Jump to content

EastCoastLadi

Members
 View Profile  See their activity

  • Posts

    795

  • Joined

  • Last visited

 Content Type 

Posts posted by EastCoastLadi

    Could Have Been a Lot Worse

    in MEMBER UPDATES

    Posted

    Joanie you are such the trooper!!!! I was having a bad day and then I read your post, you put a big smile on my face! :D

    I've seen my husband go thru WBR, and the first time he had it, his overall results were fantastic! I know you are going to have the same success.

    You probably already know, but don't be suprised if you become really fatigued, I've told and still telling my husband do what your body tells you to do. Don't feel guilty if your too exhausted to do anything, just what you have been thru is beyond exhausting...

    I'm so very happy for you!

    Grace

    Hospice Says One Week Left

    in GENERAL

    Posted

    Please know my prayers are going out to you and your mom and dad tonite, try to stay strong, I know it may sound like a difficult thing to do, but you are, you have been, I know what you are going thru, I went thru the same with my dad. I know he tried to hang on, but we all told him it was alright to go.

    Please know we are here for you.

    Grace

    Support

    in GRIEF

    Posted

    Kasey,

    I am so very sorry about your friend Eddie and his wife Angie, it hits too close to home for me. Please know my prayers go out to both of them, and you.

    Grace

    Treatment for Alan Starts Tomorrow

    in MEMBER UPDATES

    Posted

    Debbie,

    I'm thinking about you and Alan today, God I hate the constant battle with this! There is never a moment of rest. I know Alan can't tolerate chemo, but did you happen to read about my husbands' positive results with oral etoposide? I know everything is so trial and error, if you know me, I'm always looking, seeking for any bright lights and I wanted to let you know, hang in there, both of you, I'm here for you guys!

    Grace

    There's no "BOOK" on my husband

    in MEMBER UPDATES

    Posted

    I have mentioned that I would give an update as to how my husband is doing, and since I've known for a bit, but w/ the holidays, and my "little one" being so sick :( ( but she is slowly getting better), I think you will understand the title of my post.

    As some may know my husband was doing IMRT to brain mets and rad to chest and liver, his scans showed increase in number and size of mets in brain and slight increase in lung. So at that point, his onc. decided to go back on oral etoposide only, of course I'm thinking one chemo, isn't two or even 3 better?

    But onc. said husbands' overall blood looked good and he wanted to go ahead. So the goal was 21 days, which if anyone understands this type of chemo how it is taken, to finish 21 days is very rare. Well my man or "chemo man" did it, of course w/ some small modifications - 1 pill as day in the final days vs. 2 pills.

    Next,after time off of chemo, which puts us around the holidays, dr. wants to do the "tests" MRI and CT chest. My husband is fortunate to get both for the Fri. before Christmas, but before we left the dr. office I said, please don't spoil our Christmas if it isn't good. Well luv him he didn't but the 26th he called, my husband happened to be out for a walk. The news was beyond good!!!!! the MRI ( the written report ) indicated decrease in number and size of mets and decrease in brain swelling, his CAT indicated decrease in size of tumors in lung and adrenal gland!

    Well I couldn't believe it, shock set in, dr. couldn't believe it either, he was impressed, we saw in a couple of days later, he can't explain why, but, he said for my husband to have what he has EX Small Cell LC w/ reoccuring brain mets, to respond so well to just the etoposide is phenominal! ...so I thought my husband doesn't go by any "BOOK" - throw the proverbal "BOOK" out!

    Now know that he still hadn't seen the actual films/scans, but told my husband to start back on Etoposide again, it's so hard keeping track of everything, but in my confusion, the next day I called his nurse, expecting her to call me back, well she didn't but the dr. did (and he was on vacation, but happened to had popped in at the hosp to see the scans) .

    This is what he tells me....90 % decrease in the lung tumor!!! 50 - 60 % decrease in the brain mets!!! Again, he tells me he has never seen it before, but then again, you haven't met my one of a kind husband.

    Oh I'm leaving out all kinds of stuff, but I will tell you , its' been so mentally exhausting in all the good news, it still is a constant fight, my husband can never stop. His Dr. told him and me , that my husband is one of the main reasons that gets him up to come to work everyday!, my husbands' progress is nothing short of unbelievable. If my husband went into Boston, ( u all know some of the best cancer ctrs in the world) they would be in amazement too.

    ....so we take the good (great, we take the bad ...( and no I am not going to sing the theme to the "Facts of Life" :D ......

    but please, even when you think the worse, the bad, lost all hope know that this disease is so unpredictable that no one and I mean no one can tell you what will happen for sure!

    ...thanks for letting me ramble!!!

    Grace

    SomethingI need to do for everyone!!!!

    in CLINICAL TRIALS

    Posted

    Randy,

    Keep on going, with knowledge comes wisdom, the more educated one is and the more info. you can pass on the better. I will tell you something, I read it all and sometimes even more, I am so analytical about things and research the "net" alot. I think sometimes my husbands' dr. thinks I want to be the dr. but I must tell you that when we saw an onc. down at one of the excellent hospitals in Boston, and I asked about all sorts of info. I knew, alot from coming here, he was impressed! , but he also admitted to me how ashamed he was of the lack of research and funding for lc, especially in sclc.

    So keep on doing what your doing, you are greatly appreciated!!!! :D

    Grace

    New member

    in INTRODUCE YOURSELF!

    Posted

    Lorna,

    First of all Welcome! and secondly sorry that you have to come here and are going thru all you are. As you can see my husband has SCLC and has been thru much.

    As far as the weight loss or lack there of, all I can tell you from my husbands' experience was the less he lost, or more gained was a positive. I would probably discuss it w/ his dr.

    I also wanted to let you know, which you may not be aware of is that chemo seeps out of every pore someone has, my husbands' eye dr. told him it comes thru his tear ducts. I know it comes out thru urine, and sweat and I'm assuming saliva as well, as other bodily functions. I'm just guessing but perhaps the odor from his mouth may be related to the chemo and also the medications that he is taking w/ it.

    If you see my signature you can see all my husband has and continues to go thru and he's still here, fighting, so there is hope.

    Grace

    new, but not really

    in INTRODUCE YOURSELF!

    Posted

    Hello Donna,

    I've walked in and still walking in your shoes. If you read below all about what my husband has and still is going thru, you can see he is a fighter too. I haven't even updated people as to what is happening with him since Christmas, I plan on doing that real soon, but what I can tell you is that his dr. is amazed at what he can take, what he has gone thru and that he is still fighting.

    Coming here you will find an incredible support team of wonderous, marvelous people, fighters in all!

    Grace

    brain lesions

    in NSCLC GROUP

    Posted

    LG

    I don't know why your moms' dr. told her to go into the ER, the first thing I would ask is where in the brain are the lesions? and why the urgency in radiating. My husband had and continues to have several brain mets, new and reocurring and while it was very important to get him radiated (WBR - 1st time and IMRT for the reoccurance), there was no emergency, meaning that he was usually scheduled for rad. within a couple of days.

    Besides asking where and why, I would also ask what dosage of rad. they would be using, and also if there is any swelling in her brain ( my husband has that), I don't know if she is on any type of steroids, but if she isn't I would ask the dr. his/her take on that ( it is given to help any swelling)....

    ...I just want to let you know..that brain mets can respond very well to rad. of course everyone is different.

    I know you're scared, I remember when I first found out about my husbands brain mets, it was too much. But please know they can be treated.

    Your mom will be fine, just remember you can ask the drs. whatever, there is no thing as a stupid ?. I am wishing the best for your mom. Please update me as to how she is doing.

    Grace

    I have a treatment plan in place

    in LC SURVIVORS

    Posted

    Terry,

    It's great that you now have a plan. I can tell you some things my husband ( and I ) first experienced that you may not realize.

    it's ok to be frightened, you're going into the unknown. but can I tell you that my husband had such wonderful support at the hospital he went to, the nurses, social worker, NP, administrative staff, volunteers and of course his onc. helped more than one can imagine.

    Be prepared to feel like you're living at the hospital/center where you go. you'll get used to it. Heck, you may even make a pot or two of coffee :D ....

    If you feel hungry, don't worry, there will be food, and sometimes alot!, and of course hot and cold drinks.

    ...just a few things...but you will do just fine!

    Grace

    Loss of Consciousness/Unresponsiveness

    in GENERAL

    Posted

    Beth,

    I know this is so very difficult for you, I remember in my dads' final days, he would have varying degrees of responsiveness. I remember seeing him on the Friday before he died, he was alert, but did sleep alot, then by Sat. less alert and then by Sun he was totally unconscious, he passed away very early that Monday morning.

    I don't have any words of wisdom, everyone is different in their living and their dying. But I knew that my dad knew that we were around him, even if he couldn't communicate it to us. But he did rouse one brief time, when my mom told him she loved him, he told her he loved her back.

    Even today, it is still such an emotional experience. I know you are strong, and please know you have much support here for you.

    Grace

    The Parrot

    in JUST FOR FUN

    Posted

    A young man named John received a parrot as a gift. The parrot had a bad attitude and an even worse vocabulary. Every word out of the bird's mouth was rude, obnoxious and laced with profanity.

    John tried and tried to change the bird's attitude by consistently saying only polite words, playing soft music and anything else he could think of to "clean up" the bird's vocabulary. Finally, John was fed up and he yelled at the parrot. The parrot yelled back. John shook the parrot and the parrot got angrier and even ruder. John, in desperation, threw up his hand, grabbed the bird and put him in the freezer.

    For a few minutes the parrot squawked and kicked and screamed. Then suddenly there was total quiet. Not a peep was heard for over a minute. Fearing that he'd hurt the parrot, John quickly opened the door to the freezer.

    The parrot calmly stepped out onto John's outstretched arms and said "I believe I may have offended you with my rude language and actions. I'm sincerely remorseful for my inappropriate transgressions and I fully intend to do everything I can to correct my rude and unforgivable behavior."

    John was stunned at the change in the bird's attitude. As he was about to ask the parrot what had made such a dramatic change in his behavior, the bird continued, "May I ask what the turkey did?"

    Treatment for Alan Starts Tomorrow

    in MEMBER UPDATES

    Posted

    (((Debbie))),

    I know how you feel, it's such an uphill battle and it never ends. Tell Alan I said, he can do it, he has endured so much and don't give up now. This road we go down is so tiring and some times you just can't take any more. Just take this moment as one of those bumps in the road. I'm praying and thinking about you and Alan.

    Grace

    Resolutions for the New Year

    in GENERAL

    Posted

    ..First of all I wish everyone a happy and healthy New Year!

    and of course, I got to thinking about what changes could I make for 2007. We all know about the same old ones....diet, exercise, but I went thinking beyond those and talked to my husband last night about some others.....

    I want to try to be organized - externally - I can organize in my head, but you wouldn't know it by seeing my home!

    I also want to be more patient, I'm constantly rushing around and pushing others to move quickly, but this year, I'm going to try to lay back more.

    I'm going to make a big effort in not repeating after myself, it drives my husband and daughters crazy.

    ...and I'm going to try not to "micro-manage" my husbands' cancer...meaning while I'm not shutting up completely with his Onc. I am going to try to keep quiet and listen more...

    and with that list....whew!!!!

    once again --- Happy New Year!!!! :D

    Grace

×
×
  • Create New...

Important Information

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

  I accept