BoBennett
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Posts posted by BoBennett
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I find it unbelievable and disappointing that on a lung cancer posting board people will actually defend smoking and talk as if it may not be the cause of LC or ill health. On the off chance that it is the contributing factor that has been shown and accepted by most wouldn’t it be prudent to leave this talk for a more appropriate setting. This does a great disservice to those who are newly diagnosed and are looking for ways to better their health, their lungs and lung cancer prognosis. Justifying this habit/addiction aids a newly diagnosed person comfort that they in fact can not stop. Millions of people do stop smoking regardless of habit/addiction or if, when, because they get LC.
A section titled “The smoking issue” could be added so the newcomers can understand and balance the information.
Hebbie, I thought your post was informative, although ruined, and in the realm of what should be happening on this board, legitimate questions looking for legitimate solution. Unfortunately the only solution I see would obviously hurt the little smoking neighbors feelings. Sometimes the truth has to be told in order to solve a problem and their isn’t a way to sugarcoat it. Smokers stink and IMO put an unhealthy odor in the air.
Bo
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Thanks everyone for the feedback.
Does not sound like a lot of bad or long term problems. Funny when I was on carboplatin I was pumped till late the first night. Now on taxol, when they give it to me at the clinic my tounge gets all thick and I get all loopy but am not wired.
Peggy when I gathered some chest X-rays I noticed I had a tumor in my left lung as well as the one in my right. It wasn't untill I got home that I understood they are mirrored and all the little spots were arrows. Probably shouldn't have read them at all, much less at 75 MPH. Hope your as bad at reading stuff as I. Good luck on Friday
Bo
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I’ve noticed time to rime negative thoughts on the steroids given, I’m assuming they are for pretreatment for chemo, I’ve never thought to ask my Onc. I have a little understanding that steroids are not necessarily a good thing. Anyone have any thoughts on this.
` Bo
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Thanks Teresa
Bo
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Thanks, Teresa and Joe for the responses. Yes it is Stage 4. Originally it was diagnosed, probable mediastinal involvement, as well as the bone mets. The mediastinal area was downgraded in August, the bone mets healed and then in early November a Cat Scan showed a specific subcarinal node problem as well as a slight increase in tumor size.
. Is this meaning surgery is not a good option?If you find an oncologist who thinks surgically removing your lung tumor is a good idea, I'd keep lookingNo I haven’t had radiation, the Oncs thought is, its out of the lung and too late for anything else except chemo. He says surgery is not an option. I understand that thought. I just like a little conformation that chemo is the best and only option, since that is all I’m getting. I had a comparitive PET in august and there is no indication of cancer anywhere else.
Thanks for your input
Bo
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I’ve read on several occasions that its not the primary lung tumor that causes the demise it’s the mets. Are there cases where the mets leave and then the primary grows, then the primary ultimately causes death. My primary is causing absolutely no problems.
In my case the bone mets “healed” and the primary increased by 19%, 3.7/4.5. Along with a new infected subcarinal node. I’m wondering if I need to look at an Onc that thinks surgery my have some benefit. I’m in excellent health and my lung are in exceptional shape. I’m worried that ongoing chemo might not be the best choice.
Any thoughts on this.
Thank you
Bo
I think this is great that you professionals would take your time out to advise, its uncharacteristic and refreshing.
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kyle jean,
My PM messages doesn’t appear to be being sent. Not sure why. I’m working on it.
Bo
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Hey Dave,
Prior to my diagnosis I was also having memory loss, more so I just wasn’t tracking in a normal mental way. I believe it had something to do with the cance. I have read that the cancer can cause this. I don’t know if the average person has this problem though.
Good luck in your wife’s fight.
Bo
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Hey Amy,
This is what the NCI says, my experience has been that when many people use the word remission they mean, somewhat cured. I have heard the Oncs and nurses use it for partial stable and complete yet never qualifying the word, just using it.
[u]remission A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.[/u]
Good luck with your mothers fight
Bo
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ELLAKC2,
I accept the apology you PM’d me for your personal rude remarks at my post.
With all the humility I can muster.
Thanks for reminding me that my planet is reality and how to spell chemo.
Bo
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Hey Kyle,
If your looking for positive statistics this is the place. Most folks here don’t fit the mainstream statistics, meaning the statistics in the mainstream are statistically wrong. I don’t know if lung cancer is responsive to chemo, but some seem to do well on it some seem to do well not having it. Everyone seems to have a different thought on what to do to beat the disease. Since your looking for options I would suggest trying to boost your bodies overall health. I don’t know if a healthy body will beat the disease, but a healthy body can put up a better fight. Also learn as much as you can, it gives you some control. This is a good place to get information.
Two years didn’t work for this guy either. http://morris.lcsdg.com/SurvivorStories ... ate%20.htm
Good luck in your fight.
Bo
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Hey Cheryl,
BeckyCW passed this on to me, it’s the last word on Stats http://cancerguide.org/median_not_msg.html.
You will find a lot of stuff to read and sometimes its hard to wade through but every once in while you will find something that makes a difference.
Don’t let the crying get you down, I’m a big tough dude and right after my wife watched be crying in the Bathtub I did my exercise work out. The devastation I felt with the cry is relative to the laughter I get today, cause I feel healthy. Don’t let the stats or anyone else get in the way of your fight.
Keep in touch with this site, it’s the best around.
Bo
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Hey Debbie,
Hang into this site it is by bar the best out here, you will get a lot of information and support here. You are at the worst time in this ordeal, for lack of better phrasing it gets easier to deal with from here on out..
Like Beth said “no two people are the same and everyone responds and reacts differently to treatment“ (Everyone responds differently to suggestions has well.) ”Take your time digesting everything”
Not knowing your brother no one can be specific in how to approach him. I will say the burden is all a hard on you.
If you need questions answered, and you will, ask . Knowledge is helpful in control and we all need a little on that.
Most folks here will echo that they never get enough info from the Doctors, start getting your reports, from the doctor, test and procedures. It makes decision making for future stuff far easier.
The one single thing I learned and had the greatest importance for me is what Frank said, “You will be amazed at the number of survivors here that are fighting and making a mockery of the statistics and prognosis's”. The reality of what is happening is not what the mainstream puts out.
Bo
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BeckyCW,
That is the most helpful article I read. I was actually lucky enough to run across it in the beginning and it, as with many things, was pivotal in my “recovery”. Three words, made and enormous difference, I had time to think, plan and fight.
Cindi o’h
I think this stuff is really interesting. The positive attitude thing is elusive for many and is hard to muster up if it is not natural. Although I never considered myself a negative thinker I did always look at the bad side, this help me prepare for the worst, inevitably that creates a less than positive outlook. A cancer diagnosis has a lot to be negative about and since “fate” “even guided “fate” determines the outcome, positive thought/attitude can guide that fate in a better direction.
I think every clinic and every hospital should have liaison to talk with patients about dealing with the emotional consequences of a cancer diagnosis.
I need to nap after all this thinking
Bo
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I totally agree. I heard people at the beginning talk about a positive attitude. I had no idea how to get ir and feeling the way I did I thought it was over. My wife on the other hand thought, OK now our life is to get me better and I actually felt guilty that I didn’t have a good attitude. Her support is what led me to a positive attitude. I have come to feel that everyone needs to find a reason to go on, whatever that may be, positive attitude will inevitably follow. Then everything else follows, and that includes better days. It can’t help but happen that way.
45 years of friendship is the best reason I’ve heard for a positive attitude. I hope things go well for you.
Bo
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Intermittently I have had discomfort or a weird feeling right in the middle of my chest I believe that signifies the problems in my bronchial area, but no real pain. It sounds as if you are describing real pain and your description sounds symmetrical, talking in plural of the chest area.
I had a bone met in my left humerous and I had pain radiate all around my left shoulder/back/underarm down my forearm and into my hand, though none to the chest. As for describing constant. Unrelenting misery and extremely pronounce at rest. I.e. constant. I have no idea if that pain was helped created by the tumor in the right lung but.
As for phlegm until recently I coughed up constantly but never considered it a problem and my onc has never commented on it.
You stated you had a chest x ray, although indicative, chest X rays are woefully inaccurate and the internet for self diagnosis, though helpful, shouldn’t be relied on.
Hope it turns out well
Bo
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there doesn't seem to be anyone looking at these people and trying to work out WHY they are living longer than the statistical average. What is special about them? What are they doing that is different from the people who are not living so long?
Until someone takes a good look at these long term survivors, rather than just congratulating them on their good outcomes and considering them a 'statistical abberation', I fear that the statistical average is not going to improve much!
Exactly
I believe that all of these things have contributed to her current state of well-being, but do you think that any of her doctors are interested in ANY of the non-traditional things that she is doing??
Exactly
Personaly I would rather they look at the reasons some survive longer than others than come up with a new chemo. but thats just me.
Bo
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Thanks all for the responses,
Yea Ry what has me perplexed is all these people outliving the stats and the only place you can find that fact is on groups like these, not from the medical establishment. ALL the folks I personally know, believe in the stats because they come from the mainstream, , ( most end up not believing in them but for some its overwhelming) I accepted them, to a point as well, funny how when the pain went away those thoughts did as well. The supplemental folks are all to eager to give good stats, so that is hard to rely on. I’ve been told don’t believe all that you read by nurses and doctors yet if you ask them too many questions they soon disappear.
I wasn’t trying to come off like I am feeling negative, I think things are far better than the important people say they are and it certainly would be good to have updated studies and stats as its always nice to have what you see corroborated by the establishment. The upside is I get pi**ed enough that it helps me in the fight.
Bo
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I still consider myself new with this cancer business and am still learning to understand what is happening. I’m curious as to how others view it. So if y’all don’t mind I will ramble a bit with my question. At the period of my diagnosis the only information I could find on survival, in the mainstream area, was there was a very limited survival time with stage IV LC. That is still all I can find, yet just by looking at this posting board there seems to be many who are years into this and still seem to be doing well. I find it disturbing that the medical community has us all statistically dead and doesn’t speak about those who are past their statistical end, of whom there seems to be many.
I am interested to know if there are many advance stage folks who are feeling like they have no disease at all, i.e., symptom free. Personally I went from at the edge to feeling healthy and symptom free, even though, all things considered, the lung area is slightly advancing. Though I am thankful to feel good I'm certainly not understanding what is taking place. I’m not seeing any correlation to survival and habits at least on the positing boards. Most of the folks I know , and have known, with LC are in rough shape. I don’t get that feel on the posting boards.
Reviewing the posts, I saw one where the thought that extended chemo was not necessarily a beneficial thing. I have seen this before and it agrees with my understating of treatment. It makes me want to bag the chemo.
Anyway I’m beginning to feel somewhat complacent, not a good thing for me, kind of like waiting for the oncoming train to appear from that light at the end of the tunnel. I prefer to charge straightaway at the train.
Thanks for listening.
Bo
Nina, I know what you mean. Happy birthday.
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Ono doc,
I’d like to join in on this Q. Does coughing up blood indicate anything in particular. I’m only told its goes with lung cancer. I have intermittently coughed up a very minimal amount, then about two months ago the amount increased substantially for a week or so, then went away completely. I have this wantful vision that the tumor is a solid thing, but my intellect tells me it must be a cancerous canker thing. Would the blood more indicate the bronchial area or the lung. Also my monocyte numbers seem to increase as does the blood amount. No other symptoms. Lots of questions but basically, does the coughing up blood indicate tumor activity.
Thanks
Bo
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Thanks everyone for your responses.
I am slowly losing it in different places and its growing back at a slower rate. It is subtle right now but by the responses I have gotten I think that if I’m lucky it will only be subtle, if not the eyebrows will go too, I guess. As long as the medicine works on the cancer it can have my hair. Hah I took it first.
Bo
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Bill,
I can definitely appreciate your search for info and answers. I did not nor have symptoms from the lung or bronchial area and all my pain was from the bone mets that’s why I have such an interest in Zometa. Following a PET and plane old X-ray showing the disappearing of the cancer and new bone growth my Onc just didn’t seem very interested. I thought it was a miracle. It sounds like your wife is still in Pian from the Mets. I’ve talked to more than one person with spine mets who have also “healed”. I don’t know if it’s a matter of time in treatment or like most other stuff with cancer one works for one and not for another. I believe answers are out there we just have to be persistent. I also believe the doctors don’t have a good handle on things because they don’t deal with personal issues its on a mass basis. I wish I had information that would help.
Bo
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Interesting question. I have blood weekly CBC reports and monthly metabolic so its hard to be definitive on calcium or phosphates trends. There is a slight correlation with calcium being flagged low after a Zometa treatment. . I know there is a connection to bone cancer and calcium levels in blood, I think its hypo or hyper calcaemia and I think I’ve read where that can cause (dementia of sorts). I was not tracking for a period of time while the bone mets were active, in any case I’d be interested in your thought on these trends
Bo
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I have often wondered that question myself. Just going by my own symptoms and such as I have not been given any advice from a Doctor or nurse I’ll chime in on this.
I had tremendous pain from the bone cancer mets for six months prior to diagnosis. 6 weeks after starting treatment, ( Zometa) all bone cancer pain went away. I never had bone pain, per say, up that point from chemo. Upon starting Taxol I had bone pain in my legs and hips and lower back, no where else, that lasted about week after the treatment. As for intensity it was uncomfortable but no where near the misery of the bone mets. I had a bone met in my right hip and the differentiation between the two pains were marked in all aspects, bone pain wasn’t jack, cancer pain was unrelentingly miserable.
But that was just me, its so difficult to compare as we all have different perspectives on pain.
Not knowing absolutely, I do attribute the bone mets healing to the Zometa.
Bo
Question about Cigarette ODOR
in GENERAL
Posted
Can’t a position be stated with out the personal snide and pretentious remarks? And I hate to get preachy but shouldn’t the discourse be aimed at how to healthy up the primary area of our cancer, not defend reasons why the it becomes unhealthy. You don’t have to read between to many lines to understand that many bad habits primarily smoking, are defended by those that practice them. No matter how its colored up with analogies, this a no brainer. I can’t change the food makers, I can and did change my eating habits and we absolutely differ, in many ways.
Sorry you don’t like what I have to say or how I say it.
Bo