richinsdakota
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Posts posted by richinsdakota
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Yep; welcome...and I 2nd all the above...look forward to learning, supporting together. Rich B.
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Hmm...I dont have any idea what it could be hon, but she sure should see a Doc. or emergency room, I would think. Never hurts to be sure its nothing. Can u talk her into that? Dont know if blood clots or something could cause that...hope someone has better answers for y ou here shortly. K..good luck
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Oh..duh...Ive been reading so much about drugs lately on here...I thot u were trying "speed" for treatment....hehehe...sorry bout that.
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Yes, by all means...get a 2nd or even 3rd opinion/diagnosis...make sure what youre dealing with before treatment. Sounds like you had the whole body PET scan? Make sure there arent any other trouble areas before any surgery, for instance , is done. My surgeon didnt do these things either, just lucky the follow up scans were clear.
Yea, its so hard to follow all the docs thinking, and to get them to communicate w/ea. other, etc....but youre looking in the right place for learning how to deal with this disease, and docs. good luck an d keep reading/posting . Rich B.
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Hmmm..yea, I forgot about the contrast dye...could be that, too, I spose...gonna bring it up with my Onc. next week, course I dont think Im havin any more MRIs now...barring a recurrence , G. forbid. But want to sort it out so I know what to avoid if there is a next time, makes me G. awful sick, whatever it is... But, Ive had contrast with CT scans, and dont remember any effects from it, if its the same stuff...dunno.
No, Grumpy, theres no metal or shrapnel in me, so no probs there, ...but I do notice this uncomfortable warming of the body when in the MRI...uses radio waves in addition to magnetic fields, so I guess it acts a little like a microwave, jus cooks you rare, not well done tho..hehe. (Had to remove my nicotine patch, she said the foil backing will heat up sometimes...so I assume it heats up the body some too.)
K..anyways, thanx for the food for thought...Ill try to sort it out and post whatever "warning, MRI ahead" I find..hehe
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Trying to figure out what is giving me nausea/vomiting ....anyone ever get this the day after an MRI? I had two MRI/spine scans lately...both times I got violently sick the evening of the day after. Durn thing actually makes you warm, heating the tissues inside, wonder if it could cause it. dunno.
I also switched pain meds those days...coulda got mixed ....had to take darvocet to allow me to drive over and back...then switched to oxcodone or percocet after arriving home. Could be the cause also...dunno
(hope Oncodoc is still on line..hehehe)
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Yea, seems theres no rest in this battle sometimes...wish you the best of luck with this round...and a break again soon...Rich B.
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Wow...thats great...yep, Ill have a shot of that water cocktail..hehe...
Im starting preventative chemo Mon....3 treatments , I guess over several months. Guess we gotta give ourselves every chance, the way I look at it. Might catch them little nasty lurkers, if any in there. K..congrats to you again ! Rich B.
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Welcome...I hope we can help each other learn and survive...look forward to your posts..Rich B.
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Thanx for posting the latest on screening by CT....Yea, is expensive stuff. There is some interesting effort going on to develope a blood test, to detect the :"protein trails" that cancer cells generate in the bloodstream. Sounds like nothing real soon, but wouldnt it be nice...no needle biops or bronchos needed...sigh. Maybe someday this LC nightmare could be significantly reduced in trauma effect, anyway in the early diagnostic stages. OK...catch ;ya later...Rich B.
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Welcome Ed; Yep, sounds pretty standard, I had entire leftlung removed, so nothing to bump around, ...but I could feel like liquid sloshing around in there when I walked. (One of my scans noted; "fluid in chest cavity"..so not my imagination either. heh . Apparently its like the swelling on the outside of incision, produces fluid inside too..? And shortness of breath, while panicky at first waking, has improved some, but I dont think Ill ever be able to run from the cops again...(grin)...took me several hours to rake half the leaves off the lawn...sigh. I would guess one could build capacity more by rigorous workouts, when youre able, but with normal activity, I think Ill always be restricted in what I can do now.
As for pain and swelling, ...Im 3months out now, and still have pretty intense pain in front of chest, and back pain that apparently was aggravated by chopping out of the rib. Still working on pain management issues , and dealing with the seemingly interminable disability...still cant do much yardwork or house chores. Takes lot of time, for some of us, I guess....Oh, yea, numbness down front of chest., dunno if that will ever stop...
Ok, again, welcome and good luck...keep postin...Rich B.
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Katie; as you see above there are all different procedures folks go thru...I can only add that things can be rushed too fast sometimes. I was rushed into surgery after diagnosis, with nothing but a bone scan (which I insisted on) to rule out other possible areas of involvement. I was naive then, but since I learned more I marveled that it luckily all worked out...(subsequent scans, order ed by onc. showed no more problem areas) but, ....it was just luck...we didnt really know at the time of surgery whether the tumor was an isolated one or not! sheesh...
As our Oncodoc member informed me, many hospitals have the protocols in place to ensure all necessary scans, and thus the total picture of patients disease, are done and known BEFORE surgery can proceed. My surgeon obiously is not under any such rules...be a good thing to find out whether yours is. Seems to me at least the PET scan should be done (whole body)...probly more, check with oncologist ...he is the expert on this...(also, some hospitals have a "tumor board" , or multi-doctor panel to review and recomend best possible treatment.) These include docs from many different specialties in conference with each other, as I understand it.
Ok....welcome to the group, and best of luck to you and Dad...and see the Oncologist before rushing into anything. Rich B.
For more on this; search keywords like "protocols", "tumor boards", maybe...
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K..thanx for that info...reassuring..hehe...(Im such a medical coward)..sigh.
Peggy; as you see above, the" K"..is just my wierd shorthand for "OK"..heh..doesnt save much time tho, does it...Rich B.
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Thanx for your replies...
Kaffie, are you started with chemo? How is it? (I start in a week, if plan holds this time.)
Good luck to us all...Rich B.
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Chemo delayed another week....onc. wants opinion on the spine lesion first, and ortho doc. didnt like the way I posed on last MRI...want s to do another before he renders a guess. So far tho...he doesnt see any red flags there...so dunno.
K..jus wanted to update since few posts here this week...Once we get this done, then a big chemo dose next week...dreadin it, but gotta get it over with by Xmas...be done cept for periodic screenings. K...catch ya latta...Rich B.
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Congrats !!! Yea, throw away the appt. cards and sleep all you want...then celebrate. You deserve it...Rich B.
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Ok...but if u win, the drinks are on you, right? (wink) ...enjoy yourself...cya later. Rich B.
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Unfamiliar with subject, but will keep my eyes open...can only wish them the best ....good luck Rich B.
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Welcome...lot of support and info here for you...great folks who help each other learn, go on with the fight. Good luck...Rich B.
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Yep; welcome and hope u find lots of info and support here, as I do...good luck to us all. Rich B.
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Sorry for the hardships u have....all I know is when I was at my wits end, didnt know what to do next...mental health counseling did help and eventually worked thru it....go for it...they are usually happy to try to help, and at least are more sympathetic than lotta doc.s...k..good luck..Rich B.
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Hi; dunno if this helps any....I ran across something called R523S vacci;ne trial some time ago...lost track of the link info, but Ill try to paste the regional contact info in here, so one could track it down by contacting one of them, I think...dunno if this is the same or different trial or vacccine...just throwing it out here case it might help someone out. It was recruiting just a few weeks ago...dunno if still..
I apologize for the delay in this response. Corixa has contacted us with the updated contact information for the lung cancer clinical trial.
Lucinda Tennant
Project Manager, Clinical Trials
New Link Genetics
515-296-3531
We wish you well and thank you for your patience.
Cancerconsultants.com
-----Original Message-----
From: Jenny Maxon
Sent: Wed 9/22/2004 12:03 PM
To:
Cc:
Subject: FW: L523S clinical trial.
We just noticed that the Jennifer Edwards contact needs to be updated for this trial. We have contacted Corixa Corporation and are awaiting their reply. We will contact you as soon as we hear from them. The first contact - Toni Oien is correct, if you happen to be in the Seattle area.
Thank you for your patience, and we apologize for this inconvenience. We will contact you with the updated contact information as soon as know.
Cancerconsultants.com
-----Original Message-----
From: Jenny Maxon
Sent: Tue 9/21/2004 10:28 AM
To:
Cc:
Subject: FW: L523S clinical trial.
Thank you for your patient inquiry. The trial is still recruiting - below is the contact information.
We wish you well and luck in participation in this promising trial.
Cancerconsultants.com
Swedish Cancer Institute
1221 Madison St., 2nd Floor , Seattle, Washington 89104
Toni Oien
206-386-2831
Cancer Centers Of Florida - Ocoee
1111 Blackwood Ave. , OCOEE, Florida 34761
Jennifer Edwards
214-370-1825
Cancer Care Northwest - Spokane North
605 E. Holland Suite 100 , SPOKANE, Washington 99218
Jennifer Edwards
214-370-1825
Tyler Cancer Center - Tyler
910 E. Houston St. Suite 100 , TYLER, Texas 75702
Jennifer Edwards
214-370-1825
Sammons Cancer Center - Mary Crowley Medical Research Center
3535 Worth Street, 3rd Floor - Collins 3rd Floor - Collins , DALLAS, Texas 75246
Jennifer Edwards
214-370-1825
A google search for R523S clinical trial might turn up the trial info too..
k...good luck Rich B.
new to board - NSCLC
in INTRODUCE YOURSELF!
Posted
Welcome Barb; Boy, my vertebrae hurt like heck, but not sure Id like to go thru what u did....guess I can live with the pain for now.
Anyway look forward to your posts, etc...Rich B.