Hit Hard And Fast; Just Need To Talk

My husband (36 never smoked) became sick the last week of Oct 2006.  He first developed pleural effusion in his chest.  We were originally told pneumonia, then maybe TB, then possibly legionaire's disease, then they did an Xray and CT, and it was cancer.  Maybe lymphoma.  No it wasn't lymphoma, maybe it was germ cell cancer.  It wasn't germ cell cancer, but maybe it was lymphoma after all.  No, it was definitely not lymphoma but they couldn't say for sure what it was.  My husband ended up in the hospital during this wait for a night because he couldn't breathe.  A needle biopsy was inconclusive; not enough material was snagged.  So a surgical biopsy was requested the day after Thanksgiving.  They brought in extra staff and opened a extra OR for it.  He was in the hospital for over a week to recover.  The samples were sent out to the Mayo clinic.  The best guess:  sarcomatoid carcinoma of unknown or lung primary.  It's stage IV.  It has metasticized to his lymph nodes and his spine.  He started chemo, and has had 2 treatments so far.  He seems to be responding but from what we know, there is only one report of someone with this type of cancer living beyond 2 years, regardless of age or gender.  He has lost over 40lbs.  Our children are both under 3.  Our oldest gets upset when daddy coughs loudly, afraid he will 'spit up.'  Our youngest points to the baby monitor I use when hubby is in the bedroom and I have to be around the house and says "Daddy cough." 

It's only been 2 months, but it feels like years.  I want to plan and take action, but there isn't much I can do, except take care of everyone, and go to work, and keep putting one foot in front of the other.  Yes, that is a lot sometimes, but it doesn't fix the problem.  I want to fix the problem.  I want to know what to expect and what to do.

Early on, we were repeating "I may not win, but I do not have to lose," to keep hope, but it seems like even that has been taken away sometimes, even though he is responding to the chemo.  I am scared that I will have to watch the last 2 months all over again; how sick he was, how much pain he had.  And that I will be able to do even less than I can now.  At the very least, I want to know what happens when remission ends.  Does anyone have experience with this form of cancer?  What does stage IV really mean?  I know what it means in terms of size and locations and metasticizing.  Can people live for a long time with stage IV?  How do you keep hope?

Thanks.

Hi - have you considered getting your husband into a clinical trial?  I know there are a lot of them out there. I did some research on some since my mom has lung cancer. Unfortunately my mom is not a good candidate for any of them, she not only has lung cancer but she has diabetes and was diagnosed last year with congestive heard failure also. She is 70 yrs old and has been in a wheelchair for about 9 years.

Your husband may be a good candidate since he is young and it doesn't sound like he has any other problems. This web site http://www.clinicaltrials.gov/ allows you to narrow the trials by type of cancer and location of the trial. I think it's worth a try.....has your oncologist suggested anything?

Good luck...

Debbie 

On 1/2/2007 Karateka wrote:

My husband (36 never smoked) became sick the last week of Oct 2006.  He first developed pleural effusion in his chest.  We were originally told pneumonia, then maybe TB, then possibly legionaire's disease, then they did an Xray and CT, and it was cancer.  Maybe lymphoma.  No it wasn't lymphoma, maybe it was germ cell cancer.  It wasn't germ cell cancer, but maybe it was lymphoma after all.  No, it was definitely not lymphoma but they couldn't say for sure what it was.  My husband ended up in the hospital during this wait for a night because he couldn't breathe.  A needle biopsy was inconclusive; not enough material was snagged.  So a surgical biopsy was requested the day after Thanksgiving.  They brought in extra staff and opened a extra OR for it.  He was in the hospital for over a week to recover.  The samples were sent out to the Mayo clinic.  The best guess:  sarcomatoid carcinoma of unknown or lung primary.  It's stage IV.  It has metasticized to his lymph nodes and his spine.  He started chemo, and has had 2 treatments so far.  He seems to be responding but from what we know, there is only one report of someone with this type of cancer living beyond 2 years, regardless of age or gender.  He has lost over 40lbs.  Our children are both under 3.  Our oldest gets upset when daddy coughs loudly, afraid he will 'spit up.'  Our youngest points to the baby monitor I use when hubby is in the bedroom and I have to be around the house and says "Daddy cough." 

It's only been 2 months, but it feels like years.  I want to plan and take action, but there isn't much I can do, except take care of everyone, and go to work, and keep putting one foot in front of the other.  Yes, that is a lot sometimes, but it doesn't fix the problem.  I want to fix the problem.  I want to know what to expect and what to do.

Early on, we were repeating "I may not win, but I do not have to lose," to keep hope, but it seems like even that has been taken away sometimes, even though he is responding to the chemo.  I am scared that I will have to watch the last 2 months all over again; how sick he was, how much pain he had.  And that I will be able to do even less than I can now.  At the very least, I want to know what happens when remission ends.  Does anyone have experience with this form of cancer?  What does stage IV really mean?  I know what it means in terms of size and locations and metasticizing.  Can people live for a long time with stage IV?  How do you keep hope?

Thanks.

I would get a second opinion if I were you to make sure that your husband is getting the best treatment that he can get.  Prayers

Carol

My husband who just turned 45 was diagnosed with stage IV lung cancer on Friday, Oct. 13. He is now unable to work because of the severity of its spread into his bones, etc. He's been to two oncologists - MD Anderson in Texas and Karmanos in Detroit - we are now heading to The Cancer Centers of America in Chicago, hopefully this week. We have no children, but I feel your pain and fright. He's had three cycles of chemo - paclitaxel  and carboplatin- once every three weeks since his diagnosis. He has suffered from dehydration, anorexia and now plurel effusion - fluid back up in the lungs. No on has given us any hope until we talked with cancer centers of america. We hope that is our answer. You will be in our prayers.

Roberta

On 1/22/2007 Cabos wrote:

My husband who just turned 45 was diagnosed with stage IV lung cancer on Friday, Oct. 13. He is now unable to work because of the severity of its spread into his bones, etc. He's been to two oncologists - MD Anderson in Texas and Karmanos in Detroit - we are now heading to The Cancer Centers of America in Chicago, hopefully this week. We have no children, but I feel your pain and fright. He's had three cycles of chemo - paclitaxel  and carboplatin- once every three weeks since his diagnosis. He has suffered from dehydration, anorexia and now plurel effusion - fluid back up in the lungs. No on has given us any hope until we talked with cancer centers of america. We hope that is our answer. You will be in our prayers.

Robert

This disease is the most evil of all cancers it seem to attack without warning leaving the doctors and medical profession with very little options for treatment, my husband 49 was also diagnosed on Oct 13th 2006, stage iv with spread to nodes and liver, he had not shown any symptoms until 2 weeks before he became unwell, he also suffered from dehydration, anorexia and fluid in his left lung, he passed from this world on the 21st December 2006, they also tried chemo unfortunately for us the treatment did not work.  Keep hopeful, spend as much time as you can togeather, tell each other every possible minute how much you love each other. I understand your pain.  God bless you. 

On 1/22/2007 Cabos wrote:

My husband who just turned 45 was diagnosed with stage IV lung cancer on Friday, Oct. 13. He is now unable to work because of the severity of its spread into his bones, etc. He's been to two oncologists - MD Anderson in Texas and Karmanos in Detroit - we are now heading to The Cancer Centers of America in Chicago, hopefully this week. We have no children, but I feel your pain and fright. He's had three cycles of chemo - paclitaxel  and carboplatin- once every three weeks since his diagnosis. He has suffered from dehydration, anorexia and now plurel effusion - fluid back up in the lungs. No on has given us any hope until we talked with cancer centers of america. We hope that is our answer. You will be in our prayers.

Roberta

On 1/2/2007 Karateka wrote:

My husband (36 never smoked) became sick the last week of Oct 2006.  He first developed pleural effusion in his chest.  We were originally told pneumonia, then maybe TB, then possibly legionaire's disease, then they did an Xray and CT, and it was cancer.  Maybe lymphoma.  No it wasn't lymphoma, maybe it was germ cell cancer.  It wasn't germ cell cancer, but maybe it was lymphoma after all.  No, it was definitely not lymphoma but they couldn't say for sure what it was.  My husband ended up in the hospital during this wait for a night because he couldn't breathe.  A needle biopsy was inconclusive; not enough material was snagged.  So a surgical biopsy was requested the day after Thanksgiving.  They brought in extra staff and opened a extra OR for it.  He was in the hospital for over a week to recover.  The samples were sent out to the Mayo clinic.  The best guess:  sarcomatoid carcinoma of unknown or lung primary.  It's stage IV.  It has metasticized to his lymph nodes and his spine.  He started chemo, and has had 2 treatments so far.  He seems to be responding but from what we know, there is only one report of someone with this type of cancer living beyond 2 years, regardless of age or gender.  He has lost over 40lbs.  Our children are both under 3.  Our oldest gets upset when daddy coughs loudly, afraid he will 'spit up.'  Our youngest points to the baby monitor I use when hubby is in the bedroom and I have to be around the house and says "Daddy cough." 

It's only been 2 months, but it feels like years.  I want to plan and take action, but there isn't much I can do, except take care of everyone, and go to work, and keep putting one foot in front of the other.  Yes, that is a lot sometimes, but it doesn't fix the problem.  I want to fix the problem.  I want to know what to expect and what to do.

Early on, we were repeating "I may not win, but I do not have to lose," to keep hope, but it seems like even that has been taken away sometimes, even though he is responding to the chemo.  I am scared that I will have to watch the last 2 months all over again; how sick he was, how much pain he had.  And that I will be able to do even less than I can now.  At the very least, I want to know what happens when remission ends.  Does anyone have experience with this form of cancer?  What does stage IV really mean?  I know what it means in terms of size and locations and metasticizing.  Can people live for a long time with stage IV?  How do you keep hope?

Thanks.

Karateka,  My heart goes out to you and your family.  I was diagnosed with NSCLC stage 4 of the right lung in late October last year.  I made up my mind from the beginning that I would not undergo any surgery or chemo/radiation programs.  To me, the treatment seemed more brutal and the results more unexacting than the disease itself.  I was offered the choice to use Tarceva on a trial basis to see if it would shrink the tumor.  I will have my first CAT scan in about 2 weeks to determine if the drug is working.  If it is, I will continue on a 3-month basis with a CAT scan at the end of each 3 months for as long as there are positive results.  If the results are negative, the drugs stop and it runs it's course.   There was a terrible rash from the drug and some nausea and diarhea for a while but it's not nearly as bad as they told me it would be. 

I've placed my faith and trust in the Lord and prayed for the best.  My son  is to be married in April and I'm going to be there.  I'm 59 and I lost my Mom to cancer at the age of 10.  Believe me, there is nothing anyone can do except listen to the doctors and pray.  The good Lord will make the final decision when he's ready.  I figure it could be tomorrow or years from now.  Even those without cancer don't know how long they have either.  Keep your faith.