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Stage 4 lung cancer and chemo

ginnpat
Posts: 13
Joined: Jun 2018

We are new here. My wife was having problems getting enough oxygen. Our PCP put her on 24/7 oxygen and referred her to an EENT after CT showed enlarged lymph node and small mass in her right lung. He did a Bronchoscopy and took some cells from the affected lymph node. It was small cell cancer. Went to an Oncologist he did a PET scan and lymph node and lung lit up along with a spot near each kidney and one on the liver. He said she was in Stage 4 and the only treatment available at this point was Chemotherapy. She is on a schedule that is 3 days of Chemo then 18 without and repeat. Her first one didn't really make her feel bad at all. #2 she was not feeling real well and super tired for a week. #3 is coming up Tuesday. We are both wondering will this one make her feel even worse. We are both scared about the unknown? She has a very upbeat attitude about this so far. The doc said there is no cure but without treatment she would only live months, with, possibly 1 or 2 years. Would like to know how this has affected others and kinda what to expect with #3.

jorola's picture
jorola
Posts: 193
Joined: Mar 2016

probably but she may surprise you. I know this response is well after the fact now - how is she doing?

ginnpat
Posts: 13
Joined: Jun 2018

Well the 3rd treatment hit her a little harder. It has been 8 days now and she is feeling somewhat better. Had a real bout with constipation then diarreah. Hoping she is over that today. She goes in the 15th for a CT to see if the treatments have done anything. Hoping for good news. She hasn't been eating a lot sleeping a lot. Thanks for getting back to us.

katowe68
Posts: 11
Joined: Jan 2018

Hi I have Stage 4 lung cancer and I am receiving Keytruda for treatment.  It has minimal side effects.  I am doing well.  As far as the fear of it all, I just pray and cry and cry and pray.  Some days I am strong and others not.  I suggest that you look at the smaller picture and take one day at a time.  Even though the doc said 2 years, he/she does not know.  I am going into my second year.  I can only hold on to God, that's all I have.  My thoughts and prayers are with you.

ginnpat
Posts: 13
Joined: Jun 2018

We know just what you mean. This really blindsided us. Not how we planned on spending our retirement. I am disabled also and this is a real strain but I'm doing it. We had some help from my daughter once but the newness wore off I guess. She lives 300 miles away. My Grandaughter who we raised is married to a career USAF guy. They got a humanitarian transfer closer to here then Texas but don't know how much she will be here to help either. She has a new baby 2months old now. She flew up and spent a week here. He has to report to his new assignment on Sept 30th so we'll see how that goes. We are going to try to make a trip to Walmart tomorrow. I lost both legs below the knee 10 years back and have a bad heart, have had surgery but outcome no good so it makes things difficult. I realize she is not herself but sometimes all the criticism gets to me but I try not to. We are doing our best. I don't believe we can get home help we are not on medicaid plus we are 3 miles inside a county that has no palliative care available. We have no family here all 300 miles away on the other side of the mountains. We don't want to move because all of our healthcare is here and have been with the same docs for over 20 years plus it is about double in the cost of living over near Seattle compared to here. Prayer and crying is it for us. If she is really bad she calls her sister who is also stage 4 different cancer started as breast had both removed along with lymphnodes and was in Remission but it reared it's ugly head again this time in her back so they talk and cry together.

Calibraska Lady
Posts: 1
Joined: Oct 2018

Hi,

may I ask, what were your pdl-1 values and how is the Keytruda working?  My husband just started chemo with Keytruda, but so far no shrinkage.

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jorola
Posts: 193
Joined: Mar 2016

They may be able to link you to services in your area that can help you. Call 1-800-227-2345 and they are there 24/7. They also have people who can just answer questions about cancer, treatment and a variety of cancer related topics. Please call. I hate to see you two struggle so.

ginnpat
Posts: 13
Joined: Jun 2018

OK will give them a shout and see what I can find out. We have to go to Walmart today and just hoping she feels good enough to do it. When You go out when you are on Chemo do you wear a mask and gloves when you were in public? I guess they call this the vadir stage or something like that when your immune system is at its lowest point 7-10 days after last Chemo treatment which she is 9 days today. Don't want to risk her getting an infection of some type. She wants to go to help because I don't know where stuff is and I'm in pretty bad health also. They put a pig valve in my heart 6 years ago and it leaks as bad as the old one because of calcificatioon where they had to sew it plus getting around on prosthetic legs is not the easiest. We just do what we can. Thanks for the reply.

jorola's picture
jorola
Posts: 193
Joined: Mar 2016

Yes some people's immune systems are really affected by the chemo. My husband fortunately did well but my uncle did not when it came to that. It ceratinly can't hurt to take precautions but remember touching objects others have touched is a more common way to pick up something so yes either gloves or antibacterial sanitizer is something good to have. I truly hope CSN help line can link to some support because the both of you can really use it. Thinking of you both.

ginnpat
Posts: 13
Joined: Jun 2018

I am almost afraid to ask this but how is your husband doing. She is already at a point that she is going to ask them next time if this is the way she is going to feel for the rest of her life. If it is she is having her doubts about continuing. He already told her that without the treatment she would be gone in a matter of months, with the treatment 1 to 2 years or possibly longer. She has had a worse time with each treatment. This is 9 days now and she said she hates making me do the shopping which I have never done she has done it for 35 years and doesn't like making me go out in the heat and the smoke. I have COPD also and had a nodule removed from my right lung with Cyberknife but it was no biggie. I told her I would rather do this then not have her around, She is having a real problem accepting that.

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dlb208
Posts: 1
Joined: Jul 2018

Try immunotherapy! I have heard the "cure" word used more than once with Keytruda. I took Opdivo and have been in remission 2 yrs after being given an 18 month prognosis.

jorola's picture
jorola
Posts: 193
Joined: Mar 2016

There are tests you have to go through, easy ones though, to see if your type of cancer is the right type that the immunotherapy will work on. It does not work on all lung cancers.

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jorola
Posts: 193
Joined: Mar 2016

He is has been NED - no evidence of disease - for 3.5 years now. He was stage 3b squamous non small cell lung cancer. Initially he was given 8 months to live. After harsh chemo and radiation treatments, as he was 40 when diagnosed and otherwise strong and healthy, he is now cancer free. Will that last forever? Who knows? We just live life to the fullest every day and are thankful for every day we do have.

ginnpat
Posts: 13
Joined: Jun 2018

Well the doctor was real straight forward with us. He said there is no cure. She has small cell lung cancer he said the type you get from smoking. I don't know for sure how much Medicare will cover or what they will cover. We are at their mercy since I retired. We spent nearly all of our savings when I got sick in 2007 and lost both legs below the knee, plus paying $1500 a month to keep my wife insured after I turned 65 for 2 1/2 years. The rairoad found me a new job because they didn't want to chance me being an engineer anymore for fear I could get hurt so they found me a desk job that included driving about half of it. Funny they never thought twice about having me drive crews around but mostly I was at a desk, a dispatcher of the other vans most of the time. We have a good supplement also through the RR which picks up anything that Medicare approves but but only up to the amount that Medicare allows. Luckily here doctors accept Medicare as full payment. She couldn't get into anyplace like Cancer Treatments of America I've seen advertised, they don't accept what MC pays. But where we go is a highly rated Cancer Center here. I just don't understand why if some of these places have better ways of treating you they don't make it available to older people that have MC. I got off the subject there sorry. We are both just so screwed up over this. We both completely forgot our 35th anniversary day before yesterday

 

We'll find out something more by the end of the week hopefully. We told them she would try new treatments that they are testing if others fail. I don't know if Medicare has a cap on how long they will continue paying or not. The type of chemo she is on is cisplat/etoposide if anyone is familiar with that?

ginnpat
Posts: 13
Joined: Jun 2018

They checked 5 spots and all were reduced in size by nearly 1/2 here they are: first number what they were 2nd is what they are now

R Lower Lobe Lung

3cm-1.2cm

1st Lymph Node

1.6cm_.4cm

2nd Lymph Node

2cm-.5cm

Liver

3cm-1cm

2 small spots near kidneys

Non Detectable 

So promising results, going for 9 more chemo treatments, have had 9 so far. The last 3 put her down about 10 days, worst so far.

 

jorola's picture
jorola
Posts: 193
Joined: Mar 2016

Here's hoping the treatments don't get any harder but continue to do their thing and shrink that crap to nothing!

jwl
Posts: 2
Joined: Sep 2018

Hello, I am new to this site, and discussion group.  In fact I have NEVER joined a discussion group before.  Never really had the need.  Now I am reaching out to all of you who are experiencing this ugly disease that is so rampant.  My husband was diagnosed a month ago with stage 4 lung cancer.  It has metastasized to many of his bones and adreanl glands.  I am heartbroken.  He is 64 and just retired less than a year ago.  He had the largest lesions radiated just recently and had his first chemo treatment yesterday.  So far no side effects, but Doc said that could occur within 1 to 2 days later.  My biggest concern and worry is that he is NOT eating....very little appetite.  He tries, but has no desire to eat, so it's very difficult.  Is there someone who could give me some advice on this?  I offer him many options.  He drinks Ensure, will have a smoothy now and then, but it's hard to get down.

Thank you in advanace for your help with this.

tameling
Posts: 2
Joined: Sep 2018

I urge you to discuss using marijuana in its various forms with your oncologist. A marijuana derivative, Marinol, is a FDA approved prescription medication available everywhere. Unfortuantely, Marinol, while legal, is not as effective or useful as actual marijuana for a number of reasons.  Marinol has side effects that marijuana does not. Marinol is expensive when not covered by insurance. Users of Marijuana have the ability to adjust the dose precisely, and it can be consumed in many different ways: using an electronic vape, smoking a joint, or consuming a wide variety of edibles, such as baked goods, candies, pills or liquid drops.  I have directlly observed the benefits of Marijuana and its derivatives on friends and family who have suffered from loss of appetite, nausea and insomnia resulting from cancer.  There are many medical academis research and clinical trials validating the efficacy of Marinol and Marijuana. 

jorola's picture
jorola
Posts: 193
Joined: Mar 2016

Sadly this happens a lot with many cancer patients. There are some meds that can be given to stimulate his appetite - some come with even nastier side effects and may not be worth it. However loss of appetite usually comes later and not soo early. He really needs to eat as much as he can especially protein to beef up for when he truly cannot eat. So yes make sure he see his dr about this. Hope things get better.

jwl
Posts: 2
Joined: Sep 2018

Yes, I think this is all too common with cancer treatment.  He began having nausea and vomiting with radiation.  The docs were stumped as to why.  I'm doing all I can do, but mostly he tunes me out.  I have to be strong...but oh my goodness, this is the most difficult thing I have ever dealt with....but life for him has got to be unbearable.  I am so sad.  

jwl

jorola's picture
jorola
Posts: 193
Joined: Mar 2016

Remember you can only do what you can do. And actually you need to remember to take care of yourself first. If you don',t you can't care for anyone if you are burnt out, sick or exhausted. Go easy on yourself and enlist help anywhere you can. If you are not sure of any resources available near you can call CSN at  1-800-227-2345 - they have people answering 24/7 and can help with connect you with resources ok? Also pop by that chatroom as say hi. The busy times are 12 noon and 8/830 pm EST. Take care.

ginnpat
Posts: 13
Joined: Jun 2018

My wife got so sick after her 15th chemo treatment she almost died. Her WBC was down to .3. She fainted in the bathroom and hit her head and broke a bone in her ankle. She is healed up from that so they checked to see what they needed to do next because the doc said no more of that type of Chemo. They did a new Pet Scan and the results were amazing. All of the spots that lit up before were gone except for one on her liver and it has shrunk dramtically. So they are sending her to the center Radiation Oncologist and planning on hitting that spot with Cyberknife. So no more Chemo for now. What should we make of all of this.

Ginny and Pat

Bozebabydoll
Posts: 1
Joined: Nov 2018

Hello everyone, my name is Tisha and my husband (52) was diagnosed August 1st with stage 4 Non Small Cell. It has metastisized into both lungs. We found out accidentally, he had a pulminary embolism (blood clot in his lung) which landed him in the hospital for 12 days and then they found the mass. He had to have a chest tube for the fluid build up and blood thinners for the blood clots. Fast forward 2 months, he's lost 30 lbs and starts chemo and Keytruda tomorrow 11/13/18. I am so lost and scared, I have no idea what I am doing or how to help him, and  I don't know what to expect. We live in a very small town so there isn't much help for us here. I just need someone to help me care for him after the chemo starts, how do I make him feel better, what can I do to ease the symptoms, what are the side affects? I have so many questions. There is so much information on the internet and it is very overwhelming. Can someone just talk to me? 

Ocon7954
Posts: 1
Joined: Dec 2018

hi,

my name is Donna.  My husband has been diagnosed with Stage 4 non small cell cancer   I can certainly understand what you are going through. He was diagnosed just one month ago.  There is nothing pretty about lung cancer except, of course, being able to beat it.   My husband is exhausted most of the day.  We are on day 6 pst chemo. His main complaints are weakness, bone pain, constipation, lack of appetite, sleepiness.  We take each day as it comes. I am trying to find things that he can tolerate food wise, as his tastes seem to be effected. 

 

  He is tolerating Ensure well,    Tylenol 650 mg is helpful for his bone pain and headaches. Dulcolax relieves constipation.  An electric blanket helps keep the chills away. Extra toothbrushes and Biotene mouthwash has kept mouth sores away so far   Of course short sleeve shirts and zip up hoodie are just convenient 

   It is helpful to have a purse size “planner” to keep track of appointment dates and jot down questions you might have.   I am told and have read that marijuana is really helpful also.    Also, good to have a thermometer handy, the kind where you can just swipe a forehead.    And most importantl, although you will almost always be overwhelmed with all the new tasks that are in front of you daily, just a quick prayer will bolster your endeavors    Best of luck to you and your family. 

jorola's picture
jorola
Posts: 193
Joined: Mar 2016

1-800-227-2345 - they have people answering 24/7 and can help with answering almost anything cancer. They can help connect you to resources in your area like finding funding and providers that can help you right now. Also have you talked to the social worker at the hospital/treatment center where your husband is being care for? They are another great resource. I also welcome you to come visit the chatroom. It is the busiest at 12 noon and 830 pm EST daily for people to talk to who have been where you are for helpful suggestions and just to vent and be heard. Truly all the best to you and hubby.

ginnpat
Posts: 13
Joined: Jun 2018

Well my wife is almost in remission. She has one small spot on her liver. They are going to use the Cyberknife on that. She is going to get another Brain MRI Sunday if it is still clear which is what we are hoping they are going to do Low Dose Radiation to her Brain. 10 treatments. They said they wouldn't do that unless she was in full remission. She will be if Cyberknife works for her like it did for me. We are kind of apprehensive about this. Has anyone here had this procedure, the radiation to the brain part. The Chemo worked for her but the last treatment almost killed her. She was in the hospital for a week then a week in Rehab home to get back walking. She was really sick, her WBC was down to .3, he said if I hadn't gotten her in that day she wouldn't have survived. She is on the mend and feeling pretty good but now there is this to do. It seems like it never ends but it seems to be working so far what they have done.

Ruger243's picture
Ruger243
Posts: 4
Joined: Aug 2018

Hi i am being treated for limited SCLC. had a 2.5 cm lung mass upper left lung. had the upper lobe removed 9/14/18.1 lymph nodes in chest tested pos. doing chemo 3 day then 21 days off for 4 sessions total.plus radiation every day to the chest. i will add its no fun at all but better days are comming. and yes they talking about the preventice radiation to the head also.i will keep you posted. how are things going now?

ginnpat
Posts: 13
Joined: Jun 2018

She is or was doing the same chemo. She made it through 5 sessions and then it almost killed her. She was supposed to have 6. On the 5th one the first day she felt really bad went up to the bathroom and passed out hitting her head and broke a bone in her lower leg on the 3rd one she was really feeling bad. They wanted her to come in and get some IV fluids cause they thought she was probably dehydrated but she is like me very stubborn by the next day she couldn't walk. I got the neighbors to help me get her from the bedroom to the car and took her in. They did a blood test and said she had some type of infection and needed to go to the hospital, so I took her right over to ER they checked her in got her on fluids and sntibiiotics, her oncologist visited every day they gave her an infusion of platelets. Her WBC was .3 or almost non existant. He got her out of the danger zone, then they sent her to a rehab nursing home to get her walking again. So a week there and she could walk a little, obviously no more of that chemo but it had done it's job, her follow up Pet Scan showed no Cancer except one small spot in her liver. They decided Cyberknife would be the answer for that. She has to go in on Tuesday and get the Fidicuals (not sure on spelling) which are small gold pellets around that spot so the Cyberknife can target that spot easily. Then 3 treatments of that and it should be gone. That would put her in complete remission but that also means she needs the Preventative radiation on the brain 10 treatments low dose complete brain. She had an MRI on her brain last week and still no cancer in the brain. So watch out as you get further into this chemo. For her it went from not feeling any different to what it was after the 5th actually the 15th day of the chemo. He gave her 9 months to 1 year of life before she got this kind of response to the chemo. I'm hoping this changes things. I just feel lost. We have been together most of our adult life and would be lost without her. She really has very few symptoms a feeling that she has something that needs to be coughed up in her throat but that is it. I hope he is wrong. The chemo took care of spots on lung 2 lymph nodes kidneys and 2in the liver just the one left. I'm hoping for at least 2-3 years, maybe I'm dreaming but I hope not. Must be the same type of cancer as yours SCLC I believe it is extensive because it was not localized to just the lung, he just called it Stage 4.

I wish I could take it away from her and give it to me. I never even dreamed she would be the first to go and hoping things will get somewhat better. The only real biopsy that was done was on her lymph nodes. I guess it was assumed the rest of the spots that lit up were the same. Make sure they are watching your blood count closely. They just did a blood test before they started the first day of her 3 day treatments. If it would have been checked on the 2nd or 3rd they would have known how bad she was. He told me if it had been 1 more day we would have lost her. Very scary thing, the treatment is worse then the disease. But if it works its not. Good luck on yours. Her treatments she felt worse with each subsequent one. Not trying to scare you just let you know what happened to her.

We will be very interested as to how the radiation goes. She has had no radiation yet. Sorry this got so long.

Ruger243's picture
Ruger243
Posts: 4
Joined: Aug 2018

so i finish round 3 of chemo on 12/05/18. I waiting now to write to see if i had any differences then the first two. my white cells did dip more this time  too 3. 45  four days before i was do for round 3.the day of chemo retest white cells back to 8.13. so that was good. this round did seem to hit me harder and lasted a good 8 days before i had it together. vs 6 days for the first to. i have one more round at the end of December and im done. how is your wife doing? did that zap that last spot? hope all is well. what was the chemo they use?

ginnpat
Posts: 13
Joined: Jun 2018

She is doing pretty well. The chemo got rid of all the spots that lit up on the initial pet scan except for 1 on her liver. They are going to Cyberknife that one with 3 treatments. Then they want to do low dose radiation to the brain 10 treatments, because they said that this SCLC when it returns likes to come to the brain first. She had a new MRI a week or so ago and none there so thats the plan. She is somewhat scared of the radiation. Like she says she doesn't like anyone messing around with her brain. I understand that totally. We were pretty amazed at how well the chemo worked other then almost killing her. After a week in the hospital and a week in a rehab nursing home to get her back up walking. The chemo really did a job on her. He said no more of that type of chemo for her. Just glad I got her in in time. Our grandaughter who we raised just was here for a week with her 7 month old baby, that really made things better for her. She really enjoyed the little guy. Her husband is in the USAF and because of Gins illnes they gave him a transfer to a base that is only 275 miles from here instead of in Texas so that makes it somewhat easier for her to come over. We live in Eastern Washington and all of her and my family live in Western on the other sdie of the mountains. They all want us to move to that side which is where we are from. We came over here because I could hold a much better job here, but I am retired now and have been for 7 years but it is kind of a big thing to undertake, selling this place and getting another on that side then moving. All of our familyies have said they would help us and it would be great to live back over there but it's a big undertaking. Besides her Cancer I am a double below the knee amputee, I get around well but can't do any heavy lifting;or most of the things related to moving but Gdaughter said they would pay for movers.

Flobaby25
Posts: 1
Joined: Dec 2018

my mom was recently diagnosed with nsclc she is 80. Has congenatal heart failure and kidney issues. I’m doing my best to help them navigate this new world. I’m looking for an answer to how long she will be with us (my dad is 82 and stubborn as heck). They hear only what they want to hear. Had first oncology appointment today. Dr said her diag has taken too long and tests from a month ago could be no longer useful. It’s stage 4 with metastasis to pleural wall and rib. He mentioned radiation. Possible chemo. I get that no one knows how long...I’m just wondering what to expect...I don’t know...

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jorola
Posts: 193
Joined: Mar 2016

Stage 4 does not mean what it use to. With immunotherapy who knows what could come. A lady I know on another form is stage 4 and just had a CT scan after being on immunotherapy for a year and guess what? They can't find her cancer! that's right - no evidence of disease! How's that for awesome!

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