LynneH

I need to post a huge THANK YOU to all of the members of this club. My husband Jim, age 54, was diagnosed with Extensive Small Cell on New Years Day, 2004. I found this site sometime in the Spring of 2004 and eagerly read your posts and your bios. I often asked Jim’s doctor about treatments that I read in your bios. I also felt pain, sadness, and joy, depending on the news that was posted. I’ve grown attached to some of you, even though you wouldn’t know me. I’ve PM’d CindyRN several times; she is a godsend. I love to read Don’s words of comfort and think good thoughts for Lucy. I could fill up paragraphs with names of others, but really I just wanted to say Thank You to all for supporting me even though I did not feel comfortable posting. Jim left on March 31, 2005. He never wanted to discontinue treatment and continued until the day he entered the hospital for the last time. When I spoke to him, he would raise his eyebrows really high just to try to get a peek, but his eyes would no longer open. I couldn’t understand his words the last week, except a very clear question one day, ‘Why are you wearing your pajamas in the middle of the day?’. I laughed with him because I was wearing a sweat suit that he thought was really ugly, although he had not opened his eyes in days. He could still smile occasionally and was just as handsome as when I married him 27 years ago when he was an old man of 27 and I was a 19-year old young lady. He was 6’2â€

Hi Cindy! I've been a 'silent' member here for a long time but have PM'd you twice during my husband's journey and you were so wonderful. I wasn't able to be on the site since early March so I had missed your wonderful news! Your postings and your personal successes have been so uplifting to me and I wanted to say CONGRATULATIONS and keep on doing exactly what you have been doing because it is working! I'm so thrilled! LynneH

Hello Jen, I've only posted twice but wanted to provide info for your stat collection. Husband Jim diagnosed Jan '04, extensive - Right Lung, Left Adrenal. Tx seemed to resolve the adrenal and greatly reduce the lung tumor. July '04 Pet showed increase in tumor activity in the lungs and was starting to put pressure on superior vena cava. 30 Chest Radiation Txs helped reduce lung tumors. October '04 CT scan showed growth in the adrenal gland tumor. Started Topotecan. Was holding stable. Mar '05 - determined Topotecan was not helping anymore. Adrenal tumor had tripled in size and MRI showed one brain tumor located in the center of the brain. Managed 10 WBR treatments with daily oral VP16. Steroids were being reduced gradually during the treatments. At end of 10th WBR, was hospitalized with swelling to the brain. Increased steroids did not reduce the swelling and he passed away a week after entering the hospital. Not the ending I like to post, but he never wanted to discontinue treatment so I am glad he got to do it his way. Hope the info helps, LynneH

Hi Addie, I've never posted a reply but thought I could offer some info from my husband's treatments. He's doing the Topotecan now and has been on it quite a while (see profile). He's due for a scan soon but the Topo has been holding him stable. He did not lose his hair (maybe a little thinning but not much) and has had some trouble with his counts. But considering he has been undergoing some sort of chemo almost without a break for about 13 months, he's tolerating it fairly well. He was giving himself 7 Neupogen shots after each 4 day treatment and he does a weekly Procrit. Now that he is on a weekly one-day schedule (he gets 1/2 of the full dose on Monday of each week), his white count is okay right now. He did get another Transfusion because his red counts dropped again, but the number wasn't as low as it has been so I think that is slowly improving. He is tired, but no nausea. He has been wanting alot of vanilla ice cream with strawberry topping, so stock up! Just another experience but wanted you to know that I am out here if you have any other questions as you start the Topotecan journey. My thoughts are with you, Lynne

Dr Joe, wonderful information! You have offered several suggestions that I will broach delicately, if needed, after listening to my husband's oncologist's next game plan. At least I feel armed with information from a proven expert instead of relying on my Internet and book readings with unknown origins. I am extremely grateful, LynneH

This is my first post here but I’m feeling a tad desperate and have learned so much from all of the other members and the incredible Oncodoc. Oncodoc, as my husband’s profile states, he has small-cell, extensive. This year, he has endured the Carboplatin/VP16, Radiation with Taxol, and is now trying the Topotecan. (I have immense respect and trust for his oncologist, but he doesn't elaborate much.) The doctor has indicated to me in private that he only has about one other drug up his sleeve to try after the Topotecan. We did not discuss which drug that might be. Based on my husband’s diagnosis, treatment to-date, and his responses, can you tell me what remaining protocol options you think would be worth trying? Thank you in advance for your time, LynneH