Jump to content

Elaine

Members
 View Profile  See their activity

  • Posts

    2,635

  • Joined

  • Last visited

 Content Type 

Posts posted by Elaine

    Carboplatin/VP-16....NSCLC or small cell?

    in GENERAL

    Posted

    Nina

    It seems you have a more rare type of cancer--being it has clear cell characteristics, which means that your cancer differs from most of those on the board. That may well be why your treatment differed. I don't know, but I am imagining that is the case.

    I know the what if question must be hard to deal with, but I guess you have to so make the best of it--and cry when you need to. It helps.

    You have a great chance of beating the odds!

    love and fortitude

    elaine

    Question about Tarceva/Iressa

    in GENERAL

    Posted

    An article Rich just posted claims chemically that there is little if any difference between the two drugs. However, it seems people on the board have been told that they differe enough so that if one doesn't work the other might. I wonder which is the case?

    Secondly, if Tarceva is approved, will it drive down the price of Iressa and Tarceva, which would be a good thing, I would think.

    Is there really a need, besides an economic need on the part of those of us who have to pay for medicines, including the govt and ins companies, to spend all that money on developing a drug that is basically the same as another drug? It seems to me that there would be a better way to make a drug less costly than to spend money developing a copycat--?

    elaine

    test results

    in MEMBER UPDATES

    Posted

    Lisa

    We "talked" last night but I did want you to know that I am thinking of you. I hope you get additional answers in a timely manner next week, so that you can move forward. It probably feels like you are standing still, now. I pray it's really nothing to worry about, after all.

    love and fortitude

    elaine

    Looking for thoughts on receiving diagnosis

    in NSCLC GROUP

    Posted

    Well. you have asked the million dollar question. I think in the specific situation that you describe that you might want to ask the daughters what they think you should do about telling the wife and/or the survivor, explaining the possible consequences of not telling them as well as the benefits. They are apt to know their parents better than anyone--. Ask who they think the information would best come from--a family member or you.

    Generally speaking, I dont think you should give statistics, unless asked to do so, but you know that even when someone asks, their response is apt to be one of visibly being crushed. Also, I wonder if Drs know that some people may not show how crushed they are and thus don't offer emotional or medication help for the anxiety.

    However, at stage IV I DO believe you should tell the patient that the disease, with what there is to offer as far as treatment, is NOT curable. After which, I would just wait for questions as statisical data on "time left"--etc. Stage IIIB--not sure, except to do what you did and talk about treatment and that it sometimes works for some time. Then wait and see if questions are asked.

    One thing I would not do is mention smoking as the blame. As a matter of fact, I would actually tell them that it might be or is probable that smoking alone did not cause their cancer. That it might well be a host of variables that collided. My Drs, over and over, to the point I wanted to run out of the various rooms I was in, mentioned smoking as the reason I was in my "predictament." I said nothing, mostly because I was in a state of numbness and self-blame to begin with. The word "predicament" seems a poor choice and putting the pronoun "your" in front of it was even more humiliating. Of course, I doubt they realized they were speaking to a college writing instructor, lol. Semantics!

    I really think that because of the stigma with LC that the Drs need to address the blame thing more than with other cancers. I think it should be a part of EVERY initial consult with LC patients. How that is done of course would be up to the Dr to figure out--I just gave a possible way to do it. Remaining silent about smoking to a smoker is not going to be beneficial, in my opinion.

    Regardless of what you do or do not say, I think the most important thing is to treat the person as a person and acknowledge their humanity in whatever way you personally have found to be able to do so. I know HMOs and the like may have put added pressure on Drs. time, but spending a few minutes talking to the survivor, would seem to be the human thing to do.

    I am glad you are feeling free to ask us questions and I know that you seem like a person who will consider the responses with thoughfulness and with seriousness. Your openess to learning is so refreshing!

    I also have been thinking a lot about what a Dr shoud say about chemo. I read a recent survey that said that someting like 80 per cent of oncs say they would refuse chemo if they had certain cancers or DXES.. Sure, in the abstract the number is surely higher than it might be in the reality of DX, but I wonder if oncologists ought not make it clear the purpose of the chemo ie. curative, life extension (if so, how long as opposed to the time lost being sick from it) etc.

    Lastly, phrases that needs to be purged, lol, are "the patient failed", or especially, "you failed" this or that treatment. The patient DID NOT fail. The treatment did. Human knowledge failed. Our understanding of the complexities of life and death and times in between have failed us all, and in the case of cancer, the complexities have failed us thus far, but there is always HOPE!

    Thanks for joining and for making us feel useful, too!

    elaine

    P.S. There's another term that seems hopelessly tasteless. I think it's called "salvage" care or something like that. I guess there is the thought that Drs need to be able to somehow not become too emotionally attached?, but salvage and junk yards are too closely associated.

    Is this a seizure?

    in GENERAL

    Posted

    Thanks

    I guess if it happens again, I am going to pay close attention to it and establish for sure if I am able to stop it voluntarily. The other "comforting" thought I have is if this is a seizure why would both of the occurences happen while my hand was on a mouse? And what is the chances that my particular brain lesion would effect my right hand and only at a time I was using a mouse. Why not when I am typing or washing dishes or watching a movie?

    I thought my husband was coming home today but not until Tuesday! I don't think telling him of this while he has to work on a ship loader is going to be conducive to his safety or health--thousands of miles away.

    So I thank the Lord for all of you, regardless of the cause!

    elaine

    Dyspnea: I feel so stupid

    in GENERAL

    Posted

    I thought dyspnea and SOB were the same thing. Apparently they are not--and SOB is a subset of dyspnea.

    Anyway, about 4 months prior to DX I began to notice an uncomfortable sense while breathing--like I was involuntarily holding my breath is the only way I can describe it and it was uncomfortable, slighly. It also seemed like muscle discomfort in my back and I couldn't tell if one thing was the same as the other or one was causing the other. Massage seemed to alleviate the discomfort and distraction seemed to make me not notice the discomfort. It's confusing. Anyway, I was in a stressful situation so I thought maybe I was having some kind of mild panic episodes.

    Here's the really stupid part-even after DX, I did not think that these sensations were dyspnea--I only reported having SOB on exertion. Not dyspnea at rest. Now that this uncomfortable breathing is more and more noticeable and non-stop I just assumed I was set in some kind low level panic mode.

    So now I don't know what if anything I can do about this uncomfortable breathing.

    Anyone have this symptom and know what can help?

    I was told the last check about a month ago that I didn't need oxygen unless I wanted it--whatever that means.

    elaine

    Is this a seizure?

    in GENERAL

    Posted

    I bet there's really no way to tell without an MRI. I sure don't want to do one of those alone. The darker it gets outside, the more sure I am that something is going on.

    I have been convinced this strange feeling in my head that seems worse in the morning if I sleep on that side, is Iintracranial pressure, and but clinically I was told blah blah blah.... and to wait to see if symptoms progress before "over reacting"-- I don't know if it is my HMO or what, but that seems crazy to me since I did make it clear I want any brain or spinal mets treated and of course any mets that cause pain.

    I Hate being in the middle of nowhere!

    elaine

    Update on Dad and question.

    in CAREGIVER RESOURCE CENTER

    Posted

    Amy

    I guess there's not enough information in your posts for me to answer any questions. Pain where? etc. He must have NSCLC or else probably no surgery. Does he have evidence of cancer outside of lung? I don't know really what to say except I pray things go well for him.

    Morphine can also be given to help with breathing, but I dob't know if that is your dad's case or not.

    You can find out information and then put a profile at the bottom of your posts.

    There is a lot of posts about surgery to remove a lung or lobes on here so you might want to do a search --at the top of the page there is search function or browse around.

    love and fortitude

    elaine

    Is this a seizure?

    in GENERAL

    Posted

    Thanks to all! I did think of carpal tunnel and I sure hope that is what it is. I know that carpal tunnel doesn't involve part of the ring finger and the little finger, but since the twitching only lasted 30 sec and both times I wasn't even worrying about it, I have no idea if the little finger was doing anything or not.

    However, the tingling/numbness thing that goes on is definately the whole hand and that as far as I am concerned is the HPOA--it is in both hands but more pronounced in the right mousey one!

    I do a lot of writing not just on the board and I have been known to play a few hands of pinocle a day :shock: My last job for two years was as a journalist and I was on the computer up to 20 hours a day then too.

    Thanks Ry for sharing your experiences with witnessing seizures. That helped!

    elaine

    Update on Bob

    in GENERAL

    Posted

    Nell,

    It may not be the best medical situation--since a team would be better. But as a patient, one thing I thing IS important and that is that Bob feel comfortable being around his Doctor and being able to communicate; moreover, to feel important to the Dr. In that respect, Bob is certainly in good hands.

    Sending love and fortitude

    elaine

    SEARCHING

    in NSCLC GROUP

    Posted

    Lisa

    A couple of things that I did not make clear:

    First, I applaud your curiosity and committment to looking to the future. Those of us with the disease truly are counting on you and others like you to push ahead. We need you long term even as we know that you, too, are going through an emotional upheaval.

    So I hope nothing I wrote or anyone else wrote will in any way stop you on your quest for answers and a better tomorrow!!

    love

    elaine

    SEARCHING

    in NSCLC GROUP

    Posted

    Lisa

    I think I addressed your wanting to know causes in my initial post. But again, I do not think that environmental causes alone are going to be the answer. Thus, I think the poll is too limited. And then there would have to be all the cross references etc to truly have something more to go on than the fact that smoking is a big factor, something we all know. Nutrition, family history, supplements, vitamins, medical history and on and on. Even the new studies on genetic inclination shows that even in the absence of the genetic marker, many get lc.

    I wholeheartedly agree that finding the causeS will help lead to a cure, better treatments, earlier DX, better education of at-risk people etc. etc.

    I am all for looking for causes. But I truly believe that it won't stop cancer from occuring. One hundred years ago, the life expectency in the US was 47--now it is in the 70s, I think. Cancer rates were lower then--and it is obvious as to why. Aging is one cause of cancer.

    It is true that smoking gets all the blame and when a patient says he or she doesn't smoke, from what I hear on this board, the Drs faces often twist and the eyebrows raise.

    It must be easier for some Drs. just to right it off and go on their way. I have never told the story of how I was treated at DX. It haunts me. I can't be the only person with that kind of horror story, so I think that "we" often think that as soon as someone mentions smoking or family members who smoked, "we" hear blame--because that is what so many of us have received.

    Try as I may, I have tried to forgive myself and it has helped learning that it is more than likely a combination of things--resulting in a train wreck in my lungs, one of which is bad luck.

    elaine

    Update on hubby

    in NSCLC GROUP

    Posted

    Charlotte

    I am so sad for you and your boys. Ginny has given you some good advice. There are good hospices and not so good, and from what I understand, you have to be pretty proactive to get what you need sometimes as far as man.woman hours for direct care and social work. Mostly because they are not funded adequately by Medicare nor HMOs.

    I wish you strength and peace through a difficult time. You all remain in my thoughts/

    love and fortitude

    elaine

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.

  I accept