lisaRN
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Posts posted by lisaRN
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hi becky,
i applaud md anderson.... we have been to 5 major cancer centers and not one has requested the info that you so bravely participated in....
i think it is great that they are doing that.... good too that it is voluntary b/c while we would have gladly taken the 2 hrs to fill the form.... i respect that not everyone has the endurance or ability to do so....
i dont know how happy my husband would have been if i volunteered his blood though LOL
.... no, seriously i am sure he would have given it too but like you there would have been a 1 stick rule applied....as for the word "blame", yes you are absolutely right... in my original post i did mention this....but in retrospect, perhaps my point became clearer to myself b/c of the posts here, i realized that to say "blame DID infact distract from the REAL question.... so i went back and edited my original post to try to make my point better and to try to stay focused...
thanks for the info about md anderson....wish others would follow suit....
Lisa
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Hi Kim....
Welcome!!!
Sounds like you have such a wonderful mother..... sounds like she is also lucky to have a daughter who loves and admires her so much....
i wish you and your mom all the best in fighting this disease....
this is a great place to come when you need people to talk with, compare notes, etc....
Many prayers and warm wishes
Lisa
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dear minpin,
i am so sorry to hear about your mom....my prayers are with you in such a difficult time....
i can relate to you when you say "...my mom....my best friend..."
my mom is only 55 and I 36.... around the same age as you and your mom.... but in my case it is my husband ( my other best friend) who has the cancer....
the issue of prognosis always seems to lurk around us although we have NEVER invited it..... it crossed my mind in the beginning to ask the docs.... but i was always afraid.... i guess i didnt want any answers....
i figure only God truly knows the "WHEN" question....and for now i will be grateful for ANY time we have....
of course, sometimes when i am researching the disease, new meds, new symptoms, etc... i trip accross some statistics... at first they really bothered me, seeing the #'s i mean.... but although i am sure they are based on scientific data, i remind myself that individually #'s dont fit neatly into our scenario....
as far as the internet goes there is a ton of info out there re: statistics and prognosis if you are ready for that and are actively seeking the info...just be careful to visit legitimate sites for correct info....
the National Cancer Institute site is often helpful to me:
the statistics for my husband dont look good at all.... but for me personally i am trying to stay positive and focus on the "here and now".... after all we never know.... there could be major break-throughs in lungcancer tommorrow.... i have to hold to my belief in miracles and that "it's not over 'till it's over"
Regarding your question of online support groups, i am only using this one right now.... this is really a good forum for support.... i dont know of any others off hand but you might find some if you go to the:
American Cancer Society:
http://www.cancer.org/docroot/home/index.asp
American Lung Associtation:
http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=22542
or ALCASE websites:
I hope this helps.... please feel free to pm me if you just need to vent or something.... i can even send you my email address...
I am sure others will post here soon and will probably be able to offer you more resources as well....
Many prayers and warm wishes...
Lisa
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Kris,
Extremely loud applause coming from Connecticut ...... may your efforts be rewarded....Please keep us updated as to the interview.... and perhaps you could post a link to an article or something, that would be great....
Good luck!!!!!
Lisa
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Dear Charlotte,
I am extremely saddened to hear of the turn of events.... my prayers are with you and your family....
Lisa
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thank you elaine,
no nothing you wrote was percieved in anything but a postive way.... i hear you and truly understand where you and everyone else are coming from....
your'e right... the emotional upheaval is still prominent in each of my days.... perhaps that is why i feel so passionate about this....
i would NEVER be offended by ANYONEs point of view..... and now that i am here, i doubt there is anything that anyone would ever say that would prevent me from saying what i have to say too...
i try to live by the philosophy that "We have to agree to disagree" and although it is important to have as many people as possible on the same page...... it is also vital to the same extent to have these types of discussions b/c no one side is ever completely right.... this is going to be a team effort if we will defeat this cancer on a global scale....
sometimes, as hard as it is to admit when wrong, we need to hear the other point of view.... it gives us clearer perspective.... i for one invite all sides of any issue up for discussion...
i think it is so awesome that we have this board to be able to come to the table so to speak on issues that are important to us individually.... THANK YOU to the founders of LCSC!
my updates here are not to invalidate anything anyone has written but simply an attempt to make my point clearer than originally stated...
Lisa
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Hi Elaine,
i agree with you the poll is extremely limited (it wouldn't let me add anything else
LOL ) .... and looking at it now... i wish i could figure out how to delete that part of my post....i know the poll part seems silly.... but i truly intended it to be in a light, informal way....
i think that in retrospect i realize that it TOTALLY distracted from what i intended to get accross in the first place....
the questions i am asking here were purely seeking an informal point of view....
i guess there is a part of me that will never be able to walk away from these questions.... and while i dont know what the future holds exactly... i hope to someday address this issue with people who have the power to implement change and possibly help to rid the world of the need to ask such questions....
b/c after all i agree with many of the posters here that perhaps patients and familes dont have the energy to address these questions.... i hope we can make changes from within the medical community itself, regarding funding and research abilities etc...
nothing but good intentions.....
Lisa
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I am especially saddened that so many absolutely missed the point of my post.... if you read back, i clearly stated that i accept that God has a knowledge greater than I as to the WHY question....
my family faithfully prays and believes in God and i believe that everything happens for a reason... i trust in God that HE knows why but it is gnawing at me as to HOW????
even if this is from smoking or second hand smoke what do these patients have in common that triggers the onset of this disease ?
and what do the smokers and second hand smokers who remain healthy their entire lives have in common that help them to avoid it?
i am curious to know what types of things that the cancer patients on this board have in common.
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i also firmly believe that scientists ARE asking these questions.... thank God for those who DO ask HOW???? ..... if we don't find the various HOW's of ALL types of cancer or ANY DISEASE for that matter we will never be able to perfect the meds we have or find cures for these diseases that: "OF COURSE, NOBODY DESREVES"
What disturbs me the most about the "bad luck" comment is that it seems as the the possible casues are being set aside by the medical community in general of which i too am a part ... i went to each doc prepared to answer a million questions re: possible exposures.... in reality the only question ever asked is "Did you smoke"
In asking these questions in does not automatically place blame, the intention instead is to trigger some solutions...
I am a home care nurse and Medicare requires us to answer questions on a 28 page form when admitting a new patient to our care... you should see this form.... it is crazy, it asks all kinds of questions from what illness is the REASON for admission to how many steps are at the patients front door? ..... this info is data entried by our agency and uploaded to medicare's data base....
although most home care nurses are driven crazy by the AMOUNT of the paper work..... the rationale for the need to keep track of the specific info it asks is CLEARLY UNDERSTOOD.... also it gives Medicare and JHACHO ( a regulating agency) the ability to see what our statistics are.... how many diabetic patients, how many cancer pts, how many hip fractures, etc... it also helps to answer questions about the performance of our agency.... did we make our pts better, worse or without change.... such as did that pt with the hip fracture fall and break that hip while in our care with her home health aid present....
these types of questions, although they might be annoying and time consuming are relevent and vital to set the standards and expectations of care when a nurse or an aid is coming into YOUR home to care for YOUR loved one.....
i wish that the docs in the major cancer research centers utilized a similar type of data base ( maybe not as long but with all vital questions answered ) with ALL patients not just those enrolled in studies..... yes this takes time.... but if nurses are being mandated to do it and are able to make it work.... well........
Now, i agree with every single one of you who has replied that this disease has a horrible stigma attached to it re: "being a smoker's disease" and that in and of itself ANGERs me because as we can all see, that is DEFINATELY NOT ALWAYS THE CASE....more and more people are being dx without a definitive cause..... that scares me ....
I don't understand so many comments referring to the "blame game"...
First of all, dont we see that if some scientist didn't answer these questions to diseases like measles, mumps, rubella, small pox, polio, etc... then today our children might still be adversely affected by those horrible, AVOIDABLE diseases....
If we don't answer these questions today, what is our hope for tommorrow?
how do we know that cancers are curable or not.... look how far we have come with treatments for many kinds of cancer.... breast cancer used to be significantly fatal, but today with prevention and treatment programs we can cure or at least turn it into a "chronic disease".... those patients dont have to simply accept a "death sentence"... and even with that said, i am sure we still have a long way to go so that someday hopefully ALL of these cancers will be virtually unheard of.....
AND YES, I believe there is a catalyst for EVERYTHING , and i would ABSOLUTELY look to find a cause if this were breast, pancreatic, colon, whatever.... i am sorry if anyone misunderstood why i did not mention other types of cancer previously, but this is the LCSC and i am only one person and i felt the need to stick to what i know....
Perhaps to not seek a cause is to not determine a solution.....
If you reread my post and sincerely think about what i am saying, you will hopefully see that by asking these questions i think that hopefully we can remove stigmas.... these stigmas, after all are probably part in partial what is determining funding for research and development of better drugs for lung cancer in particularly....
Finally, I just keep thinking if we had not asked what was causing my husband to cough up the blood in the first place.... we would never have known, until it was too late, that he had this disease.... Thank God we finally found a doctor who DID ask these questions, perform the appropriate tests.... and ultimately perform the bronch to remove the tumor from his airway.... if not for being able to ask those questions, we might have lost him in April.....and I thank GOD for every single additional second GOD has given us.....
Again, i apolgize if i have offended anyone or if this issue is inappropriate for this board.... clearly everyone is passionate about their own approach to cancer...
Please understand though, that ASKING QUESTIONS re: HOW or WHAT CAUSED THIS? absolutely IN NO WAY puts blame on ANY patient... to do that would never be fair or even be helpful in any way....
Warm wishes and sincere prayers for all....
Lisa
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Dear Donaf,
I am so, so sorry to hear this.... My prayers are with you in this difficult time...
Lisa
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Thanks Joe,
WOW What a story.... that is exactly what I needed to hear right now....
Lisa
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Hello,
i hope i am not offending anyone by initaiting this poll. if i do, i appologize in advance.
i don't know whether it is the nurse or the student or the desperate wife part of me that keeps looking for a possible reason or cause of this disease.
although we had a very good experience with the many docs we have sought out 2nd opinions....something they said has bothered my son and me since our 2 visits there....
my son is usually active in the question asking dept and asked the docs, how could this happen? ( my husbands type of cancer <> )
anyway, the docs answered him by saying " it is probably just bad luck "
not only did my son feel angry that from his perspective they dismissed his need to know but it prevented both of us from understanding the nature of this cancer and thier approach to finding a cure if they do not probe us for a cause....
maybe not everyone thinks about this....but i just cant understand it.... my family faithfully prays and believes in God and i believe that everything happens for a reason... i trust in God that HE knows WHY this happened ....... but what is gnawing at me is the question HOW????
even if this is from smoking or second hand smoke what do these patients have in common that triggers the onset of this disease?
and what do the smokers and second hand smokers who remain healthy their entire lives have in common that help them to avoid it?
from our onc and all the docs we have sought other opinions from as well as from my own research... i have come up with some possible environmental exposures for us....
i believe they will never find a cure that will treat all unless they can pinpoint causes....i realize that scientists are looking at genetic makeup and why some pepeople are more susceptible as well, but i still wonder about the environmental factors.....
i am curious to know what types of things that the cancer patients on this board have in common.
As for us, we are suspicious about a few possible causes.... they are the following:
1) the 2 auto body places under our apt window...we've smelled paint and breathed their dust for 6 years...throughout the years i have had a lot more headaches and was dizzy a few times....my son has been seeing a pulmonolgist for a chronic cough for the last 3 years....an i developed a cough/scratchiness a month ago that i cant shake ( i know i am getting a bit paranoid here, it happens occasionally, please excuse me)
2) second hand smoke (my husbands dad smoked when he was young)
3) Radon exposure???? not sure....but we did live in a basement apt for about 3 years when we were first married 17 years ago
4) I-95 is about 200 yards from our apt window also
5) 9/11- when 9/11 occurred, my husband was commuting to new york, everyone at the time thought about all the smoke, dust and debris they were breathing in the city and that fire burned for a very long time....
6) industrial cooking.... one md asked if he had ever cooked in a restaurant ...and yes he had.... again when we were first married... he cooked using fry-o-lators, charcoal grills etc... all known carcinogens...
i guess i could go on and on....
anyway i am, of course, asking this question INFORMALLY
i am just curious to see what everyone else has come up with...
if i didnt include what you want to say in the poll, please elaborate in a reply.....
many thanks and prayers to all....
Lisa
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as i scrolled down through all the posts i realized that everyone else had already said what i wanted to say....very hard to be original here....
but i agree,
WELCOME!
and
THANK YOU
for taking your time to be here!!!!!!
Lisa
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ahmed was the 24/7 internet guy before he got sick.....i have always done my research on the net careful to use legitimate sites for info....
since his dx, i am the one who does ALL the research, i have encourage him to read stuff for himself but he leaves it all to me.... unfortunately i have seen my brave, strong husband go from being outspoken and proactive to quiet, somewhat withdrawn
even when we go to the doctor's office....he defers all questions and comments to me....this sort of wears me out, sometimes i wish he would share some of this responsibilty with me.... can be very frustrating....
Lisa
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i am sorry to hear this paddy, my prayers are with you...
Lisa
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i am so sorry to hear this sad news.... my prayers are with you in this difficult time....
Lisa
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My husband started Iressa 3 weeks ago tommorrow.... his onc told us that he will see us on monday 9/20 to evaluate whether or not it is working..... he gave Taxotere 6 weeks and did a repeat CT to find progression of disease..... thats when he changed him to Iressa...
the thing that puzzles me is that in Florida, when we went to Mayo Clinic, the docs there said they would give Iressa about 5 months to work...they said it takes time....
i cannot find any info on Iressa's website and since the oncologists are more like artists than scientists in the sense that they each have their own goals and methods of obtaining them, it makes it extremely difficult to sort through the differrences like this.... whose right? whose wrong? i know it is really anybody's guess with these drugs and it is different for everyone....
my question is, does anyone have any experiences with how long it takes Ireesa to kick in and show whether it is controlling the disease or not?
thanks in advance for any helpful words....
Lisa
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my heart is braking for you.... i am so sorry, donaf.... my prayers are with you and your family....
Lisa
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Hi Bill,
I am as surprised as you to see how many people have been fortunate enough to avoid this symptom....
as for my husband, coughing up blood was what ultimately led us into the ER.... after his right lung collapsed and his initial diagnosis he had a bronchoscopy with a laser ablation of a mass inside his right main bronchus.... within about 3 days after the bronch the coughing up of blood ceased.....
all through radiation to the chest, he was pretty much without this complaint .... however, a few weeks after radiation finished it returned.... and with a vengence...now he not only coughs up blood, but dark reddish black and green mucous.... ( sorry if this is offensive to anyone...but i guess there isnt anything about lung cancer that isnt offensive).... much of the time he coughs up mucous so thick and "meaty" that if i didnt know better i would think that it was pieces of his tumor he was bringing up...
all sputum cultures are always negative but the productive coughing wont let up....recently it even began to have an odor....covering med onc Rx'd Levoquin x 10 days but with no relief.... and this sputum cx was also negative....
i feel for you and your wife, i am watching my husband go through this each and everyday, i just keep praying for God to give him a break from it.... it has made it difficult for him to go anywhere, b/c he gets embarrassed, ..... and it just absoultely exhausts him....everytime he has complained to the onc about it, the doc gives us the impression that there is nothing, short of another bronchoscopy, that will help it.... he has asked us to hold off on another bronch for now b/c he is afraid that the bronch could cause other problems and prevent him from tolerating any more chemo....
i hope this helps and i wish you and your all wife the best
Lisa
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Hi Beth,
My husband has not tolerated any of the chemo or radiation treatments well and it has been so difficult each time the docs suggest a new tx... he will ask me " what do you think?" and i tell him what i think i would do if it were me or what i think he should consider given his particular situation...
regarding what you said about others not getting the extra doses of chemo, i am not sure about why that is for everyone but for Ahmed, it was two fold, #1- the first two doses didn't work and # 2 he tolerated poorly...
I have seen him going through what you are describing re: the pain and fatigue....
While you have to take into consideration how you feel and listen to what your body is telling you, you also have to take into consideration the question of why the docs want to give you more of the same....is it b/c you initial doses worked and they just want to back that up for "good measure"?
when we were at Dana Farber questioning why the medical onc we had initially was stopping chemo.... Dana Farber told us that they would NEVER stop after 2 doses....that they would always back up a successful round of chemo w/ at least 2 additional doses...
that said, you do have to go back to how you tolerated it.... for my husband, i am constantly telling him to hang in there.... maybe for selfish reasons... i remind him that he has a lot to fight for especially our 14 yo and me....like i said that is selfish thinking, and it is very easy to think like that when you are not the one taking the chemo..
you have to remember that these choices are YOURS ALONE....
you WILL make the BEST decision for YOU....
prayers and good thoughts.....
Lisa
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Prayers do get answered!!!!! Congratulations and sending more prayers your way.
Lisa
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thank you so much, peggy and karen....
you guys are so awesome to help me even when on vacation....
well we met with the Yale Gamma Knife Center today b/c our radiation onc locally said they are the only center in Connecticut....
we went into the consultation prepared thanks to everyone here and extensive research on the net last night for both wbr and gamma knife...
together Ahmed and I sort of decided that since there is only one tumor right now.... why risk the side effects of wbr at this time...
we are aware that it may become neccessary later...
what we are hearing from the doctors is that say for instance he does do the wbr right now for 2 weeks worth of treatment, what if on day 15 new cells cross into the brain we have to realize that the wbr we did on days 1-14 cannot prevent the new growth...
the problem was when we got to the appt.... the docs were like high pressured sales people.... they want him to go into the study.... we kept asking if we could do gamma knife alone and they said that if we did not do the trial, then we would have to do wbr at our local hospital and then come later for a "booster shot" of the gamma knife.....
they are really pushing for him to enter the study.... now i am a strong believer in clinical trials.... and so is Ahmed but i also believe that you have to select and participate in them according to your comfort level with the treatments being offered....
in this trial, 100% of patients will receive gamma knife and 50% will be randomly selected to receive wbr additionally....
it just doesnt feel real comfortable....since they are so reluctant to treat with gamma knife alone , i feel that we need to start looking around for another gamma knife center....maybe in new york....
when we were in florida 2 weeks ago at mayo clinic, the radiation onc there mentioned this type of stereotactic procedure, she had said to call her if he ever needed it, i vaguely remember everything she talked about b/c we werent aware of this proble yet so alot of that stuff went right past me... anyway i plan to call her tommorrow morning....
our medical onc is still on vacation and totally unaware of any of this .... we have an appt with him on monday when he gets back.... i will be glad to get his opinion.... we really like him, he is straight forward and tells you like it is.... and he doesnt rush to do anything unless it is necessary... thank God we have had a pretty good experience with since we changed MD's...
we are also scheduled to go to Mary Crowley Medical Research Center/ Baylor University next wednesday 9/22/04 to meet with Dr. Nemunaitis for a consultation to see if Ahmed meets the criteria for the lung cancer vaccine (GVAX) trial...this vaccine trial was reccommended to us by Mayo Clinic.... i am praying that nothing prevents us from going....
i know we are grasping at straws.... but at this point I feel so desperate....
if we here of anything that offers true, legitimate hope (even 10% success rates) you will see us there...
thanks again everyone....absolutely everything you guys have to offer helps....
my prayers and thoughts are with all of you
Lisa
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Hi Lisa,
Lots of prayers for the best news for you....
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MJ,
thanks for the reply, i am sorry to hear that your mom went through this too.... did she have any of the other symptoms i mentioned...such as the changes in memory etc...? thanks for all the other info .... it definately helps...
Elaine,
yes it is definately squamous.... that is what is so puzzling .... at diagnosis they said this type was mostly smokers.... we saw alot of scrunched up eyebrows.... then they told us that that NSCLC was slow growing... the medical onc said she had many many patients living 15-18 yrs.... i remember thinking angrily 15-18 yrs?... now I'm praying for 15-18 months.... what happened?? thnaks for all your support elaine, all my best wishes to you....
Lisa
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Not good news.... met w/ the radiation onc today and he told us they did find a 2cm tumor in the left parietal lobe of the brain...
i pulled him aside and expressed my concerns w/o my husband... he said we dont have a choice but to treat this regardless of whether the changes we see are from the tumor or the meds.... he said that if this tumor is not treated it could cause right sided paralysis....
oh and the doc told me something i never knew.... he said most chemo doesnt cross the blood brain barrier.... so chemo and Iressa cannot prevent this!
my husband is devastated and is much more depressed.... my son and i are trying to stay positive .... after all it is only one tumor and the doc said it is pretty small and in an easy area to tx....
they made an appt for us at the Gamma Knife Center tommorrow and said he absolutely needs the Gamma Knife surgery...
he mentioned a randomized trial for Gamma Knife w/ & w/o whole brain radiation but mentioned that WBR can cause personality changes, short and long term memory loss, higher learning loss and recognition problems...
we are hoping they get this quick enough that he wont need WBR but the doc said that one reason for going into the trial and taking the WBR would be to prevent any further lesions....
does anyone have any experience with this? are the side effects occuring in all patients? does it really prevent spread?
I guess tommorrow we will learn about precisely what is next and why.
I just keep thinking that if God wanted him already He could have taken him.... I thank God for every second but I pray we don't lose him....
Thanks again for all the support....
Lisa
.... no, seriously i am sure he would have given it too but like you there would have been a 1 stick rule applied....
LOL 
Inspirational Quote?
in JUST FOR FUN
Posted