Jenny G.

Hi Deanna, Your mother was an inspiration for me. I know that we used the same chemo and I know that it has worked on lots of people. I just finished my 2nd round last thursday and on the previous tues. when I stared that round, my doc said he would schedule a CT and expected to see significant results. Well also on Thursday I went to the radiologist and they did a simulation for the radiation. On Friday I called him and ask him to tell me how my tumor looked. I think I probably put him on the spot, but he said he had just looked at it and it was about the size of a fist. Well, I'm freaking out because it was originally 6.4 x 4.6 cm and I'm thinking that's not any smaller and certainly not significantly. I know this is crazy, but I'm running around trying to find rulers with cm on it and trying to figure out how big a fist is and ..... Well I'm not scheduled to see my onc again until April 29 for the 3rd round so I called, but he wasn't in the office today. The nurse said she would let him know, but she didn't think he would do a CT until after the 3rd round anyway and that he probably wouldn't change anything. That's not acceptable to me, so I'm hoping to hear from him tomorrow. As fast as this stuff grows, I sure don't want to wait that long. Thanks for your input and I hope things continue to go well for you and your mother. Jenny

KatieB, For the first time since my diagnosis, you have brought tears to my eyes. All of your insight and responses to this difficult situation are simply amazing. There's nothing for me to add. Jenny

Thank you for putting a smile on my face. Jenny

Hello, You are fortunate that you were able to have surgery. Some doctors think small cell is inoperable, and I guess it often is because it's so seldom caught early. How were you diagnosed? What chemo treatment will you have? We're all in this together here and as bad as this is, the company is the best. Look forward to hearing more from you. Jenny

I hope that you are able to find some comfort here as I have. You are not alone. Jenny

Hi all, Even though I didn't get a lot of encouragement for the twice a day radiation, I've decided to give it a try anyway. I figure I can always cut back. It starts monday and I must admit, I'm very apprehensive. I already have little energy. Thought I'd share some of the preventative measures that are being taken and ask for any others that you may know about. First of all, this radiologist hasn't done this with anyone for 2 years. The last patient was an RN that ended up in the hospital with esophogitis. He has something to give me that I must take 4-6 times a day to coat my esophogus. I drink it, then wait an hour before eating or drinking anything. I've also been told to take compazine and a generic Claritin (lorathadien) first thing monday morning. My treatments were scheduled for 9 am and 4 pm. Now he has decided that I need to come at 8 am to receive an injection of Amifostine (ethyol) which needs to be given 45 minutes before treatment. This is used in head and neck radiation to protect the salivary glands and he is using it as a precaution because of the twice a day treatments. I have also been given a cream to use on the skin. Luckily, I have a desk job and will go to work between treatments although I may not be worth much there. I would appreciate anyone sharing preventative techniques used in their radiation treatments. Please wish me luck. Jenny P.S. Has anyone experienced damage to the heart from radiation to the chest?

Hi everyone, I have just finished my 2nd round of carboplatin and VP-16 and have reason to believe that it isn't working for me. I would love to hear from everyone concerning the chemo drugs they have used for SCLC and what has worked for them as well as what hasn't worked. It's obvious from reading these posts that it varies greatly from person to person. I think it might be helpful to have this in one post to help gather information to be able to ask questions and consider other options. For what it's worth, if you agree, please participate. There are new drugs being introduced all the time and maybe we'll find out about something that looks promising. Thank you all for your help and support. Jenny

Hi Dana, I found the MD Anderson site to be very helpful and to have lots of good information. I think they have a very good reputation. They have a great chart that shows treatment plans for different situations. I was able to follow it with what my onc is doing and know what questions to ask and feel better about the treatment I was receiving. This is also the place that I found out about the 2x day radiation that is now their standard when it can be tolerated. I have the option of going to a university hospital 65 miles away and have chosen not to. At this point I feel confident that what is being done is as good as anything that can be done. My quality of life is very important to me, but I do think it is important to get a 2nd opinion. I like my onc and he has access to all the medications anyone else does. As long as he is willing to discuss different options and treatments I feel like I can get from him closer to home what I could get anywhere else. I'd like to hear others thoughts about this too. The radiation equipment is another matter as it will depend on the facility. I would check to make sure the equipment being used is up to date. If I see a promising treatment being offered that isn't available here, I would definitly consider it. I agree that we should all get †he opinion of a lung cancer specialist if for not other reason than to feel confident about what is being done. Best of luck. Jenny

Hi everyone, This looks like a wonderful upbeat group and I especially like that there is a separate area for SCLC. Thank you for being here! I am a 51 year old single mom with a 16 year old son. On March 5 I went to the doctor because of sharp pain in my chest that hurt when I breathed and shortness of breath with walking. I had no other symptoms and even these symptoms went away, returned, then went away again over the course of a week or so. A chest xray was taken and a mediastinal mass was found. The doctor referred me for a CT scan the next day. Then to Pulmonologist who scheduled a broncoscopy and confirmed small cell lung cancer 6.4 cm x 4.6 cm with lymph node involvement plus a small cavity on my left lung. Next to oncologist who ordered a bone scan and MRI for the brain because this is the most typical place for SCLC to spread. They felt they could see enough on the CT to determine it was not in my liver or abdomen. I bailed out on the first MRI because it hurt to lay flat on my back for that long and had to reschedule for a week later. That was the longest wait to get that news, but both were clear. They have staged it at limited. I started chemo 3/18 with carboplatin and VP-16 (etopside) for 3 days. My 2nd round of 3 days will begin Tuesday 4/8. At this point I think they plan on 4 rounds of this. I tolerated the first round of chemo very well and in fact felt better than ever. My health otherwise is very good and since the original symptoms have had no other symptoms except fatigue which I had been experiening for some time anyway. I have been waiting to be referred for concurrent radiation and should have an appointment early next week. Now for the questions: 1) My hair is beginning to fall out and I'm debating on whether to shave it or keep waiting to see what happens. Has anyone here with hair loss only experienced thinning and not lost all of their hair? I already have a wig and lots of hats. I've heard the wigs are hot and uncomfortable and am ordering a cotton cap to wear underneath. I have only seen nylon ones in the stores. I would appreciate your sharing your experience in this area. 2) Has anyone here had the IMRT radiation? If you aren't familiar, it is more precise, less surrounding tissue damage, and less side effects. It is not yet widely available. Our local hospital has the equipment but is not using it yet. If you have had this method I would like to know where you are receiving treatment. I will have 3D conformal treatment locally and have at this point decided not to travel for the possibility of IMRT. 3) Has anyone received radiaiton 2 times a day for a shorter period instead of the usual 1 time per day? I have read that this has shown benefit for otherwise healthy people that can tolerate it. I will be asking for this but was told that it is done rarely by the doctor I will be seeing. 4) I have also read that concurrent radiation and chemotherapy has shown benefits and shoud begin the with the first or 2nd round of chemo. My oncologist is thinking of starting me the week after my 2nd round. 5) Is anyone getting Taxol for chemo treatment? My doctor says it is for non small cell. I have taken a crash course in SCLC and realize many of you already know a lot of the information here, but hope it can help someone new to this. The internet and groups like this were my lifeline in the first days following diagnosis. Thank you all for being here, feel free to respond to me directly if you like. I think the answers to some of these questions might be helpful to others as well and the time for making decisions is short. I believe it is important to take charge of your treatment as much as you are able. Bless you all!