Will he make it through this? SCLC Ext. Stage.

My husband was diagnosed with SCLC Ext. Stage in Aug. 2009.

He went through the chemo and then the PCI (as a precaution) to the brain. This all ended in Feb. of this year.

He went for a CT scan and an MRI this past week and it shows the cancer is back in his lung and now he has 2 or 3 mets in his brain, about 1.6cm.

You would think nothing is wrong with him at all(he is 46) if you talk to him or see him.

He sees his radiologist on Tuesday and then most likely a forth opinion on Thursday.

From what his oncologist says she thinks he can't have chemo and radiation to the brain at the sametime. If so why not? And which one should be done first?

He has already done many months on etoposide and cisplatin, did fine on that. Now they want to put him on topotecan 5 days a week for a 1/2 hour a day. Which I have read only works in 30% of patients.

I'm just scared to death. I keep telling myself this is a dream and that when I wake up it will be all OK and he will live a long healthy life.

He was doing so so good and now this set back. I feel like I did a year ago when he was first dianosed.

Thank you everyone for reading my post,
Sherry :-)

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Sherry, first of all, I'm sorry the cancer has recurred. Though he will never be cured, he can still beat this back again and again and live for some time. They definitely want to treat the brain mets first. Then on to chemo. Sometimes doing them together is too toxic for the patient. You can post at cancergrace.org and find out what a second-line treatment would be for ext. SCLC. Do you know the size and how many lesions in the lung? Is it just the lung and brain? You'd need to provide all the info including what he had first line. The onc there can tell you what they'd do in his situation, though they don't make exact recommendations for an individual patient. Don't panic, keep him eating and hydrated. Wishing you the best. Come back and let us know how he's doing.
Take care, Judy

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Dear Sherry,

Thanks for posting ~ I feel for you and your hubby and can confirm that we are on the biggest roller coaster ride of our lives....and I'm not able to get off, and neither is your husband, although we want to...

I don't know about the concurrent chemo and brain radiation, definetely talk to some knowledgable people about that. Topotecan has shown some very good results, I don't know where you got the 30%, but that looks like where I'm headed...and I pray it's higher than that.

We have only today, and I'm grateful I woke up on this side of the grass...if we can help someone else on this roller coaster ride, or anywhere for that matter, it will in turn help us. Hang in there, girl and lots and lots of prayers....know that you and your husband are being prayed for on this site, it's out there in the universe. Look for the bright side and you'll find it!

God bless you and all of us,

Debbie

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hey Sherry -
the doc was right - chemo does booger up regular radiation - but you need to be asking about a different kind - gamma knife surgery - it focuses a small herd (about 200+) little beams of radiation on larger lesions in the brain and kills them off - and it doesn't get messed up by chemo. talk with the radiation oncologist about it.

it sounds to me like you need a bigger, badder set of doctors and tools right now.

meanwhile, take care of yourself - this is real scary - but is another bump on the rollercoaster ride of sclc. and remember to fight the beast with everything you have in you - what works best is love and laughter - so get over there and give your honey a big snuggle

many hugs
Pat

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Sherry, similar situation here. Hubby dx 7/2/10. We are doing etoposide/cisplatin now every 3 weeks. His is ext with brain mets-radiation is next-spine, nodes too. We are where you were several months ago & about to go for our 1st scan after 3 rounds of chemo. Now he has pain on his left side & his primary tumor is on the right. He is young too, only 41. I feel the same as you but I was told twice by diff doctors topotecan would be next if his scans don't show progress. I will be thinking of you & your hubby & your story prepares me for what possibly lies ahead. Keep your chin up, keep checking and loving him!

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Hi Sherry: I'm sure that is so hard to have gone through the treatment once with good results and then whammy it is back again. My husband was just diagnosed in June with extensive SMLC. So we are in the first line of treatment but with 3 tumors in his torso and 5 in his brain both our doctors and the second opinion at Dana Farber said he should have chemo and radiation. They said that they try not to do chemo and radiation at the same time because (from what I remember) the side effects of radiation can be more severe. But with my husband both teams of doctors later decided to do 10 days whole brain radiation between his 3rd - 4th round of chemo. I pray that the radiation will not have long term effects that we are not seeing. Michael has responded well to carboplatin and estoposide/toposar. He no longer feels pain. I pray that is a good sign. He just had a CT scan. Waiting for the results this Wednesday. It IS all very scary. We are just focused on living and on beating this. Michael keeps a really positive attitude.
Keep up the fight! You and your husband can do this together!
Sending you light and love.
Amy

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I want to thank everyone for there responses. I feel better knowing that hubby and I aren't alone.

I think I will know tomorrow the sizes of the tumors in the lung and I think his oncologist said it is back in the same place it was in the begining on his liver.

He just keeps thinking that this is the end. I don't work and need to be on disability myself( that's another story).

He is talking about selling the house to get me in something smaller(we have a small house to begin with), but I think now isn't the time, because the market is so bad and I think that would just put more stress on the situation we are in already.

We have two furbabys and a parrot and he wants to make sure everything will be ok when he is gone. But I can't bring myself to him being gone.

He is feeling so good and looks so good, but this monster is growing in him.

I tell him to keep up the hope and that he will be here for many years to come.

I just want to thank you all again for the kind words and the hope. I will keep you posted as to what is going on. Sometimes it is better to talk to people that are and have gone through what you are going through.

Oh and by the way tomorrow he sees his radiologist, and he was going to Loyola on Thursday for a possible clinical trial, but we think that is off because the cancer is in the brain now. She has all his records and I will be calling to see what the oncologist at Loyola has to say. If she says that the treatment he is going to get is what she would do then we won't need to see her.

I also will be calling MD Anderson this week to see if we can go down there and get him in. I have been reading about there Proton Radiation. Does anyone know anything about this?

We have a hospital here in the Chicago area that will have the Proton Radiation, but not until Jan. 2011.

Ok I have blabbed enough......LOL. Again thank you all for everything.


Sherry :-)

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Hi Sherry, My prayers are with you for some good news and successful new Tx. I, like your hubby, have Ext. SCLC w/Lymph involvement and Liver Mets and am just starting 1st line Tx. It sounds like a good thing if he is looking and feeling good, as to how he will tolerate his next Tx., just try to keep bombarding him with positive energy (yes, easier said than done)! As far as him wanting to "get things in order"; don't necessarily take that as a sign of him giving up. I have every intention of surviving this but I am also a realist and like to have all of my bases covered so I have also thought about moving to a smaller house that would be easier to maintain if I'm feeling bad, making a Will, checking into hardship tax breaks in case I need to access investment $ to pay bills.... These are all things I planned to do after losing my Mother-in-Law this Spring (before my Dx) just because, no matter HOW healthy I was, I saw that it was a good thing to be prepared for anything. He is trying to take care of you and be prepared and it will probably make him feel better. Sorry, I have rambled on... God Bless You and Hang in there!

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hey Sherry -
mets to the brain is not something you want to wait to treat. please check out this website
http://www.irsa.org/CentersOfExcellence/Illinois.html
Northwestern has a gamma knife center of excellence in Chicago - arrange for a consultation there
hugs to you both
Pat

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Who are you refering to Zormas??? I don't see any replys from someone named STAYINGCALM. I think you have the wrong thread.

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Zormas, not sure who you are addressing. I'm confused about your post.

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hey Sherry -
I forgot to answer your question - YES, HE WILL MAKE IT THROUGH THIS. and so will you. keep fighting.
hugs
Pat

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Patty,

Thank you so so so so much for your hope. I did check out the gamma knife.

There is one up where I used to live. I am going to call them tomorrow and see if we can get him in ASAP.

It seems like all the good things I read, are stuff that I am told by doctors, can't be done for Jimmy(hubby).

Not sure if I mentioned but he has two if not three tumors in the brain one is 1.3cm the other is 1.6cm and I guess the other one is really really small.

I'll know alot more tomorrow.

But this gamma knife, does it depend on where in the brain the tumors are? Is it better to take care of the tumors in the brain before the ones in the lungs? And if so why? Our luck they will be in a bad place and they are going to say they can't do the GK on him.

Between being on here, doing research(which can be more then 5 hours a day), and making a million phone calls. Thank god I don't work.

I'm glad I'm here to do all this for him. From day one he was ready to throw in the towel when the doctor told him 18-24 months to live(he asked them to give him a time frame).

He would never have done what I have been doing to keep him alive. He says he would never understand it all, and would have given up a long time ago.

Thank god I always wanted to be a doctor, I like doing all this research and understand it better then he or his family does.

Thanx again Patty and everyone else for your hope and prayers they really mean alot to Jimmy and I.

God Bless you all,

Sherry :-)

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Hi Sherry,
My husband was diagnosed 2 years ago on March 17th with sclc. He had it in his left lung & neck. He had chemo and after the 3rd treatment he had the radiation on his torso. He had very little side effects except hair loss & nightmares. A little sore throat too. After the chemo was done they did whole brain radiation as a preventative. Said the lung cancer likes to come back in the brain & it can help to have this done. A year almost to the day from his diagnosis, on March 18th, he had a ct of his chest & neck & a week later started to see cartoon type yellow flashes in his peripheral vision. We made an appt. with his oncologist & they ordered a pet scan. They found tumors in his brain, shoulder blade, right hip, liver lungs & abdomen. He was dx with both small cell & non-small cell this time. Dr. said it's very rare to have both. He had more chemo and it has been very good. They did Gamma-knife on the tumor in his brain & told us he could have it as many times as is needed. We went in at 6 am & were home by 10 am. The flashes he was seeing went away & he gained about 20 lbs. :) He was feeling really good. His last ct showed the tumors are shrinking or gone & he had been feeling really good until about 2 months ago. He started to see the flashes again & we went through the tests & they found a new tumor in his brain. They got him in for the Gamma-knife & when you have it, you have another MRI that morning. Well, they found 3 more tumors & it had only been 9 days since the last test. We knew it was the sclc because it had spread so fast. They did a bit of adjusting & we were there 8 hours this time. But they treated all the tumors that day. They said the chemo doesn't cross the blood/ brain barrier & this is why they spread so fast there. Well, he started to have new symptoms 3 weeks ago & the neurosurgons assistant, who was supposed to set up another MRI dropped the ball & we didn't get in for it until this last Tuesday. They found the origional tumor, the first one, has grown from a pin-prick size to the size of a quarter & one of the others is growing too. We were like, so more gamma-knife? Thats when they told us you can only have the procedure one time on any specific tumor. They found 3 others besides the 2 that have grown & he will have them treated on Wed. next week. The doc will be calling us on a confrence call today & let us know what can be done for the other 2. I say if you can get the Gamma-knife then by all means, do. We were told it is rare for them to do this (grow) ,but then again he has 2 types of lung cancer too.
Good Luck. I will post what they say sometime today.
Dawn

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Hi hun.My mom is 67 and was diagnosed in mid June of 2010,with stage 4 small cell lung cancer,the day after her 67th birthday as a matter of fact. She has had 3 rounds of radiation,they then stopped because they said they were shooting blind because her lung was full of luid,so they then started chemo,for 4 sessions,then stopped as well as they said it stopped working. She started yesterday a chemo pill called Tarceva.But she seems to be worse and I think it has alot to do with having to wait on approval for this medication to come through...we lost precious time where she could have had treatment.She went 7 weeks with nothing,adn we know with this aggressive cancer,time is of the essence.She has a catheder in her lung that a nurse comes to drain every 2 days,and her lung has been collapsed since the beginning. They recently found 2 "hot spots" on her other lung now,but havent clarified what it is,but It likely is cancer in her left lung now to. Its been a horried ride since diagnosis with one bad thing after another come up,and it would be good to get some good news about this. I will pray for your husband,I know now how scary this is for the family dealing with it.MY prayers are with you all.

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Sherry, Dawn,
How are your husbands doing?
Mary

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