SCLC with Brain Mets/need honest

[dchurchi]

Hi all

My husband Alan was DX with SCLC limited disease on Jan 10th 2005. as Alan had major issues with treatment I will keep this part short. Due to many complications Alan did not even complete 2 cycles of chemo which had to be discontinued on Feb 20th. he then spent some 6 weeks in the hospital which delayed any radiation treatments until May 19th and ended June 28th (35 treatments to primary tumor in right upper lobe). All seemed well until July 12 when it was confirmed he had a 3.0 x 3.5 tumor the right cerebellar region of his brain. we now had recurrent small cell lung cancer to his brain. prognosid 3-6 months.

Alan has obtained pallitive relief from his symptoms and is now able to get around faily well and sometimes I forget what we are dealing with. There is always that fine line between hope and reality.

Hope is he will be this way forever, reality is he probably won't.

Have any caregivers out there had a loved one with limited disease that recurred to the brain that faced a similar prognosis??? Both of Alan's dr's are the most positive upbeat caring men I have ever met, both told me the same thing about Alan's prognosis (no sugar coating at this point). Can someone tell me what to possibly expect?? Here is how the Dr's explained it. There would be a period of time that Alan show marked improvement (which is the case now), then his condition would level out, then he would show signs of decline and the end would come fairly quickly.

Alan has had 10 whole brain radiation treatments and they are now doing 16 IMRT treatments to the tumor itself. As alan can not take any steriods his edema is a concen.

thank you to all of you who take the time to reach out to others, it is very comforting to us to know others have already traveled our path. I pray for all those who have a loved one with this awful disease.

Debbie

[Connie B]

Are you talking END OF LIFE ISSUES? Because if you are, we just had a long thread about that on this forum. It even reads (End Of Life) in the topic.

I also wish to suggest that you go check out the Small Cell Forum. You may find lots of answers to your questions on that forum also.

Good Luck.

[trishnmiller]

I have posted Jeffrey's story many times but in a nut shell it is this: On January 13, 2005 he was diagnosed with nsclc IV with mets to brain ( and liver and given 1-3 months to live. I was not ready for end of life issues. I refused whole brain radiation and found a doctor who would do GAmma Knife followed by chemo. It worked. He got 5 more tumors and had Gamma Knife again. It worked again. We changed chemo three times until we found one we liked (Alimta). His liver tumor has been cyberknifed successfully and they (the docs) have agreed to finally take the original lung tumor...there are alot of options out there.

[Addie]

Jeez...if your hubby's docs are right...I wonder who's not telling ME something.

I have sclc that was limited at dx on 5/10/04. You can see progress of things in my bio below. As of last Friday I found out it's in my brain now. More than a dozen tumors...but the largest is only 1 cm.

I start brain radiation on Monday. I've already had PCI - prophylactic cranial irradiation...so they cannot go after what's up there now as aggressively, but both my onc and rad onc feel that the remaining radiation I can have will be enough to take care of the brain mets.

I find it rather stunning that your hubby's docs are essentially saying, "we can't do any more for him". If my onc or rad onc said that to me, I'd be out the door looking for new doctors!

Both of Alan's dr's are the most positive upbeat caring men I have ever met, both told me the same thing about Alan's prognosis (no sugar coating at this point).

How can this be? I don't know, but I think I'd try to get his films and file info and get another opinion. Over 15 months of treatment I've fared very well. Yes, brain tumors are a little scarier..but I'm not folding up my tent until I know I'm out of options.

My onc told me that if I were to get more brain tumors down the line...there is still Temodar to try (which crosses the blood/brain barrier...but doesn't work for everyone. Still...worth a shot.) and then clinical trials perhaps.

[Leslie221]

I don't have any answers for you. I just want to offer support and encourage you to re-read Addie's post.

Leslie

[cindi o'h]

I am not in your shoes...but I have met long term (5 plus years) sclc with brain mets who are still walking around today and causing trouble.

Run to find someone who will help your husband. He may survive, he may not survive, but if it were me, what those smilin' docs said would absolutely be unacceptable. There is always hope as long as there is a treatment out there that has worked for someone else!

Good luck!

Cindi o'h

[Addie]

One more thing...I don't know the specifics of your husband's general state of health, his age or other factors that might play into this. I hope I didn't sound like I was totally dismissing his two doctors...but I guess I am dismissing the idea of giving up, or not having any hope...when it appears there may yet be things to do that could change the outlook of things!

One 3 cm. brain tumor all by itself is not, based on what I've read here and elsewhere, untreatable! Please go back to his doctors and ask questions...ask why they aren't looking to treat this tumor. And if you don't get satisfactory answers....DO get another opinion.

Some doctors give up too easily. Others fight to the bitter end. Some fall somewhere in the middle of things.

But the bottom line is this is YOUR HUBBY'S LIFE...and if he's willing to keep going in the battle...the medical profession ought to give him the opportunity, particularly based on what I'm reading here.

I mean...if it makes sense to give up with just one, still relatively smallish brain tumor...what the heck am I doing going after more than a dozen?

I'll tell you what I'm doing....I'm making the effort to extend my life because I feel good and am not gonna roll over for the cancer just yet! There are miracles out there yet to happen...and new treatments....and other hopeful possibilities.

Okay...off my little cancer soapbox ...but I sincerely hope you get some different answers and can either convince those two docs or find a NEW one who will work with you towards improving hubby's odds.

Please come back and let us know how things go!?