Extensive Sclc - Any Survivors?

Hi everybody,

My mum has been diagnosed with extensive SCLC . The lung specialist told me it was a matter of months yet the oncologist said they could not tell although this cancer was particluarly aggressive. She is to receive chemotherapy and possible radiotherapy.

Mum has started on Carboplatin and Etopisode 4 days ago and is doing ok so far. She has been feeling tired and short of breath for a few months now but is starting to get pain in her back - only a few twinges at the moment .

I would like to hear from anybody else who has experience of this type of cancer and treatment and would like any advice on what to expect and how to look after my mum. Are there any long term survivors out there ?

God bless

Debbie x

On 5/7/2007 Dinkydoo wrote:

Hi everybody,

My mum has been diagnosed with extensive SCLC . The lung specialist told me it was a matter of months yet the oncologist said they could not tell although this cancer was particluarly aggressive. She is to receive chemotherapy and possible radiotherapy.

Mum has started on Carboplatin and Etopisode 4 days ago and is doing ok so far. She has been feeling tired and short of breath for a few months now but is starting to get pain in her back - only a few twinges at the moment .

I would like to hear from anybody else who has experience of this type of cancer and treatment and would like any advice on what to expect and how to look after my mum. Are there any long term survivors out there ?

 

God bless

Debbie x

A good web site to look at is: http://www.blochcancer.org/

They can get you in contact with survivors.

My father has stage 4 SCLC. He was diagnosed July 2006. He is fighting. Sometimes things look good for him, sometimes not. We just support him in everyway we can.

Take care!

Hi & thank you so much for the link.

I have just been to the site (for an hour!) and found it really helpful & uplifting.

Thanks again & god bless you and your father

Deb

On 5/10/2007 Dinkydoo wrote:

Hi & thank you so much for the link.

I have just been to the site (for an hour!) and found it really helpful & uplifting.

Thanks again & god bless you and your father

Deb

I am glad you found the site helpful. A while ago someone posted the link here and I remember going to that website. It really helped!! I am not sure where you are from but in our area we have a place called Gilda's Club. It supports all people touched by cancer. It teaches people how to live with cancer. It offers support. I am hoping my parents will attend. I am thinking of sending my daughter there too. It is an interesting and supportive place. I do not know how to talk to my daughter about this disease.

Maybe there are places in your area that offer support.

Hang in there!! Take care!

Lots of prayers to you and your family!
-Janine

Hi there! My dad had extensive stage small cell cancer of the lung, too.  There are TWO stages of small cell cancer, limited stage and then extensive stage, with either that can recur.  My father got a great initial response to etoposide and cisplatin. Had six rounds along with radiation therapy.  His cancer recurred about 3-1/2 months later as an extensive stage with metastasis to his liver.  Went on to a clinical trial with topotecan.  He survived one year from diagnosis to death.  We had some horrible times and some great times.  His age was a factor against him, (82) though his spirit and otherwise excellent health were factors in his favor.  I would not trade that year in for anything......  Survivors beyond a few years - none that I know of.....  Great times for the time she is here - you bet!!!!!   Hang in there and though I don't know you by name, I have prayed for you and your family......

Janine,

Thank you so much for your thoughtful reply.

I am in the UK,Liverpool area and I know there are a few local support groups here. Presently mum does not wish to attend them but that may change as she comes to terms with it. I get my support from websites such as this and the kind people such as yourself who offer support and helpful advice. I just dont seem to hear much about SCLC from a positive aspect which I find very sad.

My prayers & good wishes are with you & your family

Take care

Debbie

Ldhstn,

Thanks so much for your heartfelt reply. I am so sorry to hear about your dad but I feel a lot of positivity from you. I am happy that you had the good times that you did in that last year and from your reply feel that you truly cherish them. It is encouraging that you are still looking in on this board in order to help others and for this I am grateful.

Thanks again and god bless you and your family

Debbie

Hi.  I am starting to go through the same with my mom.  They have told her she has cancer for sure, but it's taking forever to get the test results back (weeks).  They are sending the specimen to the Mayo Clinic because they could not get a definite caner type where she is.  Hers started with back pain.  We don't know if it is small cell or non-small cell, but they have told us it is most likely small cell.  It seems that after she was told, she has gotten so much worse.  Breathing problems and back pain are the worst for her.  A treatment plan has not been started because the doctor wants to get a definite answer.  Today she has a biopsy on her spine to diagnose the area they found that is probably cancer. I think this puts her in the extensive stage. 

 I am wondering the same thing--how treatable is this?  My mom was told 5% chance of being cured.  Not too optimistic.  I was also told she only has 6-8 months left if it is small cell.  Just a lot to take in all at once. 

 It seems the more information I find, the less hopeful it is.

 God Bless

Holly

Holly,

So sorry to hear about your mum - I do hope that it does not turn out to be small cell as it pretty aggressive. I do appreciate though that any form of lung cancer is bad news unfortunately.

I am a little concerned as to your mums test results taking weeks. I think with small cell you really have to act quickly at the start as it can deteriorate rapidly. I dont want to alarm you but I think you should press for some answers QUICKLY. If these means pestering the doctors then I would do it straight away. Also, ask for some oral morphine for the back pain - my mum has this and it works well.

I wish you lots of luck & do keep in touch to let me knwo how your mum is doing.

God bless

Debbie

Hi,

My mom was diagnosed in Aug. 2006.  She did great on carboplatin.When into remission for 2 months when it went to the brain and the next month we found out it was back in the lung.  Her experience on Topotecan was horrible.  She was having to get platelets every 2-3 days. She felt horrible - couldn't eat, she just wanted to sleep all day.  The doctor tried a different regiment with the topotecan but once they did a lung scan it showed that the cancer was continuing to grow.  She has decided not to continue any type of treatment.  She actually feels ok now but we realize it is only a matter of time. 

Enjoy every possible moment -- we have actually had a good year and spent quality time that we would otherwise have not been able to.

I will keep you in my prayers b/c I know what you are going through.  My mom is only 64 and is a very big part of my family's life.

God bless your family,

Tracy