Elaine
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Posts posted by Elaine
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Please tell me to butt out if you don't want to answer this question. But what is her what they call "performance status"? Has it improved, remained stable or gotten progressively worse?
If it has or is improving, then I think that would be something to consider as being "improving."
Like I said, if I am being too nosy, just tell me.
elaine
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Yes, Bill. I guess I didn't know she had WBR and was wondering what chemo was working on the brain. I had been wrongly thinking she had had brain mets all along and HAD NOT been treated for them at all.
Well, at least they did treat them.
elaine
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What killed the brain tumors. Did she have WBR? I guess I didn't remember that.
elaine
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I am officially twice the weight I was when I married. YIKES! Yes, I weighed under 100 pounds when I got married 26 years ago.
I would love to lose weight, but I would freak out now if I lost a pound, so I continue to both celebrate and look with dismay each day I get on the scales. How's that for schizophrenia!
Peggy, that's really something! Ginny, I know that grief can cause weight loss, but you are making some lemonade by taking advantage of it! I hear Curves is really fun, so keep at it!
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Thanks David!!!
I have a feeling I won't look as good as you do bald. You are doing so much more than you know. The lessons anyone gives children last generation after generation!
elaine
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Joe,
Since you say it's not a big deal at your practice, I am guessing there is a big reason it is big deal at mine. I am thinking that many people might be wanting to switch. I do know there is one that lots of people want, too.
About the pain. I took pain meds yesterday so I don't know if I am just masking the pain since I can create the pain today but it is milder. I really, really want to take a pain pill for my legs since yesterday and now are the first times in a long time they haven't hurt.
I think what I am going to do is take the pain meds for 5-7 days. Try to change my posture while I am on computer and be sure to sleep in a different way (not sure I can pull that off) and then go without pain meds for a day or two and see what happens!
At that point , I will go back and say the pain is steady and worsening. And to top it off I will flinch in anticipation as soon as his hands even begin to touch me.
But to be able to walk like a regular person sure is nice.
Thanks all for your imput.
elaine
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Excuse me for being dense, but are you saying Bill, that your wife had brain mets evident on previous MRIs also? And that one improved since then?
He might have went to school with my onc. Once I called him about headaches I was having. I was told that it doesn't matter and not treat brain mets until they were causing symptoms! I said, well wouldn't a headache be a symptom!!!!!
Now you see what I mean about MY onc.
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I am sorry Andrea that I didn't look up the link for you. Just didnt feel well. I just remembered I had seen it and wanted you to know that things were ok.
Glad you found it!
Abducted, lol.
elaine
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Yes there is a thread about the tests. Couple of days ago.
elaine
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TeeTea
Maybe you are not normal and just color blind?!
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I do/did have an onc but I don't see him. It's a long story and I don't want to see him again if I can help it. We didn't have words or anything. He just was so negative and worse so uninformed to the point of bumbling that I just don't want to see him. I am limited by my HMO and by geography to this one practice, so to switch I would have to switch within the practice. (Someone else on this board had him and thought the same thing, plus someone else has a different one and also didn't have much good to say about him, either.) So not only do I not want the one I had, I don't want this other one either--who by the way also has more "time available" ( I can see why!). Plus, if the two are like this, how do I go about figuring out if any of the others are any different? It's not like I can interview them.
I don't know what to do. I may have mets and this situation is and has caused me a great deal of stress and wasted time. The case manager has been no help, but said I would need permission. Since they are in the same practice, I know I may have to one day see the guy and I don't want to create a worse scenario than already exists. I am sure he has good features and knows more about some things than others. How is this handled at your practice?
I tried getting the HMO to let me go out of network (and out of state) to see a thoracic onoclogist since there are none available in this network. They said that was not medically necessary. I beg to differ.
As a side question, how much interference do you see with HMOs in your area? I don't know if you can or will answer that, but I was wondering if this happens all over.
elaine
PS I posted on another thread about pain I am having and their refusal to order a bone scan today because my pain is not "typical met pain"--is there really such a thing? It sounds like I will not get to have the bone scan unless an onc will say I need it. See my catch-22?
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Does Bextra have sulfate in it? I don't know but I do know that it is like celebrex and made by same company. There has to be something different about it?!
elaine
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Anyone here had this treatment? Does fast track mean it can be gotten under compassionate use?
Having trouble finding anything but financial stuff on this...
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John,
Yes I know, but it doesn't always kill the cells, right? But does often just kill some of them, which would then break the tumor down, right? I am not doubting you, just trying to understand.
I also did not think that it was impossible for mets to occur while undergoing chemo. It seems lots of people discover mets in between scans to see if chemo is working. Or is it just that those mets just so happened to become large enough to be visible--which also means that they are growing while chemo is being administered.
I kind of wish my onc would have been at least somewhat hopeful but I think he was being honest with what he told me. I also think he was wrong. I see others with large tumors that have not had mets. He swore I did, but they just weren't showing up and it was hard to tell because of my HPOA.
Then again I have no idea how long it takes for a met to present itself either.
Kim, hope you see John's questions to you and that you can answer.
Thanks
elaine
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Katha
All I can say is that you gave me one heckava good cry here, too! As the oldest of a mishmash of 6 and the only girl, I can relate. Not easy to let the "little ones" see ya weak.
elaine
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Donna,
I dont think it's that, mainly because this pain is so different and the HPOA pain is symmetrical and only one side of my (sheesh I don't know if it's considered my shoulder or my back!) hurts. I tried looking up anatomy of that area and it's not easy for me to understand it. Lots of mucscle and tendon and yes, bone. Now it does hurt to poke at it but maybe because I have been poking at it. lol!
Don.
I am only allowed one Dr change a year. I am new to this forsaken town and so if I do run accross someone I will make the change then. I just can' believe that HMOs take so much choice away from patients--even choosing Drs. That's why I have went to Urgent Care last two times. It's in the same building as my Dr. so they have my records but I don't have to see him. He was supposed to call and follow up on my swelling but never did. He and I have never had a disagreement and I can't even imagine that he even has a clue that I am not happy with him, so that is not the reason why. I think he is uncomfortable with cancer patients. I was assigned him, and his thing is occupational medicine. Not even sure what that is.
I just can't see why I need to wait 10-14 days to get a scan--they have them there. It's not so much the physical pain but the distress of all of this that at times seems unbearable.
Thanks for listening. I guess I was just venting, mostly. I don't know what mets feel like, but I just know they don't all feel alike, as he suggested.
elaine
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Shar,
I know you are devastated right now and that is unfortunately what this beast does to us, but like others have said, you don't know yet what they mean, so try to be calm ( sheesh, like I can!) but truly, it doesn't do much good to be otherwise, as I for one know.
I wish there was something more I could do or say, but pls know that I care.
love and fortitude
elaine
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Great news Amy!
You must be so happy!
elaine
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PS.
He did mention ligament pain. But I have never torn a ligament that I know of and thus have no idea what that would feel like.
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Fay,
I am sure that whomever read it, assuming someone did (since the show seemed to be about getting help quitting smoking) understood what you meant. Since the advent of the Internet, email, message boards, we have all gotten a lot better at reading "typo"--it's almost a new language!
Thanks for trying to get their attention. I missed the show, so I don't know what went down.
elaine
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For the past two weeks, I have this excruitiating pain in my upper back-that just arises after some kind of movement (raising my left shoulder while leaning my head to the left at the same time). It lasts about a few seconds and if I move the area it will continue to jab, seer and tear a few more times.
I don't know if it's bone pain or not. So I go to urgent care and try to describe this pain and I am told bone pain is continuous and dull. Well, I have read that too, and I have also read otherwise but it's not like you can say "I read it on the Internet" and feel like you are saying something that sounds credible.
I am told it is muscle pain. I don't all the way believe that because I can't feel a trigger point or recreate the pain by jabbing around where it is. This pain is so b ad that if it lasted more than the few seconds it does, I could not stand it.
Of course I cant get the pain to occure while I am there. (though now I can). Then the Dr and I discuss anatomy, which I don't know much of but I do know there is bone there (clavicle or part of the scapula, I don't know).
The short end is that I get NOTHING done. Maybe a bone scan next week sometime IF the HMO approves it since this is not typical bone pain.
It is hard to describe a pain that I have nothing to compare it to, so I say jabbing, burning seering, tingling, sharp and he asks me "Well, which one?" as if none of those words go together.
I have a paraneoplastic syndrome called Hypertrophic pulmonary osteoarthropy that causes a lot of bone or perissteal pain to the touch and some joint pain, but it is symmetrical pain and this is not. I tell him that HPOA is symmetrical pain and he says, "I didn't know that."
10-15 per cent of all LC patients have this, which means at least 20,000 people each year develop it and Drs don't know about it? This very same Dr didn't know if it could be the cause of my leg swelling a month ago--it could very well have been though it is unusual for it to just come up for a few days and leave.
So if he doesn't know, I think that's great, but shouldn't he try to find out what is causing this pain. He treated me like I was just some person off the street with some mild pain and not a cancer patient
and get this:
"When I showed him the movement that sometimes seemed to draw the pain out, he said "Well don't do that!"
GRRRRRRRR
Would an xray show something? He seemed to say it wouldn't but he didn't really say that, soooo.
elaine
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it's a DOTCOM on mine. It's also all little letters, no caps. Don't know if that matters or not.
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Bill
Here is a thread on this forum that might interest you.
There is also a link on a post I made on that thread that you might want to check out, thoroughly.
elaine
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John or anybody,
I got to thinking and wondered this: If a person does chemo WITHOUT surgery to remove primary, what stops the chemo from actually breaking down the primary and sending it on is such a way that it makes mets?
" NO BRAIN TUMORS " he says ???
in NSCLC GROUP
Posted
Basically, Bill, it just is a measurement as to a person's ability to carry on with normal activity.
Here is a link
http://www.fda.gov/cder/cancer/perstatframe.htm