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LSU Girls Rock

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  1. NO SUGAR COATING NEEDED I AM CAREGIVER TO lc pATIENT I WANT TO UNDERSTAND THIS COMPLETELY BEFORE ONCOLOGY APPOINTMENT TOMORROW. THEY SAID IN REMISSION, HOWEVER, HE IS WORSE THAN BEFORE DIAGNOSIS. (COUGH IS WORSE, SLEEPS DAYS AT A TIME, NOT EATING VERY MUCH OR OFTEN, CANT BREATHE, OUT OF BREATHE,ETC.) COULD SOMEONE READ THE FOLLOWING AND GIVE ME YOUR OPINION ABOUT THE BOLDED SENTENCES OR WORDS? (YES THE ONCOLOGY DR. WILL TELL US BUT TOO HARD TO UNDERSTAND, VERY VAGUE, TOO MANY WORDS OVER OUR HEAD, HORRIBLE BEDSIDE MANNER- CURRENTLY LOOKING FOR NEW ONE) I READ DEFINITIONS BUT NEED TO KNOW MORE AND CAN NOT FIND IT. THIS WAS TAKEN FROM A CT SCAN- CHEST ABDOMEN AND PELVIS WITH CONTRAST: 1- WHAT IS THIS--atelectasis 2- WHAT IS A PLEUREL EFFUSION? 3- WHAT DOES THIS SENTENCE MEAN? "have some component of loculation. No enhancement within the effusion." 4- WHAT DOES THIS SENTENSE MEAN? "Aortic atherosclerosis with patency of the origins of the great vessels." 5- DOES IT APPEAR THE CANCER IS BACK OR WORSE? Lungs: Redemonstration of postobstructive atelectasis involving the right upper lobe, not significantly changed. Remainder the right lung demonstrates some compressive atelectasis due to a moderate-sized pleural effusion. Left lung is clear. No consolidation or nodules on the left. Pleura: Redemonstration of a moderate sized right pleural effusion which appears to be increased in size particularly anteriorly and may have some component of loculation. No enhancement within the effusion. Mediastinum: Heart size is normal. There is a small pericardial effusion. Coronary atherosclerosis. Aortic atherosclerosis with patency of the origins of the great vessels. Supraclavicular lymph nodes are of normal size. No axillary lymphadenopathy. Redemonstration of a vague mass at the level of the right hilum measuring approximately 3.9 x 2.8 cm, at a similar level on the prior exam approximately 4.7 x 3.6 cm.
  2. Tom- trying to print your red toe thing and it wont print is there a secret to it?
  3. Tom- Celebrating with you- (you cant see it but I am doing the happy dance in your honor) Your news is so wonderful. I have kept you in my prayers and added you and your wife to my church's prayer chain. I am so thrilled to hear your news and can't wait to share it with my Prayer Warriors. That is great. God truly is good! Well we finished the first (and with God's grace) only round of Chemo and Radiation. Now we have a three month wait unless he decides to do the trial. I keep reminding him how you and your wife did a bit of traveling and what a great idea that is..LOL Wow- where we were just 6 short months ago? I can say that I was a complete dummy head when it came to the big LC. I do not think even my worse enemy deserves this- No one does. I have decided to make every effort I can possibly make to bring more awareness to this horrible, hateful, no hold, no boundaries disease from hell. I haven't figured it out yet but I know after this - a person would have to brain dead, emotionally dead and a complete jerk NOT to want to get on board with finding a way to prevent others from ever feeling these all over the road up and all around emotions that are enough to make the devil himself pray! We are having a "I FINISHED CHEMO" Party next week and I think some of these people are going to hear more details than they ever wanted to, and they all better bring their checkbooks. Clinical Trial Update: no decision yet. I have a lot of doubts - not about this trial particularly because i have done my homework there- the trial itself is great- hours and hours and many more hours of research done there and I think it is very promising and hopeful. I am in 100%. My concerns fall more with where to do the trial, is he really eligible based on several actors that i can not post in a public forum but are concerning? I am running into brick walls when trying to find those particular answers out because in this world today everyone is afraid of offending someone and being politically correct- well I don't care who gets mad, who's feelings I hurt, who feels anything- I want answers and the truth and I want it NOW. He is is still considering it though. For me the most surprising thing about them was that he will have to PAY for everything (not the actually administration of the drugs or the drugs).But to have another port put in, the extra doctors appointments, the extra test like the EKG, the extra blood work they will do each time it is given, the new scans BEFORE the trial starts, the scans during the course of the trial- all are put through insurance and then he pays his portion- I mean WTH is that all about? They want him to take a drug that is not on the market in anyway (off protocol), rick the side effects, including death, spend every two weeks getting the treatment which is an hours drive away, and then pay for it on top of all that- Seriously? Well any ideas on party things to bring awareness- please hit me up. Keep Breathin' Sylvia
  4. Hi Tom- Well let me say that I appreciate you sharing how you and your wife have done a bit of traveling since diagnosis- i made a point of sharing that with him MANY MANY MANY times and then several more times in case he did not get the first 15 hints!! LOL Travel Insurance can be a life saver for sure- learned that when I went to Pe're Lachaise, Paris (Jim Morrison's grave)- lost luggage- never to be found again- otherwise a whole lot of french people would have enjoyed a side show of my nekkid self. We have some interesting tidbits on the clinical trial- I will send in a private message- but a must read story!! I also have the perfect spreadsheet for bill traacking- I just have not figured out how to upload it here in order to share with you.(or others if they need it) Hope all is well with you Keep Breathing` Sylvia
  5. Tom, You are in my thoughts and prayers-you got this! Well we are finishing up the last week of hell here-now I think I am more worried than I was through out the treatment and even before we started it. Now my concern is why hasn't he started feeling better, why would they just stop everything (either he does the clinical trial or he is done for three months). This clinical trial mess is ....well a mess! I consider myself fairly intelligent but let me just say this research has turned me into a complete moron.(in south pronounced ...more..on) this page says do this, that page says do that, both pages say we should get this or not get that. Jeeeez where is the Jose'? I keep thinking I am going to wake up and this will have all been a very very bad nightmare and life will be as it was before I went to sleep.Keep pinching myself but all I am getting is bruised) He on the other hand is just as happy as a cat eating the bird to just move forward and not think about it. (I mean seriously...no worries at all) The other day I was so frustrated with his lack of ....interest...in anything- the 15 hours a day i have spent researching clinical trials, the outcome of that research the bills, payments made not made, the spreadsheet I spend over 12 hours perfecting, the phone calls from or to the doctor...................I mean seriously I DON'T HAVE THE BIG LC- HE DOES!!! I feel like my life is on hold while I manage... support...take care of....handle his life. I get mad and just say "screw it" I am not doing any of it anymore- then I see he isn't going to so..... I have to. Otherwise it would not get done. I think he would still be seeing the group of professionals who.... left to him and them ....would have killed his stubburn *ss. I hear the beautiful shores of Maui calling my name- maybe some serious alone with the waves time is in order. I mean why not ,,,,for the next three months he is a Rocks Star with nothing to worry about- why should I?
  6. Hi Tom, Thanks for the quick response. You are great!! How did the test go you spoke of recently? 1- He is a little worried about it (Of course I told him after everything already to suck up and put his big boy panties on and stop whinning like a girl) 2- Your wife sounds very resourceful- (I on the other hand have a hard time walking without tripping so rigging anything might not be such a good idea) 3-Yeah I drained both already to keep him out (sure do miss the hot tub) 4- I don't know either 5- Once a week to change the "end" and to flush it- Not really sure. Guess we will find out tomorrow. Yeah I am not sure I trust the doctor. He is just soooo eager for him to be a part of it- he mentioned it the first visit we ever went to him. (Mmmm does he make money off this? Does he own stock in Astra Zeneca? ) Just random thoughts- Thanks again for all the help You Rock! Sylvia
  7. Ok questions needing an honest and quick answer- Please His port got infected- they removed it yesterday. Keeping in mind he only has ONE chemo left- then he was suppose to be put in the clinical trial. A friend who works in the surgeons office told me that we needed to call before going to Chemo tomorrow because his file said that the type of chemp drugs and the dosage needed to be done through a line (PORT OR PICC) So I called the doctor- the nurse said that yes he needed to have a PICC put in tomorrow. He is worried about it for entirely different reasons than me. His concerns: 1-Does it hurt when it is being thread into your chest- (I know they numb the insertion site.) 2- Can he shower with a PICC in? 3-Can he go swimming or get in Hot Tub? 4- Why didn't they just do a PICC instead of a Port to begin with? 5- Once a week for what- he is already going once a week to see the oncologist (his PA really) My concerns: 1-Is this docor just putting the PICC in because of the clinical trial and his eagerness for P to be in the study? (I read the suggested web site and everything in the papers he was given, are completely different than what that guy has on his site regarding Myths and reality- thanks for recommending) Time sensitive- if possible Thanks Sylvia
  8. HOPE is that someday soon life will return to normal!
  9. All of those are a little too far from us. I think I am going to the mentor site now and check it out. I think I am ok for the most part. Except the bill organization thing. I for sure need help with that. I have tried so many different ways to organize and none have worked. So many doctors with spo many dates of service for so many things, with names that are not the doctor we actually saw. Jeeeez I need a degree just to figure that out. Thanks for your help and suggestions, Sylvia
  10. Hi Tom, Yeah I need a spreadsheet but the problem is I am not very good at "building" it. I am great at keeping it, but deciding how to put it together, or organize it- not so much. If someone has one they created that they want to share- please do so here or they an send to my email. The clinical trail scares the crap out of me. Personally I would not be the one to take part. I think my concern is (after reading the following you may think I am nuts) but the concern for me is that he gets a placebo, the cancer starts to grow again, his doctor doesn't know he is on a fake pill, but doesn't take him out of the study, then he dies because he stayed in a study getting the fake drug. (maybe he waits too long to take him out or whatever) But he has already made up his mind to do it so guess we live with the results. Below I will list the information about the clinical trial as it reads: A Phase III, Randomized Double Blind Placebo controlled,Multi-centre,International study of MED14736 as Sequential Therapy in Patients with Locally Advanced, unresectanble, Non Small Cell Lung Cancer (stage III) who have not progressed following Definitive Platinum Based Concurrent Chemoradiation Therapy (PACIFIC) Experimental drug 12 month period including 26 offices visits to the study doctor Aztra Zeneca is the company paying for the study The purpose of the study is to see if MED14736 is effective and safe in treating lung cancer. This will be done by seeing if the drug prolongs or improves the benefit you have already recived from your initial treatment with chemo and radiation therapy. to do this a comparison will be made between the patients who receive the study drug and patients who will receive a placebo. One will be give after you have received chemo /radiation and the cancer has shown some improvement or has stabilized with the previous treatment. The levels of the study drug in your blood will be measured to see how your body accepts the study drug. The study will also evaluate whether your immune system becomes activated following treatment or your body produces antibodies against the study drug. This is a Phase III study.Double Blind Study As of July 2014 many types of cancer have been treated with the study drug. 2 in 3 chance of getting the drug and a 1 in 3 of getting placebo No other anticancer drugs while in the study 12 month incurements return to study site every two weeks to get 10 mg per kg of body weight by infusion into large vein I am going to upload it later, Later
  11. Todays, news : Today we met with the Medical Oncologist who says one more round of chemo (Monday next week), then instead of 4 weeks of Radiation, it is just 1 week and then they are re scanning him, then we will go from there. So pretty good news but still afraid to get any hopes up. The Magic Mouthwash continues to be a lifesaver for him but he is still dealing with trouble eating, drinking or taking pills- won't go down. His grandson jumped on him and jiggled the port somehow and they freaked out about that, so he has to see the Surgeon tomorrow to have it looked at and fixed (Who knows what that will involve) The bills continue to pour in and the trees are dying a dozen a day and I think i have killed all the tequilla worms in Mexico but other than that - things look pretty good right now. They are talking about including him in a clinical trial after the treatment is complete. My next post I will tell ya wha it is but I cant find it right this minute-buried under the dead trees on my desk. Keep Breathing~ Sylvia
  12. Hey Ya'll YUP love the magic mouthwash- it is ONE of the most wonderful drugs ever!! He was making me nuts with the throat issues. But I still say the gas medicine is the only thing saving this relationship right now because Lord have mercy I couldn't continue to live with a gas mask over my face 24/7! The terminology is killing me but I am one of those people that i have to know every ;little detail- so I read read read and ask ask ask a lotof questions and then I have no shame I call in favors. I have a friend who is a Brain Doc in Atlanta and he shared some websites with me that have literally saved me. Sites with information on how to read scans (for radiologist) how to read your doctors notes and what the abbreviations all mean, what the letters are for blood test, what they are for and why he might be looking at those,the nodes in the body and locations and what they refer to as "stations" in the body, and CPT codes. You name it I have a cheat sheet created for it. The biggest struggle for me is all the bills and Medicare Statements. I mean you go for a Mediastinoscopy and you then you get a statement from 15 people. Some names are reconizable and others your left scratching your head asking who the heck is this person. I can see by my cheat sheets what they did but I guess I just never realized how many different people we would get statements from. I think they possibly have killed 100 trees for just his bills alone. Today was last date of Medication Chemo, tomorrow we have hydration - then four more weeks of Radiation. At that time, they will tell us the next road on this journey through hell. I appreciate all your reply's. I have found that writing it out helps me tremendously. I started the article and it is growing by the day. Hope to have it out in a month or two. You guys have been great. Keep Breathing~ Sylvia
  13. Hi Tom, Been a busy few weeks, I think I am running on fumes at this point. I had this post all written and then shut the window- need a vacation soon!! So to start with his loss of voice- gave him "Magic Mouthwash" (swear that's what the bottle says) and it works ....well...MAGIC! He can swallow and eat more and he is not gagging on pills any longer. So that's good news. However, the bottle says every 6 hours and he is drinking it like uit is some of Kentucky's finest Bourbon. But hey I am not complaining if it keeps him happy. The radiation effects are starting to show. he has little pimple like bumps all over his front and back on the right side. The itch him like crazy which makes him mad and I am sure it annoying. They gave him some cream that I rub on it but it doesn't seem to last very l;ong. I am wondering if we can use that ole "my granny did this" recipe of 50% vinegar and 50% water and you rub it over the itchy spots with a cotton ball. (It works for bug bites or poison ivy) They also gave him some meds for the gas and bloating. Thank you sweet baby Jesus that works miracles. He no longer has the heartburn or the bloating and we have not had any more all night "gas explosion" kinda nights, So again thank you Lord!!! Five Weeks of Chemo and Radiation down- they re scanned on the 6th with surprising results: So here is what the report says: (Some of it I understand and some I had to look up and some I can't find anywhere but I am going to go with it's good news) And I quote: CT scan shows significant improvement in obstructive atelectafis (collasped lung I think) and consolidation in right upper lobe decreased Congolmerate adenopathy in the right hilum (this one I can not figure out) and reopening of the right upper lobe bronchois Bilobed nodule in right lower lobe has decreased in size with resolution of smaller nodule in right lower lobe. Risidual fpiculated nodule in right apex (this one I totally guessed at spelling and can not figure out either) Either way the seemed encouraged and the scan's look very different when put side by side. They still are not great at explaining things to us but it appeared to be encouraging. The course of treatment is the same with 4 more weeks of Chemo and Radiation. So that is the latest news- All we can do is pray- Hope all is well with you Sylvia
  14. Is loss of voice a common side effect from Radiation for Lung Cancer? How long does it last? What can we do to help it?
  15. Hi Tom, Well of course he covered the rice in white peppered gravy, so that was a bust. The doctor did give him some new meds that are suppose to fix or at least make life with him liveable again. Only the first day so still waiting for the house to explode! The radiation is taking it's toll now. He is having problems with his throat. Hurts to eat or even drink sometimes. New meds for this also- numbs his throat, FINALLY thank you sweet baby Jesus he told them that he had turned into a big ole meanie pants.(you know the mood swings, mad at the drop of the hat, snapping, screaming at the TV and its not even a ball game, biting my head off for NOT having the LC..etc) They of course offered him.....new meds! He refused them for now. However, I on the other hand told them just to write a double scrip of the strongest ones they had for me instead. (they declined- now they are the big ole meanie pants) Monday will be the 4th week of treatment. They will be rescanning, repoking, re-whatever-it-is-they-do on the July 1st. If Fred has lost weight and has stayed in one place, then they will be doing a lobectomy, followed by 4 more weeks of chemo and radiation. (Fingers, Toes and Eyes crossed) I have talked to him (sneaked it into a conversation) about this site and you Tom in particular. He shows some interest so maybe before too much longer he will ......at least read. I am leaving him for a week and we will see what happens. Maybe if I am not here to witch, scream, holler and stomp my feet- he will get more actively involved in his health. My thought for this day: If I was given this news- how would I react? Would I do absolutely everything I was told I shouldn't, just to show them that I could? Would I pretend it didn't happen and hope it went away on it's own? Who knows? I would like to think I would follow the doctors orders to the letter and research and study and learn everything I could about the thing that could possiblly kill me before I was ready to go! I KNOW this..........I would be just mad enough to fight like hell to survive. God Bless Sylvia
  16. Anyone know of anything around Lakeland, Winter Haven, :Lake alfred area.
  17. Hi Tom, Thanks so much for the information about "toes" I will for sure be reading up on that one. His biggest side effect so far is "gas". I do not mean the normal flatulence everyone gets- I mean over the top, where are the gas mask Lord help me no never mind just blow up the house and it's contents, flatulence. This of course turns into diarehha and he never knows which one it will be. Which leads us on a whole nother journey I never wanted to be on., I tried beano, pepto, peppermints, garlic soup, the scrips for nausea, lemon water, cinnimon sticks, immodiam, every "grandma home remedy out there" (Obviously granny never dealt with the LC) nothing works. he is miserable and I am in need of fresh air. Til Later Sylvia
  18. BTW Fred is the name of the tumor and friends are all the horrible test, doctors and others that I am completely am in dislike of! Yes we have been through the ringer on this one. He and I have been friends for about 6 years, he was my boss for most of those but only together about 1. So it's alot for a new relationship to deal with. That being said I am in it to win it as the lame ole saying goes. I think for me the hardest parts are: (yep there is a list) 1- two rounds of antibiotics bc they thought it pneumonia, it wasn't 2- being told node involvement, hilum, too close to heart, no surgery, 8 weeks chempo and radiation- to node involovement, hilum, whole lung would have to come out, dont want to do that, (see attachment) to nodes are negative, hilum ok, not worried about closeness, 4 weeks chemo/radiation, then resection of upper lobe. I mean who knows what tomorrow will be and who knows we are being told the truth? 3-His anger - i know it's really not me, I know in my head but my heart takes a beating when he is angry and I am getting the brunt of it.(no family close by for me, very little for him, none of any help) to fight with someone who you have never fought with, the guilt of fighting is unbearable. 4- The alone time. Be careful what you wish for right. I alway told him he was retired so he had lots of free time while I was at work, so he didnt need alone time, but I did. NOW I am alone so much it makes me nuts. So I spend it looking at more stuff on LC which brings me to Number 5 5-my 23 hour long days. I work full time (he is retired) and then I come home to clean house and the mess he's made, cook, only to watch him eat garbage that is so bad for a healthy person much less someone with LC,and then do more research more things aboutabout something I never ever ever weanted to be looking at. While he lays in bed and then shows no interest in anything I have found. He would still be going to THE BUTCHER (TB), the Piece of xxxx(POS) and the Dumbxxx(DA). 6- So much to read- one says one thing, another says something different, this diet, that diet, do this, dont do this, meds should not do this but they do, round and round the merry go round goes! 6- Other peoples attitude and comments. (yes he smoked, yes he knew it could cause lung cancer, yes he did it anyway for 30 years, yes i tried to get him to stop.....) Jeeez Feeling like no one else in the world is dealing with this- knowing not true but it feels that way. I own a magazine (online and in print in 5 major cities) and I started a blog but have yet to put it in print. (Writing makes me feel better). Well that's just the start of it.
  19. Hi I'm Sylvia and I am a caregiver (or at least I am trying to be). Well does he story start. The big LC isn't for sissy's that's for sure!!. My BF was diagnosed with ....and I pause here because who knows....my faith in God is mighty but in Doctors pretty low. Our story started back in October 2014. He was feeling like crap. no energy, no get up and go, he had flu like symptoms and just overall was not himself. I made him see his Primary Physician (D.A. for short). The doctor said pneumonia, gave him a shot and a scrip, then sent him home. December 2014 no better- no worse. But I ask him just to double check again. (Family history of cancer, smoking, construction, asbestos.early 50's...all the fun stuff)This time they did chest x-rays and blood work. We left and went on a cruise. We received no phone calls, no snail mail, email or Facebook message regarding those test. Like most people, no news has to be good news. Right? (Insert "and they lived happily ever after" please?) Sadly in April 3, 2015, he was very ill with the same symptoms. This time the doctor pulled out the reports from December and said his chest x-ray was abnormal and wanted him to have a scan. (WTH right- 4 months later). So on April 23, 2015 the Scan was done, The results were ready the next day. The doctor says go see my colleague, the Pulmonary Specialist (POS for short). The POS tells us it looks like a mass on his right lung, upper lobe. He wants to do a Bronchoscopy to be sure. He then refers us to another doctor (same day appointment) who is a Thoraic Surgeon (affectionatly referred to as TB) . Now this doctor says to us "Why are you here"? (Let's just say I had to hand it to Jesus at this point because I was ready to go ballastic and not in a good christian girl way). We told him how we ended up at his office and he sent us home and told us he had nothing to talk about until the Bronc was complete.Seven days later the procedure is done and the POS tells us it is Stage III LC, it is in his right lung and needs to be removed ASAP!! Sent back to TB who now tells us that he feels it is too close to the heart to preform surgery and he wants to take it to the tumor board in three days and then see us. So three days later I called "to schedule surgery etc...i know I am an optimistic person what can I say?) His nurse, not his PA, his nurse tells us there will be no surgery and she continues to ramble as i tune her out and finally interrupt her to insist she get TB on the phone so he can tell my BF what is going on. He gets on the phone and I ask him to hold on while I get the BF. He quickly tells me "no I will talk to you and you can relate. Then I will see you tomorrow after he has had time to process and gather any questions he might have" At this point I forgot everything I learned in Sunday School and went off on him. To my LC Virgin ears I heard "death sentense". We go see him the following day and he is jolly, optimistic, completely not the same conversation I had the previous day. He is referring us to an Oncologist (his colleague) May 18, 2015 (200 days since abnormal chest xray)Call the Oncologist, only to get another lesson in the big LC by a receptionist who infromed me in her 15 year old voice, that we needed a Medical Oncologist first, her doctor was the Radiation Oncologist. Finally Medical, Radiation, Primary, Surgeon and Pulmonary doctor all on board. We asked the same question to all "who is the captain of this ship" No one stepped up to helm. Thirteen days later, I fired all of them, dragged my BF kicking and screaming 2 hours away to the closest Cancer Institute I could find. 5 PET Scans, 4 CT Scans, 8 Chest x-rays, Two Bronchsocopy's, One Mediatinoscopy, One Port Placement, 1 Bone Scan, 1 MRI of the Brain, 459 needle pokes, 4 Bottles of Jose Quervo and alot of time on my knees- we now have a diagnosis. Stage IIIa Lung Cancer T2N2Mo Right Upper Lobe with all nodes negative. Carboplatin and Taxol are he drugs of choice and Neupogen if his white blood count drops Chemo week one complete- 224 days after abnormal chest xray. Week two starts tomorrow- Lots of questions, lots of worries and concerns, (I left out ALOT from the above otherwise it would take you days to read all the nasty horrible details) I am in shock, i am sad, I am scared, I am mad as hell, I am worried they don't have it right- I think i am gonna need another bottle of Jose- (j/k) Thanks, for reading Sylvia
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