CSN Login
Members Online: 9

Recently Diagnosed with Stage IV NSCLC

ViewSonic
Posts: 17
Joined: Nov 2010

My wife, aged 30, was recently diagnosed with stage iv nsclc with a decent sized tumor in her left lung and also with several small brain mets. She was ill for several months, and was hospitalized several times with a mis-diagnosis of pneumonia each time. I wish they had correctly diagnosed her the first time she was hospitalized. We probably would have been able to caught it earlier and treat it sooner. I feel like the doctors have completely failed us so far, and we are both lost and confused and trying to comes to terms with it. We have three small children together, and just the thought of losing her and the thought that my kids not having a mother is too unbearable to comprehend.

After her diagnosis, the doctor ordered a PET scan, and we are waiting the results before he outlines a course of treatment. He states that since the cancer has metastasized to her brain, only radiation therapy would work. I am not sure what to expect.

3Mana
Posts: 829
Joined: Aug 2010

Hi,
So sorry to hear about your wife. She's so young and it's a shame you have to be dealing with this. Try and stay positive. They can do so much now. You have to stay strong for your kids too. It's going to be a rough road, but you have to be there and support her all you can.
"Carole"

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I know how scared you and your wife must be right now. Any cancer diagnosis automatically sounds like a death sentence but it is NOT. There are others on here who have had lung cancer with brain mets and are still here helping others on this forum. Stayingcalm is one of them and I believe her original diagnosis was 5 years ago and she is still going strong. I'm sure she will respond to your post as soon as she sees it. She is a wealth of knowledge about treatment and a lot of the different chemo drugs.

Unfortunately right now we have been spammed again so it may take a little longer before you see many replies. It's sad that there are so many sick people out there who would do this on a site that many of us rely on.

Please post again to let us know how you and your wife are doing and what the doctors recommend for a treatment plan. We are all here to help you both through all of this.

Stay strong,
Glenna

nanaof7
Posts: 121
Joined: Feb 2009

I have lung cancer that went to the brain was giving 3-6 months to live that was 8 months ago and I feel great, did the whole brain radiation the tumors shrunk so my onc put me on tarcevea next time I went for a scan they had shrunk more don't ever give up everyone is different and incurable and stage 4 are not a death sentence take it one step at a time if your not happy with a dr. treatment plan get a 2nd opinion my first onc told me if my lung cancer ever came back there was nothing he could do so I got another dr. and she said we will fight each battle as it comes and that is why I am doing so well she is not giving up on me.

ViewSonic
Posts: 17
Joined: Nov 2010

Well, we went to see the oncologist yesterday and was able to spend 2 hours with him asking questions. This was probably the most time we have ever spent with a doctor where he didn't try to rush us. He took his time and answered all our questions. The cancer has spread to several of her lymph nodes, and to various bones of her body; her left shoulder, right thigh, and spine. The MRI shows several small spots on her brain. It was very difficult for my wife to take in all the bad news of her scans.

The onc suggested WBR 10 - 15 treatments for the next 2 - 3 weeks. After that, a chemo combination of Carboplatin, Alimta, and Avastin. He's also testing her for the ALK gene mutation and seeing if she qualifies for the Crizotinib clinical trial. The clinical trial looks promising from what I've read on the internet. Has anyone been on this chemo regimen, and what can we expect from it?

leoriven
Posts: 2
Joined: Nov 2010

Please ask them to do a spinal tap... My dad was put off a bit to long and after doing a spinal tap they found cancer cells in his central nervous system and died 7 days later. He was diagnosed with lung cancer less then a 3mm spot and pet scan showed spots on shoulder and spine... He wasnt given the option of any treatment once they found it in his cns it was to late, but caught earlier he would of at least had a fighting chance....Please be your wifes advocate... I am so sorry that you are going through this... My prayers are with you for a positive outcome!!!!!!! KEEP UP THE FIGHT

ViewSonic
Posts: 17
Joined: Nov 2010

An update, my wife visited Emory Winship Cancer Institute in Atlanta to obtain a 2nd opinion. Oncs gave her the same diagnosis, however stated that she tested positive for the ALK mutation, and can enroll in the Crizotinib trials. However, she must go thru at least 2 - 3 cycles of Carboplatin / Taxol, before beginning the trials and even then there's no guarantee that she will be put on Crizotinib.

During this time from when she was first diagnosed, she has been doing a lot of research on herbals and alternate medicine to battle cancer. She has been so caught up in it that she's currently deciding to forgo the conventional treatments of chemo for an alternative method. She states she's going to go through with the radiation to the head, but will only do alternate treatments afterwards. Now she's totally against chemo for some reason. And no matter how I try to persuade her and talk to her, she goes on the defensive and we get into a argument. She's says I'm not being supportive, and she has stopped talking to me about the whole situation altogether. I am so frustated and hurt that she's refusing to go thru with the chemo. The doctors are saying chemo will help, and if it doesn't work; then the clinical trial of Crizotinib would definately help fight the cancer. I am a lost at what to do, I've tried talking to some of her close friends to see if they can persuade her to go thru the treatment, however they are not getting through to her as well.

While ultimately its her decision, I still wish she would consider chemo. What should I do? I don't want to see my wife lose her life because of her stubbornness.

3Mana
Posts: 829
Joined: Aug 2010

So sorry to hear that your wife is against chemo. It sounds like she could be helped and she's so young. Is there anyone that can talk to her, like a family member?? Maybe she's just scared and would benefit from talking to a counselor. Keep in touch!
"Carole"

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

As you said, it is ultimately her decision, but if my spouse (boyfriend) were to make a decision like that, I would make sure he was aware of the lack of science behind most herbal and alternate therapies, and that he looked at the reputable cancer hospitals to see what they have to say, instead of reading "testimonial"-type pages on the web.

Both Memorial Sloan-Kettering and MD Anderson Cancer Center have info on herbal /alt therapies, and there are any number of sites out there where you can find info on the truly quack medicines. I really hate to see people being led down the garden path - it's one of the things I hate about the internet, that anyone can claim miraculous cures from anything, and people will flock to it =(.

I hope she'll come around. Everything I've heard about Crizotinib has been good. I know there are a couple of people at Inspire who are in the clinical trials and it seems to be working well for them.

Good luck, ViewSonic, and best wishes to your wife no matter what her choice!
Stayingcalm

mmt366
Posts: 33
Joined: Apr 2010

My non-smoker wife was diagnosed Sept 09 w/ stage 4 nsclc mets to brain and lympnodes. Immediately began WBR- 15 treatments, then 12 cycles of carboplatin/Taxol. In between her onc suggested she betested for the ALK mutation, so off to Mass General Hospital for a biopsy. Anyway 6 months later we were informed that the treatment was no longer working/tumors were growing. We switched our treatment to Boston MGH where my wife was accepted for the ALK Crizotinib/pf1066 trial. It is a random trial and she was initilly selected for the chemo/Taxoter arm of the trial. She will be undergoing her 8th Taxoter treatment this coming Monday 12/13, * if her head MRI and CT scans scheduled for tomorrow indicate that the treatments are still working. If not she will immediately begin the Crizotinib arm of the trail. Side effects to this point ..weight loss, memory loss, nueropathy fingers and feet, extreme fatigue at times and of course hair loss. We are praying that she will be able to continue with the Taxoter because we see the Crizotinib as a last line of defense. This will be our back up plan.

Good luck with your treatments, I can tell you that prior to my wife beginning any treatment she was almost unable to speak 5-6 words without losing brath, also her weight had dropped 25 lbs to 89lbs and she was bed ridden most of the day. Since beginning treatment she has gained quite a bit of weight back. She has days when she has no strength, but days when she feels very good. In fact since May we have squeezed in a trip to Aruba, and a couple of weeks in the White Mountains of New Hampshire, out favorite spots with many memories.
Please do not give up, there are just too many reasons to live. "Life is good" Cherish each moment that you have with each other. It's not easy but stay as supportive and positive as possible whenever around her and it will rub off on her, also try to understand her frame of mind too.

Nothing but the best to you both.
mmt

ViewSonic
Posts: 17
Joined: Nov 2010

I am so sorry that you are going through with this. Thank you for your story. I pray that my wife is strong and willing to fight this battle. She has a lot to live for especially with three young kids.

I believe my wife is unwilling to accept chemo at this time for a couple of reasons. She seems normal and currently able to do daily activities. Her weight is stable, and only symptoms she currently has is a bad cough. Pains come and go, her speech, vision, & balance are fine. Because of the lack of symptoms, I believe my wife thinks that she doesn't need chemo and thus her constant refusal to go through with it. The way she feels now I believe would only be temporary until the cancer progresses. I fear that with her not doing anything; it would only cause her to be in a worsen state soon.

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

My wife too, was pretty much asymptomatic.she is 40 and a non-smoker as well. A slight cough and a bit of wheezing that appeared to be allergy related. In fact just two days before her diagnosis her and I walked 4.5 miles. Two weeks before she went on a 20 mile bike ride with two of my children in the attached bike trailer. she walked or went to the gym several times a week.

I was surprised when she felt guilty about getting ready to take chemo as many had tried to talk her into more natural treatments. But she quickly snapped out of it as more solutions were being offered and she researched them. Finding that most had very little hard data. Contrary to what many think, the medical industry is not hiding cures for cancer. That's just ludicrous.

Her tumor began to shrink immediately... down over 50% in just six weeks. Although the chemo is starting to wear her down, the doctor sounds a little more encouraged every time we go in and said yesterday that she is fairly certain any decrease in energy now is chemo related and not cancer related. My wife also wants to do a walking marathon this spring. Finally we just got home from walking four miles this after just yesterday spending ten hours receiving four types of chemo... well two chemo, and two targeted therapy meds.

There is NO WAY she would be doing as well as she is (even with the chemo induced fatigue)without chemo.

I truly understand your concern and know it is a delicate issue but you must continue to address it. Our neighbor (who just coincedentially is a nurse for her doc... what are the odds, there are 400,000 people in our city) said she she's a lot of people turn away treatment to try "natural" remedies, only to come back when the cancer has went wild and they are too weak to receive much treatment.

Keep us posted, and let me know if there is any info I can supply that might be of use to you or your wife.

stretch7425
Posts: 13
Joined: Oct 2010

My wife also Stage 4 NSCLC mets to brain, I did not read about possible side effects of the two Chemo Drugs, We missed some warning signs so her treatment was never adjusted, It should have been, as we just started Home Hospice as those two drugs have basicly killed her. Her cancer is in remision and tumors are smaller, The chemo was just too much. We found out that if we had reported some of her symptoms they would of reduced the doses and she would have survied. You are in my prayes, and as others will tell you this is not automaticaly a death sentence. there are alot of serviros out her. Never give up hope, We are still fighting this. God Bless

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

So sorry for the stressful situation you are in due to your wifes cancer diagnosis. It's a terrible disease. I believe in natural treatments, too. But, not to the exclusion of a doctor's, (M.D.'s) care. I've done tons of research about cancer treatments since my husband was diagnosed with primary liver cancer. Believe me, short of a biblical miracle, there are no natural cures for cancer. That is not to say some dietary adjustments and supplements won't help. I give my husband lots of supplements that help with chemo symptoms and if pain should ever be a problem we will visit our local acupuncturist. But, to give up conventional treatment, will only shorten her life. I beg her to reconsider. There's nothing wrong with using both treatments and not excluding one. Maybe she's scared of the side effects of chemotherapy. She need not be. They are not nearly as bad as they used to be. My husband has had two treatments, and has had no nausea, or hair loss just some fatigue. Try to convince her to do both. It couldn't possibly hurt to do EVERYTHING possible. She needs to fight this with both guns ablazing. Good luck and may God bless you both.

stayalive
Posts: 24
Joined: Nov 2010

ViewSonic,

I know how it's like with the news of the diagnosis. My son is 21 years old and has Stage IV NSCLC as well, with tumor in lung & pericardial effusion. He just had a surgery to open a "window" to drain the fluid from his heart to the lungs. We are hoping to test positive for ALK and be on the clinical trial since he did not respond to the 1st chemo cycle. Like your wife, my son went thru 5 courses of antibiotics over 6 months - the PCP thought it was some common flu and did not think it would be anything serious because of his age & great fitness.

I know it makes it more challenging with 3 young children ... we have to be strong and stay positive and pray for a cure.

I've also been looking up info on ALK & Crizotinib ...
http://clinicaltrials.gov/ct2/results?term=alk
http://www.inspire.com/groups/lung-cancer-survivors/discussion/eml4-alk-mutation (unfortunately Kevin passed in May 2009)
http://pharmastrategyblog.com/2010/11/crizotinib-and-alk-rearrangements-in-lung-cancer-an-interview-with-dr-ross-camidge.html/
http://cancergrace.org/lung/2010/06/09/alk-talk/http://abclocal.go.com/wpvi/story?section=news/health&id=7783663
http://www.examiner.com/health-news-in-milwaukee/new-drug-shows-promise-against-certain-lung-cancers
http://www.medscape.com/viewarticle/732362

Please keep us posted. We will include you in our prayers.

ViewSonic
Posts: 17
Joined: Nov 2010

Thanks everyone for your input and stories. I will try to stay positive, and will continue to persuade my wife on accepting chemo treatments. I pray that she will eventually come around and go thru with the treatments. I will keep everyone posted on the updates and how she is responding to WBR.

nanaof7
Posts: 121
Joined: Feb 2009

I did the same chemo they offered your wife only side effect was some tiredness after 3 treatments tumor shrunk 50% also had radiation like you said it is ultimately her decision but if you let her see the positive outcomes maybe she will change her mind

ViewSonic
Posts: 17
Joined: Nov 2010

My wife did the WBR, and recovered fine from that. MRI and head scans shows everything is in the clear. We celebrated from the results of the scans, and she was feeling great. She finished rad in mid January, and her onc enrolled her in a clinical trial for Crizotinib. She was doing ok except for some mild pains. However, everything took a turn for the worse a week ago.

It happened so fast, one day she was doing fine, the next day I had to take her to ER. On 3/11/2011 - Friday, she was suppose to start on a combination of chemo of Carboplatiin/Alimta; she had been radomized to the chemo arm of a clinical trial. We were hoping for the study drug Crizotinib, but it wasn't meant to be. She had finally agreed to go through with the chemo, however they didn't give her the chemo that day due to her failing her Echo/EKG? test; they said her heart rate was too fast which was around 120 bpm. Since they didn't give her chemo, they went ahead and gave her an infusion of Zometa. Everything was fine until later that evening when she complained of severe pain in her right hip and right shoulder (bone mets). I called the on-call nurse, and she stated that the Zometa may have irritated the bone mets and that a lot of patients experience some mild pain after that treatment. However, the pain she was experiencing was far from mild. She took Morphine, and several hours later Dilaudid (pain meds), and nothing work so I took her to ER to get her some relief. At first, she was being treated for the pain, and it seems like everything would be fine, and she'll be back home in a couple of days however that was not the case.

They did x-rays & CT scans. They transfer her to ICU as a precaution. Docs are saying she has fluid in her lungs and around her heart. They have already done a procedure to drain some of the fluid out, however her condition still has not improved. She has difficulty breathing and is currently on oxygen, and may be put on a ventilator soon. The team of doctors are not giving her much hope. I am at a lost for words and have been trying to come to terms on everything that is going on. It pains me to see her in the condition she's in. She is on constant pain medication and sleeps for most of the day, and is not aware of anything that is going on. Docs are planning to do radiation to her lung and chemo to see if they can reduce the size of the tumor in her lung. I'm just praying and hoping she pulls thru; however the docs are saying to not expect much. I took my kids to see her this past Saturday, and she smiled when she saw them; however since then, she's slipped back to her current state. I'm trying to stay positive, but it is difficult to do so.

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

When there is not much for us to say....it truly pains me to hear this. I too have young children, and it is difficult to help them understand somthing when I, their father cannot.

U r doing the best you can... trying to stay positive is difficult. I do hope that u can have clear thinking and personal strength at this time. Sometimes we cannot control the outcome... good or bad.... keep us posted. We r thinking of you, your wife, and your children.

mmt366
Posts: 33
Joined: Apr 2010

Hi View, just read your latest entry and please know that your wife is in our thoughts and prayers. I will pray your wife is comfortable and pain free.

mmt

mmt366
Posts: 33
Joined: Apr 2010

Hi View, just read your latest entry and please know that your wife is in our thoughts and prayers. I will pray your wife is comfortable and pain free.

mmt

ViewSonic
Posts: 17
Joined: Nov 2010

Thanks for all the kind words. My wife has been a trooper despite the odds. Ever since she was released from the hospital towards the end of March, we have been back and forth to the hospital for pain management. During one hospital stint in April, the doctors found that several spots in her brain have re-formed. Since she could not do WBR anymore, she was referred to have gamma knife surgery. During the gamma knife MRI scan, they discovered 20+ spots which was originally thought to have been only 5 spots. At first, the gamma knife team did not want to treat her for that many spots, but after several discussions with her oncologist, they agree to treated her anyway. Her gamma knife procedure took 4+ hrs to complete. It seems her condition is improving since she is able to walk on her own for short distances. In addition to the gamma knife, she's been on an Alimta only regime. Not sure how effective it is, but I'm sure something is working since she's not having the severe pains anymore. This has been a rough 5 months of the year. She's due for scans at the end of the month, and hopefully the scans will show that it is under control. If not, her doctor stated that he will plead her case to Pfizer to be allow for compassionate use of Crizotinib. Here's hoping for the best...

ButterflyLake's picture
ButterflyLake
Posts: 44
Joined: May 2011

I've had the roller-coaster ride with my mom (stage IV lung with brain mets) since July. My prayers right now are with you, your wife, and your kids. Best of luck to you.

sleepless in jersey
Posts: 185
Joined: Feb 2011

Hello~My heart goes out to you and your family!
My Mom is 60 and has NSCLC stage IV diagnosed on 1/3/11 with mets to brain,spine and pelvis. She had done WBR 10 days and did 4 rounds of carboplatin/alimta and every 9wks zameta( for bones) and they gave her b12 shots every 6 wks.

Mom did good on both no nausea or sickness. Lost hair, but that was from the WBR.

Got the call brain clear wow
Bones are the same and lungs some shrunk and some grew. So change of TX now Taxatere 3 wks on 1 wk off til Aug. than scans again.

Neurosurgeon said she could never have WBR again if they were to come back.

She tested neg. to the ALK and the gene mutation tests as well, I dont know what we go to from here if this doesnt she great results?

Keep us posted...thinking of you
sleepless in jersey

grannylove
Posts: 183
Joined: Apr 2011

I am praying for the best for your family. You have been thru so much these past months and I pray for God's grace. You are a wonderful caring husband/father and I pray that you continue to hold strong. I will lift you and your family up in my prayers. God Bless and keep us posted on how we can help

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network