richinsdakota
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Posts posted by richinsdakota
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So sorry to hear....hang in there best ya can....hoping for the best that can be under the circumstances....take care Rich
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Yup, welcome....lots of knowledge and support here for you....to help you get thru the hard times, and all. Makes a world of difference to connect with those who have been there, can help you understand, etc. k..cya here.
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Thanx all , for your great replies here! I guess adversity brings out the best in us.
Yea, Im feeling optimistic now, tho I always stay on guard against future problems...but I may celebrate a little by goin out and buying that new van Ive been seeing on trips to Hospital. (hehe)
Hope you all get the same good news as time goes on. Rich
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Hi all; wanted to post my good news here, as well as in NSCLC, ...My CT/MRIbrain/PET scans all came out clear...no evidence of disease...big relief and feel more hopeful now, tho remaining cautious...MRI spine and Adjuvant chemo to go yet, precautionary treatments to try to make sure we get it all, hope.
2 months out from pneumonectomy, still lot of pain, but darvocet and ibuprofen take the edge off enuff to do my walks, etc. Now waiting, walking, doing appts. ,....trying to be patient with slow heal process..sigh.
But feel fairly good about these results, wish everyone could have good news....good luck to us all...more later.
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Hi all; Happy to report that my CT/MRIbrain/PET scans all came out clear...looks like N.E. D. for the moment. Breathing a little easier, if thats possible with one lung . Maybe the pneumonectomy will do the trick, (hopefully)...Remaining very cautious tho, aware of hi incidence of recurrence, hidden mets, etc. Still gotta do MRI of spine, precautionary, and adjuvant chemo, also precautionary. But feel relatively lucky so far, wish I could give you all a good news report too.
Now waiting, walking, healing, keeping med. appts.....keeping pain of surgery under control, (well, some anyway). Trying to be patient with slow healing process. More later...good luck to us all.
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Hi Wendy; well youre further out than me...had left pneumonectomy 2 months ago, but have the same pain problems as you describe. Surgeon says its not unusual to still have pain, he didnt admit Id have it for over 6mos. tho. ack.... Guess its as you say, just takes lot of patience and time before were a little more comfortable. Idont wear a bra, heh, but yea, even my shirt blowing against the nipple hurts, its so sensitive in that area. Dont know how you avoided rib removal, I had full thoracotomy, so they took one rib out too.
Im now on darvocet , a medium strenght pain med., and it just barely takes the edge off the pain so I can walk,etc...Dr. told me to supplement that with ibuprofen in between pills...said 3-4 every four hrs. is ok. Tho I know the mfgr. warns to limit to 6 perday. Dunno, doc says its ok..so...
Anyway, good luck to us...Im just waiting, walking a lot, sitting and sleeping in the chair...till I feel able to resume some likeness of normal activity and yardwork, etc...
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Hi Doc; glad to see you seeking the feelings of the patients on Dr./patient relationships. If you have seen my posts, Im a very disapointed with the relationships Ive had with surgeon...not sure yet about my Onc., just one visit so far. But it seems even my fam. doc just doesnt exhibit much sensitivity towards my plight. Pervasive attitude these days it seems...dont they teach any "bedside manner", any more?
Sounds like you strive to show sensitivity, tho, kudos for that. Maybe Im old fashioned, not having been treated mu;ch since the 50s and 60s...but just dont know how it can be justified for a physician to dispense some of the kinds of indifference and lack of sensitivity I have read posted here, and observed myself.
I asked the surgeon if the stats, (10-12 months if untreated) applied to me...he emphatically stated "probably!" Hes a man of few words...sigh
But at least he seemed to know his stuff, and didnt give me the feeling we were stumbling along in the dark, or something. I settled for the assurances that his surgical skills were good., that was the important thing, I guess. The empathy could wait for another time.
The best attitude I saw was the anesthesiologist dr....energetic, cheerful, friendly, thorough. He was a bright spot in the few days I encountered him. What a difference just a little cheerfulness made.
Im sure its tough to sort out all the considerations drs. are faced with...legal, ethical, personal relationships, etc...but I think there are a lot of them that could certainly try harder. I applaud your efforts in this area....if I could offer one thing that might help, its that just a little sensitivity, consideration goes a long way towards helping the patient feel more comfortable with the relationship.
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Oh, Elaine...also: they did a mediascopy(?) to check lymph nodes...all neg. he said. Said he wouldnt have believed it if they hadnt been biopsied, but they were all clear, I guess. Hope scan bears him out on this. K, just forgot to answer that part for you.
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Elaine...saw youre post and question...
Answer is none of the above, essentially. I was referred to a lung (thoracic?) surgeon by my local family dr. He proceeded to schedule a broncoscopy, then needle biopsy and recomended surgery. (St. Lukes Hosp., Aberdeen). If there was a tumor board or anything else, I wasnt aware of it. I was a naive first timer, never had any dealings with med. establisment, and the pathology diag. was very positive sounding, etc., so I just went with it....after much research on internet, (including this great site), which all seemed to reinforce that plan of action. I checked out RFA, but after American Cancer Soc. said they couldnt recomend, still unproven treatment,etc., I just went with the conventional treatment..surgery.
Yea, seems pretty inadequate looking back..but with limited time to make decicsions, and plenty of panic , I thought we did the best I could . Darn sure is a shame that the med. profession doesnt Have a mandatory regimen of multi-disciplinary review at diag. , 2nd opinions, etc. , but none of that was suggested or mentioned, even. I thought about seeking a 2nd, but didnt, just couldnt believe the reputable hosp. pathology could be that bad, as to be wrong.
So far, things seem to bear out that the proper treatment was accomplished, (pending scan results), but if so, it was fairly by chance, rather than by consensus of med. opinion, or anything.
Anyway, seeing Onc. now....after the fact, dont know why they didnt get him involved before the fact, or maybe they consulted and didnt bother to mention it to me...dunno. Getting scan results tomorrow, ...hoping I dont get reclassified, but...well, Ill try to post with results soon...k...cya then.
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Interesting Kaffie; Yea, surgeons...drs in general aint what they used to be..sigh. Mine never bothered to get into any such matters, or any other useful info. Had to drag a few major concerns out of him..including my pathology, which he briefly brushed over on a chalkboard. Seems my tumor was in upper lung, but up against blood vessel to lower lobe, hence entire lung had to go. As long as lung didnt leak or collapse, and incision wasnt infected...all he cared about. At the same time, he apparently convinced my family that I was "cured", and he "got it all out". sheesh
Additionally; the oncologist has me undergoing scans, CT/MRI/Pet, to look for any metasteses, ...Im wondering , if there are other tumors,...why did I undergo major surgery? Shouldnt we have looked before we leaped, so to speak? Guess surgeons just arent concerned whether these factors might make surgery a useless excercise. Hoping scans are clear, and still on good track, but just frustrating that we didnt make sure before surgery.
Anyway, get scan results tomorrow, will try to post results, ...for better or worse...
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Yep, congrats...and hey, ya gotta do what ya gotta do to take care of yourself and hubby. If that dont leave much free time , so be it. Im sure folks are just glad to hear update , but only when you can...k, take care and best of luck.
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Yea, the cox2 inhibitors are hard on the stomach, they give me nausea also. I take nexium to protect the stomach, but then have diahrea problems..sheesh...wonder where the trail of side effects ends, if ever.
Dont know if the Bextra or celebrex could prevent tumor growth, I was getting pretty low dose for arthritis pain. (200 mg). I understand it is given in hi doses, 800 mg sometimes, when used as chemo enhancer. Can only imagine the stomach nausea in those of us who dont tolerate it well., but, oh well, maybe nexium will help. I ll try to get answers to this next week from onc.
Till then, take care and yes, you did help me learn something, seems every bit of knowledge we post here helps someone in some way, or reinforces or supports someones feeling about things, etc.
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Thx Kaf...thats a very good informative site...thx for posting that link.
Yes, I too have, (or hopefully, HAD) Adenocarcinoma....think our only diff. is in size of tumor. Mine was T2 size, but still NO,MO pending outcome of scans Im now doing. Hoping they are clear, or its a whole nother classification if theres anything lights up on the scans.
If I start a round of chemo, as onc. recommends, Im gonna ask him about adding Celebrex or Bextra as an enhancement, since I suffer from osteoarthritis as well. Two birds with one stone, hopefully. (I sure hope my back pain hasnt been misdiagnosed, and turns out to really be bone met. Bone scan was normal, they say, but Im still suspicious.) I took some Bextra for surgery pain, and it seemed to work pretty well for pain, as well as not seeming to cause any stomach probs. Course, the health plan wont cover for pain management, maybe for chemo, if prescribed, dunno. But I had no idea Bextra was a cox2 inhibitor at the time, so this link helped me to learn that fact. Recent revelations about Vioxx are scary, hi doses linked to heart failure, etc.
Anyway, thx again and take care....wishing us all luck.
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Hi Kaf...saw ur post here...Im about in same boat, stage one, t2,mo,etc. left lung removed. Saw the onc. couple weeks ago, (Im about 8 weeks out from surgery now), he recomends scans, (CT,MRI brain,PET), and one round of chemo as a preventative measure. Sounds like they are just starting to do chemo with early stage patients, since clinical trials recently showed a beneficial increase in survival rates. I think this is quite new , and might be food for thought for all who have recently ended their treatment with surgery only. Id call the onc., see what they recomend, I think. (By the way, Onc. said he starts chemo no sooner than 6 wks out from surgery, dunno how long after that they might be inclined to still give it.) I will be starting mine (chem) within next couple weeks, I think....I wouldnt think a couple or few months woulld make a great difference, I put it off for a few weeks, just to get myself back together for a bit..hehe...ok, hope this helps.
I applaud your plan to pick the brains of two different Onc.s, ....very smart of you. I havent got a 2nd opinion, but will if I dont think Im getting the prudent plan of action from this one. Good luck....
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Hi and welcome, ....Yes, Im just recovering from surgery, left lung removed, so I know how you feel....its important that your Dr. controls your pain enuff, (with medications), that you can breathe and become more active, like walking and things. They had me taking short walks on the 3rd day after surgery, I think. Yes, its going to be painful to cough for awhile, but you have to clear your lungs by coughing. They gave me regular respiratory treatments, (breathing a vapor from a facemask) to help, are you getting that? Later, at home...I use an inhaler, albuterol...to help clear the lungs easier. The pain slowly eases a bit after some weeks, but just gotta hug a pillow or somethin when coughing for some time. Im about 8 weeks out from surgery, and the coughing is way down for a few weeks now, and not nearly so painful, hardly feel it much now.
Just hang in there, takes a lot of patience...recovery is sooo slow. Im still sleeping in my recliner chair....not ready to lie down yet, tho I think I could. The trick is to prop yourself up at 45% a;ngle, ...or enuff that youre prevented from rolling onto your painful side in sleep, I think. If you know you wont roll onto it in your sleep, give s you the confidence to sleep, I think.
K...hope this helps some....good luck to ya
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Welcome James...you found a great place for support and info. Sorry to hear of your Moms diagnosis, but this group is very good place to help you deal with what you now need to deal with and learn about, etc..
Look forward to what you can find out....cya then.
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Hi Deb, welcome....sorry to hear of your Moms diag....but you found the right place to help you deal with it. Helped me deal with the shock and fear when diagnosed. Great folks here.
Yea, surgeons....from the sound of it, might be the same one I had, or maybe mine was a little less callous, but not much. Seems medical schools must not teach the "bedside manner" skill to drs. anymore...all they know is how to do surgery and bill you , of course. They may be good at surger;y, (we have to trust, anyway), but theyre so d...mn inpersonal and unfeeling . Maybe they have to be..dunno.
Mine did that too.. said the stats of survival I asked about, (10-12 months without treatment in my case), were "about right, probably.", then had little more to offer. Then after whole lung removed, he.told my family I was "as cured as anybody"..."we got it all"...etc. Had my family convinced the problem was solved. Well, ...not quite.
Im more skeptical than to believe that, so never bought it...knew I wanted to scan to detect any other probs., ...but my family did, and went back home believing all was hunky-dorry in fantasyland. P....ses me off, to say the least, now Im having to remind them the battle is just beginning, not over with , with removal of the primary tumor. Whether its a short or long battle depends on what we find in the CT,MRI,and PET scans. Also may do one precautionary round of chemo.
So...important to find an oncologist who not only is good, but with whom you can communicate and feel youre getting the attention and knowledge and understanding of the problem that you deserve and need.
And yes, 2nd opinions are valuable, especially if you dont fully understand, or trust youre getting the right kind of treatment, etc.
Good luck to you both ....
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Yep, I agree with the supportive posts above...Im just recovering from surgery, (left lung removed), but even at time of diagnosis I realized that my life would never be the same again. No more peace of mind about my health, no more "fat, dumb, and healthy", so to speak...and I know I have to accept that cold hard fact, and move on and do the best I can with what I have left of my health, and body.
Its tough, you bet, ...to know how drastically your life has permanently changed, but theres just no way around it. So accept that you have to go on, work your way thru it...and of course allow yourself your feelings, ...a good cry when ya gotta...seek help and support when you need it....then pick up and work on the tasks at hand, be it the next treatment, or vacuuming the rug.
I guess its a little like a loss of innocence must be for a young child...but if dealt with and worked thru...can eventually bring you to a reasonably comfortable place, with a new maturity and knowledge about life.
Good luck as you work thru it all.
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Anyone else have to beg and fight to get the surgeon to write an adequate amount of pain meds after surgery? Im about 5 wks out now, but still have lot of pain, which inhibits my activity (walking) at times, as well as being a real drag, hurting all day. Dr. only writes from 3=5 days worth of meds, so I gotta keep callin and beggin..sheesh. I can understand their reluctance to give too much habit forming stuff, but aint there some other things they could let me have that might fill the gaps between delays and misunderstandings and miscommunication with pharmacies, insurance,etc.?? (Last week, the RN said she simply "forgot" ! )
Long distance bills notwithstanding, I cant understand their unresponsiveness, as tho they dont believe I have pain, or something. Dunno, maybe its just like everything else these days..once the bills are sent out out, hey, were busy and would really like to put you behind us, please. sheesh In pain tonite, skimping on pills cause dont have enuff to last till next weeks appt.
I dunno...whether its a policy issue, or incompetence issue. I feel like the dismissed aerospace worker, begging the neighbor for a sandwich...sometimes.
Anyone have to resort to over the counter meds for pain during their recovery? If so, whats the good stuff that I should look for? Sorry to have to ask about things that should be taken care of ...but... I thot medical science had advanced a little since civil war soldiers had to bite on a miniball bullet. Little frustrated with it all, as u may have guessed from my tone here. Anyway, thx...just fishin for relief that I can manage myself, I guess.
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Hi Matt; as u can see by now, no need to be afraid to jump in here....great folks and support who welcome all of us unfortunate enuff to need support, it seems...so , welcome.
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Sorry to hear of further problems...Hope treatment works out and makes him more comfortable too. Im sure its all very difficult for anyone going thru these things. Take care and hang in there...Rich
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Haaa..yea, my anesthesiologist says they use a amnesia inducing drug for the anesthesia, so I cant remember a lot of stuff my family told me about later, after surgery...also, my timeline was all messed up for the entire week in hosp....things that happened the 1st day, I thot happened the 3rd day, or last day, etc...weird gas.
::(I musta been a real basket case....surgeon called in the shrinks....I think to calm HIS nerves...hehehe_)
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Yea, always seems to be unknown side effects popping up with lotta these new drugs...Probably rushed into approval too fast, dunno.
Dont know if this helps any, but Dr. started me on Vioxx few yrs. ago for Degenerative joint pain (arthritis{...when I found out it was expensive, he gave me Naproxen, not sure of the dose, but it gave me a stomach ulcer, which I spent 18 months and a ton of money getting scanned and healed up finally. I stopped taking any NSAIDS at the time of the ulcer...but now after my pneumonectomy, Ive discovered that Nexium protects the stomach wonderfully, so can tolerate the Celebrex again. So far so good. Dont know if it would help with an allergy to sulfa tho...might ask Dr.? I know it eliminates stomach problems caused by heavy pain meds, ..Hydroc, etc...and others, ...hope we dont discover hidden side effect in Nexium next...sigh...Anyways...Good Luck to ya.
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Thanx to all again for the support and encouragement. You reminded me of a lot of quitting methods, ideas, tricks that I had forgotten about. And the motivation, of course. Gonna keep tryin...(put the cigs in the basement, use delay tactics,(like my Dr. does when I ask for pain meds), and find some other way to reward myself. That means a lot of ice cream, but need to gain back the weight anyway.
I guess the knowledge that the next cig wont necessarily give me cancer again is the excuse I use to nibble a few. But I also know that it COULD, and dunno why that dont scare me enuff to quit playing russian roulette. Oh, well....dont change lifetime habits overnite, Ill just keep tryin, slippin, tryin again...but thanx again for your reponses, they are great to refer back to, if I forget some things.
Hmmm..just occurred to me we might cure some 80% of L. cancers, if we had a cure for smoking. (Of course we do, inside of us, I guess.)
Totally confused
in NSCLC GROUP
Posted
Kaf;...I had those same redoubts when the onc. ordered all tthe scans AFTER my surgery. I asked "why not before, to see if the surgery is curative or only partial treatment>? It seems surgeons are very narrow-focused on the primary tumor...dont bother to investigate anything beyond that, seems to me. Additionally; there may be a good reason why my bronchoscopy was inconclusive, necessitating a needle biop.; the path report reads "right lung washings cytology examined"...my tumor was in left lung...sigh...if there were left lung washings, there was no report given to me with the others. sigh....Im probly lucky they removed the correct one! Fortunately, my scans were clear, just by luck, but I could easily have been in the same situation. Still could be as I have one MRI to go yet. My surgeon never suggested any further investigation before surgery either...sounds like their all similar, or most anyway, huh?
But dont jump to conclusions yet, get it investigated , by all means, but you cant assume its cancer for sure. Could be lots of other things as folks on here have mentioned in posts...cysts, benign growths, etc. Heres hoping its nothing....but do get those scans, and be sure by biopsy before the next move, if necessary.
I think people would all do well, ..tho there is no medical protocol in place to ensure it, to not allow a surgery to be done until AFTER seeing an Onc. and getting a thorough body investigation to get the overall picture, now that we know about these events...(sigh, ..Drs. aint what they used to be.)
Anyhow, try to relax, it might be nothing...hopfully...Im sure youll get lots of info and support to follow here...