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Sylvia,

 

Loss of voice was one of my symptoms late in conventional radiation.  So was a sore throat.  I used prescribed cough medicine to sooth (a special cocktail made at the pharmacy), off-the-shelf sore throat spray, and Hall's Lemon cough drops.  Lived on the latter.

 

My symptoms lasted for about 2 weeks after radiation then my voice slowly returned to normal.

 

Tom 

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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 :-P

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Sylvia,

 

Of course, I have no idea what the CT scan report terminology means but if you saw a side-by-side comparison and things look improved, then count it as a win.

 

Try and ensure you take care of yourself.  This will be a long haul and when you need a break, find a way to take one.

 

I got the bumps on my chest also and suffered itching.  They are burns from radiation.  I used solar-cane (off-the-shelf sunburn med) and that offered temporary relief.  The docs ought to be able to prescribe that type of medication in a stronger dose.  

 

I am well but have an oncology consultation on the 27th so I'm in the scanziety zone.

 

Stay the course.

 

Tom

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Magic Mouthwash can be a big help with radiation side effects.  There is a lot of great advice above.  Please keep posting and let us know how the appointment goes.

 

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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

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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

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Sylvia,

 

Ah yes, the financial complexities of medicine and insurance are almost as troubling as your husband's disease.  My wife spent hours on the phone trying to understand who was charging for what and when.  She finally figured a way to organize on our end so we could untangle the practitioner-institution-procedure-medication puzzle.  She started a spreadsheet by my "date of service" and entered who and what data including tests ordered and performed, procedures performed and scripts written. Once this spreadsheet was populated, we had a key to understanding the bills and, more importantly, questioning questionable charges.  The key to the puzzle is all bills had a "date of service".  So we could reject those that had wrong dates of service or wrong services performed.

 

Yes a port is an infusion lifesaver but they are delicate things.  Although, a grandson playing with his grandfather is a joyful thing.  Like life, all things cancer come with a good and bad outcome. Install a port to ease access to veins but increase the risk of infection and injury - part of your and his new normal.

 

If comfortable, you might consider sharing details about the clinical trial.  Some here might have relevant information and experience.

 

Stay the course.

 

Tom 

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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

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Sylvia,

 

Up late I see.  First the spreadsheet.  I can't share mine because it has too much privacy related information.  I can tell you the format we used.  Here are the Column Headings at the top of the spreadsheet page we used.

 

Date of Service - - - -  Provider - - - - Procedure

 - - - - Test Ordered - - - - Drugs Prescribed - - - - Co Pay - - - - Amount Billed - - - - Invoice Number

 

Of course we needed to adjust the width of each column to fit the data entered.  But, we became diligent about filling in the data after each visit and asked the doctor, nurse or administrator what procedure code was being used to describe the service performed.  They were more than happy to provide.  Then, when the bill arrived, we could sort by date of service and add the Amount Billed and Invoice Number.  This method was very useful in that we often received duplicate bills and before our spreadsheet we double and sometimes triple paid.  The provider would refund those payments but months after payment.  It was a very useful tool for understanding what we owed and why and most importantly mistakes.  There were many mistakes, over billings and etc.

 

Double blind studies are of course the big downside risk of joining a study.  One rolls the dice in advance and hopes not to end up in the placebo group.  There may be a way your oncologist can petition the drug company or FDA to allow administration of the study drug as a compassionate measure outside of the study.  I've read about this type of petition but it depends on your oncologist and their belief about the efficacy of the drug under study and the dictums of the oncologist's practice.  You need to talk to your doc and sound him or her out.  The first obvious questions is to determine if your doctor believes the experimental treatment has merit.

 

There are emerging new drugs released by the FDA.  For example, I read about this one (Keytruda) today - http://www.wndu.com/home/headlines/New-drug-showing-incredible-results-in-treating-lung-cancer-316049121.html  Of course, these news reports do not contain enough detail to identify the type of cancer treated and relevant conditions.  But pointing out these announced discoveries to your doc may result in an alternative other than joining a study.  

 

I customize Google News to report all news about lung cancer and I can quickly scan this information for new relevant information.  This Google News tool may be helpful to you.

 

Stay the course.

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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

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Sylvia,

 

His concerns - quick answers:

 

1.  No it didn't hurt but I was anxious.  A couple of Doc prescribed xanax made me feel better.

2.  Yes, I did.  Had a plastic shield my wife rigged up to keep the site from getting wet.

3.  Perhaps but I wouldn't swim or hot tub due to the risk of infection.

4.  I have no idea.

5.  I don't understand "once a week for what" with respect to PICC insertion.  Perhaps you mean flushed once a week and if so that jives with my port experience.

 

Your concern

 

1. I believe - note believe, not sure - my chemo strength needed to be changed or adjusted when I went from IV infusion to port infusion.  I recall a change in concentration was required because ports/PICCs were quicker than IV infusions.  So if my chemo brain reduced memory is reliable, then your friend telling you about adjusting the dosage fits with my experience.

 

The study is a tough call.  Lung cancer and the paucity of treatment available makes tough calls even harder.  I'd pray about it, together.  Let it rest a day, then decide.

 

Stay the course.

 

Tom

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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

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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?

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Sylvia,

 

Understand - completely!  Six or perhaps longer years ago, I met a wife caregiver online at a cancer blog whose husband had mesothelioma.  Despite the very lethal nature of his disease, he was calm and unfazed.  She on the other hand was kind of like you.  The only thing I can say with certainty is that people are different and we will react and respond to situations in vastly different ways.  

His calmness in the face of this storm might be a blessing.

 

Both of your lives are on hold.  Hopefully, when the "hold" is removed, your life after diagnosis will be much different than your life before diagnosis.  This much I've learned.  Cancer changes everyone in a close family and surviving means coping with a new normal life.  Mine is not bad; it is just different and so is my wife's.  

 

Maui does sound wonderful.  If you don't chose the study, go there together for 3 months!  We vacationed a lot when we were in between treatments waiting for the "results revealed" scan.  One of these trips was a Hawaiian cruise, in February!  My doctor was kind enough to write a letter explaining my condition and side effect treatments so that the cruise ship doctor or one on the islands would know what was going on if I needed to present myself for difficulty.  Thankfully, we didn't need to use the letter.

 

One more bit of new normal.  When we travel and we've done a lot since diagnosis, we always invest in travel insurance.  We had to use it once and it is a financial lifesaver!  

 

Stay the course, in Maui!

 

Tom

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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

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Sylvia,

 

No need to send me your spreadsheet.  My disclosure of column headings in a previous post ought to be enough insight for those to create their own bill tracking spreadsheet provided they have the expertise.  Of course, it can be done the old fashion way, by hand using ledger paper.

 

Had great news from my oncologist - still no evidence of disease (NED).  We spend a lot of time talking about strategies for mitigating side effects that persist.  He even used the "cure" word but was cautious to point out that statistically, I remain NED till 2017 ( ten years after last active disease) before he could clinically apply the term to me.

 

But I still didn't graduate to the one-time-per-year-consult.  Have a CT scan of the chest scheduled for Jan 2016, then scanziety, till I see my doc late in January.  Remember I said long haul.

 

Stay the course.

 

Tom

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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

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Sylvia,

 

A party - grand idea!  Celebrate every time you can.  Victories are few and therefore sweet indeed.

 

I had, at the time, experimental cyber knife treatment.  It was FDA approved for brain tumors, but I was one of the first approved lung cancer patients for the trial (experimental procedure) or whatever they called it.  I had that strange payment situation also.  There was a lot insurance didn't cover and had to write several large check but it was worth it because it finally fried the tumor that resisted 12 infusions of taxol carboplatin.  So it saved my life.  Cost was a minor inconvenience by that measure.

 

I hope things settle to a dull roar soon.

 

Stay the course.

 

Tom

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