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Medical Forum / Diseases and Disorders / Cancer / December 2004status report
Went to the onc on wednesday, with interesting results. the onc wanted to switch me from morphine and percocet to a new pain controlling patch using Duragesic (fentanyl). You put on one every 72 hrs and use the morphine or percocet for breakthru pain. Trouble is - my insurance only covers generic drugs, this isnt generic, and a three month supply costs over $1000. SO much for that idea. I have to stick to morphine. Meanwhile he didnt think Iressa would work for me because I'm "not sick enough yet". figure that one. he also decided to cut back my zometa from once a month to once every 3 months. so am I going to be around for a good long while or am I being played by someone at an HMO saving costs in a hopeless case? how do I tell? well, if he's right, i'll be at the Welsh "re"(?)-union in May  SignatureI AM SPEWS (SLAPP PREVENTION ELECTRONIC WHITENOISE SYSTEM) "The day Microsoft makes something that doesn't suck is probably the day that they start making vacuum cleaners."--Doc in alt.privacy agent01413@my-deja.com said... > Meanwhile he didnt think Iressa would work for me because I'm "not sick > enough yet". figure that one. he also decided to cut back my zometa from [quoted text clipped - 3 lines] > > well, if he's right, i'll be at the Welsh "re"(?)-union in May So I should jolly well hope! I'm not clearing out my house and considering the prospect of cleaning it just for you to cry off because of some pathetic excuse about being 'differently alive', you know :-) SignatureI try to be a good example to my children, but they just see me as a dire warning. > Went to the onc on wednesday, with interesting results. > [quoted text clipped - 12 lines] > > well, if he's right, i'll be at the Welsh "re"(?)-union in May Sounds to me that he's got a well-oiled longer-term plan, maybe to protect your kidneys (Zometa) and treat to symptoms (Iressa) and quality of life - just think, less infusions, less bloodwork. (Maybe Steph would comment). I don't know why he wants to add patches or switch to percocet. I did see that care should be taken with patches when one has a fever (just a side comment). Perhaps Mike would comment about the pain meds. Does he know your "May" plans? Maybe he figures if you can afford trips, you can afford patches? The hiccup which might occur, is that might be just when you need the Iressa and more regular Zometa?... or worse yet, too sick to want to bother with Iressa and go to overseas...catch22. J nobody@to.contact said... > Does he know your "May" plans? Maybe he figures if you can afford trips, you > can afford patches? Tell him it's being subsidised... - but don't hold me to that 'cos I don't work for money; I'm a volunteer classroom assistant in a primary school :-) SignatureI try to be a good example to my children, but they just see me as a dire warning. > nobody@to.contact said... > > Does he know your "May" plans? Maybe he figures if you can afford trips, you [quoted text clipped - 3 lines] > 'cos I don't work for money; I'm a volunteer classroom > assistant in a primary school :-) Of course I'm just conjecturing. I'm surprised that Steph didn't pop in and write "ask your doctor" why he's making these changes. I didn't know that you volunteer in a primary school (bug factories). Do you get colds a lot? A friend on another newsgroup, does often. Then we all think of ways to unstuff her sinuses. Then she shoots the ideas down. Maybe she should change careers and give us a break <g> J > > nobody@to.contact said... > [quoted text clipped - 4 lines] > Maybe she should change careers and give us a break <g> > J Sorry to butt in here, but what little tips do you give to your friend J?? I've a 10 yr old with a flippin horrid cold crashed out on the sofa hiding under a duvet. I bet she will be over it in time for Christmas but have a sneaky idea of what my pressie is going to be ;-) Hugs All Alayne > > I didn't know that you volunteer in a primary school (bug factories). > Doyou get colds a lot? [quoted text clipped - 8 lines] > under a duvet. I bet she will be over it in time for Christmas but have a > sneaky idea of what my pressie is going to be ;-) Whiskey? <smile> I splattered water all over my keyboard when I saw your question. After mopping that up, I went to see her status.Her nose/sinuses are stuffed up. If the last suggestion (from someone else) doesn't work, she's going to use her hubby's drill. <g> (more splatter on my screen) I have a friend who "sweats it out" - just like your daughter and except for some residual minor symptoms, he's right as rain, within 24 hours. So what do you need help with (which symptoms)? I'll email you a link to the thread on that subject. Some of the medications some mention may not be familiar to you. We always used non-oral medications as kids unless there was an infection or too much coughing. And keep her at home early next week. She can still be infectious or if her immune system is trying to recover can easily recatch cold from others. Hugs Alayne. J > Sorry to butt in here, but what little tips do you give to your friend J?? > I've a 10 yr old with a flippin horrid cold crashed out on the sofa hiding > under a duvet. I bet she will be over it in time for Christmas but have a > sneaky idea of what my pressie is going to be ;-) Hi Alayne, Just to be clear, I'm very sorry to hear about your 10 yo. I wasn't laughing at your situation. Hugs J nobody@to.contact said... > > nobody@to.contact said... > > > Does he know your "May" plans? Maybe he figures if you can afford trips, you [quoted text clipped - 6 lines] > Of course I'm just conjecturing. I'm surprised that Steph didn't pop in and write > "ask your doctor" why he's making these changes. I got the impression that Socks had asked though - and that the response was as told to us. ICBW though - I often am. > I didn't know that you volunteer in a primary school (bug factories). Do you get > colds a lot? Oddly, no. We've just finished term for Christmas and at one point or another have had half the infant department down with chickenpox. My own children have had it already so since they weren't affected I guess they've got their immunity; I've had it in childhood as well, but nonetheless half expected to at least feel unwell with all those lovely germs about - but managed to escape completely. I think I must be immune to small brat^^^^children :-) There's a reason for my helping in the particular school I'm at: my three younger children are there. This means that I get to send them to school *and* see how they're doing and developing at the same time. My younger daughter was only three years old when she started school (it's standard for this particular LEA[1]) and I really felt that was far too young. Helping out was my answer - she could go to school and I could still spend time with her. I don't spend so much time with her now because she started to get a bit clingy when I was around; however since my youngest son has no such problems I work in his class more or less full time. Every now and then I get to go upstairs to the junior department, and then I can maybe have a quick chat with my middle son or his teacher... It's a very friendly school, and great fun to work in. I especially love the run-up to Christmas (although I hate Christmas itself and always have) because there are concerts to prepare for and lots of lovely glitter, paint and glue to play with - often all at once :-) > A friend on another newsgroup, does often. Then we all think of ways to unstuff > her sinuses. Then she shoots the ideas down. > Maybe she should change careers and give us a break <g> Hmmm. Or - in Cardiff there is a department of the university where they pay people in real money for having a cold. You go along with your coffs and sniffs and they give you tissues to coffin and sniffin - and then they analyse the results. All you have to do is to feel like death warmed up, and they pay you for the privilege. I'm assuming there are other such research centres around... it could be quite a little money spinner! :-) http://www.cardiff.ac.uk/biosi/associates/cold/home.html [1] LEA = Local Education Authority SignatureI try to be a good example to my children, but they just see me as a dire warning. Pausing only once for breath, Emily <emily@privacy.net> said: > nobody@to.contact said... >> [quoted text clipped - 12 lines] > the response was as told to us. ICBW though - I often am. > He abandoned his plans to give me Iressa because of the additional studies that he knew about on Wednesday that seem to have hit the popular press this morning. It seems Iressa only works under limited circumstances, and my illness doesn't match those circumstances :-( He continues to monitor. He wanted to change my pain meds to give my kidneys a rest. However, my last CBC had my kidneys and just about everything else well inside the normal range. Only thing outside normal is my liver, and my liver numbers have been outside normal since I turned 18 and could start hitting the adult beverages. Even that was closer to normal than we're used to. That being the case, not making the switch doesn't seem to be as critically important as it might be if my numbers, especially kidneys, suggested a problem. Meanwhile, figgertoes is job hunting. she isn't happy where she is. I don't think she'll like the job she's interviewing for, but she's a grownup and has a right to make her own choices. Chances are fair that I'll be back in a situation where I can get non generic drugs without losing my shirt. Speaking of which, when I price the legit Canadian online pharmacies for prices on Duragesic, I get "not available control drug". What is a control drug? SignatureI AM SPEWS (SLAPP PREVENTION ELECTRONIC WHITENOISE SYSTEM) "The day Microsoft makes something that doesn't suck is probably the day that they start making vacuum cleaners."--Doc in alt.privacy > Speaking of which, when I price the legit Canadian > online pharmacies for prices on Duragesic, I get "not available control > drug". What is a control drug? Well, pain meds are a controlled substance. I would only be guessing that they don't want either their competitors or addicts, or break-in artists to know quantities. Guess you'd have to "jump" through extra hoops to get the iinfo you're looking for. However, I don't understand the double negative in the other paragraph. J > He abandoned his plans to give me Iressa because of the additional > studies that he knew about on Wednesday that seem to have hit the popular > press this morning. It seems Iressa only works under limited > circumstances, and my illness doesn't match those circumstances :-( Is that what Howian posted? "Note that woman non-smokers (or sometimes very light smokers) with adenocarcinoma, even at stage 4, have a far different prognosis than thought of before. Recent studies show 30-40% response rates for BAC/adeno woman non-smokers given Iressa. Check out Lynch's article in the New England Journal of Medicine and followup. " (PS - it didn't work for Rian but I don't know what degree of smoker she was). OR http://www.medicalnewstoday.com/medicalnews.php?newsid=18013 One requirement for drugs approved under the agency's accelerated approval program is that the sponsor must study them further after approval to verify the expected clinical benefit. After the approval of Iressa in 2003, AstraZeneca conducted a study in approximately 1700 patients to determine whether the drug would in fact prolong survival in comparison to patients taking placebo. The results announced today indicate that the drug did not prolong survival. Under FDA's accelerated approval program, the Agency has the authority to remove a drug from the market if a postmarketing clinical study fails to verify clinical benefit. http://www.timesonline.co.uk/article/0,,2-1407593,00.html December 18, 2004 Iressa no better than placebo By A Correspondent ASTRAZENECA yesterday revealed that its cancer drug Iressa had turned out to be no better than a placebo in treating lung cancer." J >> He abandoned his plans to give me Iressa because of the additional >> studies that he knew about on Wednesday that seem to have hit the popular [quoted text clipped - 35 lines] > > J Yes, but I won't say I told you so............ > "J" <nobody@to.contact> wrote in message > [quoted text clipped - 7 lines] > > Yes, but I won't say I told you so............ Well, you did. Your unenthusiasm (over the years) about it has been remarkable. I feel bad that I did not put up "filter Howian" posts. OTOH, however, few filter anyway...half of them don't even know what I mean. [shrug] J >> "J" <nobody@to.contact> wrote in message >> [quoted text clipped - 16 lines] > [shrug] > J I don't think Howian should be filtered. He has an opinion, but he's honest and reasonable. Though wrong > >> "J" <nobody@to.contact> wrote in message > >> [quoted text clipped - 20 lines] > and reasonable. > Though wrong I expect better from a personal injury lawyer (who has purported to be educating himself about llung cancer) and who has been writing and selling books about lung cancer. J >> >> "J" <nobody@to.contact> wrote in message >> >> [quoted text clipped - 27 lines] > books about lung cancer. > J I didn't realise he was an ambulance chaser steph@vancouver.island said... > > I expect better from a personal injury lawyer > > I didn't realise he was an ambulance chaser I am so glad it's not just me who hates the fact that people are no longer prepared to take responsibility for their actions. Where there's definite negligence involved - for example a dangerous machine results in the loss of a limb - that's fair enough[1]. What we have here however is people tripping over paving stones and suing the council because they couldn't be bothered to look where they were going. [1] It happened to someone I know. He'd been saying for ages that a certain thing was dangerous and an accident waiting to happen, but nothing was done. It's some years now since he was left without the lower half of his right arm. Such cases, however, are (I believe) not all that common. 'Industrial injury' claims, however, are. SignatureI try to be a good example to my children, but they just see me as a dire warning. > steph@vancouver.island said... > > >J said: I expect better from a personal injury lawyer [quoted text clipped - 4 lines] > are no longer prepared to take responsibility for their > actions. Well, I think we're talking about lawyers who just happen to show up, at an opportune time, in places where they might convince people to sue or hand out their business cards and say "call me, I can help get you compensation for XXX" . J > Hmmm. Or - in Cardiff there is a department of the university > where they pay people in real money for having a cold. You go [quoted text clipped - 8 lines] > > [1] LEA = Local Education Authority Well, I don't know about paying but it says that those in clinical trials get free meds. It also says that colds spread from the nasal passages (not kissing nor presumably sharing the same cup, but I wouldn't count on that). It's weird because it says that coughs do spread the viruses. (and sneezes, okay). I suppose the digestive tract destroys viruses (only my conjecture) and/or it doesn't get into the lungs or sinuses that way. Hand to eyes contact, gets into the sinuses. Very interesting info. Thanks. J nobody@to.contact said... > > http://www.cardiff.ac.uk/biosi/associates/cold/home.html > > Well, I don't know about paying but it says that those in clinical trials get free > meds. Things may have changed, of course... As a student mumble years ago it was a nice little earner since living in a hall of residence was guaranteed to provide just the germs the research team were after <g> SignatureI try to be a good example to my children, but they just see me as a dire warning. > Oddly, no. We've just finished term for Christmas and at one > point or another have had half the infant department down with [quoted text clipped - 4 lines] > managed to escape completely. I think I must be immune to > small brat^^^^children :-) I was researching chicken pox and shingles last Spring. Apparently (CDC website, IIRC) we can eventually lose our immunity. I've been meaning to ask some doctor about this (reimmunization), however I feel some reluctant to mess with something that ain't broke (if you know what I mean). I think it can happen after stress and/or infections..so many of us boomers might be at risk, later in years. My grandmother had shingles and seemed to go downhill from there...to strange brain things, although she lived into her 90's.. > There's a reason for my helping in the particular school I'm > at: my three younger children are there. This means that I > get to send them to school *and* see how they're doing and > developing at the same time. [snip] Makes sense to me. Re: Three younger children, just how many do you have? and/or no wonder we won't award you the chef/mom /house cleaner of the year award <grin> Hugs J nobody@to.contact said... > I was researching chicken pox and shingles last Spring. Apparently (CDC website, IIRC) > we can eventually lose our immunity. Eeep? I've got a friend with an autoimmune disease (Sjorgren's Syndrome) who is prone to attacks of shingles at the drop of a dropped thing. I'd not like to be in that position; however AFAIK there's no vaccination against that particular virus. > > There's a reason for my helping in the particular school I'm > > at: my three younger children are there. This means that I [quoted text clipped - 3 lines] > [snip] Makes sense to me. > Re: Three younger children, just how many do you have? Five. Boys of 16, 9 and 7; girls of 14 and 4. > and/or no wonder we won't award you the chef/mom /house cleaner of the year award > <grin> Oh that's just bone idleness! Though at the moment it's all hands to the pump to get the house cleared as much as possible because major wiring work starts here tomorrow... Hey! We've got *carpet* on the floors! Who'd have thought it? And some of it's been preserved for so long under goodness only knows what it's almost good enough to keep! Wow. And... what's that in the corner? A *cupboard*? How long's that been there? Is there anything of any value in it? Ah. The electric meter. I'd been wondering where that had got to... And what's this? Oh, yuk! Anyone want a dead apple core, complete with its own ecosystem? Perhaps I should buy shares in the company that manufactures black rubbish (trash) bags... SignatureI try to be a good example to my children, but they just see me as a dire warning. > nobody@to.contact said... > > > > I was researching chicken pox and shingles last Spring. Apparently (CDC website, IIRC) > > we can eventually lose our immunity. > > Eeep? I can't find the web page, didn't look too hard, other stuff happening. The shingles web page said some people over 50 may need reimmunization.."talk to CDC or your famiy doctor". > I've got a friend with an autoimmune disease ditto, Lupus and Sjogren's and RA I think (but I would have to check) the rule is "no live virus" for vaccinations. They are at risk because they're on Immunosuppressant drugs. Aging is a factor too. > (Sjorgren's Syndrome) who is prone to attacks of shingles at > the drop of a dropped thing. I'd not like to be in that > position; however AFAIK there's no vaccination against that > particular virus. No, well, it's the chicken pox virus that reactivates or they catch it from someone else? http://www.umm.edu/patiented/articles/who_gets_chickenpox_shingles_000082_3.htm > > > There's a reason for my helping in the particular school I'm > > > at: my three younger children are there. This means that I [quoted text clipped - 13 lines] > because major wiring work starts here tomorrow... Hey! We've > got *carpet* on the floors! well congrats. Is carpet a great thing in UK? I've removed carpets wherever I've lived. Allergies and too much work to keep clean. I like wood floors or tiles or anything that can be dry mopped, then wet mopped once in a while. > Who'd have thought it? And some > of it's been preserved for so long under goodness only knows [quoted text clipped - 5 lines] > complete with its own ecosystem? Perhaps I should buy shares > in the company that manufactures black rubbish (trash) bags... Sounds like your place was an archaeological dig..<g> Maybe delegate some tasks once your start fresh. Those kids are old enough now to take more responsbility. It's good practice for when they'll eventually have to do it when on their own. J > the onc wanted to switch me from morphine and percocet to a new pain > controlling patch using Duragesic (fentanyl). You put on one every 72 hrs > and use the morphine or percocet for breakthru pain. Trouble is - my > insurance only covers generic drugs, this isnt generic, and a three month > supply costs over $1000. SO much for that idea. I have to stick to > morphine. I forgot to add that there's a move by Feds (Canada) to stop buying at Cdn online pharmacies (shut them down). The drug stores have been grumbling that the stocks are sent to the online pharmacies, then the drug stores cannot meet the local needs. The counter argument has been that it would put people out of jobs, particularly Province Manitoba. However, pharmaceuticals are now threatening to stop our supply if we don't stop the online selling to the US. Gov't is slow, but don't count on it. An FYI in case you want to check stock, prices and stock up ahead of time. I don't know the "expiry dates" on patches. My understanding is your doctor prescribes, you fax (or somehow) send the prescription, a Cdn doctor approves it, you buy. J I think your doctor wants to change your medication since you can build up metabolties that can interfere with the effectiveness of your pain management. Also for some duragesic can have less side effects that other medications. The cost is high, but if and when the time for hospice occurs they will pay for your pain medications including duragesic. It does not sound like you are ready for hospice though. |
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