mjb

Hi - I'm back. My husband finished WBR in July and went off the steroids the first week he was through with the treatment. They were making him gain weight and not sleep. It's now been 6 weeks since he completed the radiation and for the last few days, he has had no appetite. Also even less energy than usual and had chills last night. Is that a normal side effect this long after treatment. It's the first time throught his process (7+ months) that he's just had no appetite and it worries me. Am thinking of calling the doctor tomorrow because he's not schedued for any tests until the first week of October. Any input appreciated.

Randa - Your mom was one of the ones who replied and eased my mind when we were trying to make the decision regarding PCI. Turns out my husband has the same attitude she had. She will be missed here but I believe absolutely that she is in the world of spirit, without pain, and probably very busy helping someone! My prayers are with you - I know how hard it is to lose one's mother. MJB

Thank you all - feeling better already. We'll get through this. MJ

Just a quick note to ask for prayers. Things had gone unbelievably well - fast response to chemo, radiation done as a backup, PCI planned as a preventative measure. So with radiation almost done on the chest, they did another brain MRI. Several abnormalities showed up and we're going to go ahead and start full head radiation this week. This was out of the blue for us and I know it's not the end of the world, but it's certainly not what we were hoping for. Will find out more tomorrow when we sit down with the doctor.

JoniRobert - If you haven't found it yet, go to the SCLC forum and post. I've been reading there since January and recently started posting. My husband has also been going through treatment since the end of January. You will get a lot of replies there. God bless. MJB

Thank you all for the input. We visited the radiation doctor today and my husband will start radiation treatment to the lung on Thursday, and he has decided to go ahead with the PCI following that - pending the results of a CT or MRI of the brain following the lung radiation. My husband, the oncologist handling the chemo and this radiation oncologist are all in favor of aggressive treatment because he has responded so fast and cancer has almost disappeared. So we will go with that decision and pray for the best. I really appreciate you all sharing your experience and your concerns with me. Bean Si - best of luck making your decision and let us know how you are doing. To the rest of you, my thoughts are with you. God bless. MJB

Addie - Everything I said holds, just got yours mixed up with another message and realized that you haven't gotten to start treatment yet. Hope that wasn't too confusing - I find myself getting a bit spacey lately trying to handle things:) MJB

We're sorry to welcome you to this board but glad you found it - it's a wonderful place to get answers. When my husband ask our oncologist how long he had had this cancer the oncologist replied that there was no way to tell without a ct or xray from the month before and the month before that and possibly the month before that - that it was so fastgrowing it's hard to tell. He also the emphasized the need to set an appointment up with him the week following my husband's release from the hospital so that we could start treatment because it grows so fast. No way would I wait a month or more to see an oncologist. It does sound, however, like you have started treatment and that's good. The things that people have overcome on this board will amaze you. God bless. MJB

Thanks so much for this article. I've learned more from what the people on this board have found than anywhere else. Everytime we find something that is relevant or offers hope, I think we ought to post it for others. Here's mine - don't know if anyone has posted it before - and it talks about 5 & 10 years survivors! http://annonc.oupjournals.org/cgi/conte ... /8/10/1009

Bean Si & S Jane - Thanks for the input from both of you. I will go read the urls that are linked and do a search on the term you mentioned. Yes, it is a hard decision. My thoughts and prayers are with you. Thanks again.

Thanks for the reply. I went and reread the PCI poll at the top and it is still confusing to me. Seems like everyone's doctor has different statistics and I guess that's the thing I'm really wondering about. Is there a significant advantage, statistically, to having it done at this point. Our doctor says with chemo only, there is a 25% chance it will show up in the brain - I've seen a lot of other percentages on the boards. I guess it's just everyone's best guess.

Hi folks. I've read a lot of different postings regarding radiation (including the poll above) but it gets difficult to find them and check each person's history. Here's our quandary. My husband has responded exceedlingly well to chemo. After 4 rounds of chemo, a petscan shows "minimal residual hypertmetabolism that probably reflects treated disease". OK, that's good news. Now there is disagreement among the doctors whether he should be treated with PCI and we are meeting Monday with our 2nd radiation specialist to discuss. The first didn't think, statistically, that it made sense to treat him with PCI since he had extensive stage when diagnosed. Our oncologist "respectfully disagrees" because he has responded so well so quickly and he doesn't want to see it come back in the brain. Two questions. 1) Any one who was first diagnosed extensive SCLC and had the PCI? IF so, what side effects and would you do it again if you had to do over? 2) Does anyone know where to find most recent studies regarding this? Ones I have found are a bit older and they say there's no advnatage to doing it if initial diagnosis was extensive. OK, that's actually 3 or 4 questions but it's been a long week. Any input appreciated and best to everyone on this board. MJB

I posted on the SCLC board for the first time today and thought I would come introduce myself. My husband has SCLC and we are about 2 1/2 months into this. I've been reading here to learn things that might be helpful and trying to gather info that will help in the decision making process regarding brain radiation. Don't know yet what his decision will be, but there's a good chance I'll be back asking questions. Or worrying. Possibly even celebrating. God bless each and every one of you.

Thank you for the warm words. It is a roller coaster, isn't it? I attached a signature with the info (I think). Chemo is called the Vanderbilt protocol and supposed to be one of the latest treatments. Cistplait, Camptosaur & Mannitol - not sure about the spelling on any of them. Determined to beat this.

First time I have posted, but I have been reading the boards since January when my husband was diagnosed with sclc. After 4 chemos, they could not find the tumor on an Xray, so did a catscan. Found residual cells in the lung, and the tumor of the adrenal gland had decreased by about 90%. So 4 more chemos (number 3 this week), then we will have to make a decision about brain radiation. I've read most the postings here and it sounds like a lot of people struggle with this one. Just thought I would go ahead and introduce myself in case I need to post a frantic message in the future:) I have seen many upbeat people and many survivors here and that's very encouraging. Just surfing the web and reading statistics is way too scary. Thanks to you all and God bless every single one of you. MJB