Discussion groups and support

janius

This is a great place to go for support and understanding about the beast known as lung cancer. I'm wondering if any of you have found other discussion sites which are helpful for small cell lung cancer.

ptdprod

janius,

Hello, so far this is one of the best places I have found for off-the-cuff info and emotional support.

What I mean by off-the-cuff info is the stuff that Doctors don't tell you. For example dealing with skin rashes during treatment. I just learned a few moments ago that it's not good to use a cortisone cream. This is because it lowers the immune system inviting progression of cancer cells.

Extermely useful information given my wife is suffering from full body rashes right now.

I don't know if you are a patient or caregiver. Either way I can tell as a caregiver I am learning a great deal from this site which is already helping me to deal with my wife's lung/Non-Small Cell Cancer.

I would suggest you post specific questions or even share an experience on this post. Many of us will jump in and express our experiences or knowledge when we can.

The single most important words of advice I can offer to start is to stay strong never allow your thoughts to wonder to the dark side it's simple non-productive to the end result of survival.

We all look forward to hearing from you and supporting you in anyway we can.

janius

ptdprod said:

janius,

Hello, so far this is one of the best places I have found for off-the-cuff info and emotional support.

What I mean by off-the-cuff info is the stuff that Doctors don't tell you. For example dealing with skin rashes during treatment. I just learned a few moments ago that it's not good to use a cortisone cream. This is because it lowers the immune system inviting progression of cancer cells.

Extermely useful information given my wife is suffering from full body rashes right now.

I don't know if you are a patient or caregiver. Either way I can tell as a caregiver I am learning a great deal from this site which is already helping me to deal with my wife's lung/Non-Small Cell Cancer.

I would suggest you post specific questions or even share an experience on this post. Many of us will jump in and express our experiences or knowledge when we can.

The single most important words of advice I can offer to start is to stay strong never allow your thoughts to wonder to the dark side it's simple non-productive to the end result of survival.

We all look forward to hearing from you and supporting you in anyway we can.

I am a caregiver. My husband was diagnosed with limited small cell lung cancer on May 19. He has had daily radiation starting that day with his last treatment to occur on Wednesday, July 5. He has had two 3-day sessions of chemo (cisplatin and etoposide). He has a very large tumor on his right lung. This has shrunk by 50% so far. He gets his next 3-day chemos on July 5,6 & 7 and July 26, 27, & 28. Then a 6 week wait for a CT Scan. We are hoping for an "all gone" diagnoses at that time and then will have to consider cranial irradiation. He has had very little skin burn or rash but our cancer center gave him samples of Aquaphor to put on his skin.

We are both staying quite upbeat and going on with life as normal as possible although for about 8 days after chemo he is very tired and nauseated. I am getting very good at preparing smoothies, milk shakes, and chicken soup which are all things he seems to be able to eat during the worst nausea times.

It seems to me there are more discussions on this board about non-small cell lung cancer than small cell so I'm thinking that the survival rate for small cell is less than non-small cell. Our feeling is that if there is a 20% survival rate for small cell, someone has to be in that 20%, so why not my husband. right?

Thanks for responding and best wishes to you in caring for your wife.

ptdprod

janius said:

I am a caregiver. My husband was diagnosed with limited small cell lung cancer on May 19. He has had daily radiation starting that day with his last treatment to occur on Wednesday, July 5. He has had two 3-day sessions of chemo (cisplatin and etoposide). He has a very large tumor on his right lung. This has shrunk by 50% so far. He gets his next 3-day chemos on July 5,6 & 7 and July 26, 27, & 28. Then a 6 week wait for a CT Scan. We are hoping for an "all gone" diagnoses at that time and then will have to consider cranial irradiation. He has had very little skin burn or rash but our cancer center gave him samples of Aquaphor to put on his skin.

We are both staying quite upbeat and going on with life as normal as possible although for about 8 days after chemo he is very tired and nauseated. I am getting very good at preparing smoothies, milk shakes, and chicken soup which are all things he seems to be able to eat during the worst nausea times.

It seems to me there are more discussions on this board about non-small cell lung cancer than small cell so I'm thinking that the survival rate for small cell is less than non-small cell. Our feeling is that if there is a 20% survival rate for small cell, someone has to be in that 20%, so why not my husband. right?

Thanks for responding and best wishes to you in caring for your wife.

Don't go with the %.. they mean nothing... My sister survived two brain surgeries only to be wacked by a van crossing a street in DC during her lunch hour. So now she goes down as a less then 5 yr survivior. See what I mean.

For the nausea have you tried "Emend" it's a 1-2-3 day pill. My wife has yet to experience Nausea in 8 chemo treatments using this solution.

God bless you for take care of your Husband. As the Husband and Care giver I can tell you I know how hard it is...

I only wish I learned to cook all those time my wife asked me to help and learn.. =;-)

Don't let either he or yourself go to the dark side... It's counter productive... With your TLC and support he will make it. I'm sure...

Do you have someone for you to talk to so? Youi ned that so you can tell someone how you feel without having to say it to your husband.

Take care I'll talk to you again soon.

janius

ptdprod said:

Don't go with the %.. they mean nothing... My sister survived two brain surgeries only to be wacked by a van crossing a street in DC during her lunch hour. So now she goes down as a less then 5 yr survivior. See what I mean.

For the nausea have you tried "Emend" it's a 1-2-3 day pill. My wife has yet to experience Nausea in 8 chemo treatments using this solution.

God bless you for take care of your Husband. As the Husband and Care giver I can tell you I know how hard it is...

I only wish I learned to cook all those time my wife asked me to help and learn.. =;-)

Don't let either he or yourself go to the dark side... It's counter productive... With your TLC and support he will make it. I'm sure...

Do you have someone for you to talk to so? Youi ned that so you can tell someone how you feel without having to say it to your husband.

Take care I'll talk to you again soon.

Thanks for the suggestion of Emend for nausea. I'll ask our oncologist about it.....I assume it is a prescription drug. He has used Zofran (most effective), zytril and compazine. Other than his malignant tumor my husband is quite healthy so I know he can get through the next two chemo sessions even though it's uncomfortable.

Thanks for responding to me. It is very helpful to hear from other caregivers..............and I am sorry about what happened to your sister. I have two sisters...one is an 8 1/2 year ovarian cancer survivor; the other is a survivor of both breast and colon cancer. My mother died of colon cancer at age 99.

Have a great 4th of July!