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Stage 4 adenocarcinoma with mets to brain

DCG1956
Posts: 4
Joined: Jan 2012

My 56 year old mother was recently diagnosed with stage 4 non small cell lung cancer adenocarcinoma. Unfortunately, she was in between jobs at the time of diagnosis and did not have health insurance so getting her treatment is extremely difficult since places are actually turning her down. My father passed away years ago and I have no siblings but I am her primary caretaker. I am in my last year of college and do not live at home so coming home every weekend and balancing school and my mothers diagnosis have been extremely difficult. We went to an oncologist who gave my mom 4 months (but she is unaware). She is in extremely high spirits and shows no signs of lung cancer. We found out her diagnosis because she was having extremely bad pain in her lower back for about 3 weeks and it got so bad we eventually had to take her to the ER where they found the cancer and found out she had a compound fracture in her spine due to its spread. She has been in pain for about a month now but is on a bunch of pain medications. They said the lung cancer has spread to the lymph nodes in her chest, her spine, left adrenal gland, liver and brain. The oncologist also told us that there is only one type of chemo for this type of cancer and that it usually doesn't respond well. Is this true? I cannot handle losing my mother she is my life. Unfortunately she has been losing weight and is bed ridden for about 90% of the day because of the pain from her back injury so I know her lifestyle might not help. I don't know what to do! Any ideas/help/etc. would be greatly appreciated.

myparentsdaughter
Posts: 18
Joined: Jul 2011

hi dcg,

I'm so sorry you have to go through this, especially at such a young age. I totally understand what it feels like to be in your shoe. I'm about 10 years older than you, lost my mother 2 days before Christmas 2010 to cancer and my dad was diagnosed with stage 4 adenocarcinoma in April. My sister is only 21 years old trying to complete her business degree. I don't know how she did it when my mom was sick and now my dad....

Are there any government assistance program that could help your mom with her medical bills? I'm posting from Canada, where we have free health for a small monthly premium for those who are unemployed. There are other government assistance agency and blue cross that provide health coverage for the handicapped and those in palliative care. I know the words "handicapped' and "palliative" are something that we don't want to believe. However, stage 4 cancer is considered very serious and sadly is...palliative. So I honestly believe if you do your research or talk to a social worker, you should be able to qualify for some sort of assistance. At least this what I hope for you.

I know I mention palliative a lot and honestly that word doesn't sit well with me when I heard it used on either of my parents. I refuse to believe he's in this stage and I can tell you one thing. No matter how bad of a shape cancer patient is in in regards to symptoms such as pain, lack of energy, fluid built up, etc... They can be eliminated with the right chemo for the patient. When my dad was first diagnosed, he was on 2 types of chemo (sorry I forget the names). His qualify of life was wonderful and normal. He had a tumour that shrunk by 30 %. Then he went on traceva as my sister knows strongly believed it was a better alternative. He tested for the mutation and was on it for 3 months. He seemed to be doing well at first. So I decided to go back home (I live in another province) and his condition started to deteriorate. He had fluid built up in his lungs, which he eventually had to have a drain put in him permanently. He was so fatigue, he could barely walk. He also took pain meds. He lost a lot of weight and he was a already a small man to begin with. It was so tough when I came home in November and saw how much he's changed in such a short period of time. Anyhow, clearly traceva did not work for him. So now he's on altima and his symptoms are getting so much better. He walks way faster than when I first got back in Nov. He's no longer coughing as much, no lung fluid in the last 5 weeks. He used to force himself to vomit so he could get the phlegm out and no longer has to do that. The lump in his throat is gone. Although his recent ct shows no change but his symptoms are so much better.. Now he plans to travel to Paris after his next treatment 3 weeks from now.

sorry for such a lengthy message, my point is...don't believe in the numbers your moms doc tells you. Your mom can get better and believe she will. She has the most important medicine you mentioned, her high spirits. Make sure you ask the doc everything you need to know. Throw him a whole bunch of chemo drugs for her type of cancer you know that are out. Ask for her to get tested for mutation.. Whatever chemo he decides to give her, make sure you understand the side effects. I always try to keep a mental note of my dads symptoms and tried to compared it to his condition before his treatment.

I hope all goes well for you and your mom. Don't give up. Your mom needs to advocate for her. She's very lucky for having such a wonderful daughter. Enjoy the time you spend with your mom.

nix

DCG1956
Posts: 4
Joined: Jan 2012

nix-

Thank you so much for your kind words. I am so sorry to hear about the loss of your mother. I send my regards to your family. I am glad to hear your father is doing better. I'm not really good at all these medications yet but I will definitely keep in mind the ones your referred to above. It's nice to hear your father plans to travel. I feel like that will be really good for him. I know the medications play a big role in survival but your lifestyle definitely plays a huge role! As for government assistance, I'm from New York and they offered us Medicaid which is a health insurance program for people with low incomes. Unfortunately, I don't think my mom makes the cut but we applied anyway. Since my last post I have learned about a charity program which covers 40% of the costs. I tried to tell my mom all our assets will most likely be wiped out but there is no price on her life. I'm hoping for better news in the next few days because nothing ever goes on during the weekends when I have time to gather my information. The waiting is killing me and my mom is getting more agitated because we still haven't found a doctor to treat her. Since her visit to the ER where we originally found out all our information my mom got an oncologist at the hospital who refused to treat her without insurance. I never knew treatment could be refused but I do now. I hope for the best for her and your father. I guess time will tell. Thank you so much for your help!

myparentsdaughter
Posts: 18
Joined: Jul 2011

it's disheartening to hear a doctor would turn their back on a patient because the patient has no insurance. Don't give up, I'm sure you and your mom will find a good oncologist in your area. One thing I learned from cancer is when we need assistance in whatever shape and form, we gotta put our pride aside and just apply and ask. I helped my dad apply for govt assistance to help with living expenses and his home care nurse automatically helped apply for more benefits to cover prescriptions. We are lucky. There might be church groups and charity programs that could help your mom find a doctor too. Just be afraid to ask.

You and your mom are in my thoughts. Please take good care of yourself and try to continue on your schooling. Your mom would want to see you succeed :-)

alliball
Posts: 11
Joined: Feb 2012

Hi
My mum has non small cell lung cancer, adenocarcinoma, I believe they refer to her tumour as T4 so it's fairly serious. She has small deposits in her left lung and a large tumour in her right as well as deposits in her chest and pelvic bone. The bone scan showed no other sign. She has just been told her 1st 2 chemo treatments have made no difference to the tumour and she has also found a lump in her right side which they are concerned about. Is anyone at a similar stage? I could do with something positive. She is having a scan on Monday to check the lump and will get results on Weds with hopefully a new course of action. We live in the UK and apparently they have the lowest success rate for lung cancer. Can you give me any advice on how I can help my mum?

iola_s_mom_is_so_brave's picture
iola_s_mom_is_s...
Posts: 16
Joined: Jan 2012

My mom is 58 years old. she is about to take the chemo. We are living in Shanghai China, we have our health insurance however our government don't really pay the chemo or radio therapy and some other medictines for us. All of those items are extremly expensive. My dad is a doctor in a big hospital in Shanghai. In China, even as a doctor earns shitty money!!! Sorry I might got a bit emotional... as this is too stressful to us... I truly understand your feeling, family means everything in my deep heart as well. I will make sure she is fine by all means!
I stopped crying. So be strong! We are fighting all together!

myparentsdaughter
Posts: 18
Joined: Jul 2011

wishing you and your family, peace, happiness, and health. This is our second Chinese new year without my mom. Celebrating Chinese new year is not the same without her.. I miss her immensely. Enjoy your time with your mom. She is in my thoughts.

iola_s_mom_is_so_brave's picture
iola_s_mom_is_s...
Posts: 16
Joined: Jan 2012

Mom's b-day is always on the 3rd day of CNY. We just celebrated. She started Chemo yesterday. I will pass your words to cheer her up. She will be fine :-)

DCG1956
Posts: 4
Joined: Jan 2012

Iola I am so sorry to hear about your mom and your situation with the doctors over there. I am surprised to hear that your government isn't economically helpful. I wish the best for your mom and your family. Thank you for your words of wisdom. We are all fighting together and strength is what will get us through this!

iola_s_mom_is_so_brave's picture
iola_s_mom_is_s...
Posts: 16
Joined: Jan 2012

Government pay for some parts but doesn't cover the serious disease like cancer. You know we have one child policy in China, so I am the only girl my parents have. Pretty stressful, I go to work everyday then stay with her in the hospital when I am off, after that I go home to clean and do some housework then I go to sleep...
Actually 3 years ago, after my graduation, my dad got throat cancer, luckily we found it out very early and the surgery was well done by the best throat doctor in China. We spent a lot of money at that time. All my classmate went for trips to celebrate their graduation while I was staying home and crying all the time. I did cry a lot even that caused me tinnitus during that tough period. I still remembered there were many fancy resturants around the hospital dad stayed in. One day, dad felt sick of having meal from hosptial, so we 3 went on the street, however none of us was dare to step into any of those ones. Those meals were so expensive to us...We didn't know how much money we would spend for curing dad, finally ends with buying some bread for dinner... 2 years later, I sit in one of the most expensive places to have my meal. well...life is full of surprise! You would never know :-)
Now mom is sick. I am much stronger than 3 years ago for sure. We still can't fully afford the payment from hospital but I would never give up. I truly believe if you want to reach to somewhere, make efforts, take actions, keep doing it then you will get there sooner or later.
Clean your tears up, pray for your mom and stay with her as much as you can. I have faith in you and your mom.

ldoman
Posts: 9
Joined: May 2011

Hi DCG,
Hope your mother found a health insurance. You said she is between job transition, she might be qualified for COBRA. You have 45 days to decide and the coverage will be the same if she has health insurance from her previous employer. I was also diagnose with stage 4 NSCL cancer last Mar 2011.I was on Tarceva until October. The pill stopped working on me so I started chemotherapy on November. It is a combination of Carboplatin and Alimta. The side effects are brutal; nausea and vomiting, had to change meds for the nausea and vomiting. I am on my 4th chemo treatment this coming Feb 8, 2012. Just like any lung cancer patients I was diagnosed after complaining of backache and a hard tie breathing. I had thoracentesis to take water out of my lungs. Please encourage your mom to eat healthy and drink plenty of fluids. I refuse to give up and be one of their statistics. If you live in the US your mom might get qualify for Medi-Cal. If she was declared as disabled by her oncologist she might get it. I just applied for it while I am on Cobra. My company just terminated me at end of Jan 2012, so my Cobra eligibility starts in Feb 12. Good luck to you and your mother.
Lorna

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

My husband was diagnosed with NCSLC with mets all along his aorta on 3/3/11. It also all started with a very bad pain in his back and when we got to the emergency room (the day after superbowl) the doctor there had a terrible bedside manner. He came to my husband after the CT Scan and said "you have cancer all up and down your body" Talk about a shocker. Well anyways the nurse at the desk started hooking us up with the hospitals social worker to get him immediately on Medicaid. We also have no kind of health insurance. My husband only took some radiation treatments to shrink the tumors on his back and jaw. Decided not to have any chemo. My husband turned 55 on September 30th and passed away on November 14, 2011. He showed no signs of any sort of disease especially lung cancer but near the end it was becoming evident. Unfortunately he didn't pass peacefully and I was right by his side! Lung Cancer is not nice when it takes a loved one from you.

I am sorry for being so blunt. My prayers go out to you and your mom!

~Kelly
wife of Mark RIP 11/14/11 NSCLC with mets

beachgirl71
Posts: 5
Joined: Feb 2012

I'm so sorry to read your story. I'm praying for your heart, soul and mind to recover.

beachgirl71
Posts: 5
Joined: Feb 2012

I'm so sorry to read of your pain. Comfort your mom, pray with her. I would like to have hope for you but really all I can do is offer the faith in Jesus to deliver a miracle for you and your mom.

God bless you.

jalu
Posts: 58
Joined: Jan 2013

I was an actuary in healthcare and retired in 2011, the pre-dawn of ObamaCare.  I'm amazed that so many people are unaware -- but YOU CAN GET HEALTH INSURANCE -- EVEN WITH YOUR DIAGNOSIS.  

Contact your state department/division of insurance.  You will pay premiums, but the benefits will far exceed those premiums.

Get that insurance today -- and good luck.

The hardship of this disease is bad enough -- don't let it kill you financially.

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