Notices
Like Tree554Likes

CANCER treatment. HELP please

Old 03-10-2018, 04:17 AM
  #1  
Senior Member
Thread Starter
 
Barnacled's Avatar
 
Join Date: Jun 2010
Location: Lower, AL
Posts: 5,155
Default CANCER treatment. HELP please

I haven't posted here in a while but I really need the vast knowledge and no BS this site is best for.

I have stage 4 lung cancer metastasized to the brain. It is a non-small cell type and DRs have been using radiation to the brain for the last two weeks. I had my first chemo yesterday.
I know there is no cure for me and the best hope is to prolong my life a little. I am going to fight to stay alive as long as I can both to help my family with all the crap I'm leaving them with and to love on 'em while I can. I have a wife, two daughters, four young grandkids.

We have insurance through my wife's job and are fortunate to not have to pay full costs but the $$$$ are really up there.

As the Pats took the field on Superbowl sunday I suffered a gran-maul seizure lasting 45 mins. During my hospital stay a biopsy was done on a growth on my lung that showed the cancer. They did not do genetic testing on the tumor because I was a former smoker. Without this testing I will not be able to get targeted imunotherapy. Studies I found have shown that this type of treatment works very well even in former smokers and the practice of discounting them should stop.

The chemo: There are different drugs and one I am getting is a once every 3 weeks type as opposed to once week. This treatment also includes a bone marrow "stimulant" to help produce white blood cells. I had to fight the Dr for this treatment because they assumed I would not want to pay the $2200 co-pay. I pointed out to them that I would hit our out-of-pocket limit of 13K before the first treatment and that co-pays end and the insurance covers 100% at that time. Dr agreed and said see you on Friday. I get to the treatment and was told the extra supplement is denied because of cost.

Nausea meds: ODANSETRON and PROMETHAZINE. The side effects are scary to put it mildly. If anyone has knowledge of these I would GREATLY appreciate any advice. I was told to take it regardless of feeling nausea or not.

I apologize for the long and morbid post....I'm scared and looking for any advice from outside the insurance/Dr team I have.

thanks, chris
crossthread, porcha and DocGil like this.

Last edited by Barnacled; 03-10-2018 at 04:22 AM.
Barnacled is offline  
Old 03-10-2018, 04:24 AM
  #2  
Senior Member
 
Join Date: Sep 2009
Location: Central Florida
Posts: 300
Default

Sorry to hear that. I'm no doc so I don't have any advice, but I wish you the best of luck.
crossthread and mikeloew like this.
Joe Lane is offline  
Old 03-10-2018, 04:28 AM
  #3  
Junior Member
 
Join Date: Sep 2017
Posts: 6
Default

Do what your doctor's tell you! Go to a bigger cancer only facility! Keep a positive attitude exercise as much as you can! Do not give up! Good luck! I will say a prayer for you! I am a cancer survivor!
Enorth is offline  
Old 03-10-2018, 04:39 AM
  #4  
Senior MemberCaptains Club MemberPLEDGER
 
Join Date: May 2005
Location: Point Pleasant NJ
Posts: 1,333
Default

Chris: Although we don't know each other please don't give up the fight. You have joined a club in which only other cancer patients can understand. I went through throat cancer (actually a soft tissue lump in my throat which my doctors told me was usually associated with heavy smoking and or drinking which I did neither) most of 2016 and dealt with Chemo for 6 weeks, a bout of MIRSA which landed me n the hospital for 10 days probably from the port in my chest, and then 7 weeks of daily radiation M - F.

It kicked my ass but Im here nearly 17 months later and going strong and full remission so keep the faith as it can happen for you. God has a funny way of working and sometimes it takes something like this to put it all in perspective but I truly believe that I am here by the grace of God and please understand Im no bible toting man. Just one with faith and the will to live to one day see my daughters marry and have grand kids.

I never read one thing about my cancer but instead put my head down, put faith in my doctors AND GOD, and kept a sense of humor no matter how bad I felt or how grim things were. Its all about the mindset and the nurses told me they never saw someone like me come through and never seemed down. For whatever reason, laughter seems to be a real medicine so don't underestimate it.

I wish I could help you with your real questions but unfortunately I cannot. I simply wanted to say don't give up the fight and take it one day at a time brother...

In the words of Tom Hanks in Castaway...
Attached Images  
Surfside is offline  
Old 03-10-2018, 04:40 AM
  #5  
Senior MemberCaptains Club Member
 
Join Date: Jun 2003
Location: Charlotte / Southport
Posts: 3,256
Default

I have nothing to offer to your question, but I will say a prayer for you my friend....
Lprizman, Barnacled and chrisbtr like this.
Weekend-Hooker is offline  
Old 03-10-2018, 04:53 AM
  #6  
Senior Member
 
Lprizman's Avatar
 
Join Date: May 2009
Location: RI
Posts: 5,412
Default

Chris I have zero info.

What I have is prayer & positivity coming your way

Need to bullshit..feel free 1-401-300-6548

Enjoy today...tomorrow will be better!!!

Lance
Lprizman is offline  
Old 03-10-2018, 04:57 AM
  #7  
Senior MemberCaptains Club MemberPLEDGER
 
Join Date: May 2005
Location: Point Pleasant NJ
Posts: 1,333
Default

Originally Posted by Enorth View Post
Do what your doctor's tell you! Go to a bigger cancer only facility! Keep a positive attitude exercise as much as you can! Do not give up! Good luck! I will say a prayer for you! I am a cancer survivor!
This ^^^ Go to a bigger center and see what they say. Its your life and we need you to stick around for a while so we can trade war stories while sitting on the boat if you know what it means so don't waste time. It can't hurt to get a second opinion...
Lprizman, Barnacled and aarrowads like this.
Surfside is offline  
Old 03-10-2018, 05:10 AM
  #8  
Admirals ClubCaptains Club Member Admiral's Club Member
 
Join Date: Apr 2007
Posts: 1,294
Default

I have some firsthand experience with a deadly Stage 3 cancer and being given 50/50 of making five years.

My advice is go see a doctor at a major, university-affiliated teaching hospital - even if you have to fly there. They are likely to see the most cases and are also most likely to have the most trials going on and the greatest ability/willingness to be flexible on payment.

Research the ones that are most active in your specific cancer, find a doctor you want to see and email him/her directly. Be brief but don't be shy to plead a bit. I have been amazed at how even the busiest of doctors will take the time to respond with advice and/or help.

I'll be praying for you and your family. Peace.
nicecast is offline  
Old 03-10-2018, 05:22 AM
  #9  
Senior Member
 
Join Date: Jul 2014
Location: Savannah, GA
Posts: 113
Default

Hate to hear this Chris.

I can help but admittedly I'm not sure what you are asking.

We always check for targetable mutations regardless of smoking status because you never know.

The bone marrow stimulant may or not be necessary so don't sweat that.
Lprizman and Barnacled like this.
pwrhd is offline  
Old 03-10-2018, 05:29 AM
  #10  
Member
 
Join Date: Jun 2007
Location: CT
Posts: 66
Default

Iím a throat cancer survivor it wasnít easy I had same problem with the cost of these drugs not havin enough insurance and they come out and tell you that u donít have enough money to get the correct medicine thatís bull shit no one should be denied the chance of life because they donít have enough insurance or money itís just not fair these insurance companies can have little or no compassion unless your loaded with cash
But as far as this cancer goes get another specialist if possible go to large city that specializes in your specific type they have made a tremendous advancement in the lung cancer area as well as brain
I unfortunately had 33 radiation treatments and 6 chemo treatments I could not eat for almost 3 years I was on orgain a protein shake thatís loaded with calories I used to inject into feeding tube that I didnít want but glad my wife made me get because I lost 70 lbs without eating so this protein shake is going to keep u alive also think about the medical marijuana it gave me energy and a desire to eat I just lost my insurance after 29 years my wife was let go from her job in the insurance industry it must have been all the bills from the cancer treatments I still require to see my team of doctors that I could no longer afford
Please feel free to contact me with anything I could do for you I have a nurse navigator sheís the best thing going she has allot of connections
Iím sorry you have to go through this with your family I know how it feels but you can beat this
Surfside and Lprizman like this.
fishman94 is offline  
Old 03-10-2018, 05:29 AM
  #11  
Admirals Club Admiral's Club Member
 
Join Date: Apr 2009
Location: Florida
Posts: 16,347
Default

I wish I could help more... if you ever need to talk send over a PM with number.

My best advice:

1) Listen to above, find a center. I'm partial to MD Anderson, but there are others.
2) Never accept what insurance tells you - they're scum.
3) NEVER STOP FIGHTING!!!! You have two kids and grandkids, and a wife! You can do anything!! Always think about how much you have already done!

With love,
Pete
OldPete is offline  
Old 03-10-2018, 05:34 AM
  #12  
Admirals Club Admiral's Club Member
 
Join Date: Oct 2010
Location: Weymouth, Ma.
Posts: 1,932
Default

Are you asking for alternative treatments or treatments you can use in addition to your current treatments? There are many.
trackah likes this.
hottoddie is offline  
Old 03-10-2018, 05:34 AM
  #13  
Senior MemberCaptains Club MemberPLEDGER
 
Join Date: Nov 2003
Location: Dartmouth MA
Posts: 5,752
Default

I wish you the very best. I know they have made tremendous strides in cancer treatment so hopefully one of these hospitals that specialize in your form of cancer can offer hope. Good luck to you and your family.
Lprizman and Barnacled like this.
mymojo is offline  
Old 03-10-2018, 05:35 AM
  #14  
Senior Member
Thread Starter
 
Barnacled's Avatar
 
Join Date: Jun 2010
Location: Lower, AL
Posts: 5,155
Default

Thanks for the replies. We have a case worker from the INS co. that was unavailable Friday. I hope to reach her Monday. My fear is that now the INS has to pay 100% they are going to go the cheapest route possible. And when I bring these questions to my Oncologist he has the "o shitz, we got caught" look in his eyes.

I can't give up...not an option.
Barnacled is offline  
Old 03-10-2018, 05:36 AM
  #15  
Senior Member
 
Join Date: Jul 2011
Posts: 457
Default

Seeking a second opinion at a major cancer facility would be a good idea. Some travel may be needed. A colleague of mine took his wife from Virginia to a cancer center in Houston (MD Anderson) and got good results.

Good luck! Keep on fighting!
Lprizman and Barnacled like this.
DrDanH is offline  
Old 03-10-2018, 05:37 AM
  #16  
Senior Member
Thread Starter
 
Barnacled's Avatar
 
Join Date: Jun 2010
Location: Lower, AL
Posts: 5,155
Default

Originally Posted by fishman94 View Post
Iím a throat cancer survivor it wasnít easy I had same problem with the cost of these drugs not havin enough insurance and they come out and tell you that u donít have enough money to get the correct medicine thatís bull shit no one should be denied the chance of life because they donít have enough insurance or money itís just not fair these insurance companies can have little or no compassion unless your loaded with cash
But as far as this cancer goes get another specialist if possible go to large city that specializes in your specific type they have made a tremendous advancement in the lung cancer area as well as brain
I unfortunately had 33 radiation treatments and 6 chemo treatments I could not eat for almost 3 years I was on orgain a protein shake thatís loaded with calories I used to inject into feeding tube that I didnít want but glad my wife made me get because I lost 70 lbs without eating so this protein shake is going to keep u alive also think about the medical marijuana it gave me energy and a desire to eat I just lost my insurance after 29 years my wife was let go from her job in the insurance industry it must have been all the bills from the cancer treatments I still require to see my team of doctors that I could no longer afford
Please feel free to contact me with anything I could do for you I have a nurse navigator sheís the best thing going she has allot of connections
Iím sorry you have to go through this with your family I know how it feels but you can beat this
Thank you and I will contact you.
Lprizman likes this.
Barnacled is offline  
Old 03-10-2018, 05:50 AM
  #17  
Admirals Club Admiral's Club Member
 
Join Date: Apr 2009
Location: Florida
Posts: 16,347
Default

Originally Posted by Barnacled View Post
Thanks for the replies. We have a case worker from the INS co. that was unavailable Friday. I hope to reach her Monday. My fear is that now the INS has to pay 100% they are going to go the cheapest route possible. And when I bring these questions to my Oncologist he has the "o shitz, we got caught" look in his eyes.

I can't give up...not an option.
IMHO, This is a key reason to go to one of the better facilities. Frankly, they know how to play the game with these scum insurance companies...

Don't be afraid to travel for good care.
Lprizman and TheBigWhit like this.
OldPete is offline  
Old 03-10-2018, 05:53 AM
  #18  
Senior Member
Thread Starter
 
Barnacled's Avatar
 
Join Date: Jun 2010
Location: Lower, AL
Posts: 5,155
Default

Originally Posted by hottoddie View Post
Are you asking for alternative treatments or treatments you can use in addition to your current treatments? There are many.
I'm looking for anything at this point. I can control what foods I eat and have adjusted my diet but I'm trying now to get the better treatments that are available here right now. We won't know if treatments are working for a while and I have researched some alternatives. MD anderson is where I will go if we do.
Lprizman likes this.
Barnacled is offline  
Old 03-10-2018, 05:53 AM
  #19  
cjd
Senior MemberCaptains Club Member
 
Join Date: Oct 2001
Location: Severna Park Md
Posts: 4,198
Default

Chris,

Nothing to say but keep up the fight. You have so much to be proud of with those kids and grandkids. They know you hung the moon.
Lprizman and doobs41378 like this.
cjd is offline  
Old 03-10-2018, 05:53 AM
  #20  
Admirals Club Admiral's Club Member
 
Join Date: Jan 2009
Location: Naples, FL
Posts: 1,146
Default

No advice only stay strong and prayer sent to you and your family.
Lprizman likes this.
bunger79 is offline  

Thread Tools
Search this Thread
 
  • Ask a Question
    Get answers from community experts
Question Title:
Description:
Your question will be posted in: