Mally

I have my last chemo infusion at 9am next wednesday and ct scans of chest and abdomen in the afternoon and get results the following Wednesday so that will be a fearful week of waiting ...fingers crossed and prayers please ?
 
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Wondering if folks here can help with advice on drug copay assistance for Xalkori.  Even with insurance it would be costing my mother roughly $4,500/month.  We need some help -- I don't know many people who can afford that so easily.  I see that there are many drug assistance programs out there but I don't know how they help people or if they help people who do have insurance and are not completely destitute (she has small investments, but doesn't own a home or anything substantial she can borrow against).  Is she just supposed to put this on credit cards? How do others do it.  Any advice deeply appreciated! 

Hey Dave! Thank you so much for the update, it is really important to me as a Cancer rookie; but also because you are a "brother in arms". Additionally, I will be starting my chemo/radiation therapy shortly.

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The best of luck to you bigheart and anyone or all of you who will be starting with radiation and chemotherapy. If the doctors and staff explain everything, you'll feel better knowing what is going to happen. It's scary but this too will pass. If you do have questions, always ask because you need to know as much as you can about your cancer.
I had another session of radiation today. Met with the PA. She said that it would be about 3 months after my treatments before they would do any tests to see if the cancer has shrunk. Also, I'll probably need some kind of spray for my throat to make it feel better.
Tomorrow will be my second chemo treatment. Will keep you posted.
So far I still feel okay. Still need the morphine for the pain but that has nothing to do with the treatment.
DragonKing (Dave)

Thanks, Dave for the update. I know that you have probably had many folks tell you that you have been through tougher things than this, the problem with that is I was 18, 19, and 20 years old when I was going through it! But now I am 69 years old and I am wondering where all of that "get up and go", "got up and went!"

Thanks again for the update and take real good care of yourself.

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Wow!
You need to find someone in the medical system to be his advocate.  I'd work the oncologist ("a brilliant man") and call or message his office with the text you've provided.  See if that can get traction.
I don't know anything about PEG tube problems but I think puss is an adverse indicator.  Pain on movement should also be.  A simple wbc blood test ought to show the presence of an infection.  You think his GP would run this test?
I don't have any further ideas.  Anyone else have suggestions?
Stay the course.
Tom

New doctors!

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On Peg tubes , I as a veterinarian have used them a lot in cats that's that were not eating. A Peg tube was placed as a last resort to help these cats . There is a bulb in the stomach that that is supposed to press against the abdominal wall.On the exterior the skin is protected by a patch to keep fluids from entering the body. We don't move the tube at all as body wall movements prevent adhesions. I have had Peg tubes in for 6 months. The situation you describe is serious and in an animal the tube comes out! No excuse. Of course, I just have 41 years of surgical experience and a little common sense. Good luck to your father and you! God bless you!


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Well Dave - Tuesday has arrived.
Hope all goes well with the radiation starting today, and with your weekly chemo tomorrow.
That is how I started my treatments.   Later I was able to have surgery and then more chemo.
I am still here nearly 20 years later  (diagnosed December 1997).  Keep us posted.
 
Donna G

Hi, Dave,
How did your treatment go? Please post an update when you can. We are here for you!
Lauren
--
Digital Community Manager
LUNGevity Foundation

Hey, Dave! You have a few newbies following in your treatment plan and we (I) have made the military travels that you have, so please stay in touch!

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Dave,
And thank you for being a serving soldier!
Persist. Stay on point. Stay the course. 
Tom

Well, I did have my first radiation treatment last Tuesday. It lasted 10 minutes and was a piece of cake.
Then again Wednesday but then right after I went to chemo. That was different. I got a shot, anti nausea, they said, then there were 2 little bags and 1 large bag and it took 3 hours of sitting in a very cold room. No pain going in.  A few hours after I went home, I started having severe pain in my chest. I do have morphine for that, a slow acting pill I take every 12 hours and fast acting that I can take 4 times a day in addition as needed. And I needed it. My cancer is touching my artery and thorax (I think that's what it's called) and I have a hard time swallowing food or even drinks. I've lost 35 pounds in less than 3 months since this all started.
Okay, then Thursday again my radiation, piece of cake.
Then Friday rolled around, no radiation - it seems the machine went down. So now I have to wait until Tuesday and start the week all over again. So far there's been no changes, nor have they taken any test, so I'll keep posting on that. I'm still positive about the outcome. Just wish it didn't hurt so bad, I had always been told cancer don't hurt, don't believe it, mine hurts like being malled by a few bears. May because of the location of the cancer, haven't been told yet why I have the pain.
Will keep posting, still need to know there are others out there who went through it too. Still scared, but no longer of the treatment, more about the outcome.
Happy Memorial Day to all my Soldier Brothers out there!
DragonKing (Dave)
 

So finally!  NO BRAIN CANCER , WOOT!  Surgery is scheduled for the 12th same plan , remove right lung.  VA physiatrist (yep) says headaches are stress related .
Still looking for a home for Amy , my room mate. 

Jeffery,
Well, that is good news!
Stay the course.
Tom

Dani,
You've already been through the mill and Frank's advice for plugging into the ALK Facebook group is a good path for you. 
For most of my 13 years surviving my late stage diagnosis almost nothing in the form of new treatments or procedures emerged. Now fortunately some adnocarcinoma survivors are benefiting from newly discovered targeted treatment. Indeed, new advances arrive almost daily. 
Our organization - LUNGevity - is a big player for targeted therapy R & D among non profits and is unparalleled in survivor support activities. 
Do take advantage of information available on Lungevity.org in the Lung Cancer 101 section and join us at a regional and national survivors summit. And of course, if you have questions, this would be the place to ask. 
Stay the course. 
Tom

Well, here is where I currently stand .. I'm not sure if this is typical, but I will say that it's driving me a little mad..I went to a pulmonary / critical care specialist that I was referred to. Unbeknownst to me, apparently there are two nodules , 1 on each lung . On the right there is a small solid nodule about 4 mm. On the left lung there is a Ground glass nodule that is almost 6 cm. . According to the doctor, the procedure is to wait 3 months and then do a pet scan to see if there is more growth and if they will do a biopsy. He is concerned about my breathing capacity now and says that I will need oxygen and a bipap machine at night as my arterial oxygen is low and my lungs aren't working well when I am laying flat.  I have been short of breath . I'm not sure how to describe the feeling but it literally feels like half of my chest is working, I can kind of feel air going towards the right and the left just feels like nothing.. Strange feeling. Anyhow, I am scheduled for titration , oximetry and a separate sleep study and have been set up with an oxygen company. They also recommend that I Carry an oxygen concentrator in my car. So that's what's happening now, I am basically waiting for the next scan.. I am also feeling exhausted..

Thank-you for your responses , I appreciate each of you taking the time to help .. I have made all three appointments and will address my concerns with each doctor . When I get something more definitive , I'll be back...

Hi, Butterfly,
Just wanted to check in and see how you're doing. Please post an update when you can!
Lauren
--
Digital Community Manager
LUNGevity Foundation

Butterfly,
Do you have a general practice physician?  If you do, I'd try this. Make an appointment with this doctor. Tell the doctor's practice nurse about your hospital admission. Have them call the hospital and get all the test results and specialist consults. You may need to sign a HIPPA form but ensure you call the practice a day before your appointment to ensure they have the reports. Have your GP explain the hospital findings. 
If you don't have a GP, you might call the hospital and ask for a complete copy of your record. It is your record; you paid for it. With the help of Google, you might be able to read and understand some of the stuff yourself. If you have a friend that is a nurse or in Med school, they might help you understand. 
I can understand your anxiety.  A 5 cm tumor is troubling but from your symptom description, the doctors might have been concerned about a heart attack and the cardiologist consult also suggests a heart problem. While a 5 cm tumor is of concern, I don't think it would be the cause of your symptoms. This could be the reason little was said about it. 
But it has been noted now and ought to be diagnosed. You are welcome here and feel free to ask questions. 
Stay the course. 
Tom

Butterfly,
The nodules are significant but small. I'm not a doctor but their presence alone at your reported size does not explain your breathing difficulties. It sounds like your pulmonary specialist is doing the right things. I was diagnosed with sleep apnea in my early 50s and have used a CPAP since. My sleeping improved dramatically. 
Let us know the results of your next steps. 
Stay the course. 
Tom

Hi everyone.
I'm trying to gauge how much I think this is normal or unreasonable. I'm not sure whether I should be trying to push my dad to go elsewhere.

In March, my dad went to the hospital after coughing up some blood. They took a chest x-ray but didn't see anything that looked out of the ordinary.
It didn't clear up, so early April (April 5) he went back and got a CT scan. They found a 5cm mass in his lung. After that, he had a PET scan and an MRI. (Brain clear, only thing that lit up was one spot on his liver)
A 1cm spot on his liver lit up, so they did a biopsy.
May 3rd, liver biopsy. They said no cancer. They wanted to redo it.
May 17th, second biopsy. Negative. They decided they want to do a surgical biopsy to make sure, though.
June 16th will be his third biopsy. They said he'd be in the hospital 4 days and have a recovery time of about 4 weeks.

So, if it is negative again, we're looking at about July before we can actually start treatment on his lung cancer. That's 4 months after he first went in, which seems so long. Who knows how much it is spreading during this time.

He is getting all his care at the VA, despite having insurance. They told him wait times are similar everywhere. Does this sound like a reasonable timeline to you guys? Should I be pushing hard for him to try to go somewhere else? He has good insurance... I am not sure why he chooses to go with the VA, other than he says he feels comfortable there.

Marcie,
Four months does sound long but one months was focused on resolving the liver tumor. Still three months is excessive. My definitive diagnosis took about 6 weeks. 
I think it is important for one to have a choice of treatment centers. If your dad is happy, I wouldn't press him to change. 
Stay the course. 
Tom

My magnesium was checked and it was normal. I'm thinking it could be side effects of the neulasta shot, if not I have everyone baffled

Nichole,
I'm so very sorry to learn of your diagnosis. Twenty-eight and Stage IV, wow!
Sounds like you are lined up for targeted therapy and there have been very promising results from this new treatment mode. You'll have a ton of questions and this is a great place to ask. As you look around the forum, you'll note many of us are long tenured survivors and your conclusion from that discovery is if we can live, so can you. 
Questions? This would be the place to ask.  
Stay the course. 
Tom