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CANCER treatment. HELP please

Old 03-10-2018, 05:54 AM
  #21  
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Originally Posted by OldPete View Post
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.

Thank you Pete.
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Old 03-10-2018, 05:54 AM
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Chris, good luck in your fight. Some good advice here regarding the larger treatment centers. When my wife was diagnosed with stage 4 breast cancer, we first went to Stony Brook which is a large teaching hospital. They were not very encouraging to say the least. Some phone calls were made and her case was taken up by Sloan Kettering. She entered several clinical trials and so far,so good.
She underwent several surgeries and was receiving Chemo every week. They gave her several anti nausea drugs and she hated all of them because of the side effects. She resorted to edible marijuana, and sometimes just smoked it to alleviate the nausea, sleeplessness and lack of appetite. I realize yours are lung issues so you may be uncomfortable smoking weed, ditch the meds for a time and try edibles. It might help.
Her best friend is suffering from a similar lung cancer advanced stage with similar metastasis. She got into Sloan and is making amazing progress. Her Dr, is Matthew Bott. He also treated my Aunt as well as myself. I have a large non cancerous mass in my right lung. Maybe an email would be in order.
Godspeed my friend, please keep us informed as to your progress.
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Old 03-10-2018, 05:58 AM
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Chris
I am sorry to hear of someone dealing with that situation. I have been dealing with a pretty much identical situation since the end of October. I am with you on fighting to spend as much quality time with family as possible.
I was diagnosed after loss of feeling and then function in my right arm and it was starting on my right leg. I did the 2 weeks of radiation the first of November and started Chemo just before Thanksgiving.
They started me on Keytruda (Immuno); Alitma and Carboplatin every 3 weeks. Keytruda is the one everybody says is the best. I am also a smoker until December and was told there was a targeted Immunotherapy that wouldn’t work for me. MRI in January showed radiation had shrunk some of the Brain tumors and I have 85 to 90% use of my right arm without taking steroids. Radiation Dr. decided to see what the chemo did before doing more radiation.
After 4 chemo treatments CT scan showed no effect on the Lung tumors. They have switched me to Taxatere once a week for 3 weeks and 1 week off. I start round 2 of that Monday. My Oncology office does have someone that does financial assistance and got me reduced copays on a couple of the drugs.
As far as the nausea meds I have the same 2 and was told to take as needed. They only gave me 10 of the Odansetron and said to use when the other wasn’t working. Fortunately I haven’t need to take either.
I too will apologize for the long post. I don’t typically broadcast my life in public but decided to respond to you on the forum in case it could help others. I will keep you in my prayers as we continue this battle. If I can help more ask or PM for a phone number if you want to talk.
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Old 03-10-2018, 06:00 AM
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Get a second opinion ASAP as others have indicated. Go to a large specialty hospital such as MD Anderson or other. Very sorry to hear what you are going through. Having walked both of my parents through this (different cancers), I can tell you as will others, your attitude you approach this challenge with moving forward plays a large role.
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Old 03-10-2018, 06:01 AM
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Get on a plane and go to Houston. MS Anderson
Good luck
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Old 03-10-2018, 06:02 AM
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Chris, like most here, I'm no expert in this field, but I would recommend a cancer specialty center. Don't be afraid to seek a second or third opinion, regarding your treatment. My heart goes out to you and your family. I pray for you and hope you get the outcome, you are looking for.
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Old 03-10-2018, 06:02 AM
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Originally Posted by pwrhd View Post
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.
Thank you!
The biopsy was checked for the alphabet mutations but when I asked the Dr. about genetic testing he said they did not get enough to test. He said they would have to do another biopsy after chemo if I wanted the imunotherapy. I have been researching on the Targeted Oncology website and that is where I found out about the smoker vs non-smoker issue with treatment.

My WBC was 10k before chemo so they said I would not need nulestra this time and there was a cheaper treatment that the INS would approve but I have to show a dire need before approval. I'm OK with that if it works but I plan to get blood tested more than once every three weeks.

Last edited by Barnacled; 03-10-2018 at 06:10 AM.
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Old 03-10-2018, 06:03 AM
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Keep the faith

my best friends father had stage 3.5 lung cancer 8 or9 years ago. Went thru the Chemo radiation and is still with us today

Good luck with your treatments and thanks for posting
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Old 03-10-2018, 06:16 AM
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Stay strong.
Praying for you.
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Old 03-10-2018, 06:21 AM
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Chris,

First, as everyone here has said, keep up the fight and wish you well. Given your location, I would reach out to Moffitt in Tampa Bay. Moffitt is one of the 9 original NCI specialty cancer centers (on similar level to Sloan Kettering in NYC and USC Norris Cancer Center in Los Angeles). While UAB does have a comprehensive cancer center, I would reach out to Moffitt (given its proximity).
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Old 03-10-2018, 06:35 AM
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You all are braver then me. I seen suffering and death for 35 years…and well I don’t think my opinion is needed here.

I can pass on some realistic advice.

Don’t deny that your life could end. Pray for the best but prepare for the worst.

Get you affairs in order with you wife and family and god. It’s not giving up but it is being realistic. And it will relive some of the stress you are going through knowing that you’ve said what’s needed.

Get with your wife and make sure all your paperwork, will, life insurance, etc is up to date. Sick people have a way of missing stuff, like life insurance payments. Along those lines make your wife power of attorney.

Think about how much you want to put yourself through. If you want to fight for your last breath, go for it. If you don’t want the suffering to be too much, set up a meeting with hospice and palliative care.

Be a little selfish and don’t worry or fuss about your family helping too much, it’s a way they can show they love you.

Listen to the doc’s but really listen to that voice in your head, it’s usually right.
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Old 03-10-2018, 07:15 AM
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america has lots of money for people in foreign countries but not enough for the care of our own old and/or sick
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Old 03-10-2018, 07:21 AM
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Sorry to hear about all this Chris.

I can't say more strongly this is not something for the locals. Cancer has touched our family several times with awesome results. We went to Johns Hopkins in Baltimore. This is the time you need the resources of a huge teaching facility. JHH is one of the very best in the country.

A the wife of a close friend is 14 years post op with brain cancer. It was a very rough road, but she came through it to see her children grow. She too was treated by Johns Hopkins.

One other thing since travel and lodging can add up. The American Cancer Society has a group of facilities called Hope House. Basically like a nice hotel, with communal kitchens and common areas. They have them near many major cancer treatment centers. They are completely free - if I remember correctly the only requirement is being treated for cancer, and needing to stay more than 3 days. My father stayed in the one on Baltimore for six weeks. They even had a shuttle back and forth to the hospital that ran all day.

There is no charge, but we send them a nice donation every year. Beyond the accommodations there is a lot of support being surrounded by people who understand what you are fighting.

Stand tough. The best medicine is the will to fight.
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Old 03-10-2018, 07:25 AM
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We are fortunate and are not dealing with this problem; my prayers are with you. If I were I would be at a hospital that specializes in cancer treatment. MD Anderson has already been mentioned but there's also Moffitt Cancer Center in Tampa. The best treatments gets the best results.

God bless and good luck.
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Old 03-10-2018, 07:33 AM
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Originally Posted by dtl66 View Post
Chris
I am sorry to hear of someone dealing with that situation. I have been dealing with a pretty much identical situation since the end of October. I am with you on fighting to spend as much quality time with family as possible.
I was diagnosed after loss of feeling and then function in my right arm and it was starting on my right leg. I did the 2 weeks of radiation the first of November and started Chemo just before Thanksgiving.
They started me on Keytruda (Immuno); Alitma and Carboplatin every 3 weeks. Keytruda is the one everybody says is the best. I am also a smoker until December and was told there was a targeted Immunotherapy that wouldnít work for me. MRI in January showed radiation had shrunk some of the Brain tumors and I have 85 to 90% use of my right arm without taking steroids. Radiation Dr. decided to see what the chemo did before doing more radiation.
After 4 chemo treatments CT scan showed no effect on the Lung tumors. They have switched me to Taxatere once a week for 3 weeks and 1 week off. I start round 2 of that Monday. My Oncology office does have someone that does financial assistance and got me reduced copays on a couple of the drugs.
As far as the nausea meds I have the same 2 and was told to take as needed. They only gave me 10 of the Odansetron and said to use when the other wasnít working. Fortunately I havenít need to take either.
I too will apologize for the long post. I donít typically broadcast my life in public but decided to respond to you on the forum in case it could help others. I will keep you in my prayers as we continue this battle. If I can help more ask or PM for a phone number if you want to talk.
DTL: Never apologize for a long response especially one that is exactly what the OP was looking for. Sorry to hear of your plight and I'm sure it will all work out. We and many we know have been touched by the Big "C" and if you haven't you are very fortunate.

My chemo was 5 days straight, then off for two weeks for the "medicine" to do it's thing and week 3 recovery just in time to do it all over again. One of them was actually called 5 FU and when I noticed it I gave the nurse a bit of a hard time telling her boty did they name that one right. She had never given it a thought in all her years and we shared a good laugh together about that...

Stay strong, keep the faith, and I will be asking the big guy upstairs to be looking out for you all...
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Old 03-10-2018, 07:40 AM
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My mom has been fighting small cell lung cancer for a year and a half. It was stage 4 when they found it. She now has 2-3 months left.
She has tried every chemo available. She also had radiation treatments on her head and chest.
She went into remission only once during the entire process. It lasted three months.
I will ask her if she took the meds you posted above.

Non-small cell is more treatable than small cell.

You can do this. Stay positive, follow their directions, eat healthy and excercise if you can.
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Old 03-10-2018, 07:43 AM
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Originally Posted by yakmatt View Post
You all are braver then me. I seen suffering and death for 35 yearsÖand well I donít think my opinion is needed here.

I can pass on some realistic advice.

Donít deny that your life could end. Pray for the best but prepare for the worst.

Get you affairs in order with you wife and family and god. Itís not giving up but it is being realistic. And it will relive some of the stress you are going through knowing that youíve said whatís needed.

Get with your wife and make sure all your paperwork, will, life insurance, etc is up to date. Sick people have a way of missing stuff, like life insurance payments. Along those lines make your wife power of attorney.

Think about how much you want to put yourself through. If you want to fight for your last breath, go for it. If you donít want the suffering to be too much, set up a meeting with hospice and palliative care.

Be a little selfish and donít worry or fuss about your family helping too much, itís a way they can show they love you.

Listen to the docís but really listen to that voice in your head, itís usually right.

Yak: Not braver my friend. BUT, when you hear the last words you ever want to hear, "You have..." you have two options. Roll up in a ball and quit or fight to see another day. I and most human beings I would think would choose the latter I'm sure.

Here's why...

One night my older daughter rolled in from a night out with friends. She could have gone directly to bed (as it was about 2AM) but instead, tiptoed into my room, leaned over, kissed me on the cheek and whispered, "Daddy, I love you".

If that doesn't want to make you want to live I don't know what does so it's a combo of getting the right treatments and truly having the will to survive. So far I am fortunate but don't think a day goes by that I don't cherish EVERYTHING good or bad because I could be taking the permanent dirt nap and I'm just not ready to check out yet...
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Old 03-10-2018, 08:13 AM
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Originally Posted by Barnacled View Post
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.
Google CRISPR they are having outstanding results using this new treatment for small cell cancer patients.

Good luck Chris stay strong.

Thoughts and prayers to you family and friends.
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Old 03-10-2018, 08:21 AM
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Iím not sure about the chemo treatments, but going to a cancer center is best. In terms of the nausea treatment, if the ondansetron does not keep it controlled ask for Aloxi or Palonosetron. Itís the best, but more $, and thatís why the ins company will fight you a little on it.
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Old 03-10-2018, 08:32 AM
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Originally Posted by yakmatt View Post
You all are braver then me. I seen suffering and death for 35 yearsÖand well I donít think my opinion is needed here.

I can pass on some realistic advice.

Donít deny that your life could end. Pray for the best but prepare for the worst.

Get you affairs in order with you wife and family and god. Itís not giving up but it is being realistic. And it will relive some of the stress you are going through knowing that youíve said whatís needed.

Get with your wife and make sure all your paperwork, will, life insurance, etc is up to date. Sick people have a way of missing stuff, like life insurance payments. Along those lines make your wife power of attorney.

Think about how much you want to put yourself through. If you want to fight for your last breath, go for it. If you donít want the suffering to be too much, set up a meeting with hospice and palliative care.

Be a little selfish and donít worry or fuss about your family helping too much, itís a way they can show they love you.

Listen to the docís but really listen to that voice in your head, itís usually right.

This is some great advice. It boils down to you being in control of the things you can control in the moment. Do remember....by doing these things it does not mean you have thrown in the towel, itís you continueing to take care of yourself and your family.

While this place can be a bit contentious at times and bring the worst out in people.....it is threads like these that show how the members can really step up to help a fellow THTíer out. OK....enough of the sappy talk.
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