Stage IV Small Cell & Non-Small Cell Diagnosis

When my husband, Woody, said his lung cancer was diagnosed as both stage IV small cell & non-small cell, I thought he was confused. We talked together with the oncologist yesterday and it turns out to be true. They even did a second bronchoscopy and biopsy and sent it to some 'super expert' pathologist to verify, because the doctors and pathologists didn't believe it either. The non-small cell is large cell. They are not sure how much of the nerf football sized mass in his lung is large cell and how much is small cell - nor are they sure if the spots on Woody's liver and adrenal glands are large cell or small cell.

They start chemotherapy on Monday. The way I understand it, if the mass is mostly small cell, the chemo will help as it grows the fastest, but is most responsive to treatment. The large cell doesn't grow as quickly, but doesn't respond as well to chemo.

Woody seems to be going downhill quickly since they first spotted the huge mass on his lung in an x-ray on June 4... He has lost 25 pounds and his tatoos are shriveling. Eating and sleeping are rough. He is not in a lot of pain, but the coughing spells are difficult. At least the spells are less frequent with the meds.. Woody hates to be in public now, because he thinks folks think he has the flu and is spreading the virus...

Right now, I can't help but wonder if the chemo will prolong his life or just prolong his death. Guess we'll have to try it and see...

Woody started complaining about shortness of breath, fatigue and coughing problems few years ago when we lived in Americus, Georgia. They found spots on his liver a when they did an MRI and they cultured some spit. The doctor said he had been carrying around a pneumonia virus for quite a while. We can't help but wonder if he wasn't also carrying around lung cancer at the time. Cardiologists did about a zillion $$$ worth of cardio tests and angioplasty both in GA and in OR and couldn't find an explanation or suggest a treatment for his irregular heartbeat and racing heart (often as high as 185 BPM while sitting still).

I'm worrying about how to keep my job with the State of Oregon and care for him through this. I can use FMLA/OFLA, but if the chemo does lengthen the process without improving his health, those weeks will be gone before I know it... I also just used the last of my sick leave. I didn't have a lot built up since I just started this job in January 2008. Wish I still had the hundreds of hours I forfieted when I left my job with the State of Georgia to move here...

Sorry if I'm blathering, but it does help to write these things down so they stop swimming around in my head....

By cards7up
Posted July 4, 2009 at 9:28 am
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Hi there, did they not do a liver biopsy yet? What is he on for his breathing problems? My mom only uses Advair for her breathing 2x day and it has helped her tremdously. As I've read here, stage IV is not a death sentence. Don't give up the fight! I understand your circumstances about being with him and trying to keep your job. Do you not have family close by, what about palliative care through the hospital? Many in my family are sharing being with Mom. She cannot be left alone in case she falls trying to get up and down. Does your husband like shakes? Feed him anything fattening and have him drink alot of nutritious drinks. Tell him he needs to do this for himself. Try not to take this all on yourself, get some support! Good luck and we'll chat again soon. JC

By murrayranch
Posted July 5, 2009 at 5:30 pm
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Woody is on Combivent for breathing and Cheratussin & Tessalon Perles for the cough. They no longer plan to do a liver biopsy. I assume they are pretty much convinced of the diagnosis and metastasis and didn't want to delay treatment awaiting another test result.

I'm not feeling so desperate for hospice care right now. I took Woody to the ER on Friday with a fever, nausea, and vomiting - found his white cell count was high & he had a UTI, and pneumonia, and Atrial Fibrillation along with the racing & irregular heart beat. They kept him for two days. Did another chest x-ray, CAT Scan, an MRI, and lots of other tests. Good news on the MRI - no metastasis to the brain! : )) Gave him some Bactrim DS, Pneumovax, 2 pints of blood, blood thinner, etc.

Woody was discharged this AM and is feeling much better. When he discharged him, Dr. Petrunin said Woody now only has the lung cancer, but has probably had that for years. Woody even went in Safeway and walked around while we got his prescription filled and vacuumed the house when we got home! : )

I was afraid he was too sick to start chemo, but he's much better now and will still start chemo tomorrow. His cough and nausea is better and he has no pain.

We can hold off on hospice help for a while. If the chemo helps as much as this hospitalization did, I might even be able to go back to work! Thanks again to all who replied with your advice and prayers...

By Melluvmutt
Posted July 6, 2009 at 2:18 am
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I love you very much! This has to be so hard on you. I hope you know that I will do anything you need. Please don't hesitate to ask. I have a lot of time off lately. I don't want to be a bother or get in the way, but I'd love to take a little of the stress off of your back if possible! I love you and am sending you a big hug!

By copaiba
Posted July 6, 2009 at 9:15 am
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Hi,
I just went through this with my mom so I probably shouldn't be reading the posts anymore. Please take all help offered and beg for more! With mom, everything could change every week or 2. She had SCLC that had metastesized to her brain and spine. She wasn't diagnosed till she could not walk any longer. It is wonderful that your husband's cancer isn't in his brain! I think whole brain radiation was the harshest treatment and had the least manageable side effects.
There was Fenergan and Aloxi for the nausea of chemo; Mom got Etoposide/cistplatin for 2 treatments and Etoposide/carboplatin for 2. Mom took decadron(dexamethasone) for the activity in her brain but I have to say, it did wonders for her appetite/energy and also controlled the nausea from chemo. The side effects of dexamethasone are plentiful and some not good but it depends if what they are doing is palliative treatment. And everyone responds differently to different drugs...mom was on so many drugs that side effects were just something else like cancer in another area...you just keep looking ahead to another possibility for making each day the best it can be.
But you guys aren't there yet. Keep fighting and maybe they can do intermittent treatments of decadron..long term dex has bad side effects...so your husband can put some weight back on. He needs to stay on as high calorie and healthy a diet as possible, avoid sugar when you can (cancer likes sugar!) and lots of fat isn't great cuz studies show a diet high in fat makes SCLC spread faster. Its very important to stay hydrated!
The most important thing of all though is lots of love and patience with each other. Not with the doctors though, don't let them get away with ANYTHING. They will tell you anything to make you think they are in control and make you feel guilty for asking questions and being scared. Especially the on call docs at the hospital...Just keep asking questions. The more interesting and varied they are, the more likely some doc will be entertained enough to do something.
As for you, take as little time off as you can while your husband can get his own food and go to the bathroom by himself. Find people to help with the everyday stuff like grocery shopping, cleaning etc. Focus your time off on doctors appointments and talking to nurses. Damn, those 2 chores alone are job enough. And let your husband help as much as possible. There will be days when he cant. Get on a treadmill or go for a walk at least 20 minutes every day. I didn't and now I'm broken.
You guys have a long fight ahead of you and you will discover resources in yourself and in your community you couldnt imagine when you didn't need them.
And probably a lot of people will tell you what to do like I am and it will get repetitive and you are smart enough to figure it out. You need lots of money and time right now and I wish I could help but I know there are people there as well who can and want to.
Just Breath and know you are loved.

By murrayranch
Posted July 6, 2009 at 11:33 am
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Hi Copaiba-
Your information is very helpful. I guess the banana cake I made yesterday wasn't such a good idea... The shock of seeing me doing something in the kitchen probably wasn't healthy either (lol)... When he retired in 2004 and I was still working, he took on most of the domestic chores so we would have time to spend together when I wasn't working.
Yes - we are just beginning this journey and have a lot to learn... We have wonderful family, friends, neighbors and co-workers offering to help. Children and grandchildren from all over the country are visiting - which has been great for his spirits and mine. I suppose we just got to get more comfortable accepting folks help with the chores. Thanks so much for replying!

By murrayranch
Posted July 6, 2009 at 11:49 am
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Thank you, Mel - I love you, too. You are welcome and loved anytime! Jim's also off work a lot now - with U of O on summer schedule. Woody or I may hide out for a while to regroup if things get too chaotic around here, but you can make yourself at home while we re-charge. Just don't take offense and understand that we are both introverts and need a little alone time to recharge.

As you can tell by my reply to the last post, we're working on getting more comfortable accepting help from freinds and loved ones. Pop & Jim will be coming - putting in AC and figuring out if we can set up the grill that lost a couple legs in the move. If we get the AC in, it won't get above 80 again... Poppie and kids are staying over one night while Chris works - maybe in the tent.

You could help me figure out what to feed him that is nutritious and high calorie, but not high sugar or fat or red meat.

I think I'm going to move the treadmill and inversion table in the living room so we can use the treadmill room for guests & maybe I'll get on the treadmill again. Woody sleeps in the living room a lot lately - particularly when he's having trouble getting comfortable, breathing and/or coughing - so the hide-a-bed doesn't work well for a guest option anymore.

By diamond
Posted July 7, 2009 at 9:39 am
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Sorry about the diagnosis. Can't help much on the knowledge base. I, however, also have both SCLC and NSCLC with mets to liver. I also have mixed cell. I was pretty much told the same about the use of chemo as you were. Cisplatin plus etoposide was used to go after sclc in liver; taxotere was used to go after nsclc in lung. Bottom line: AFter both chemo treatments, liver tumor shrank about 50 % and lung tumor neither increased nor decreased in size. Since last February, however, the lung tumor increased by about 0.1 cm. I am now on Tarceva, which has lots of nasty side effects for me.

I did, however, ask the question about the extent of each type of cancer in each organ. They either were unwilling to tell or they could not tell me.

I wish the best for you and your husband.

Jim

By murrayranch
Posted July 7, 2009 at 9:34 pm
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Hi Jim-
Just knowing you are still around and working after a September '08 diagnosis gives us hope. When Woody came home with word that they found a Nerf football sized mass on his lung on June 4, we thought he was going to be toast in a month or two. Hearing from folks like you and others on this site inspires us to believe that he can still have some good time.

Woody was in real bad shape over 4th of July weekend, but with a couple days of tests and treatments in the hospital he's feeling sooo much better. The fact that you are still working has inspired me to go back to work and save my FMLA weeks, if all goes well with Woody's chemo this week. I was afraid to leave him alone, but he drove to the store today with only the dogs for company and made it home just fine...
Thanks for sharing, Jim!

By diamond
Posted July 8, 2009 at 10:41 am
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I like your way of thinking--positive and hard core on this darn disease. I can't imagine someone going through this without a spouse or significant other. My wife is not too good at helping me but she does bug the living &*$# out of me to do some basic things, such as exercise (even if I do not want to).

This disease appears to have different ramifications for each individual--there are some general patterns. Also, there appear to be some general side effects of the various chemos, but the extent and nature of the side effects appear to widely vary.

I do not know what chemo is being administered to your husband, but I imagine there will be some side effects--again, not everyone has horrible or long term side effects. One of my main side effects was being pi*^$#% off and very verbally hostile; actually, it was an effect of the steroids. I am much more calm now.

Anyway, wish you and your husband the best and hope things go well.

Jim

By murrayranch
Posted July 8, 2009 at 3:11 pm
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Woody got Carboplatin and Etoposide this week - along with the antiemetics and a shot tomorrow to boost his white cells. I'm guessing the antiemetics are the steroids for nausea?? Something starting with 'dex'. Anyway, he is getting a little testy, but I haven't thrown anything at him yet. Knowing what's causing the crankiness helps... On the activity stuff, I just need to learn that I don't have to help him watch everything Netflix has to offer. He can watch stuff himself and I can get my tired butt on the treadmill...

Welcome to Inspire!

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