jaminkw
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Posts posted by jaminkw
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lady bug
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STEP OUT OF STORY: Oh, Sandra, I'm waiting to hear who touches that one!
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Caty, I know I felt like I'd been hit with a sledgehammer when I was diangosed. I know you feel overwhelmed right now but slowly but surely you'll learn what to ask (and not ask!) and when to ask it. It's a whole different language but it comes with time. Don't know what your doctors have planned for you tomorrow in addition to chemo but in my experience, they feel like kind of separate entitites. In the beginning, I would go see my oncologist for weigh in, bp, temp, kind of routine stuff in addition to reporting on side effects, etc. Then I'd go for labs, either in a separate place or right in the infusion room. I think most facilities have infusion rooms where you sit in a chair and are hooked up to IV chemo in bags. Sounds like you weren't given the option of a port but you could ask about it. It's a separate surgery but well worth it.
My advice, talk to the chemo nurse(s). They are a fountain of information and gave me my earliest most important education. Of course, then I found all the generous people on this site.
Good luck, Judy in Key West
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Sandra, Your getaway sounds fabulous. Try those patches Muriel is talking about. Some last for 8 hours. I've tried them and they're a good option.
Have fun, Judy in Key West
P.S. Email hasn't come through yet!
P.S. Patti, hope you guys act up/out. We're counting on it.
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Joe, Thanks for the info in language we can understand. Sounds very interesting and a worthwhile study in which to participate.
And what a treat getting to see DC at night. It's my favorite way to see it. Was there with our grandson a couple of weeks ago but my energy level didn't allow me to make it until dark. I can still remember seeing Lincoln up in that huge concrete(stone?) chair at night.
Good luck with the trial, Judy in Key West
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Judy, sorry about how you feel. I remember it well. But it must be awful feeling awful and having to deal with such a big lifestyle adjustment. Yes, we often need some help but there is so much to be said about peace and quiet. To bad the family's arrival interrupted your plans for chat. Hopefully, once they get settled in you'll be able to reestablish a sense of control over your life.
Judy in Key West
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Teri, I look at that picture of the two of you and can only just imagine how difficult this (almost) year has been for you without Bill. Come back and tell us about your English family and the trip.
Judy in Key West
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He is gone.
in GRIEF
I am so sorry for the loss to you and your family. It's suddenness or the fact that it was the outcome of treatment doesn't help. May time bring you all peace with his passing.
Judy in Key West
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Ron, Best of luck with the test results. I keep saying the waiting is the worst!
By the way I'm a forty-something year marriage survivor too and wouldn't trade it for anything.
Judy in Key West
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Yes, Joe, we're all here waiting for your update. Hope it went well. I went to the link but didn't have time to dig deep today. I'm confused by the name "vaccine" I thought a vaccine was a prevention tool not something they give people after they already contract a disease? Anybody have any imput on that?
Judy in Key West[/b]
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Randy, I'd heard a couple of the tips but some of the others were new to me and amazing. I may even do a little copy/paste with some of them. I particularly like the cornmeal for the ants! Pesty little buggers they are. I don't use dryer sheets or scents but everyone who does should read that one! Course, now my hubby wants me to scrub it anyway, just in case I guess? Or just to get me off this site for awhile LOL.
Thanks, Judy in Key West
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Kasey, Thanks for the update. I was one of the people who inquired about her. Glad to hear all is well and we can expect her back soon--and from her new digs!
Judy in Key West
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Chris, Thank you for your generous post. I'm sure others will read it and benefit from the reassurance it offers that the end can be peaceful.
Judy in Key West
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Awe guys, hugs and kisses. You're all breaking my heart.
Much love to all you caretakers who have lost a cherished one.
Judy in Key West
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Andrea, Good luck with your mom's scans. I started getting itchy right after my last infusion. My next along with my scan is due three weeks from then. I can usually keep the eeby geebies at bay until just after that previous scan. I'll be a wreck under the surface where most people won't see it until Aug 12. I'll probably start whining in earnest about a week before.
I'm still mad that I've put back on the 15 lbs I worked so hard for six months to lose just before I got diagnosed. I stopped going to the gym over four years ago when I bought myself the Total Gym so I don't have to worry about the workout clothes anymore, and I haven't done classes since I was thirty-something. But girl, 500 calories? Can someone live on that???
Judy in Key West
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Denise, I'm so glad it was overall a good day. I'm tired just hearing about it. Give Tom (and yourself) a big old "poor baby" tomorrow, o.k.
Judy in Key West
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O.k. Ned, thanks for your fantastic recall! Dr West may have overlooked the mention of radiation in the first sentence of my post and just focused on the Gemzar question. Sandra, listen to Ned. He really pays attention to detail. If it were me I'd question my onc on that specific point.
Judy in Key West
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Coni, Those kind of little things mean a lot.
Judy in Key West
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Sandra: Here's Dr West's opinion:
Gemzar doesn't have much of a track record in second line, but I suspect it's a fine alternative. It was approved as a first line treatment, and in general if a pharma company gets their drug approved first line, they are happy with that and don't to test their drug too much in later lines (pharma companies would prefer that doctors prescribe their drugs as earlier treatments, because many patients don't get to subsequent treatment). I suspect but don't know that gemcitabine would be very comparable as a single agent. On the upside, in the trial that compared cis/gemcitabine to cis/alimta, the cis/gem arm looked decidedly more favorable for squamous patients. Subsequent work that I've described in my recent posts has pretty convincingly shown that alimta just isn't effective for squamous cancers, so it's not clear to me whether gemcitabine is particularly good or just that alimta was especially ineffective for the squamous patients.
Otherwise, the better studied agents for second line or later include taxotere, which appears to be just as effective in squamous and non-squamous patients, or tarceva, which rarely induces significant responses in patients with squamous tumors but still overall provides a favorable survival benefit.
Dr West (then he has the standard disclaimer about not recommending any particular treatment etc etc)
Judy in Key West
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Sandra: I'm a bit of a boob. I copied Dr West's reply and then copied a link to other posts on the subject. That effectively made me lose the copied reply. O.k., here's the link (I think):
http://onctalk.com/bbPress/topic.php?id=839#post-4068
You copy (Ctrl c) then remove whatever is in your main search window at the top of your screen and paste (Ctrl v). Hit the green arrow or whatever takes you where you want to go on your computer. Hope it works. I'll try it again myself and then go get Dr West's comments for you.
Judy in Key West
P.S. Right now I wish I was Ned.
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Wendy, I hear you when you say we don't know what's what after awhile and I haven't been on chemo nearly as long as you. Still, it really helps to hear someone who experienced similar side effects even if they aren't commonly associated with a particular treatment. The pins and needles set in after about the fourth maintenance infusion. I have a real problem anyway with being always cold but I can't say particularly just hands and feet but know I've been complaining more about being cold. Odd thing is, I'm starting to have some significant sweats again too. Don't like that at all since a chemo nurse once associated those with the cancer. I'm past the menopause thing. I agree the brain fog is different, for one thing mine comes and goes more now than being constant.
Mary, I didn't even mention the hoarseness but it set in a couple of months ago. It lasted a month or so and has passed but both I and my husband noticed it come and go. I've had some feet issues but they aren't as significant as my hands, probably because my hands are already twisted with arthritis.
What a crap shoot this all is. Thank goodness we have each other to bounce thoughts and feels off of.
Judy in Key West
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Oh Randy, I'm so sorry you've had such a rough day. My husband gets the gout as well and for anyone unfamiliar with it, it's a nasty painful thing. Glad you worked it out for mom and dad. You're a good son! I can just picture the hospital event. Have had people with similar personalities in our family.
Maybe someone in charge can merge my Sunday into your Sunday. If not, there's always Monday. Have a peaceful evening.
Judy in Key West
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Wendy, That makes perfect sense. I think it could be called community empathy.
Judy in Key West
Dealing with depression
in CAREGIVER RESOURCE CENTER
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Coni, I know how tough it is. I remember years ago when my own husband went through a severe depression and refused help. Fortunately, I'm not prone to depression but since you say you deal with it yourself, I'm reminded of something I've heard Dr Phil say: This situation calls for a hero. In your case it would mean one of you (probably you) would have to draw on all your resources and supports and stare your own depression down. Sometime example is the best teacher. A simple tool would be when he says something you read as "down," grit your teeth and ignore it and change the subject and talk about something more positive. I know, easier said....
Feelin for you, Judy in Key West