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Stage 4 Lung Cancer with Mets

Terrified13
Posts: 1
Joined: May 2019

Hi All, I’m new here today.   I was told I have stage 4 lung cancer with Mets to the liver & brain .The ONC said I have 6 months without Treatment!   No Biopsy yet ....  I have to go for a Consult & Physical BEFORE the needle Biopsy.   I wasn’t told this & Wondering “ why “.   6 months Without Treatment, I’m Scared to Death !   So much Panic !!    It could take6 months Before Treatment starts to work ?  Do I have any Hope ?   Any Encourage for me ?    

CindyAM1950
Posts: 3
Joined: May 2019

I was sorry to read your post about treatment.  I am currently going thru the same thing and getting ready to fight like hell with my doctor this friday about it.  I was at a stage 1 a month ago now it is being found in other places by them waiting.   You can beat this it is all in the attitude an be positive they tell m

 

sshhaarrii
Posts: 38
Joined: Oct 2016

I'm so sorry for your diagnosis. The greif must be overwhelming.

Try and be mindfully strong, there is always hope! I know it's easier said than done, but just read some of these posts. 

One thing I do know is, they have to know your physical health before they proceed with treatment. My surgery was put off for about 3 weeks due to lung function and smoking. 

I wish you well and will keep you in my thoughts.

 

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

Yes the is all scary and very overwhelming. There is a process that is followed. You do need to advocate for yourself as well though. I would push to get the biospy and consult right away. A biopsy is the only way to confirm the prescence of cancer cells. I encourage you to write down all your questions and let your dr know you need time to ask questions. Have someone with you. 2 sets of ears are better than one. Ask the dr if you can record the consult. if not have the other person take notes so you can focus on your conversation with the dr. If you are not sure what to even ask, here are some general questions that may help you get started:

I have copied this from here- https://www.cancer.org/cancer/non-small-cell-lung-cancer/detection-diagnosis-staging/talking-with-doctor.html

When you’re told you have lung cancer

  • What kind of lung cancer do I have?
  • Where exactly is the cancer? Has it spread beyond where it started?
  • What is the stage of my cancer, and what does that mean in my case?
  • Will I need any other tests before we can decide on treatment?
  • Have the cancer cells been checked for gene changes that could affect my treatment options?
  • Do I need to see any other doctors or health professionals?
  • If I’m concerned about the costs and insurance coverage for my diagnosis and treatment, who can help me?

When deciding on a treatment plan

  • How much experience do you have treating this type of cancer?
  • What are my treatment choices?
  • What do you recommend and why?
  • What is the goal of my treatment?
  • Should I get a second opinion? How do I do that? Can you recommend someone?
  • What are the chances my cancer can be cured with these options?
  • How quickly do we need to decide on treatment?
  • What should I do to be ready for treatment?
  • How long will my treatment last?
  • What will treatment be like?
  • Where will my treatment be done?
  • What are the risks and side effects with the treatments you suggest?
  • Will treatment affect my daily activities?

During treatment

Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but asking the ones that do may be helpful.

  • How will we know if the treatment is working?
  • Is there anything I can do to help manage side effects?
  • What symptoms or side effects should I tell you about right away?
  • How can I reach you on nights, holidays, or weekends?
  • Do I need to change what I eat during treatment?
  • Are there any limits on what I can do?
  • What kind of exercise should I do, and how often?
  • Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?

Be sure to ask about immunotherapy. Many have seen great success even in stage 4

There is always hope. With new treatments coming out all the time, particularly with lung cancer, having cancer now is not even what it was like 5 years ago when my husband was diagnosed. His oncologist told him at his appt a few months that if he was dignosed today his treatment would look very different.

I know this is hard but stop, breathe, take a step, breathe, take a step, breathe and repeat.

 

aquavette66's picture
aquavette66
Posts: 2
Joined: Jun 2019

 Welcome to my blog Christmas Miracle. This is the fist time I have blogged or thought about it. I felt that this blog would be Helpful to others as well as myself. My journey started out October 2016 with getting a diagnosis of stage IV Prostate Cancer. I know that the header of this page states that it is about Lung Cancer please stay with me, that will be coming up soon. While this was a shock to find out to say the least, it is not the reason for this page. For those who were wondering about the Prostate Cancer it was removed even though it had spread to the lymph-nodes. I had radiation therapy after the operation to make sure that we got all off the cancer. I was then put on hormone therapy and have been on it since. So far all my scans and PSA have shown no signs of cancer.

 On October 2017 I had scans done to make sure there was not evidence of caner from my prostate showing up anywhere. I received the results to that test with the biggest blow that I could 

have ever received. I was told I had stage IV lung cancer that had spread to my liver, lymph-nodes and bone. Almost a year to the date of my Prostate cancer I was in disbelief. This cannot be possible. To top it off it was not associated with my Prostate cancer it was a new cancer.

I started off with Chemo and was able to handle 5 out of the 6 rounds suggested. Chemo is not for the faint of heart. Along with the physical issues which everyones is different I also experienced great emotional breaks that were in my own opinion worst than the physical. 

The Chemo ended up shrinking down the tumors to about half the size that they originally were. While I was happy with the results I knew that it was only buying me a fraction of time. But for 6 months I did my best to keep a good attitude and live the best I could. I then was scanned once again to find out that the cancer had come back it did not spread anymore but some of the tumors were larger than they originally were. So back on chemo again. I was suggested 4 rounds but I wanted to go 6. My body said to me no no no. You are only going to be able to handle the 4 rounds. While I was getting the Chemo for the second time I was looking into Immunotherapy. There seemed to be some good results but the one thing that freaked me out was, how it can attack your good cancer cells and cause major organ failure or death. While that stuck out in my mind, I knew that it was not a very high risk of dyeing from it. Also I did not have the bio markers that helps the drug to work. But the drug was one of the only ones available to people that did not have the bio markers. So I spoke to my family and while some were worried about the side effects and that I did not have the bio markers that allows it to target the cancer. I made the decision to still move forward and start Immunotherapy.

Now I have spent a year coming to terms with dyeing, living each day knowing that I do not have a future. Thinking of all the things that I am going to miss. Basically planning my funeral. As morbid as that may sound it was the only way that I could live was to come to terms with that I was going to die.    

With that being said I started the drug Tecentriq. It is taken once by infusion every 3 weeks and from what I had read was less toxic than Chemo. I said to myself I will be dammed if I go out without trying everything available to me. Only God know when he will take you.

So I spoke to my Dr about the immunotherapy and she felt that I had pretty much was not getting the desired results from the Chemo. So we scheduled a date to get started. We spoke about getting a base line scan to go by and it was scheduled pretty much a week after I started the therapy. I started on the therapy and was getting ready for the base line scan and we had a winter storm so it ended up getting pushed out 2 more weeks. So I ended up getting the scan pretty much the day after my first round of Immunotherapy.

While I was ready for the scans to come back worse than the last scans which has to due with the way the drug works. I was told by the Dr that my first few scans may not look that good because the drug while it is fighting the cancer, can inflame the cancer or the good cells that are killing the cancer can attach to them so it will look like it is getting worse before it looks like it is getting better. While this did cause some major anxiety knowing that my next 2 scans which are about 2 months apart are going to look worse and I would not be able to tell if it was the drug working or me getting sicker. 

Well like I had said, my first appointment with the Dr I was going to have a baseline scan to look at and we would go from there. As it seems that I was not positive I was. I thanked God every morning for another day and for fighting my cancer no mater how good or bad it was going. Without my faith I would have never made it through. I was close to giving up on treatment before making the decision to take a shot with Immunotherapy. God guided me and with that guidance my results were nothing short of a miracle.

I went to the Dr’s for my next round and to see the Dr about my blood work and see how bad my scans looked. While I was in the waiting room she stopped by because she could not hold in the results anymore and whispered in my ear saying that your scans look real good.  

I then seen the Dr and she said I just received the results from your scans. I had to look at them three times, I checked the name on them, I checked your date of birth was correct. I happy to inform you that after only one round of Immunotherapy your scan came back as cancer free. What cancer Dr’s and patience call NED, No Evidence of Disease. While expecting a scan that looked a bit worse than my others I was numb when I was told at this time we do not see any cancer.

My eyes welled up I had so many emotions running through me and still do. To me if you are looking for a sign that god exists then here it is.

I will continue this blog and update it as much as I can as I go through the transformation back to having a future to look forward too. I will let you all know the good and the bad as it happens. I hope to help others by blogging what I have gone through and what I am going through. So people think that once you are told that you are cancer free you can just go back to a normal life. Life will never be the same again. My hope is that my life will be better than it was before by ten fold. Just remember God is good.

The date I got my results have become my new birthday that god choose for me and it is December 3rd 2018.

Mike Landi

RocketsFan2018
Posts: 9
Joined: Aug 2018

Your story is so inspiring.  Do you have an update?

Nurse_Jeni's picture
Nurse_Jeni
Posts: 8
Joined: Mar 2017

Hi Mike, Congratulations on your results, I related to your story so well, mine was an easier journey than yours I think but there are so many points of similarity. My PET scan just over a week ago was NED (hadn't heard that term they just said no cancer seen when they told me the results) and while I have had to suspend immunotherapy while we treat the inflammation caused by the therapy my blood tumour marker is back within normal limits and my scan is clear, this treatment is so amazing, from 6-18months to live to remission in 4 cycles for me. Good luck for continued good health.  Jeni

LunaLady
Posts: 25
Joined: Mar 2019

that his lung cancer had metastisized to his brain and T10.  He was told he had 6 months without treatment.  It was recommended he have radiation and chemo, with the radiation being the first and immediate treatment.  He had 5 rounds of radiation on each spot in his brain (he only had 2 - there are many stories of people with way more than that) and then 10 sessions on his T10.  He also began chemo during the T10 treatment.  Chemo has been very rough on him this time around (he did it with the inital lung cancer diagnosis) and I think part of that is because he also had the radiation at the same time. 

However, he has had a follow up MRI and CT Scan with contrast and both show "marked improvement" in the tumors!  We don't have a definitive answer yet as to what that means as his doctor was out of town when the results came in but we will be getting that information on July 5th at his next appointment.

Jorola is right - have someone go with you or ask if you can record the discussion!  The one and only appointment I didn't go with my husband to (our youngest son has medical issues as well and I was taking him to the doctor at the same time) was the appointment when they said they found more spots.  It was a routine follow up so it was a shock and my husband missed information.  And the other side is sometimes the other person thinks of questions that you don't.  They have a different perspective.

There is hope. There are treatments.  Fight for yourself and for your health.  The biggest advantage you have is your determination and will.

Nurse_Jeni's picture
Nurse_Jeni
Posts: 8
Joined: Mar 2017

Hi Terrified (I know how you feel),

My name is Jeni, I'm 54 (yay I made it!) And I was diagnosed with stage IV adenocarcinoma of the lung in January this year. But that wasn't the start of my story so I will rewind to November 2016 when I started having problems. I started losing weight, 18kgs in a few months, and had a scree of other symptoms, which turned out to be caused by hyperthyroidism, but during tests to find out what was happening, my doctor ordered a CEA ( a blood test for carcinoembryonic antigen a hormone sometimes released by some tumours, usually bowel but not always). My CEA was 10 (normal for me at the time was <5), my doctor decided to monitor it every three months and the next test was still 10, I was worried but no one else was. My third CEA was 15 and there after it at least doubled each time. I had a chest xray- normal, bowel screen- normal,  mammogram- normal, PAP test - normal, gastroscopy/ colonoscopy, ultrasounds of neck, abdomen and pelvis, CT scans with contrast and even a whole body bone scan all normal. When my CEA hit almost 300 my GP referred me to a gynaecologist who in turn referred me to an oncologist and that is where there really scary stuff started. This was the end of August 2018 almost 2 years where I pretty much knew something was going on but didn't know what and nor did anyone else. My oncologist, who is a totally amazing and wonderful doctor and person, sent me for a PET scan..... I had a small primary tumour in my right upper lobe of my lungs, a suspicious lymph node in my retrocrural region (under the diaphragm nestled against major blood vessels and nerves) and an unusual pooling in my left kidney. At the end of September 2018 I had a wedge rescetion of my right lung apex as a biopsy which came back as adenocarcinoma of the lung <1.5cm adhered to the pleura but not through it and no infiltration, even though I had no lymph nodes tested it was considered to be stage 1b, could be worse I thought..  My oncologist said we would do another PET scan 6 weeks post surgery where she hoped the lymph node would prove to be inflammatory and be gone and we would then look at the kidney, if everything went to plan I would have a lobectomy and then be monitored with no chemo, sounded a bit scary but again it could have been worse, it was. My PET showed the node was still there and it wasn't good and now both my kidneys were showing unusual pooling. I had 2 more renal ultrasounds- both normal so I was sent for another renal scan called a DTP scan to see if they could replicate what was showing on the PET scan, if it had then it would have meant my kidneys just pooled that way, they didn't. The saga continued and I had a kidney biopsy on the 24th of December 2018 (great christmas pressent), when my results were due my wonderful oncologist was away on leave and I saw the other senior oncologist to get the results and this is where my world seemed to come tumbling down around me. In early January this year the oncologist told me that my stage 1b lung cancer had metastasized to both my kidneys and that the lymph node was therefore most likely the same, I had stage 4 adenocarcinoma of the lung. I asked about prognosis and he told me not to just take the numbers home with me (hmmm he didn't give me much else to take home) but gave me 6 to 18 months and told me the only treatment they could offer was palliative,  my tumour didn't test well for immunotherapy (less than 0.01%) and he went on to mention many people in my situation refuse treatment because of quality of time left issues. I suspect he had had a bad day as I was the last appointment and he was running very late, he also may not have realised that I had no symptoms and had had complete excision of my lung tumour. Any way my husband and I left the doctors that day totally devastated. I almost decided not to try treatment but I had a 16yo son and an 18yo son who I needed to fight for,  thank goodness. My next appointment was with my own oncologist and she was like a breath of fresh air,  so positive that we would get some extra time and that I would tolerate chemo very well due to my general health and age. My presentation was extremely unusual as I had no mets in my brain, bones or liver, just in lymph and kidneys (almost unheard of). So in late January I started my chemo with Carboplatin and Pemetrexid infusion followed by 3 weeks recovery, I accepted the used of a cooling cap (unusual torture device aimed at saving my hair which it did) and the worst thing about the treatment was when the dexamethasone I had to have for 4 days around the infusion was stopped, each time I had a couple of really bad days to go through but I got through them. I must be supremely lucky as I didn't have any other really bad reactions apart from a small leak of chemo to my left hand which did land me in hospital 7 weeks later with a horrendous infection. My liver really didn't like the chemo with my liver enzymes going high and staying there despite me not taking any paracetamol or drinking any alcohol and my kidney functions went below normal and stayed there, once causing the need for a change of dose. But wait there's more.... after 4 cycles of chemo my CEA was 704 and my PET showed minimal if any shrinkage and two new minute nodes.  I was horrified when I was told I wouldn't be getting my promised 6 cycles, I had failed chemo, I thought. My oncologist wanted to start me on immunotherapy! I thought my tumour wasn't suitable! My oncologist explained that chemo can change a tumours susceptibility to immunotherapy and she had a feeling it would work, tumours can apparently change even without chemo. So I started 3 weekly cycles with (spelling is dubious on this one) atezolizumab or something like that. 1 week after starting immunotherapy I thought I had pulled a muscle just under my rib but it turned into excruciating pain making it very hard to breathe, I thought my right kidney must be dying but after 3 separate trips to hospital (2 in ambulances) I was admitted with a diagnosis of a clot in my right lung at the base along with consolidation and an effusion (collection of fluid, probably because I could barely breathe for three days). I am a nurse so I got out of hospital asap on blood thinner injections daily. A week later I was back in hospital with high temperatures no immunity and a haemoglobin that could have needed a transfusion,  after 6 days I was discharged still with a temp but it was improving. I missed getting my CEA level done because they didn't know to do it in hospital so I just had my second cycle of immunotherapy a few days after getting out of hospital.  No reactions this time but I had some weird nerve things going on itches and aches but nothing severe so they told me it was the chemo's last hurrah. This tale is catching up to the present we are 9 weeks back or so from now, I had the correct bloods done before my 3rd cycle of immunotherapy and I have a clinic appointment before each cycle, my oncologist had a big grin on her face as she weighed me on the way into clinic and when we got into her rooms she told me she had a big surprise for me, I asked if my liver and kidney functions were normal and she said no, just let me show you this, well this was a graph of my CEA which showed the exponential rise and a very sudden a extremely steep drop!! The hormone my tumour loved to secrete had dropped from 704 down to 31 in 6 weeks, two cycles, we were both squealing and clapping tears in our eyes. It was a good sign but I needed confirmation and I was due for a PET scan again (my oncologist was going on maternity leave in two weeks so she offered to bring the scan forward a week so she could give me the results). I had my PET scan a week ago last Monday and got called in by the reporting doctor, gulp, there was obviously something wrong with my lungs as she questioned me about the clot and xrays taken since but she didn't say what it was and I was too scared to ask. Luckily for me my oncologist rang the next day and asked if I was deliberately trying to make her deliver her baby early lol she had had a phone call from the doc who reported the PET scan saying I had a case of pneumonitis (inflammed lungs secondary to the immunotherapy) apparently my doc said okay but what about the lymph nodes and kidneys? The reply was there is nothing there, no cancer at all anywhere. I had another CT scan the next day to confirm it was pneumonitis (which is treatable) and today I had an appointment with the clinical nurse consultant who will oversee treatment of the inflammation. I never gave up hope even when all hope seemed lost, I had a motto.... I'll just keep living till I'm not  and worry when you have something actual to worry about not what might be, I know the last is sooo hard but attitude does help and being positive is essential never give up! Sorry this was so long but I truly hope it helps, they are getting the most amazing results with lots of new treatments and what was incurrable just months ago is now being successfully treated.  I went over 2 years not being treated because we couldn't find the cancer and today I am in remission, I don't say cured far too early for that but I know there is always hope.

Lee7189
Posts: 4
Joined: Aug 2016

Hi Terrified,

Don’t give up. A bad prognosis doesn’t mean that’s what is going to happen to you.

May 2016 I was diagnosed with small cell lung cancer that had metastasized to my liver.  My prognosis was 2-4 months without treatment and 8-14 months with treatment.

I’ve been in an out of treatment for over 3 years.  A lot longer than the prognosis.

I’v had chemotherapy protocol of cisplatin and etopiside. After my initial treatment of 6 cycles my scan showed NED and i went into an immunotherapy clinical trial.  5 months of that and i had a recurrence in my lung and a lesion in my brain.  After targeted radiation treatment the brain lesion was taken care of and I was getting more chemotherapy.  I was switched to carboplatin and etopiside and after 6 cycles i still had a small spot on my lung.  Radiation treatment took care of that.  I was blessed with a 10 month remission.  

After 10 months NED I had a recurrence.  2 new lesions in my brain and some spots in my liver and 1 on my adrenal gland. October 2018 I had whole brain radiation and started chemotherapy again.  My radiation oncologist feels very confident that what he sees on my follow up MRI’s is scarring and isn’t cancer and has suggested getting an MRI in 6 months. My liver and adrenal gland didn’t completely clear after the 6 prescribed cycles so he ordered to continue the chemotherapy indefinitely.  I was pretty sad about that because the chemotherapy was really taking it’s toll.  My doctor added tecentriq to my cycles and I’m currently on just tecentriq.  Feeling so much better on just the tecentriq.  Will be getting a scan to see how I’m responding to the tecentriq mid September.

So my story isn’t a wonderful fairytale but I have survived a lot longer than my prognosis and I’m still moving forward.  Statistics are from their very nature at least 5 years old and treatments have really improved.  

Good luck to you.

pajamo46's picture
pajamo46
Posts: 6
Joined: Oct 2016

I also have stage 4 Secondary lung cancer. Its a non small cell type, and is not responding to Chemo, but hope to trial a new Chemo drug next month.

It may be of interest for you to have a look at  "The Joe Tippens story" which is a blog from a Recent cancer survivor. He had a terminal cancer thru out the body, including Lung cancer. Joe was advised to use Fen ben dazole, which is currently used as a parasitic and worming treatment in animals. This drug had previously been trialled during cancer research some years ago. Its an interesting read, and may be of help to you. The brand name is Panacur C, and the company is well known Merck.

Hope you are sucessful in defeating the cancer...forever be optomistic.

jennerrator's picture
jennerrator
Posts: 10
Joined: Apr 2019

I know the stage differences are major but I have to wonder if the Meds. make a difference..no matter what stage.

I had stage 1A non small cell lung cancer and they removed it and I had no chemo...meds...etc... but it sent it to my brain and then called it stage 4. After having it removed, they put me on a chemo med called Tagrisso. I only had surgery and one radiation treatment and on the med for 1 1/2 year now and all has been good.

Just curious what med are they putting you on.

 

 

RocketsFan2018
Posts: 9
Joined: Aug 2018

Just hope you are okay and wondering how this therapy is working.  My husband has stage 4 cancer and wonder if this is a good trial.  Wish you the best

mechellelong123
Posts: 5
Joined: Aug 2015

Romans 12:12 Rejoice in the hope. Endure under tribulation. Persevere in prayer.

ChristinaCal
Posts: 1
Joined: Sep 2019

Hello!  First timer here and just wanted to say hello.  My name is Christina, from California :) Diagnosed with lung cancer in August 2018, a complete shock!  No history of cancer in the family, non smoker/drug user, non exposure to second hand smoke ... sheez I don't even eat meat but somehow it found me.  I am currently in treatment at Stanford Hospital in Palo Alto, CA.   I just started a new drug called Lorlatinib (Lorbrena), it's fairly new on the market, just released by the FDA in December 2018.  Horrible side effects and just wondering if anyone out there is on the same drug and their experience?  Would also love to hear how it's working for you!   

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

Just wanted to say "Hi" to all you newer folks and let you know about the chatroom if you did not know about it already. It is a live chatroom busiest from 9 pm EST onwards nightly. To find it look up at the top where is says Cancer Survivors Network in yellow/green lettering. Right under that you will see a blue box that says chatroom. Just click on that box and you will be whisked away to a group of very friendly group of survivors and caregivers. Our saying is "once you are here, you're family."

Many often don't know how to jump into to the chat. There is a darker blue box at the bottom of the screen. Type in there and just hit ENTER when you are done typing. Whoosh! Your words appear in the chat screen. Please do not be shy. Jump on in the conversation. Sure some of us know each other for awhile but we love to meet new people. In chat we support each other the best we can and ya we share a few laughs, a few tears and even some great recipes! Come on over!

blessme's picture
blessme
Posts: 11
Joined: Apr 2019

I have not been on in awhile just got my second CT last week I am Cancer free. I had surgery and had my left lower lobe removed in May. I will be having another CT in Jan 2020 .God Bless everyone on this planet having to live and fight Cancer.The end of the year will still be hard for me I still cry everyday for my husband,just miss him so very much. I want to say thank you for being here for everyone.God Bless you

 

eiams
Posts: 1
Joined: Sep 2019

My dad is diagnosed with an extensive case of SCLC. The doctor has prescribed a palliative chemo with carbo and toposide but no immunotherapy. He is very scared. Our family is not sure whether he should go through with the treatment. He is 80 years old. Please help.

 

mechellelong123
Posts: 5
Joined: Aug 2015

I pray that your family is able to make the right decisio. Continue to research, this forum offers a lot of great resources and experiences that may help you. “Rejoice in the hope. Endure under tribulation. Persevere in prayer.”—Romans 12:12

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

Unless your dad has been deemed unfit to make his own decisions, this is his life, his body, his disease and he is the one who needs to be provided all the information so he can make his informed decision. Some, and this is very very dependent on the situation, who are stage 4, do start immunotherapy. However the person has to be a good candidate by even having the right type of cancer, in good health otherwise, on no other medications that will counteract the immuno drug and the cancer is not so far advanced it is beyond hope.

sarabb
Posts: 3
Joined: Oct 2019

hello I am new to this, I was diagnosed with cervical cancer 2 years ago and now lung cancer. Survival rate on google is horrible, now i cant sleep.

I dont know the stage yet or the formal name to this thing but am really scared. Pet scan showed 4 nodules, 2 on each lung. My oncologist says hes more than sure its recurring cancer. I dont want to be scared

 

sarabb
Posts: 3
Joined: Oct 2019

Wondering how you are doing

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