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jme

Happy Easter - he has cancer

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My name is Jamie and my husband's name is Jeff. We have 2 wonderful boys, 6 and 13 years old. This site was recommended to us today by a friend, a lung cancer survivor.

My husband has never been a very healthy person. He's almost 18 years older than me, smokes (smoked), has adult onset asthma. About 6 weeks ago, he developed pneumonia. (It was so bad, he stopped smoking after a 35 year 2 pack a day habit.) After a week of coughing up blood and having night fevers, a nurse friend of ours suggested the ER and he was quickly admitted. He was in the hospital for 5 days, until they ruled out TB and confirmed a nasty pnuemonia. He had a "pocket of puss" the size of a softball in his right lung. He came home and we expected some improvement. He was too weak to work, he could barely even coach 2 innings of our son's Little League games without having to sit down.

A couple more weeks passed. HE started having new symptoms. Mind you, the blood cough was gone and so were the fevers. Now, he was losing conscoiusness and falling down like a sack of potatoes. Sometimes, he would convulse a bit before he woke up 4-5 seconds later. Then came the swelling. Now, my husband is 5'10" and 130 pounds soaking wet. Think Iggy Pop. Withing days, he looked like William Shatner, all swollen and bloated in the face and neck. FInally, it scared his doctors. He had a CT scan, an MRI (seizures), and was scheduled for a Bronchoscopy on Wednesday, 4/12/06. HE had a seizure before the procedure, so they decided to keep him. The bronchoscopy showed nothing (they were still thinking TB, infection in the Lymph nodes, and possibly lymph cancer. His CT showed that his lymph nodes are so enlarged (one is 8cm X 5 cm x 8 cm) and pressing on his superior vena cava and his pulmonary artery at the same time...that explains the passing out/seizures. The doctor thought that with just a few days of radiation that the lymphs would decrease, the swelling would go away, and then we could concentrate on the underlying cause. In the meantime, they did a small needle biopsy.

This morning...Happy Easter...we were told about small cell lung cancer. If it's just in his lung or in one spot, we have a decent chance. They are checking for metastisis to other organs. The 3 days of radiation that he has had didn't put a dent in the size of the mass, as the doctor had hoped. He's now even more swollen, passing out more often, every tiny blood vessel in his abdomen has ruptured. He's in pain. The swelling is so bad, his poor little heart is having to work too hard to get blood and oxygen where it belongs. HE feels like something is sitting on his chest. It's extended into his arms.

I don't know how much longer they will keep him in the hopsital. I'm a teacher and we've been on Spring Break this week, so I've been there, but we go back to school/work tomorrow. I'm scared. I'm worried. I am engulfed in sadness. We've told our boys and I'm not sure how much they understand. Jeff has a fantastic attitude. He's ready to fight.

I just want to know how to make my eyes stop leaking. He's the love of my life.

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Hi Jamie--

I am so sorry to hear about what you are going through. My husband also has the superior vena cava syndrome. They can put a stent in his vena cava if the radiation isn't shrinking the tumor off of it. I can't imagine how miserable he must be with the swelling. Keep us posted on how he does.

Rochelle

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darn it anyway...another one.

So sorry.

I don't know how much vcs affects his ability to have chemo. If he can get some chemo going he will have rapid improvement in shrinkage. Most sclc respond very well to it.

Try to see if you can get some days off work. This is too sudden for you and he is so sick to be without family right there for decision-making especially when he is losing consciousness.

We will help you through this crisis.

I know how scary this is. The fears will subside and then come and go in waves, but this is by far the scariest of them all.

Keep us posted.

Cindi o'h

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Jamie,

Sorry you had to join this board, but you

will find many answers to your questions

and load of support.

You husband is still in the hospital, they

will do all the tests possible for the swelling

and start from there for the treatments.

Keep us posted, please

Jackie

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Hi Jamie and welcome. Glad you found us. You say the doctors feel it is Limited Small Cell. Really tough it popped up were it did. You mention he started chemo today, Monday the 17th. Good news is that SCLC is very susceptable to chemo and it is great they are jumping right into getting it started! Please keep us posted. Also it is great that he has quit smoking because chemo is not as affective if you continue to smoke.

Waiting to hear how things are going.

Donna G

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Just want to welcome you here, and know that I am sorry you had to find us but glad that you did.

You guys are certainly going through so much uncertainty and I know how scared you must be. I pray they start a treatment for him and start to shink those tumors.

I will say a prayer for him for shinkage and for all the horrible swelling to subside.

We are always here for you, please keep us posted.

Maryanne

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Jamie,

My husband Alan also has small cell with SVCS. Alan

responded very well to his initial chemo and radiation to

shrink his tumor and after a couple of weeks the swelling went

down. You are going to be dealing with many emotions

right now as this is all very new and shocking. First

off do not listen or pay attention to any statistics.

this board is loaded with many good people who have

proved all those number wrong. Please do not hesitate

to ask questions. The members of this board have been

through it all. Prayers for you and your family.

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Jamie,

Welcome to a wonderful group of folks who will help you along this new.............amd very scary road. Many are sort of experts and have learned so much and will be able to share their knowledge with you. I am not real familiar with sclc, BUT want to offer my support to you at this time. Keep us updated. Good to know chemo is underway.

Kasey

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(((Jamie)))

I am so very sorry for this terrible news you received. Happy Easter indeed. :(

I know all too well the fear and sadness you are feeling. You have just had your world torn apart and what faces you is completely unknown and uncertain.

It is ok to let your eyes leak. It is normal to want to cry and scream and just rage against this horrible turn of events.

The first few months are the worst. If you are at all like me, I didn't want my husband to see me crying. He had such a fighting spirit and positive attitude I did not want to bring that down. Instead I found a safe place to let it all out. For me, I would take a long hot shower and just cry and let the tears and devastation I felt wash down the drain.

I also tend to cry a lot in the car. Wherever it happens I just let it go. You can't keep it all bottled up inside. Then come here and vent, let the loving words and support of the members here lift you up and share your burden.

Additionally, the one other thing that really stops my tears is determined research. I don't look at statistics because my husband is not a statistic, plus I believe the statistics are based on old data and are no longer accurate. But I do spend an ungodly amount of time on the internet searching for clinical trials, new medications, alternative suppliments, oncology specialists we could see. It makes me feel less helpless, like I am doing something to help in the fight.

Finally, when all those things are through for the day, and the tears are still there, I pray.

Jamie, I will be praying for Jeff, and I will be praying for you and your boys.

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Hi, Jamie, and welcome! So sorry you and your husband have to go through all this. The kids understand more than we tend to give them credit for. The leaky eyes -- part of the package. Lots of good info and support here. Keep us posted. Don

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Hi Jamie: welcome to this board. I am sorry that your husband has this disease now. I hope that it is limitied and that he can beat it into submission. You and your husband have my prayers.

Don m

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You guys are incredible. Thank you so much for all of the support. His swelling is even worse today. I'm not sure how much more his skin can handle. He got to look at himself today in a full mirror and it scared him. Our GP came back from vacation today and saw him while he was getting a liver CT scan and

was speechless. He's the only doctor who knows what Jeff looks like under all of that fluid.

dchurchi ~ how badly did your husband swell up? I also noticed that you said he responded well to the initial treatment. Did it come back?

We got some *good* news today and some confusing news also. I'll start with the confusing news... One oncologist looked at his biopsy Saturday night and said small cell with certainty. The other oncologist says that the pathology is not yet difinitive and they "don't know what it is", besides malignant, of course. Because of this, he hasn't been able to start the chemo yet.

Now the good news...He had a whole bunch of CT scans today: brain, liver, bladder, testes. They all came back "clean". He's getting another CT scan of his chest this evening to monitor the "mass". I know this doesn't mean that more cancer isn't there, hidden and waiting to spring, but it's hope wrapped up in a nice bright red ribbon. We're just in the beginning stages of this, but already hope is priceless.

After all of this testing is done, he'll get a PET scan and hopefully that will tell us if the CT scans missed anything. If all goes as planned (stop laughing!), he may get to come home from the hospital next week. He' still losing consciousness and falling down because of the SVCS, so they have to get that under control first.

Again, thank you all so much for the welcome. Keep the prayers coming.

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Hi Jamie, Boy, your husband has been through a lot already. Glad that you decided to post. A lot of good support here. The one thing that stuck out on your post was "Jeff has a fantastic attitude. He's ready to fight." That is so important. Hope the doctors get some things under control so he can start treatment as soon as possible. Please keep us informed. God Bless

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Jamie, welcome, though I wish you (and all of us) didn't have to be here. I will be praying for all of you, that God grants you strength and courage. You'll need both. We're always here if you need us.

Hugs,

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They did another biopsy yesterday and now he has pneumonia again. Still haven't started chemo. It seem slike every day they say we'll start tomorrow, but it still hasn't happened. They're confused about the biopsy. Is that normal? One pathologist said SCLC, but now the other one says it might be NSCLC? How does that work? They've sent samples of his biopsy to 2 other cancer clinics for their opinions. I guess we just wait now.

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I am sorry Jamie that you have this delay. I know that it will bring you a lot of relief to have him start treatment. That was the turning point for me with my tears; once I felt like we were fighting this monster inside my love.

Getting the proper diagnosis is very important as it can determine future treatment plans and options. Unfortunately misdiagnosis or confusion on diagnosis can be fairly common. My husband was originally diagnosed as SCLC. We accepted that, but decided to go for a second opinion to the Mayo Clinic in Rochester. They requested we bring "Unstained" biopsy slides with us. Many times when they send out slides for reevaluation they send out the stained slides. Mayo said they prefer to have their experts stain them so they can confirm the proper handling and technique of the staining prior to making a diagnosis. Mayo clinic changed the diagnosis to Atypical Carcinoid.

Misdiagnosis' can happen because many of these cancer cells have similar traits. Both SCLC and Atypical carcinoid are Neuroendocrine tumors. The next thing they looked at was the aggression level, which being high they assumed was SCLC (atypical is much more rare), But the Atypical is also agressive, just not as responsive to chemo.

I would wait to see what the other cancer centers say, and I would also confirmed that what was sent out to them were the unstained slides. If after all that there is still confusion or differing opinions, get another. Keith and I actually had 4 doctors debating back and forth which diagnosis was correct. The ones that diagnosed SCLC wanted to believe their testing, and then there were a couple of specialists that agreed with Mayo, especially when Keith had little response to treatment (it was more in keeping with Atypical).

I will be praying for your husband to feel better real soon and be able to start chemo. I also pray that clarification comes quickly on the diagnosis.

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I am sorry Jamie that you have this delay. I know that it will bring you a lot of relief to have him start treatment. That was the turning point for me with my tears; once I felt like we were fighting this monster inside my love.

Getting the proper diagnosis is very important as it can determine future treatment plans and options. Unfortunately misdiagnosis or confusion on diagnosis can be fairly common. My husband was originally diagnosed as SCLC. We accepted that, but decided to go for a second opinion to the Mayo Clinic in Rochester. They requested we bring "Unstained" biopsy slides with us. Many times when they send out slides for reevaluation they send out the stained slides. Mayo said they prefer to have their experts stain them so they can confirm the proper handling and technique of the staining prior to making a diagnosis. Mayo clinic changed the diagnosis to Atypical Carcinoid.

Misdiagnosis' can happen because many of these cancer cells have similar traits. Both SCLC and Atypical carcinoid are Neuroendocrine tumors. The next thing they looked at was the aggression level, which being high they assumed was SCLC (atypical is much more rare), But the Atypical is also agressive, just not as responsive to chemo.

I would wait to see what the other cancer centers say, and I would also confirmed that what was sent out to them were the unstained slides. If after all that there is still confusion or differing opinions, get another. Keith and I actually had 4 doctors debating back and forth which diagnosis was correct. The ones that diagnosed SCLC wanted to believe their testing, and then there were a couple of specialists that agreed with Mayo, especially when Keith had little response to treatment (it was more in keeping with Atypical).

I will be praying for your husband to feel better real soon and be able to start chemo. I also pray that clarification comes quickly on the diagnosis.

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Thanks for the response Carleen. It's slightly comforting to know that this kind of confusion is common. They are going to send him to the Moffitt Cancer Research Institute in Tampa in a couple of days. The swelling is worse again and he can't eat much now due to the radiation.

Our 13 year old son spent the day in the hospital with him today since he may not get to see him except on weekends while he's away. Our 6 year old boy is having nightmares and wetting the bed. I think our older boy realized just today that life as we know it has changed drastically.

I just want someone to be able to give us an answer.

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Jamie,

I am sorry the kids are having such a hard time. Maybe check the library, I know mine has some books on how to talk with such young kids about cancer in the family. I have been thru it with my kids too many times and their pain has hurt me more than my own. :( I was always honest but tried to keep things as simple as possible and always tried to watch what i said when they were around and just let them know this does not change how much you both love them. Take care and know you and your family are in my prayers.

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