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Just found out I have stage 4 lung cancer

looch969
Posts: 27
Joined: Jun 2009

Im a 49 year old woman non smoker, I just finished my last test today (PET) to find out if my cancer came from somewheren else. Tomorrow I have an appointment to get results and depending on the results I should start chemo on Friday (dont know what kind yet) I have not had time to actually take of of this in, I feel as though Im in a dream and will wake up to find out its not true. Family and friends all have opinions on where I should go for treatment and trying clinical trials. I am confused, please help me understand what is happening. Thanks, Tamie

ARobben's picture
ARobben
Posts: 46
Joined: Apr 2009

Tamie,
Sorry to hear about your diagnosis. I was diagnosed with Stage IV non-small-cell-Lung-Cancer in December 2008. I know it can be overwhelming to hear. I also know that once you are diagnosed with something like this, Everyone (with the best intentions) offers help and advice as to what they think you should do. They are trying to help, but this can often be overwhelming.

My best advice in that respect is to assign an advocate (a close friend or loved one) who will fight for you and help your sort through all of this information.

The best thing you can do is to arm yourself with education! Find out as much as you can about your cancer, any medications or treatments the doctors suggest, etc. This board can be a pretty good resource, but use the internet to look up drugs, treatments, etc (or have your advocate do this for you).

Let us know how everything goes!

looch969
Posts: 27
Joined: Jun 2009

I will let you know the results of my PET scan and brain MRI tomorrow. Do you have cancer anywhere else? What were you experiencing when you ist went to the doctors and found out? They thought I had TB, wish I did. It feels good to talk to someone that understands what Im going though, but when is it going to hit me? Tamie

sbmdpc
Posts: 4
Joined: Mar 2009

Tamie
I was also recently diagnosed with Stage IV Lung/Thymic cancer. I went to the doctors for what I thought was a pulled muscle or inflamed lung from asthma in March. I went to the hospital for an x-ray and after many tests I was told I have stage IV lung/thymic cancer which has spread to my abdmonem, brain, thymus and lungs. At 34 this is the last thing I ever expected but I have learned over the last three months that no matter what age you are hearing that diagnosis is a shock.
I would agree that you have a health advocate (family or friend) with you at all appointments when seeing the doctors or having tests. Also keep a notebook to write down information you are given and also quesions you have that come up between appointments. I usually have my boyfriend with me and he asks many questions that I forget. To be honest many times I have gotten to the car and did not absorb any of what was said during the appointment. Once "chemo brain" sets in the memory is even worse. Also get a second opinion. My doctor recommended I get one and continue to work closely with the specialist I saw. Educate yourself as much as possible but don't be afraid to ask your doctors questions about your specific case as some of the information is overwhelming.

I have been through four cycles of chemo. The first two were shrinking the cancer, however the last CAT Scan shows the cancer has grown. I had a brain MRI today. Tomorrow I see the doctor to see if we change the chemo or start radiation.
I have been through every emotion possible and they continue to change multiple times a day. Allow yourself to go through the emotions whether it is anger, sadness, happiness, etc. Unfortunatley as much as people want to help it is hard to understand how you feel until you are the one hearing stage IV, they can not understand the mental strain it also causes. Lean on your support and allow them to assist you.

Most days have some sort of physical or mental challenge but I am up for the challenge if it allows me more time with my 14 year old son. I am determined to prove the doctors that their life expectancy is wrong and is based on an average not based on me.
Keep the faith and know there are others out here walking along the same path with you.
Sincerely
Suzan

looch969
Posts: 27
Joined: Jun 2009

Susan,
Thanks for responding to me, it truly feels good to discuss my feelings with someone that really gets me. How long did it take you to start showing emotions? I still have not even really cried. I know Im a strong person but is this normal? Tomorrow I will get the results from my brain MRI and my PET scan, did you have any symtoms? Did you think it was anywhere other than your lung? Is is hard for you to breathe and are you wheezing?

Sorry for so many questions, but Im just trying to understand what is happening to me.

I also have alot to fight for, 30 years married to an amazing man, two beautiful children a son 29 and very successful (owns a paint & body shop) a georgeous daughter 26 a petiatric nurse and of course the love's of my life 2 grandchildren a girl 3 years old and a boy 15 months old. So just like you I plan of beating all the odds presented to me.

Thanks, Tamie

livinlife
Posts: 2
Joined: Jun 2009

Hi Tamie...
I too was diagnosed with stage IV lung cancer in January 08. I'm not sure if my reaction was "typical", but I didn't cry either. I think it takes a while for things to really sink in. But, even then I didn't really feel like "why me?". You will be amazed at the number of options that you will have. When I was diagnosed, the tumor in my right lung had metastisized to my left lung and infected a few center lymph nodes. Other than that, it is contained. I have been going through chemo treatments that have slowed the progress down. A cancer diagnosis is NOT a death sentence!! There are people living with it every day! Attitude is everything! I have been blessed in that I have never had a symptom. The finding was in fact just a fluke. Perhaps this helps me to keep up a good attitude. I don't dwell on the fact, and I actually took this occurance as a "wake up" call to do some of the things that I have been wanting to do, but just kept putting off. Keep a positive outlook. Don't give in to this diagnosis. You can still have a bunch of good years ahead of you!

Take care.....

sbmdpc
Posts: 4
Joined: Mar 2009

Keep the faith

looch969
Posts: 27
Joined: Jun 2009

Thanks for responding, I wish you the best. I will keep you in my prayers.

Tamie

ARobben's picture
ARobben
Posts: 46
Joined: Apr 2009

Tamie,
I can relate to show much of what you are sharing. I initially checked into the hospital for shortness of breath and some pain in my right side. I noticed some shortness of breath while playing basketball with some kids at a youth mentoring program I volunteered with. I thought "I'm not this out of shape am I?" It progressively got worse and I thought maybe I had a bad bought of Bronchitis or something. It got to the point where I couldn't even walk up a flight of stairs without being completely out of breath. This is when I decided to go to the hospital.

When I checked in, I was given an EKG and a CT which showed a mass in my right lung. They also thought I had TB, but did mention "it could be cancer, but because of your age and health, that's really in the back of their minds." Although they kept me for several days running tests for TB, in my mind I knew it was Cancer, so I was more or less prepared when I got the official cancer diagnosis several days later, after a biopsy. I didn't really react the way the doctors were expecting. I didn't have an emotional breakdown or anything. I was just like "okay, what do we do now?"

We discovered I also had several pulmonary embolisms (blood clots in my lungs). The doctors said this was more than likely what caused my shortness of breath, because lung cancer in and of itself doesn't tend to have many symptoms or cause the kind of severe shortness of breath that I was experiencing.

But from that point on, I got all the information I could about every treatment that was recommended. Luckily, my parents were able to come join me in the hospital and become my advocates. I also had lots of visitors and told the doctors they could speak freely in front of them. I wasn't going to keep anything from my friends or family.

As of my last PET scan, my cancer had spread to a couple of my ribs and also my lymph nodes (well, that wasn't new...it had been in my lymph nodes all along, but was apparently a little larger now). The lymph node was inflamed to the point where it was pushing on my esophagus and closing it off a bit and making it difficult for me to eat solid food. I was doing smoothies and things for a while but even those became difficult. Just last week I had a feeding tube installed and have now began getting fed through that.

I had six rounds of chemotherapy and am now on a break from that for a while. I just began radiation therapy on my rib and will have radiation on my lymph node starting tomorrow.

I'm not sure if I answered all of your questions (I don't remember them all, lol!) but I hope this helps! I'll keep you posted on my progress and you be sure to do the same!

Andrew

derrald
Posts: 3
Joined: Jun 2009

my wife was offically diagnosed with stage 4 nsclc june 3rd. she has had her brain scan and her pet was yesterday, we see the oncologist tomm. the lung doc said surgery was not an option because the main tumor is wraped arround the bronc tube. she has lost about 45 to 50 pounds, cant swallow ( belives doc scratched throat )( I don't ) can't breathe well and although she says she hasn't given up, I think otherwise.

the fears are ungodly,she will turn 40 july 2nd. happy birthday huh? I am trying to stay positive and encoureging but it is hard.all the facts I find are grim, She is the type person who has an attitude of " don't tell me I can't" So that might help. I am loosing my mind. we will know more tomorrow. I hope I can post good news.

Thanks for listening ( reading )

Derrald

looch969
Posts: 27
Joined: Jun 2009

Hey Andrew,

Well the cancer is not in my brain, (great news, but I was pleasantly surprised because I am always kidding with friends & family about having "CRS" (can't remember ****!) but is in my bone neck, right rib & right shoulder. I guess the diagnosis is Adenocarcinoma bronchoalveolar Stage IV bi-lateral with mets in bone? I start chemo Wednesday, I was given a B-12 shot and had to wait seven days until starting chemo, I will be given Alimta, Carboplatin & Avastin (which is a blood vessel blocker). I will also need to take a Folic Acid Pill 800-1,000 mg everyday. For pain I am wearing a pain patch and take Oxycodone-APAP 5-325MG for breakthru pain. After chemo I will probably need Radiation for bones, I will stay on the Avastin forever and will go on a chemo pill. I guess this is the plan so far.

I don't know how to post my photo yet (I guess you can tell I just started using a computer) but I will ask family members to help me so you can see my before and after pics, I was told to dye my hair all one color no more highlights the chemo does not like bleach. I have a hair appointment today, I just would really like to keep my hair - did you lose your hair?

I really hope your radiation went well.

Keeping you in my prayers, we will hang in there together.

Tamie

ARobben's picture
ARobben
Posts: 46
Joined: Apr 2009

Tamie,
Sorry it's taken so long for me to get back to you. I think I just lost your response in all the other replies here.

Anyway, sorry to hear about the mets to the bones, but it sounds like you and I are in pretty similar shoes.

I took a very similar chemo regimen of Cisplatin/Avastin/Alimta. The only difference between Cisplatin and Carboplatin is that Cisplatin is a little stronger, but tends to come with rougher side effects. They don't use it often, but they figured since I am young (27) I would be able to tolerate the side effects. After three treatments with this combo of chemo drugs, there was some fairly significant shrinkage of my tumor, but after a further three treatments, my tumors remained stable. They weren't growing, but they weren't shrinking anymore either.

I did continue Avastin, but my latest PET scan revealed that the cancer had spread to my ribs, which meant that the Avastin was no longer working. I am currently undergoing radiation for the ribs and was told that Avastin can lead to an increased bleeding risk during radiation.

I also am on a pain patch (Fentanyl-75mgs) which I change out every three days. I take Lortab or Percoset for breakthrough pain. I was having to take the pills pretty much all day every day until my pain patch was bumped up to 75mgs.

Sounds like we are in this fight together, Tamie!

The other thing on my plate is that my medical oncologist thanks I should try to see if I am eligible for this clinical trial, since my cancer has become resistant to the current regimen of drugs. I don't know much about the trial, but I have a meeting with the doctor running it on July 16.

Keep on fighting!

DONCARLOS
Posts: 66
Joined: Jun 2009

I am sorry because I just found out today myself. I don'te know what Stage? How do you find this out? I do not have shortness of breath, but I do cough a little, I really have none of the symptoms I have read from some of the members. I was a professional singer and performed on the stage until recently, and I do notice that my voice starts fading away late in the afternoon. I do have one of my oldest Daughter who is a preofessional Social Worker helping me with all the info to and from doctors. I just want to get this over with and get Surgery....Good luck and lets keepin touch.... By the way, myu Pet Scan shows tha the rest of my body is perfect for my age.

Don Carlos

laurenr
Posts: 12
Joined: Apr 2009

With my dad, they knew pretty quickly it was stage 4 b/c it had metastasized to the brain and a few other organs. He also was in excellent shape (a biker). He had not been feeling well off and on but thought it was a bad cold or maybe the flu. He started having some memory and balance problems and finally told us about them. He then fell down the next day and couldn't get up and that's how he ended up in ER. We thought it was a stroke. Within 2 days they had run all the tests and scans and confirmed the cancer. He did 10 radiation treatments on the brain and has been through 10 weeks of chemo treatments. He will celebrate 3 months of survival on June 22.

We went through all the emotions with him. We cried when we heard each pronouncement and diagnosis. He has three grown kids and we all try to go to dr appointments and help him process the information and ask questions. We have all become very close and talk multiple times a day now. Dad had the doctors talk in front of all of us from the beginning so we all had the same information and could communicate.

He has lost weight, although not as much as some, and eating is a struggle b/c he doesn't have an appetite. He started on an anti-anxiety medicine after a few weeks b/c we was very emotional and that has helped. He doesn't cry now, and is usually very positive. He is very tired so he doesn't really talk a lot at all, but we still have some good conversations.

He knows he would feel great if he stopped the chemo but he is determined to keep it up and give himself the best chance possible, and we support his decision and do whatever we can to help.

Get all the information you can, ask all the questions you want, take every bit of assistance that is offered -- whether it be a neighbor bringing food or someone to mow your lawn or whatever. Enjoy every day to the fullest, say I love you often and always believe in miracles. Numbers are just that -- no one knows when their last day is and I believe in positive thought and prayer both.

I have gotten a lot of help and good information from these boards, especially when I read about those who beat the odds. Hopefully you will too.

Good luck to all of you, I'm including all of you in my prayers for my dad.

derrald
Posts: 3
Joined: Jun 2009

don, (if I may call you that)

I am not sure how it is staged, I am very new to this. the doc said 4 cause it has invaded both lungs, bronc tube,lymph,amd bone. if they said surgery, I think yours is very early. my wife was told surgery and radiation were out of the question. no surgery on bronc tube(self explanitory) and because it was in so many places that radation was not an option.

monday is the nurse consult
teusday is the med port
wednesday is chemo
thursday is the shrink

we are going to give ths a heck of a go! I wish everyone else great sucsess.

Derrald

looch969
Posts: 27
Joined: Jun 2009

Hi Derrald,

I guess everyone has the right to respond differently to such shocking news, I have decided not to waste time nor energy on feeling sorry for myself, instead I am jumping in with both feet. I have to much to live for and refuse to give up without a fight! I think it is a good thing that your wife will be seeing a shrink, maybe she just needs someone other than family & friends to vent to. I also just found out and Im doing the opposite (don't know which is worse) I still have not had a major breakdown or really a good cry.

If your wife ever needs to talk to someone in the same position as her I would be happy to talk and listen to her.

Hang in there!

Tamie

looch969
Posts: 27
Joined: Jun 2009

Hi Don Carlos,

Your doctor will need to determine what stage of cancer you have, I have non-small cell lung cancer bi-lateral with mets in bone, which means I have cancer in both lungs and my PET scan shows cancer in lower neck, right rib & shoulder.

I started having pain in my right should blade which staring moving around to the center of my chest, I thought I had pulled a muscle and the doctors prescribed a muscle relaxer, but then I started having fatigue and wheezing I went back to the doctors and they thought I had TB (wish I did) I then had a bronchoscopy which determinted I had lung cancer, I start chemo on Wednesday.

Best of Luck,

Tamie

hopehope
Posts: 21
Joined: Jun 2009

I have no words to to express my fear and sadness. My mom lives in India .She never smoked or even had second hand smokers around. Mom had 5 rounds of chemo and because of low blood count they stopped chemo on her. She is going through terrible pain and I am so helpless to console her. She had patches and all other pain medications but nothin is working. Cancer has spread from left lung to right luncg and then to one of the ribs. Please advice on treatment options. She has to take PET scan on Monday and see the if she need togo through chemo or radiation. I am trying to be bold and consoling her. Butmy poor mom is so scared and crying . I am praying go dto give her courageto face it. I am here in US and really really miss her every minute. I am planning to go back to India soon to take care of her.

All the Oncologis says that my mom has 6 months or 12 months or 18 months of time. I just dont know what to say. I searched in Iternet and came across the CANCER ALTERNATIVE TREATMENTS and especially so many medical clinics in MEXICO. Have you heard about it. Please advice your openions on Alternative cancer treatments in MEXICO.My mom lives in India. I have no idea what type of serious effects cause with this alternative medicine. I received phone calls from so many people saying they are Cancer surviours with this alternative treatments. PLEASE HELP. I DESPERATELY NEED INFORMATION> GOD..PLease help me

Jager's picture
Jager
Posts: 32
Joined: Jun 2009

I am Mexican and have lung cancer cancer staged IIIB.

When I got the news all my family and close friends started to talk about alternative treatments and as always, there came the stories of "someone my nephew knows" used this ot that.

I did some research on the "seems to be reliable" treatments you can get here and found only one, a tea you have to prepare (they sell the little pieces of wood to prepare the tea), this tea you get it from a tree so I researched and in fact, it is true, from this tree they originally got the "taxanos" (now they get it in laboratories) that is the component of "Taxol" (used for kemos in medicine).

That was the only one I found to be "real" but as you can imagine, it is better to get the concentrated formula through a kemo (straight to your vein) instead of drinking it in small doses.

There are some other stuffs available but they don´t attack the cancer, they just help you to get a boost to feel better, nevertheless, I will recommend you to stick to your moms professional treatment and you need to inform your doctor of any "alternative medication" your mom want to take as it can affect her or the treatment.

Will search more about these clinics you mention and will update you later as I am at work now.

harrison123
Posts: 2
Joined: Jul 2009

please check on free clinical trials-----------Tarceva, AKL Inhibitor

terry45
Posts: 5
Joined: Jun 2009

Hi Tamie - I'm a 43 year old non-smoker diagnosed with Stage 3B Lung Cancer in May of this year.

Other than keeping a positive attitude and staying physically strong, the best advice I could give is to make sure you are comfortable with your medical team. If your doctor and/or nurse clinician are not more than 100% responsive to all your needs and questions, move on to the next. You run the show. You need to be comfortable with everything that's happening.

Terry

prnorman
Posts: 2
Joined: Jul 2009

I can't imagine the emotion that you all have had to go through during your diagnosis. However, I do know how it feels from a daughters point of view. Every day I see the struggles of the strongest person that I strive to be. If I had any advice to give it would to keep pushing the doctors. I always feel like I'm one step behind. There's always one more stronger drug to try, a more effective pain killer to help soothe the pain, or another doctor's point of view that could have been helpful 6 months prior. We should have gotten a second opinion and should have researched it as soon as the diagnosis occured. Stage 2 turned to stage 4 in a matter of weeks because our plan of action was too slow. We were forced to make appointments later rather than sooner and I only feel regret that it wasn't placed as a higher priority. We were told (at stage 2) that the aches and pains in her body could be cured through a trip to the chiropractor. I now know that the aches and pains that felt like pulled muscles was the first signs of metasising (sp?) to the bone which causes extreme pain. Our PET & CT scan were few and far between and everytime we heard a new diagnosis, I get to hear, "That is really rare. I've never seen that." Question your doctors and the methods that they choose to pursue. Make sure they do a whole body scan. Most only go from the neck to the mid thigh. If you do take a bone medicine, be aware that it causes jaw infections. Steroids ahve been a huge help to reliev pain but have been striven from my mother's cocktail because it can infection. Some doctors have relied more on sedating rather than curing. Eat, because you will loose your appetite. All the treatment you will endure will take energy and nutrients and it is the best thing you can do for yourself. And don't quit! We are all depending on your strength to help the next fighting cancer survivor. Our family gets through this with hope, love, and telling the miracles of other survivors. I admire your strength to even seek outside resources when it must be a dificult thing to do. I will pray for you and your family as I believe you will fight this most unfair diagnosis.

AM3737
Posts: 3
Joined: Jul 2011

I am a 42 year old just diagnosed 7 months ago with stage IVa thymic carcinoma. I am also a wife and mother of 3 children as my oldest is just turning 15 yrs. old. I am hoping that you are still doing well with fighting this cancer and would like to be able to communicate with anyone who has the same type of rare cancer. I have been through chemo and surgery and still have disease in my left pleural cavity.

TN605
Posts: 1
Joined: Oct 2011

My mom was diagnosed in August, 2011 with stage IVb thymic cancer. she is 66 yrs. old. She has been through Chemo (second cycle). They can't remove her cancer because it wraps around her airway and major arteries, it spreads into her left lung. We have been there to support her. Hopefully we can fight this battle together. We will keep you in our pray. Take care and let us know how it goes for you.

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