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michellep

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Posts posted by michellep

    Scalp sores from Tarceva

    in NSCLC GROUP

    Posted

    I had posted a question about Tarceva rash to Dr. West. My hubby hasn't yet started the Tarceva but I want to be prepared as much as possible before the rash comes. Anyway, Dr. West suggested 1% Hydrocortisone cream instead of prescription creams. He says it works better.

    CT scans

    in NSCLC GROUP

    Posted

    You would think so huh? When I asked I was told, nope. Ya know Susan if you've followed our story you'll see that my hubby and I run into a brick wall almost every time we try to get things done. In fact, we're so used to it now that when something goes smoothly we ask ourselves....huh? Is this real?

    Think I'll ask for xanex :?

    CT scans

    in NSCLC GROUP

    Posted

    When we saw the onc this morning he wasn't happy about the comparisons CT readings still being out. I explained to him that the person who reads them has been on vacation and there isn't anyone else to do it. He asked if I would call and follow up when I got home. (Well, I guess I better since no one else will huh?) He said, at this rate he'll be scheduled for another scan. :roll: sigh

    Our "quality time" with onc today!

    in MEMBER UPDATES

    Posted

    Well, had an emergency meeting with the onc today. He was so upset over all the torment my husband has been going thru with the gemzar/carbo. I told him the second he walked into the room that I hoped he was prepared to spend some quality time with us because I have a lot of questions. (I had a tablet full of them). Before we even went into the exam room we had lab done and see that he now needs his 8th transfusion!!!!! Well, he kept telling us over and over again how sorry he was and that my hubby should have been taken off this combo weeks ago. I just said....well, what's done is done, so how about Tarceva? But you still be more aware of your patients doc!!!! He agreed and we will probably start on that next week. I want to get through this transfusion and give him a couple days to get some strength back. He is just soooooo tired.

    But, wanna hear something odd? When we were leaving the office, the onc doc came up next to me, put his arm around my waist and handed me a piece of paper! Any guess what was on that paper? LOL He said it was a direct line to his office that I am not to share with anyone. He said that ANYTIME I have any concerns about my husband to call that number and he will call me back the same day. Aren't I special!!!! Or.....do you think he was flirting? LOL I'm laughing so hard here I have tears! OMG....what if he was flirting? :oops:

    Thanks and Tarceva

    in CAREGIVER RESOURCE CENTER

    Posted

    I don't know if your dad has medicare part D, but I found out this morning that it will be covered for my husband if we decide to use it. They said all they will need is for the doctors office to process a "pre authorization". Boy, was I happy to hear that because as many of you know I'm constantly running into a brick wall when we try to get things done with the insurance company. But then, after all the times I have tortured them during their denials, I believe I have a reputation over there. When they hear my name I can only imagine the looks on their faces! LOL :D

    So many transfusions

    in GENERAL

    Posted

    I heard from Dr. West and he said that Gemzar is really hard on the platelets, especially for the elderly. He was shocked that the onc doc didn't take him of this chemo earlier. I don't have any hard feeling toward this doctor, he's actually just overwhelmed I guess since there are only two oncs where we live. If anything, I blame myself for not looking into this earlier. I've learned that I must pay more attention and partially do their job too. It just breaks my heart when I think of all that my husband has been going through when I could have done something about it earlier.

    We see the onc doc tomorrow morning. He made an exception to see us as quickly as possible. His PA told me that she's so sorry and it seems we "slipped through the cracks" as far as the transfusion monitoring. I have a very long list of questions ready for him and hope he's prepared to spend some "quality time" with us. I'm also hoping we can start on Tarceva. I've heard good things about this drug. Especially the fact that it doesn't mess with the blood cells very much. I also called the insurance company this morning and since he has medicare part D it is indeed covered. Thank God! I was so afraid we were going to run into another wall.

    Thank you all for your kind words and wish everyone the best!

    Your Friend,

    Michelle

    So many transfusions

    in GENERAL

    Posted

    Hello everyone! It's ME again! I just wanted to ask your opinions if you would be so kind? As many of you know my husband has been on Gemzar/Carbo. He's had 7 sessions total. BUT, it's been so brutal on his blood counts that we just completed the 7th transfusion last night.

    I feel so dumb....I feel like I should have "known" this was just too much for his system to handle. I just thought, well, this is part of the way chemo goes. I've never experienced this before and left all the decisions to the onc doc.

    I started to wonder about this and was curious why I hadn't read any other posts on it so I asked Dr. West. I'm shocked that it took doctor West to educate me on this instead of my husband's onc doc. Dr. West informed me that he would have taken my hubby off this combo a long time ago!

    It's just so darn frustrating when we caregivers have to do the doctors jobs isn't it? I'm totally beyond upset and angry! We have an appt with the onc doc on Tuesday and I swear......I better get some answers to this mess. But in the meantime......we are taking a chemo BREAK! :x Maybe start Tarceva soon.

    Holy Crap!

    in CAREGIVER RESOURCE CENTER

    Posted

    "kukla"](((Michelle)))

    I think our husbands are twin cousins. We are the East Coast version of your family, down to the selfish step! My hubby won't talk about his cancer, leaves it all up to me and would lay in the bed and let me wait on him if I would. My stepson lives 30 minutes away and we saw him twice in 6 months, until things started to go south and the hospitalizations were back to back. Once he realized his dad was going downhill tho, he started visiting. Sad.

    I'm not the best nurse - I do more than I should and get frustrated when I shouldn't. I haven't worked a full day in 3 months, and have been homebound with hubby for most of that. My husband had a drinking problem before he got sick, so needless to say his friends are not what you would call responsible.

    I would agree that an MRI is a good thing. For us it was just my hubby's classic avoidance of anything unpleasant and not being able to drink to drown it out. It's personality as much as anything else on our end.

    And let's just say that there's a word for insurance companies that I can't use here....

    I've hired aides to help, at about $20 an hour, but Virginia is much cheaper than California. Here is something else I've done just for a few hours to go grocery shopping and run errands. Is there a nursing school in your area or in a neighboring city? Sometimes they let you post part time jobs at the school. If you get a second year student, you won't have to pay nearly as much and you will ge someone who understands how to handle your husband and when to call you if something isn't right. Just a thought.

    You are obviously a bright, strong woman with a good sense of humor. That is something to be proud of as it allows you to care for your hubby more than most could, and to be able to put it in perspective. And you lost weight!!

    Hang in there. I'm sending thoughts, prayers and hugs your way.

    Kathleen

    It sure would be nice if we lived closer since our husbands are so much alike. We could have a Bit*h session. LOL

    Yes, having "steps" is hard when they only care about themselves. I got a phone call yesterday from one accusing me of everything under the sun. I'm surprised I'm not responsible for the ozone layer as well. Since we have caller ID I've decided to screen all the calls. He didn't even want to talk to his dad, he was more interesting in accusing me. Oh well!

    I'm not the best nurse either....no one is perfect. I haven't left the house in months except to take hubby to doctors or the ER for transfusions. That's where my son is a blessing. He picks up medicines and groceries etc. Don't know what we would do without him.

    I don't know about your husbands physical abilities, but mine is very very weak. I have no doubt it's the chemo doing this to him and I'm happy that we meet with the doc to change and perhaps start him on Tarceva.

    Mentioning the drinking, my husband drank a lot too before all this happened but he isn't even interested now. And the funny thing is, now I am the one who has 3-4 beers every night. When he's finished his dinner and medications and settled down for the night, I pop open my beer. I guess it's okay since I don't have any other outlets. I just have them and watch the soap re-runs.

    I'm not sure about hiring someone. With my personality I would only worry constantly if I was right here with him at all times. My son keeps telling me to go have lunch with a friend or get a massage. I just can't bring myself to do that just yet. Although I did go for a pedicure once.

    Thank you for the compliments. And as far as the weight, I see some coming on. Think it could be the beer???? :roll:

    CT scans

    in NSCLC GROUP

    Posted

    My hubby's onc and pcp don't communicate either. Each week I fax the blood and x-ray's to the pcp myself. The frustrating part is that they give us conflicting instructions. It's like the right hand doesn't know what the left is doing! Frightening to say the least.

    CT scans

    in NSCLC GROUP

    Posted

    It looks like we'll be able to review the comparison CT scan at the end of this month. Apparently the person who reads them has been on vacation and they tell me no one else can do it.(yea, right). However in the meantime the onc doc's PA called me last night and said not to worry so much about the bone mets that it's post likely arthritis but we'll check on a bone scan anyway.

    The thing that's bothering me right now is the fact the the pcp and the onc doc don't talk to each other. The pcp wouldn't know anything about blood work up or x-ray reports if I didn't fax them to him myself each week. Now the issue with my husband and his abdominal pain. The did an untrasound in the ER a few weeks ago and the attending physician gave him K-pak. Then, we keep waiting....still pain.....pcp calls in oxy's....still waiting. So, when the PA calls me last night I ask her....what about this pain? She says, geez I thought the pcp was looking into that. So, this morning I call the pcp and he says.....geez...I thought the onc doc was looking into that. Well, ALL MIGHTY GOD! It's not like I don't have my hands full taking care of hubby as it is, now I have to do their jobs too? Sometimes I hate docs :cry::cry:

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