 Yes, Ellen, I will ask. I hope the combo works for Bill. His shoulder is giving him discomfort and will, if that is not alleviated, become even more of an issue as the days progress. I think that is what has been gnawing at me. Thanks, Ellen, for the good luck wish. I appreciate it. Barbara Quote Link to comment Share on other sites More sharing options...
jaminkw Posted April 24, 2009 Share Posted April 24, 2009 Barb, I'm sorry I'm so late coming in here. I've been reading your posts and following your journey with Bill's treatment. Want you to know that even though tardy, I'm still walking beside you with the many other caring people onsite. When something nags like the explanation for not doing the RFA, just tell them outright that somehow you missed or misunderstood something because it what you heard just doesn't sound right to you. Sometimes you misunderstood and sometimes being forthright can shock them into telling the real deal. I'll be watching and hoping things turn around for Bill. In the meantime, I'd push for pain relief. Judy in Key West Quote Link to comment Share on other sites More sharing options...
kukla Posted April 24, 2009 Share Posted April 24, 2009 Barb and Bill - Thoughts and prayers are with you as you start on this newest treatment path. Kathleen Quote Link to comment Share on other sites More sharing options...
Janet B Posted April 24, 2009 Share Posted April 24, 2009 Barb - I am sorry to be jumping in so late also - I have been reading and watching for news from you though and my prayers have been with you and Bill. I know what you mean about being uneasy with the answers. Sometimes I am so thrown with something the doctor says - or just so confused but I don't say anything. Now when that happens, I go home and write down exactly what I was confused about and what it is I want explained and that is what I start the next conversation with the doctor with. I DO like that your doctor has an attitude of persistence - "We'll try something else - like Taxotere." My prayers are with you Janet Quote Link to comment Share on other sites More sharing options...
Barb73 Posted April 24, 2009 Author Share Posted April 24, 2009 You are right, Judy, I have to be more forthright in my questioning. My stomach took an unexpected flip flop upon hearing that there were "vital" areas, and I was a bit stunned into silence. I will be going back on Tuesday, and though it will be for Bill's treatment with the Navelbine, the question will be repeated at the office. Nothing usually haunts me, but this did, for some reason. Thank you Judy, for walking beside me. You do know that I am feeling the support? I really do. I will remember to ask about pain meds for that shoulder - something stronger than the pill he has been taking. That's another thing, Bill has a "thing" about meds. If he takes one-a-day, he considers that more-than enough. I thank God for LUNGevity every single day, and you wonderful "guys." Keep us in your prayers. Barbara Quote Link to comment Share on other sites More sharing options...
Barb73 Posted April 24, 2009 Author Share Posted April 24, 2009 Janet, you know, sometimes people may think, "This old gal is with this so long, she must be quick on the draw with all the pertinent questions." Usually, I don't cave, but.... What happened was I had put my confidence in the doctor's having noted prior that there might be surgery (or rfa) for the neck node. Since I had a neck node removed thirty years ago (surgeon thought I had Hodgkin's Lymphoma), for me that sounded quite reasonable. When he didn't mention it (this visit) but I had to ask, then he put the kibosh on the entire thing in one fell swoop. My heart sank, and I was once again a bumbling kid, powerless - not even able to ask a question. You have given me an idea. I will do homework over the weekend - paper and pen, and concentrating on what I want to ask, with no beating around the bush. After all, it isn't that I cannot take "no" for an answer. It is that the senario was a bit intimidating with the PA hovering and whispering. That threw me, as well. Thank you for the prayers, and thank you for "being here" to give such needed support. Almost forgot, Janet,...and yes, the oncologist's persistence is definitely appreciated. He has been a man of his word. He said he would "get it if it popped up," and it has - and he will, I am sure, do his best. No one could ask more. Barbara Quote Link to comment Share on other sites More sharing options...
jaminkw Posted April 25, 2009 Share Posted April 25, 2009 Barb, even the most articulate and outspoken among us are occasionally stunned into silence. Some little word or idea triggers a response that renders us mute. Been there, done that. Awareness afterwards is key. You'll ask the right questions this time and get the real deal answers. Judy in Key West Quote Link to comment Share on other sites More sharing options...
SandraL Posted April 25, 2009 Share Posted April 25, 2009 I agree. I think I am prepared and ask all the questions I need to. But I have also been taken off guard and upon reflection after an appointment wish I had said this or asked that. Happens to the best of us because this disease and it's treatments and all the emotions involved are very complicated. The best we can do is follow up with whatever is still bothering us. My doctor has always been very patient with me and answers all my questions. I hope your follow up goes well and that Bill's first chemo is uneventful. Take care Sandra Quote Link to comment Share on other sites More sharing options...
Barb73 Posted April 29, 2009 Author Share Posted April 29, 2009 Yesterday's infusion with Navelbine went smoothly with, of course, the help of a very efficient and wonderful nurse. She was so adept, that it seemed it was the "simplest" thing anyone could do. Of course, my big fear was that they would not find a vein, or perhaps, the infusion would "spill" ourside any found vein. Nope, all went just fine. She stayed with Bill almost the entire time, monitoring as she spoke with him. So far, so good. No side effects as yet. We were told to call right away had there been any redness appearing around the infusion site. That didn't occur. He ate well last evening, slept well, ate again this morning, worked around the house doing various chores, and is happily taking his shower. He is scheduled for 6 treatments in a row. He has 5 more appointments to go. I will keep everyone abreast of how it is going. Thanks for "being there." We went there with lots of spiritual "oomph." Doctor was covering for another doctor (tons of overload patients), so didn't get the chance to ask further about the RFA. Need to approach him when he isn't so stressed. (I know, kind of skirting things a bit here .) We had an earlier appointment at Bill's urologist (same location), and believe me, though we thought we would be saving an extra trip - we will never do that again. Didn't save anything, but pooped ourselves out completely. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted April 29, 2009 Share Posted April 29, 2009 Barb, I'm so happy things went smoothly with Bill's infusion. We often cram too much into one day at MDACC and usually regret it too. But isn't it amazing how much a kind and loving nurse can do to make an unpleasant experience so much better. My daughter is a nurse like that and I'm so proud when I get compliments from her patients. Don't feel bad for not asking about the RFA. I skipped stuff at my doctor's appointment the other day also. He was slammed with patients and it was late in the day. I believe he was also tired and stressed. It's o.k., I think, to cut them a break once in awhile. Hope Bill continues to do well. What a fighter he is. Judy in Key West Quote Link to comment Share on other sites More sharing options...
SandraL Posted April 29, 2009 Share Posted April 29, 2009 Hi Barb. I am glad to hear things went smoothly as well. I will be starting Navelbine soon and am hoping for the same. I hope Bill continues to feel well. Take care Sandra Quote Link to comment Share on other sites More sharing options...
Barb73 Posted April 29, 2009 Author Share Posted April 29, 2009 Judy and Sandra, Not only did things go well yesterday, but Bill was doing kitchen cleanup tonight after I had cooked . I think it was the steroid they put into the mix in yesterday's concoction. At any rate, he was singing quite a bit today, and that is usually a sign that all's well. He took a pain pill tonight for the shoulder (asked for a prescription from the doctor yesterday), and is downstairs enjoying a TV show. Thanks for your support. It is definitely appreciated. Everyone here has been super. Judy, God bless your daughter and her very valuable work. Sandra, I hope your experience with Navelbine is how it went with Bill. I will let you all know how each treatment goes. Right now, I am going to take a "little nap." I had a glass of port, and the heavy sugar content has gone straight to the back of my head. Dang it, should have had the Cabernet. Barbara Quote Link to comment Share on other sites More sharing options...
Caren Posted April 30, 2009 Share Posted April 30, 2009 Hi Barb, I'm glad that Bill's first infusion seems to have gone well and I will be sending positive vibes that the rest of the treatment goes just as smoothly and works well for him. Quote Link to comment Share on other sites More sharing options...
Barb73 Posted April 30, 2009 Author Share Posted April 30, 2009 Hi caren, thank you so much. That is so nice for me to be on the receiving end of good vibes. Trust me, they are important. You took the time to send them, and you are going through your own journey. I noticed that you are smoke free? Saw it at the end of your add on signature. Good for you. It was 10 years this past January that Bill and I gave them the boot. It was very difficult, but well worth the effort. I think it's the reason Bill gets through the chemo, but I could be wrong. I don't have all the answers - just some of them. Barbara Quote Link to comment Share on other sites More sharing options...
Caren Posted April 30, 2009 Share Posted April 30, 2009 Hi Barb Well done to you and Bill giving the nicotine the boot!! It takes a lot of will-power and determination but we all get there in the end. I am almost 7 months into being smoke-free and I feel great. I won't say that I will never smoke again b/c forever seems like such a long time, but I will say that I didn't smoke today and I don't intend on smoking tomorrow either. I Quote Link to comment Share on other sites More sharing options...
Barb73 Posted April 30, 2009 Author Share Posted April 30, 2009 GOOD on ya, caren. "Way to go" from a very old and elder lady. Actually enjoy being old and smober Keep on keeping on - day by day - one day at a time. Barbara Quote Link to comment Share on other sites More sharing options...
carolhg Posted May 1, 2009 Share Posted May 1, 2009 I certainly hope that this chemo will help and put a hold or better yet a stop to this awful disease. I am sending positive thoughts your way and keeping you both in prayer. Carol Quote Link to comment Share on other sites More sharing options...
Barb73 Posted May 1, 2009 Author Share Posted May 1, 2009 Hi Linda and Carol, Yes, we're on "that rode" again. Although, Linda, he will still be continuing with the Tarceva, along with the, as Randy has called it, the "Navy Bean." Carol, yes, we are moving at a quick pace here with the infusions having been put in place right away. At first, it was mentioned that it would be three weeks in a row - then, a week off, but that has changed. It will be six weeks in a row. After that, I would suppose, there would be an assessment to see what the result might have been. Glad, of course, that there is treatment "out there." Maybe the two meds can do the trick? We can only hope. I thank you so much for the hopes and prayers. For me, that is key in all of this. I'll update when we know more. Barbara Quote Link to comment Share on other sites More sharing options...
Barb73 Posted May 6, 2009 Author Share Posted May 6, 2009 Yesterday, Bill received his second infusion of Navelbine. The nurse found the vein, and had no trouble with it, but kept kvetching that she thought he should have a port. In fact, she ranted for quite a while about how no one should ever receive this drug (Navelbine) without a port - on and on and on. She went over to our doctor's assistant and I could hear her complaining to him that giving Bill the injection without a port was dangerous. I asked her if there was a downside to having one. "Well," she said, "there is the possibility of infection." Bill sat there, dutifully listening to her describe him as being thin, and I holding my tongue on that one. No nurse should ever describe her patient as being "thin." Bill has been 174 lbs. since he was diagnosed. Yesterday was not a my favorite day - especially since Bill has not lost an ounce in four and a 1/2 years. He hasn't missed a meal, nor has he ever complained about nausea. I told my daughter and she said that maybe it was time for the aged Ms. Gloom to retire. OK, that made me laugh. Bill got up this morning, told me he felt better than he has in a long while, and proceeded to make breakfast, cleanup, and now, he is outside weeding out the dandelions. We will think about the port-a-cath, but I didn't feel good about the whole thing. Bill has no after effects from the infusion, feels very good, and is "happy a pig." So, until the next chemo, I bid you adieu, and tell you to keep alert, ask questions, and believe in hope. Maybe hospitals should "listen in" on their nurses. Pessimism is not good for the health. Oops, my bad, Barbara Quote Link to comment Share on other sites More sharing options...
Barb73 Posted May 6, 2009 Author Share Posted May 6, 2009 Somehow, the post about yesterday's infusion entered twice, so I thought I would edit it out (couldn't figure how to delete it). Thank you for your patience with my complaint posting. As today has progressed, I am feeling so much better. Time can be a friend. That was our first experience with negativity at an infusion. Usually, we have a pretty good event and arrive home on a positive note. I guess it's not so bad when we think of the many, many times we have been at chemo sessions. Barbara Quote Link to comment Share on other sites More sharing options...
SandraL Posted May 6, 2009 Share Posted May 6, 2009 Hey Barb. It sounds like you guys got a dandy of a nurse yesterday...geesh. An encounter like that can just really ruin your day. If they are having no trouble with the IV then it seems to me a port isn't necessary. Here's hoping you get a a nicer nurse next time. I have found that most of them really are pretty good. Sandra Quote Link to comment Share on other sites More sharing options...
Barb73 Posted May 7, 2009 Author Share Posted May 7, 2009 Hi Sandra, Yes, thank you for your reply. My thoughts were the same as yours. If there is no problem finding the vein, I didn't see the need to rush to a port. My concern has been that since the blood counts can drop with this particular drug, infection can be a possibility in the equation. It's that one downside to the port which scares me a bit. Yesterday was out of the norm for us. We usually have a fairly pleasant time at the sessions. Our daughter called to see how things had gone. Her support has been so vital in all of this. Jeanne is aware of how much of this depends on being in an "up mode." We are rich, indeed. We had her support, and arriving here to vent and receive feedback has been a real plus. Barbara Quote Link to comment Share on other sites More sharing options...
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