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Brother diagnosed with Stage 4 non-small cell lung cancer

shasha712
  • By shasha712
  • Posted June 30, 2009 at 11:29 pm · 37 replies
  • Shared with the public
  • Edited July 3, 2009 at 9:49 am
0 Recommendations

Hello,
I am so devastated right now and I've been reading so much trying to understand the whole concept of this disease and can not believe how serious it is. He was feeling fine until one day he had back pain. Went to back doctor and they recommended an MRI where they saw a mass. He had a tumor and when they got done with all his MRI's and Cat Scans they diagnosed him with Stage 4 small celled Lung Cancer that metastasized with a tumor on the spine and another on the lung and the rib. He is only 41. He is in the picture with me. We live in Las Vegas, but he went to NY for treatment. After seeing an Onychologist here where he was diagnosed, we decided that he would be better off having treatment in NY because that is where most of my family is. I cannot stop crying. We are very close.
I am very confused about these Chemo treatments. All I keep reading is how they kill you instead of the cancer. I am wondering if anyone did any kind of alternative treatments. I read about the Gerson Therapy and another type of Treatment in Reno using salicinium from a Dr. Forsyth. Has anyone heard of this? The doctor in LV said that he would use Zometa (for his bones once a month), Carbo/Tazol/Avastia and RT to spine. How sick will he get from these treatments? I am so confused and nervous for him. His appt. with the Dr. in NY will be tomorrow and the doctor in LV said that he will be surprised if he uses something different. Another thing, when they say it is not curable, but treatable what does that mean?
I read a lot of your post and I am amazed how all of you are so supportive of each other. Your stregnth and inspiration make me feel better. He is young, he is strong and has a lot of faith in God.

Explore topics in this journal entry and replies:

Taxol Cancer Tylenol Non-small cell lung cancer (NSCLC) Brain tumors Melanoma Back pain Avastin Pregnancy Diabetes Pneumonia Chemotherapy Pain Tarceva Lung cancer Bladder cancer

37 replies

Bertha23

Hi Shasha,

I'm really sorry to hear about your brother. What's his name? It is so shocking getting a lung cancer diagnosis and at first you get overwhelmed with all the information and lingo too. It's really hard. I'm glad you found this place, because you'll find lots of people here with small cell and find out it is very treatable - small cell responds to lots of chemos and other treatments. And your brother is so young and strong and his faith will work in his favour fighting this disease.

I don't have small cell (I've got non small cell) but know two people who do. One has been on Avastin for four years, maybe five now, and the other is on Tarceva and doing extremely well also. And, there are many people here who will tell you all about their stories with small cell and guide you along the way.

One thing to remember is to take care of yourself too.

I just wanted to say Hi and welcome, and let you know you'll get good advice and meet lots of great people here! Once the shock wears off, you'll realize there is lots of hope, and that the treatments that are offered to your brother will help him. Chemo sounds scary, but it has come a long way even the past few years and can even wipe the cancer right out so your brother may become NED - No Evidence of Disease!

Kelly

stage4survivor

Hi Shasha,

You've come to the best place on the planet for LC research and support.
What hospital and doc is he seeing for the second opinion?
Please clarify, stage4 would be Non-Small Cell LC, not small cell LC.
So far, you've done the very best, second opinion and finding this site, the rest should be simple.

Best,

G

CKP

I'd just like to mention, even though I'm not a doctor and I don't even play one on TV {{{smile}}} it would be rare that chemo would "kill" such a young and otherwise healthy person.
Treatable but not cureable could be considered the next best thing. I would take that to mean it can be treated as a chronic illness instead of a terminal disease.
This is a very difficult time. I've been on both sides, caregiver and patient, both are extremely trying. However, once you get over the shock I think you will persevere and do whatever you can for your brother.
God Bless,
Cindy

shasha712

Thank you for all your support. I am sorry, but his name is Joe Bertha. G, I don't know too much about this disease and I have been reading alot on it, but the doctor just told me small celled. I have to look up the difference between small celled and non small celled. He will be seeing Dr. Abraham Mittelton in Westchester (Harrison) NY tomorrow. He works out of Northern Westchester Hospital. The Doctor he saw out here in Vegas was Dr. Wu. CPK thank you for that comment, it made me feel so much better. I will think of it as a chronic illness from now on.

shasha712

One more thing,
has anyone heard of immunotherapy? What is it?

nancydoodle

1) Faith and trust in God is key-spend time in church-very peaceful-pray daily and ask others to do so

2)this cancer can be aggressive and even so, treatment can be very successful

3) with someone so young, chemo should not be a big problem

4)ask a lot of questions-trust in dr. -most oncologists are pretty recptive-but you have to have charge of this disease yourself-if he feels sick, get something perscribed for that... etc. Nancy

gemhk

Hello,

You may wish to look into Low dose Naltrexone for an alternative therapy. You can to to LDN website and get most of the information:http://www.lowdosenaltrexone.org/

I have been on LDN for over 2 1/2 years with stage 4B metastatic cancer when radiotherapy and chemotherapy failed. It is not a cure but can control the cancer.

Let me know if you need further information:
http://www.ldn4cancer.com

Deealejo@yahoo.com

Dee

cad1223

Hi Shasha:

So sorry to hear of your brother's diagnosis. I was in your shoes with my dad beginning in May of 2007. He was diagnosed with extensive small cell lung cancer. Small cell is either limited (hasn't spread) or extensive. His had already spread to the liver and bones at the time of diagnosis. He was 60 when we first learned of this. Small cell usually responds well to chemotherapy. No, it won't cure it, but it will usually keep it at bay for a while. Everyone responds differently to chemo and the different types as well. My dad did very well with carboplatin/etoposide, but with taxol, he developed a severe rash and then he had Topotecan and that made him very sick. And then I know a lot of people who are doing very well on Topotecan.

Sloan Kettering in NYC is also a very good place to go if you need another opinion.

Good luck to you and your brother with this battle against lung cancer and I will keep him in my prayers.

Cheryl

RiaRia

hi joe: your brother has three good things going for him, youth, strength and faith! the chemo may have some side effects but will not kill him. my dad responded and felt great after his first rounds of chemo. is northern westchester a cancer hosp? you might want to consider opinion from a major cancer center. wishing you well and will look for your future posts.
maria

duffer18hcp

Sounds pretty much the same as I was diagnosesd with. Devastating at first. Treatments can be the pits, but a small price to pay for life. I started with an egg sized in my lung, which went to the spine, sternum, lymph nodes, rib and left eye. Diagnosed SCLC Ext. Sept 2008. Last weeks CT showed the main tumor in my lung is the size of a dime now. However, last weeks MRI also showed Mets to the brain. Both the Radiologist and Onc. Tell me that it was expected with this cancer and brain radiation will take care of it. Treatment aren't that bad, but there will be good and bad days. You can check my journal for my journey. Feel free to email. with any Q&A. I'll answer what I can. Stay Positive and upbeat.

ION43

Dear Sasha, This site is the place to come for hope, knowledge and comfort. Read as many of the member profiles as possible to learn about the treatments they've received that have or haven't worked for them, remember knowledge is power.
Please check the Richard Bloch Cancer site, it is a wonderful source of information that I wish I had known about when I was first diagnosed. www.blochcancer.org
Wishing the best for your brother and family,
Irene

arise

My husband, 70 yrs old, also has stage 4 lung cancer. He has been thru 3 months of radiation, chemo - carbo platin/taxol, no response. Tumors grew and are more. Now we are on Alimpta. The second chemo of choice when the first does not work. Chemo is not as hard as it USED to be. Your brother will get thru the chemo much better than you may, because all of this is overwhelmingly confusing and difficult. But, I can tell that you are up for it.... You will learn that, in time, you just take one day at a time and work on living in this moment. And loving your good memories and time with your brother. Yes, your life has changed. But, also I have found a wholesomeness in my love for my husband that I never knew before.

My husband is a VERY SPIRITUALLY grounded man, amazingly strong in his faith in the universe and his commitment to beating this cancer. He is a force to contend with. When the doctor gives him bad news about the cancer, John says 'doc, you have your charts" and "I have mine". "I believe you do, the doc says".

So, here is the bottom line. Yes, this sucks. And yes, your love will grow with your brother as I can tell you are standing next to him. But, you now have another job in your life, which probably is already full. So, please take time for yourself - whatever gives you pleasure and happiness - yoga, a hike, spending time reading good books that take you OUT OF THIS REALITY. I am the primary caregiver and have learned this the hard way. Go out and dance. Love yourself first and you will love your brother even more.
Thank you and may peace be with you.....
Arise

MikeS5

Dear Shasha,

I was as devestated as you when my wife of 46 was diagnosed with the same cancer. We went through radiation for the Brain and spine before we could even begin the treatment. We are going for treatment at MGH in Boston where they conducted genetic tests to see if she could find a treatment that would work. Fortunately she had the EGFR mutation which allowed her to take Tarceva as a frontline therapy. It is working however we did get tumor growth in the liver. It has been about a year and she just completed the 6 cycles of chemo in which we started with Cysplatinum but changed over to Carboplatinum. My wife's hearing was damaged but we are hoping that it will come back. The issue with Carboplatinum is that it may affect the blood counts. My wife had to have a few blood transfusions at the end of the major chemo cycle.

She is still on Tarceva which is still keeping the other cancer in check. She is also on a maintenance cycle of Alimta which she goes in every 3 weeks.

I know that the Sloan Kettering Hospital in NY is outstanding. They are cutting edge from what I have heard. I hope your brother gets tested and possible gets added to some of the clinical trials out there. I will send a prayer down to your family.

God Bless,

Mike

stage4survivor

Shasha,

Please find out SCLC or NSCLC, to get the best suggestions here, it's vital info.
I'm very curious, with all the great facilities in NY like NYU, MSKCC, etc, how you chose Westchester?

G

texaszan

You have no idea how much I can identify with your post. My brother had colon cancer at age 41 and died at age 42. Since it had already gone to his liver before it was detected, he was not given any hope. So yes, we did alternative therapies. In fact, he did the Gerson therapy quite seriously. It's very difficult and rather expensive. It has to be done correctly. I believe it helped keep him healthy until his death which sounds like an odd thing to say, but he was not even bed ridden until a few days before he died. He did die, however so the therapy failed. All therapies would have failed because his disease was too advanced, but we were not willing to believe that and we fought hard. In your brother's case I would not advise alternative therapy, I would, however, urge you to seek out trials for him to participate in. At his young age he should be a good candidate for a trial of some of the newer, more promising therapies. My heart goes out to you like you wouldn't believe. Not everyone understand brother/sister love because many siblings don't get along or aren't close, but you are close to your brother as I was to mine and believe me I did just as you are doing, I researched, I read, I took up the fight with all my soul. I lost my fight but you have a better shot at winning yours. Yes, it's a very serious, very dangerous disease but there are survival stories on this board, so keep reading and researching. I wish you the best.

shasha712

I just want to thank all of you for your support and inspiration. I am such at a battle with myself between the conventional and the alternative. I guess I am thinking about his quality of life.
G- My older brother's friend used this doctor when he was diagnosed with Brain Cancer and Melanoma. He is in remission for 17 years. He seems to be a very good compasionate doctor that participates in clinical research. My family is from Yonkers. We can always change if we have to and I already checked out Sloan. Northern Westchester is the hospital he works out of. He does treatments in his office like they do in Vegas not in the hospital. He sees this doctor today so we will see if he has the same protocal as the Dr. in Vegas.

Luv4M-I-L

The 3 things you said is what is going to help him get through this. He is young, strong, and has a strong faith in God. My mom was 42 when she was diagnosed with bladder cancer back in 1982. This cancer was extremely rare especially at her age and a non-smoker, non-drinker. It was our faith in God that got us through a horrible time. The Dr's said it had to be God who healed her because people didn't survive the type of cancer she had.
My mother in law is now battling Stage IV, non-small cell cancer that is in both lungs. She is believing for God to take care of her. She is 80 but thinks she's a lot younger. The Dr. said she's already lived 2 mths past what he expected. The most pain medication she is taking is Tylenol at bedtime and sometimes during the day (1x). I strongly believe that God can and will take care of us is we ask in faith beliving for a miracle. He died on the cross and took the 39 stripes on His back for every sickness and disease. I will be praying for your brother and your family at this difficult time.
Tawni

jean123

My husband had small cell lung cancer in the lung only in 2004 that was treated with chemo and radiation and it disappeared. He tolerated it well and was 20 years older than your brother. It's not easy but he can do it. He went to Sloan-Kettering in NY for the diagnosis and then was treated in Hartford. Check about investigational trials at Sloan.

EddieSD

Hey you BOTH hang in there and kick it. DON'T read about chemo and longevity... you will worry him and yourself to an early grave. He looks to be a strong healthy dude. that helps... and ATTITUDE helps.

KICK CANCERS ASS! Don't let it kick you first!

Chemo Boy - Eddie

angel3023

My baby sister is only 49 and she has stage 4 non-small cell lung cancer. She was diagnosed in November 2008. She has had 3 different kinds of chemo and radiation and nothing has worked. She has 12 tumors in different parts of her body. She is going to try another kind of chemo in a week. her speech is down to a whisper and she is tired all the time. I pray she makes it to her 50th bday in Oct. but this cancer seems to be very aggressive. I live a couple hours away from her but I still find it hard to go visit because it is so devastating to see her like that. She losst all her hair and is swollen from all the meds. Farrah Fawcetts doctor was right, this terrorist known as cancer sends in reenforcements and then your in for the battle of your life, She is trying so hard to fight this but it is just spreading so fast. She is trying to stay hopeful but the reality of it is really starting to take its toll on her. It breaks my heart that she has to go through this. I pray everynight that if its her time to go, the good Lord takes her peacefully. I call her everynight because I sleep better knowing she is ok before I go to bed. My heart has never felt the same since we found out the diagnosis. It effects everybody in the family. As much as we all want to help, there really is nothing we can do but give her all the love we can. It just hurts so much to know she feels so bad.

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