LSU Girls Rock

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

HOPE is that someday soon life will return to normal!

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

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

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

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

I'm not the patient, I'm the caregiver for my wife battling Stage IV. It's been a really rough past few weeks, and this morning my thoughts of the future for my wife were filled with fear of the unknown. We have been making strong efforts to just concentrate and focus on living and enjoying each day by itself. So I thought of some things that will make today a good day, and wrote them down. I wanted to share them with others too, maybe it will lend some perspective.
I get to hear her voice; I get to look into her eyes; I get to hold her hand; I get to kiss her lips; I get to stroke her hair; and I get to tell her "I love you" and to hear the same words back to me.
What else could I ask for in life for today? Yes, today is a good day.

Good Morning Sylvia,
                                  Welcome to LCSC,phew,you have certainly been through the mill,what a story.Sorry to hear of all your BF problems,I think most of us here have also had their ups and downs.
     Your BFs multi-disciplinary medical team have now got to the stage of collating all the different strands of reports and evidence,they will now put to-gether an individual treatment plan that will provide the best outcomes for your BF.I have to go back nearly seven years to that point in time when I was going through the trauma of appointments,waiting for test results and what will happen next as my treatment plan is put into effect.I am a natural born worrier and certainly despite being a Scot,not a Braveheart,I worried about the chemo,will my hair all fall out?will it make me nauseaous,surgery - will it be excrutiatingly painful and leave me a breathless invalid?,what if all this dos'nt work?.these and I am sure a myriad of other worries filled my overactive brain.
     I cannot promise you that my experience would have been as for everyone,but I really sailed through the lot,my hair did'nt fall out,I did'nt get nauseaous,to say my surgery was painful would be a complete exaggeration,more an ache for a couple of weeks which inperceptively just faded away.Well here I am 7 years later,enjoying life to the full.
        A saying that gave me food for thought at the time was "Worry is like sitting in a rocking chair,it gives you something to do but it dos'nt get you anywhere".I know its difficult,but I found that as time passed and my treatments were completed,my anxieties began to subside.
    Please pass onto your BF my kindest regards,look after yourself too,dont be shy in asking friends and family for support when you need it.Please do keep us informed how things are progressing,we are here you support you,so you should never feel you are alone.
   Best Wishes.