SharKats
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Posts posted by SharKats
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Hi,
I developed a case of radiation pneumonitis after 5 weeks of chest radiaiton - fever, extreme SOB, weakness. Was given steroids and antibiotics. I worsened and ended up in the hospital for 2 weeks. They performed another bronscopy and found some additional lung problems but upon release and with inhalents and cough meds, etc., it went away and I got back to normal - whatever normal might be w/this disease.
I just think it's something that should be watched closely and the doctor informed if it persists.
Wishing your Dad the best!
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My goodness - so glad they were able to get this terrible thing taken care of!
I'm wishing you nothing but better days ahead - and they have to be after your long ordeal.
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Hi Everyone,
Received my latest brain scan results and it showed NED. Naturally I
was elated and incredibly relieved. I still have 2 more "doses" of chemo and one is 2 days before Thanksgiving so I'm gonna have the metal turkey taste - yuck. I don't think many people believed the Campstar and Taxol would breach the blood/brain barrier but evidently it's working in close to 30% of patients with brain mets from lung cancer.
My 2nd opinion oncologist would have had me on WBR immediately upon finding the mets - my main onc insisted on chemo before resorting to any brain radiation. Two different schools of thought from two top onc's.
I am very happy but it's a "cautious" happy - I don't ever want my feet knocked out from under me like I did the last time I had NED that lasted all of 6 weeks. So I shall take each day as it comes and rejoice in the fact that God has seen fit for me to still be here almost one year after my dire initial diagnosis.
I wish all of you a safe and Happy Thanksgiving. I know that it can be difficult to find joy in a holiday when you or a loved one are expending all your time and energy fighting "the beast". But I do think we should take a little time out and count our blessings. There are probably many more than we realize.
BEST WISHES, ONE AND ALL - and God bless you!
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I have found 99% of discussions or written materials regarding lung cancer are focused on cigarette smoking and how "we" should have known better. I've heard/read too many times that "we" brought this on ourself and don't deserve to have as many research dollars devoted to lung cancer research for prevention and early detection. We don't DESERVE IT - even though it's the number one cancer killer!!!!!!!!!!!
I live in Houston and we have many days where our air quality is worse than LA and there's a danger level posted and children and people with lung conditions are not allowed outside. One would think that perhaps the pollunants in our air alone would and could cause and/or contribute to lung cancer. Would heavy pollunants be considered a type of second-hand smoke?? Genetics must play a role,
I, for one, am tired of feeling stigmatized by having smoked. I began smoking back in the days where it was heavily promoted, considered glamerous and you just weren't sophiscated unless you did smoke. I had smoked for almost 20 years before the first info was made public that smoking just might not be a healthy thing for a person to do. I should have quit smoking then but it's a very difficult habit to stop.
But did I deserve to develope lung cancer? NO! And I'm angry about the lack of concern and research from the medical profession. I've heard a lot about the dangers of second hand smoke so I assume it must be linked to some type(s) of lung disease.
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Hi Heather,
It's nice to "meet" you and I'm glad you found a place where you will receive support, understanding and information.
It sounds as though your Mom is doing well considering what she's been through. Your world does turn upside down when you hear those words: you have lung cancer.
There's not much you and your Mom will face that hasn't been met by at least one or two or the posters here and everyone is always willing to share their experience, lift your spirits and provide a shoulder to cry on.
God bless you and all your family!
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Hi Karen,
Just wanted to say a quick hello and that I wish you the very best. I have a sister named Karen and 3 good friends named Karen.
Wishing you the very best and hope you'll visit with us often. Someone is always here to lend a helping hand or a shoulder to cry on should one be needed.
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I would like to add my condolences to you and your family on the loss of your beloved Mother.
Memories are photographs taken by the heart.
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According to the National Cancer Institute:
Extensive-Stage Small Cell Lung Cancer
Chest irradiation is sometimes given for superior vena cava syndrome, but chemotherapy alone (with irradiation reserved for nonresponding patients) is appropriate initial treatment. (Refer to the PDQ summary on Superior Vena Cava Syndrome for more information.) Brain metastases are appropriately treated with whole-brain radiation therapy. However, intracranial metastases from small cell carcinoma may respond to chemotherapy as readily as metastases in other organs.[11,12]
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Thank you Addie - you made me cry - but it's a good cry. Words cannot express how much the support the people here give means to so many people. (I didn't say that quite right but you know what I meant)
Will keep you posted on what happens.
Thanks again!
Hugs,
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Hi everyone!
Just wanted to let you know that I have an appt w/my previous radiation oncologist tomorrow AM to obtain her recommendations. I have a Monday appt w/my oncologist who does not know I have scheduled this appt.
Tuesday I have chemo, Wednesday I see my pulmanolgist(?) and Thursday I have a 9:00 AM appt w/ the neuro-surgeon at Memorial Hermann to obtain info as to my being a good candidate for gamma knife.
I have become pro-active and I am so proud of myself. Up until now I've been intimidated into taking only action that was recommended by my main oncologist and verified by my 2nd opinion onc. But when my cancer returned w/ mets to my brain and my 2nd opinion onc expressed surprise and some dismay that I wasn't receiving brain radiation - only chemo, I decided no more just following along blindly since the chances of this chemo reaching my brain are 50/50. That's just not good enough. I even have a list of questions typed out for my first radiologist onc.
Wish me luck. I don't like having to make medical decisions if they conflict because how the heck do you know what is the right road to take?? But guess I better try to assimilate all the info I'm going to receive and attempt to do whatever gives me the best chance at living a little longer and hope I made the right decisions.
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Well, speaking from my experience, your Mom has to want to stop smoking. She's not going to be able to do it just to please you or her doctors and having this one survivor telling her that smoking didn't prevent her from being cured has certainly added fuel to the fire - so to speak.
A friend once told me that fear is a great motivator - for a while but that eventually, the fear leaves you and it's very easy to go back to your old ways. She was so right because 3 months after recovering from pneumonia, I, who vowed I would never smoke again because that not being able to breathe thing wasn't fun, went back to smoking. I quit 13 months ago - about 3 months before my diagnosis. Lighting up a cigarette and inhaling has crossed my mind, especially when I'm nervous about a procedure or waiting results of scans, etc. But I would NEVER, EVER light one up again and inhale that poison into my poor, diseased lungs.
I sure hope your Mom will stop smoking - and maybe if you got her a book and made her promise to read it or some motivational tapes it may help a little. Maybe someone else will have some better advice for you.
Wishing you the best of luck,
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Wow - John, thank you so much for taking the time to copy/paste this info for me!
I really, really appreciate it!! I don't like reading anything of length on the screen so I'm printing this out also. My main onc is going to spend more time with me at my next appointment (Monday) than she's ever spent with me. I need answers, and I just feel something else needs to be done for these brain mets.
Thanks again!!!
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Thank you SO much for the info Peggy! I really, really appreciate it. This is also going to be printed out and taken along to my oncology visit Monday.
I really appreciate everyone taking the time to respond.
God Bless Us Each and Every One
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Sorry guys but I didn't know where to pose this question.
How the heck do I get a photo on here. I have searched but I can't find the instructions. But that's typical for me.
I would appreciate any help you could give me or if you'd just send me in the right direction.
Please and thank you!
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Don't be sorry about the "fear factor" - it was my feeble attempt at humor.
But fear can be a great movitator in itself and with your horrible threat on top of it, I was shaking in my boots. (Just teasing).Cancer is something you do need to tackle head-on and as someone told me, maybe it was you, you need to tell the cancer that it's not welcome and to go find another place to live. Love those metaphors.
Wishing you and Letty the best,
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Thank you Don. I'm printing this out and taking it with me when I see my main oncologist Monday.
I'm also going to fax it to my 2nd opinion onc as he mentioned whole brain radiation.
Thanks again!!
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John,
The Temodar page says I do not have permission to access it. So.........
I feel really upset that those 4 mets in my brain are just sitting there and I'm hoping the chemo I'm receiving will kill them. I just wish I could find ONE person who had chemo either shrink or excise their brain tumors.
It makes me wonder if my main onc is being realistic enough.
Thanks anyway.
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If this has been discussed before - PLEASE forgive me. I would just like to know how many of you have had gamma knife surgery for brain mets.
Don is the one who brought this up to me and since whole brain radiation was discussesd briefly with my 2nd opinion onc, I am anxious to know if this is relatively common with brain mets or if most onc's are saying WBR. I do NOT want the side effects caused by WBR and from the info shown on Memorial Hermann's web site, this seems to be a much more
preferable way to go if the chemo doesn't shrink the brain tumors.
I was truly excited to know there was an "out" and WBR was NOT my only option.
Sure would like to know if anyone has had it done and their experience with the procedure.
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I hope you will call Don. He's a great "phone buddy" and I felt much better after talking with him. (And also the encouragement I received from all the people at the Board regarding my recurrent SCLC). Now Dan operates on a "fear" level. He said if I didn't change my attitude and get my fighting spirit back he was "gonna jump in his pick-up truck, drive to Houston and kick my butt." It made me laugh but it also made me realize that I can't sit around moping (and I was indeed having a large, long-lasting pity party) that I need to be pro-active with my treatment, do some research and regain my optimism.
The treatment being given to your sister has me totally baffled. They started me on chemo as soon as they saw the brain mets - I mean within 3 days I was on the chemo.
I feel so badly for your sister - I just don't understand what they're doing. I will certainly remember her in my prayers - whichever road she decides to travel.
May God bless you both.
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Thank you for the information. Unfortunately, I have to check with insurance company to see if they'd cover the costs involved and the trial would have to be in Houston or Austin, TX or Miami, FL. I don't receive enough $ on disability to afford accomodations in a city without friends or relatives.
I understand that only 20 to 30% of all lung cancers are small cell, that the majority of clinical trials will be for non-small cell.
Thank you again for the links!!
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I don't know if anyone else has done this - but I sighed up on Google to be notified any time a clinical trial was taking place involving small cell lung cancer.
Well, in about 2 or 3 days, I was looking at info on about 8 or 9 plus trials! I went "Whoa - I shoulda done this before."
Then, when I opened them, all but one was non small cell lung cancer.
I may have received one email notice relative to small cell and it was regarding a pain/side effect reliever. I guess I keep thinking I'll come across that magic clinical trial constructed just for me.
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Thank you for your beautiful post Cindy. I'm trying to get my head in the right place and making some progress.
Had my first round of chemo - not many side effects - yet.
I can't find the words to tell all of you how much your words of encouragement meant. After being told I looked like a long term survivor then being told 2 mo's later it was back was like being punched in the gut with a baseball bat.
But I know things will turn out the way they were meant to be and in the long run, it's in God's hands.
HUGS!
Shar
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Hello Rana,
Just wanted to say a quick hello and welcome. You will be glad you joined!
CPT 11-Treatment Failure
in SCLC GROUP
Posted
You will be in my prayers!
After finishing my first line chemo and chest radiation I ended up with 4 brain mets - the liver and adrenal gland clear. Had 5 "doses" of Campostar and Taxol - scans showed mets gone.
Brain scan 2 mo's later showed 15 to 20 brain mets so I'm back on the Campostar and Taxol as she wants to "narrow the field" before WBR. I sure hope that's what it's doing. I did read a "Google Alert" that there was a clinical trial somewhere using Campostar (spelling?) for recurrent ESCLC and they were looking at about 40% reduction but I can't remember the percentage of people it worked as they had hoped.
God Bless you!