shineladysue Posted May 8, 2009 Share Posted May 8, 2009 Barb, I'm so sorry you and Bill had the miserable encounter with that nurse and I hope you won't have her again. It's such a shame that there are people in this profession who are so ignorant and insensitive. It has been a long time since Mike had Navalbine, but I don't remember any problems with the infusions ( and he had no port). What I do remember is that he tolerated it well and felt great. Mike never wanted to have the port put in either , not until it was necessary. It sounds like your Bill is doing just great and so is Mrs. Bill.. Keep up the great attitude and don't let the words of some ignorant nurse spoil your positive outlook. You could teach her a thing or two. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Barb73 Posted May 8, 2009 Author Share Posted May 8, 2009 Thank you for the support, Sue. As you know, keeping even one foot in the positive zone can keep us all a bit steady here. It is here, at this site, that there is understanding. We could talk a blue streak, but unless someone has been on this trek, there isn't that much empathy. We appreciate that there is this oasis. That's what I call it - a place to sit and unload all the "packages" we carry. The strange thing about this is we called to cancel Bill's cystoscopy due to thinking it might not be good for him to have a procedure in case there might be a port installed (another procedure). Today, when I called the urologist's office, I asked about the results of the PSA test taken that we hadn't asked about last week. The PSA is elevated and we will be going in to see the urologist tomorrow to discuss what this all means. No sense in pre-empting anything until we know more, so we are hoping (there's that word again) on something less than dire. With all that is running around in my mind (surely in Bill's, as well) we need to lean on something. Thankfully, there is here and there are more than ample pillars of strength. Now that I have your additional input, I do believe that the idea of a port is really way to early. If there were "troubles" down the line I could understand it as being viable. Thank you, again, Sue. Barbara Quote Link to comment Share on other sites More sharing options...
shineladysue Posted May 8, 2009 Share Posted May 8, 2009 Thinking of you today.. let us know how the urologist appt goes. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Patti B Posted May 8, 2009 Share Posted May 8, 2009 Barb- As you know, I have been on Navelbine for quite a while and I refuse to have a port until my one last vein in my body collapses, but I do have a friend who goes to another hospital and they won't give Navelbine unless you have a port. My PA has been real good about not pushing me into one unless there is no other options available. I just don't want a port!!! So I understand how you and Bill feel completely. Now - don't know if you saw my post about my latest scan but --------I HAD SHRINKAGE ON NAVELBINE!!! First shrinkage since after my first round of Carbo/Taxol 2 1/2 years ago!!! Ever since then its been progression or stable!!!! Doc said normally when you are on Navelbine you are on it just to keep you stable but that I screwed up those stats!!! So.......I am hoping and praying the same thing happens for Bill!!! I have been on it for a while before anything happened but you know, we will take it whenever we can get it!!! Oh, and if you read my post - I put in there about changing oncs......well, I think that nurse you had should go join my ex-onc......think they will do splendid together being miserable. Shame on them!!!!!!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Barb73 Posted May 9, 2009 Author Share Posted May 9, 2009 Patti, Yes, I had read your posting about changing oncs. I think that "the pair of bookends" should become partners. You have no idea how good it makes me feel to know that the Navelbine has done the "downsizing" on things for you. Shrinkage is a beautiful word. Bill has been feeling very well on the Navelbine. He told me yesterday that he actually feels better than prior to taking it. He noticed the change right away, but even more so - this week. Thank you so much for the good wishes on that. My hopes are the very same for Bill. I love good news. When a chemo drug noted for holding things stable actually shrinks things - that is definitely worth noting. Updating as to the PSA, the urologist took the cystoscopy, and said that the prostate had grown so much so, that the number may well be due that fact alone. He will follow up next week to take a more overall look at things. I asked the cancer question and he said that he didn't think so. He also said that he may give Bill something to do some shrinkage of the prostate. The enlargement can be a cause for infection .... so, when we think of Navelbine and any lowering blood counts, we need to move on this. He will be taking a bigger picture of things upon our next visit (next week) with yet another test. May all be well vein-wise and that we can keep the port away from the scene for now. It wouldn't be the worst thing, but we don't want to add anything more to any infection scenario. That is one important downside to ports, especially now that we have another one looming (prostate)in a different area. Infections are notoriously difficult to manage when they enter the bladder area. So...fingers crossed. Barbara [ Quote Link to comment Share on other sites More sharing options...
shineladysue Posted May 9, 2009 Share Posted May 9, 2009 Thanks for the update from Bill's urologist visit. I prefer to join you in the optimistic approach and go with the doctor's belief that his problem is NOT cancer related. Sorry he has to go through what must be unpleasant exams and I hope that the outcome will be something that is treatable. Just know that you guys rank high on my prayer list. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
SandraL Posted May 9, 2009 Share Posted May 9, 2009 My fingers are crossed Barb. Geesh if it isn't one thing it's another hey. I have my first navalbine treatment on Monday and am hoping for an uneventful treatment. I am sure you know this but I just thought I would remind you that Bill is so lucky to have you. Sandra Quote Link to comment Share on other sites More sharing options...
Barb73 Posted May 9, 2009 Author Share Posted May 9, 2009 Sue and Sandra, It's so welcome to see your input. Thank you for the prayers, Sue, and the vote of confidence, Sandra. Yes, I am optimistic about the enlarged gland. Would you believe it, but I received an email this morning from a niece on Bill's side of the family. Her brother, our nephew, has prostate cancer. He will be receiving implanted seeds. OMGosh, his/my family must be a magnet for cancer. Anyway, we are still in the optimistic mode, but we don't give up easily. Well, I don't give up, but do a mini panic every now and again. We'll be OK, no matter what. Again, thank you for the good stuff being thought and said. Makes me feel really good. I always calm down after posting, and reading. It's my therapy. Barbara Quote Link to comment Share on other sites More sharing options...
Maryanne Posted May 11, 2009 Share Posted May 11, 2009 Hi Barb, Just got back for Vac. and just read all your posts. Wow... seems like lots of things came his way. But at least they are kicking in in the butt! Please know that you are both in my prayers and I know you guys will get through this lastest hurdle. My heart to yours, Maryanne Quote Link to comment Share on other sites More sharing options...
Barb73 Posted May 11, 2009 Author Share Posted May 11, 2009 Thank you, Maryanne, I just finished reading your posting about the cruise. It was, I am sure, a lovely experience. The gift of the TV has to be so very special because it was given by your wonderful children. That is super! Yes, we've been busy of late. Seems as though all we do is run over to the center, and visit doctors of one sort or another. Last month, it was the foot doctor for Bill's feet. It wasn't anything serious, but he had an ingrown toenail, and the oncologist wanted him to stop practicing "Bill Medicine," and see someone with a license. Then, the PSA thing, and this morning, he showed me a red, odd-looking rash (size of a nickel) on his wrist. Since it's been six days following the infusion, I am wondering if it's the Tarceva (new warnings, one of them serious skin issues). My head is so full of "stuff" that I am sitting here doing searches to see if I can come up with something sane to find a label in my mind for this "large red spot." Oh well, tomorrow we see the oncologist, so maybe he will be able to discern the origin of this "thing." Last but certainly NOT least, thank you so much for the prayers. After reading this post, I'm sure you realize we need them. Barbara Quote Link to comment Share on other sites More sharing options...
Barb73 Posted May 13, 2009 Author Share Posted May 13, 2009 "This thing," (the red bump on Bill's wrist) was probably a bug bite. The oncologist looked at it, and said it "looked like a bug bite," further, that Bill should wear gloves when weeding outside. (Whew, what a relief!) Bill received his third infustion (push) with Navelbine. The neck node is "flattening" down, and Bill is doing fine. Though, there is one exception. His red blood cell count dropped, and the white are descending, as well. So, He received a Procrit shot at the end of the infusion. Next week, he will probably not be receiving the 4th Navelbine. (Oncologist senses the white cell count will be too low.) He had wanted to go straight through, but next week there will be a respite. Anyway, dear folks, Bill is doing pretty well, the node is diminishing in size (for now), and that's about it. Prayers seem to be working quite nicely. I count on them mostly to keep my head about me. Thank you so much for the support. It is so appreciated. Barbara Quote Link to comment Share on other sites More sharing options...
ginnyde Posted May 13, 2009 Share Posted May 13, 2009 Barb, overall this sounds like good news. Hope Bill keeps going in the same direction. Quote Link to comment Share on other sites More sharing options...
Barb73 Posted May 13, 2009 Author Share Posted May 13, 2009 Thank you, Ginny, and yes, that's what we are hoping - to keep Bill going forward with improvements, and/or stability. We'll take either and be happy for it. Barbara Quote Link to comment Share on other sites More sharing options...
Maryanne Posted May 14, 2009 Share Posted May 14, 2009 Hi Barb, just keep reading your updates and they do sound promising... Joel had the Neulasta shot the day after each chemo session to keep his white count up, but the shot proved to be wore than any cheno he went through. He just had bad reactions to it, but not eveyone does. His doctor waited till the 2nd day after and that seem to help. Hope your husband got through his shot okay. I know you will keep us posted. Maryanne Quote Link to comment Share on other sites More sharing options...
Barb73 Posted May 15, 2009 Author Share Posted May 15, 2009 Hi Maryanne, Yes, I had heard of a number of people we have known who had a painful reaction to Neulasta. When Bill needed the injection for the white blood cells, it was Neupogen. He never had a reaction to that, yet had it at intervals over the four plus years. it worked to raise the count, but no untoward effects whatever. This time, the shot was for the red cells, and he received Procrit. No doubt, if the white cells do go down more, as the doctor has predicted, he may be getting Neupogen. I will keep posting after each visit. I think it can help om giving some info about how one individual is responding and/or not to this particular regimen. Presently, that is Tarceva and Navelbine. The doctor looked at the neck node, and said, "Yup, it's flattening." Now, whether that means good, I don't know. We both took it as good. We're not fussy. We take any kind of diminishment. Is that a word? Barbara Quote Link to comment Share on other sites More sharing options...
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