Small Cell Lung Cancer help?

Maluenda

Hi there, everyone. This is my first post and my first time posting anywhere about this all.. so here it goes.

I am not the patient, my mom is. Last December (a few days before Christmas, actually) she was diagnosed with stage four small cell lung cancer with mets to the liver. We actually lost my grandmother a few years prior to the exact same thing and her case was too little too late. Needless to say, my mom is having a lot of issues coping with this- but then again, I don't blame her.

She was started on cisplatin and etopside- she did one treatment, I beleive.. then she switched doctors. The doctor said that the cisplatin was too rough and they should have never put her on it.. so she was put on carboplatin- to which she finished out the remainder of six treatments. The tumor in her lung shrunk and all that is left is a tiny spot- which we are not sure if it is scar tissue or a tumor because it has not grown, and the liver spots went away. They did a brain scan and sure enough, it had formed spots on her brain. She went through ten treatments of radiation and now there are no more spots.

Although, they did another scan recently and it showed another spot on her liver and new spots on her spine.

I am not sure if she was ever really in remission because it just seems to keep on gradually moving. Her doctor is vague and doesn't like to explain things. I am also not sure what he is doing at the moment either. I brought several papers on clinical trials all over the US that she QUALIFIES for and he shot every single one down but a picoplatin trial that is randomized phase three trial in Texas. So we scrounged up everything we have and sent her to Texas AT LEAST for a better consult at MD Anderson. As to what was said.. I do not know. I could not go because I am expecting a child any day now.

The doctor from MD Anderson wanted to talk to my moms current doctor about starting her on a four week regiment of topotecan and carboplatin because it had gotten good results. Her doctor shot that down too because he doesn't think topotecan will do anything. He was rather rude this time, I do think I hurt his pretty little ego last time by actually asking about alternate treatments he had not mentioned.

That being said, his assistant called around to a few areas here about clinical trials and found one at Emory in Atlanta that she would qualify for. If she chooses not to pursue, he said he will put her on the harshest form of chemo there is (which he did not specify). This doctor has done nothing but give my mom the worst case scenario. She's already survived a year almost and I think that is a pretty dang positive thing in itself, am I right? If she can do one year- she sure can do several more, especially with her first grandbaby on the way.

She is barely eating anymore and is afraid to sleep because she is afraid she might pass away while asleep. She keeps smoking and drinking a TON of soda... and won't listen to anyone about it. I know she is trying, but it just seems like she has become so negative about everything since that doctor told her she pretty much had two months to live. I don't see an expiration date anywhere on her.

What I am really hoping to find is maybe a survivor or two to get her in contact with so maybe she can see how others got through it. I've tried getting her to read stories online but she doesn't like to look at anything anymore. I suppose I don't blame her but our family is trying really hard to keep her positive and motivated.

Does anyone have any suggestions? Experiences?

sheliam

so sorry
Hi Mal,uenda, my brother is going through this not sleeping,not wanting to eat,,starting to stare off into space thing and it really scares me
I want and try so hard to find the right words to make him feel better its so hard to do when you can find no survivors of sclc. Dr. Say just let him know you are there and give him the best last days you can....that is not what I want to hear....the best thing I have found to do is to remind him of the do you recall whens we have lot of memories we share and are making more each day. I hope your mom finds something to help her feel better I k ow at this point you are willing to try anything. Just hang in there and love her

Radioactive34

I apologize for not
I apologize for not responding sooner. I have a version/mutation of SCLC...rarer but treated the same. Stats are the same or grimmer.

I have gone into remission but from what I research and get a feel for, remissions are fleeting and almost run through your hands like water.

I do not have anything to add beyond do what she wants/needs to be done. Support her needs. If she wants to try other things find her a doctor willing to put her on the trials. Don't deal with a doctor who is being a barrier to care. Not at this stage in the game.

I am on antianxiety and depression medications. Serious diagnosis tend to deal a harsh blow to our psyches. The meds help.

All I can say is support her. There are days I can't get out of bed or am so chemo brained I try to pay for groceries with my library card. Please have patience with her. Just be what she needs...advocate, supporter, daughter. And realize her choices may not be yours but may be what she needs.

medi_2

sheliam said:

so sorry
Hi Mal,uenda, my brother is going through this not sleeping,not wanting to eat,,starting to stare off into space thing and it really scares me
I want and try so hard to find the right words to make him feel better its so hard to do when you can find no survivors of sclc. Dr. Say just let him know you are there and give him the best last days you can....that is not what I want to hear....the best thing I have found to do is to remind him of the do you recall whens we have lot of memories we share and are making more each day. I hope your mom finds something to help her feel better I k ow at this point you are willing to try anything. Just hang in there and love her

hmmmmm
I'm a survivor of sclc almost three years now. Only have to have yearly scans. There are plenty more like me.
Take Heart and Have Hope,
Medi