Jenny G.

Donna, You're post has been bothering me so I read it again and tried to see from the other perspective. How many chemo treatments has your husband already had? There may be a reason not to do more without a break? Do the oncologists routinely look at the actual scans themselves or do they rely on other professionals to give them the results? This is a quesition for everyone. I think a neurologist may have actually read my MRI results and faxed them to my doc. My doc also thought my cancer was gone after the 4th treatment and this was without scans. He told me after the fact. Just some thoughts, but it still doesn't explain why he hasn't been up-front with you and in any case I would still find another doctor that you feel you can trust. I think that's an important part of treatment. Jenny

Donna, That is unbelievable! Please get away from that doctor and find someone else. It sounds like the pulmonologist knows what he's doing, maybe ask him for a referral. So sorry you're having to deal with this on top of everyting else. Jenny

I think if there is something there they would probably do the same thing anyway. I don't know much about gamma knife, but that is something else that can be used for brain tumors. I don't think we should go there though. It's strange that I also had a "spot" that was not cancer. Never thought about it being dead brain cells, but that makes sense. They said they thought it was from an old trauma. Well, I'm thinking of all the times I've been hit in the head in childhood and things like that, but when I talked to the radiologist, he said no, not that old. He said possibly a mini-stroke and that if I hadn't had the MRI I probably never would have known about it. This has me freaked out too and not knowing what to do about it. The person that read the MRI and noted the spot said it should be followed up on in 3 months. My medical oncologist didn't even talk to me about it and I only know as much as I do from quizzing the radiologist. They were supposed to order a comparison to my original MRI from when I first started treatment to see if it was there then. This was at my request. I was so focused on the cancer that I didn't give this spot much thought until later. I don't have much faith in my gp and don't know whether to find another gp or go to a neurologist, then I think I'm just over reacting and being paranoid, but I am curious. Anyone else had anything like this? I think we have enough to worry about and I don't think we need to worry about this too, but I would like more information. Jenny

Hi Janis, Your doctors are even driving me crazy. This waiting is just too much. Great news about the other scans though. I met with the radiologist on Wednesday. We discussed the dosages since it seems to me no one has decided the best way to go as far as how much for how long. He wants to do 10 treatments of 2.5 Gy each, but there is a range of variations. They did a "simulation" that involves a scan then they took a piece of plastic that looks like plastic canvas with the holes in it and they got it wet and warm and stretched it over my face to make a mask. I totally didn't expect that and it was strange, but you can breathe just fine (the holes get bigger) and it molds to your shape. I guess I will put this on each time to keep me still and in the right position. I confirmed that I will indeed lose my hair again, but when I asked about the 10% that I've heard never grow back, he said he'd never seen that happen. My first treatment will be on Tues. the 26th. He said it will take about 1/2 hour because they will do some xrays then I will go for the next 9 business days (Labor Day off) and it will only take about 5 minutes each time. I really like my doctor and I feel pretty good about this even though it is a mixed blessing. I had found a study that suggested 18 treatments of 2 Gy was most effective, but he said he finds people get tired with that many, He also mentioned something about financial incentives to do so many... but what he suggested seemed like a good compromise to me, I really didn't want to do 18. The recommendation is 25-36 Gy given in 2-3 Gy daily fractions. As far as timing, it is best to do it soon after completion of chemo and radiaiton and best not to wait more than 6 months. I hope you can find something to distract you while you wait for results. I'll be thinking of you. Jenny

Hi, It is my understanding that beta carotene is good EXCEPT for smokers. If he smokes then he should avoid even the beta carotene in multiple vitamins. As far as antioxidants (vitamin E, etc), there is no proof, but a possibility they could help to protect the cancer cells as well and that's why they should be avoided if you are having cancer treatments. I think the carnation instant breakfast is a good idea, and cheaper too. Try adding ice cream for even more calories. Here's a site I really liked for info on supplements specifically related to lung cancer. http://www.drugstore.com/templates/hnot ... rxp2=40706 Best of luck. Jenny

I think is is very unusual to have surgery for SCLC, I was told it wasn't an option, but like you kept it in the back of my mind that if it shrunk after treatment, then why not. Bengel you were very lucky to find it so early and have this option as I do think surgery offers the best chance. It doesn't make sense to me that David would have a recurrance that large in so short a time. I really feel like it must be something else. My first CT after treatment showed scar tissue and a PET needed to be done to see if there was any activity. You're right to prepare for the worst, but in this case I think you have more reason to hope for the best. I'm glad you are getting out together and enjoying life. Jenny

Shelly, I'm sorry that you are having to deal with this. If your father has a positive attitude and wants to fight, I think you should encourage that. It seems strange to me too that they would recommend hospice before any treatments were even begun unless there is a reason he can't have any treatments. SCLC often responds very well to chemo. Have you gotten a 2nd opinion? I'm glad that he has you to help him through this. Enjoy every day you have together and take it one at a time. None of us ever knows when our time is up. Jenny

Cathy, I am so sorry. I hope that you can find some comfort in knowing you did everything you could and how much it must have meant to him and your mother that you were there for them. I know the pain must be unbearable now, but please know that it will get better with time. Jenny

Just want to let Connie know how much she's missed and needed here. She's got to be feeling the love radiating towards her. Thanks Donna, for keeping us updated. Jenny

Kathy, I'm so happy for you and Tim. A much needed and deserved break at the beach. Sounds fantastic! Jenny

This really makes my day! I have been so sad for you and Keith and have been praying you'd find the strength to perservere. Congratulations! Jenny

Yeah Ray! I'm sure you're glad to have that behind you. Isn't it the truth about treatments and the cancer doesn't even make you sick. Go figure! Hope you get a break now and get to feeling better again. Jenny

What a wonderful story! Thank you for sharing, it brought tears to my eyes as well. You have the right attitude. Jenny

Ha! I love you all. Thanks for making me laugh.

Hi everyone, I have waited patiently through the results of the CT, then the PET, and the MRI to finally announce that I now have NO EVIDENCE OF DISEASE - anywhere! I guess it doesn't get any better than this. Thank you all for your prayers and support since I started this journey. I will continue to pray for all of us. Jenny

Hi Sonia, I will see my radiologist on Wed. to start PCI. I feel very lucky to be in a position to be able to do this. I am much more afraid of the brain tumors than anything the PCI will do to me. I found this article that made me feel a little better about it. I didn't know about the chance that my hair might not come back though. Jenny http://theoncologist.alphamedpress.org/ ... st;5/4/299 Dialogues in Oncology Prophylactic Cranial Irradiation in Small-Cell Lung Cancer: Is It Still Controversial or Is It a No-Brainer? Andrew T. Turrisi, III Medical University of South Carolina, Charleston, South Carolina, USA

Hi Cindy, I know that fatigue. I've been able to fall asleep in an instant anytime, anyplace. Don't know why some times are worse than others. I'm praying for you. Jenny

I really don't like doctors like that. It sounds like you have made great progress with the physical therapy, the zoloft, the counseling, and the consult. I hope this will help turn things around. There is an artificial saliva you can get, but I'm not sure if it's perscription or over the counter. Be sure she's getting plenty of liquids and maybe try the carnation instant breakfast or other liquid food supplements. Tell her you're not giving up on her and she shouldn't either. She should seriously consider another doctor. Jenny

Hi Tim, I'm about to begin brain radiation myself. It has really helped me to come to this message board and read about other people's experiences who are going through the same things. Everyone is so kind and understands what we are dealing with. You are lucky to have a wonderful wife who loves you so much to support you through this. I hope that you will visit and maybe let us know first hand how you are doing. We are all wishing the best for you and Kathy. Jenny

Don, So sorry to hear about Lucie. It's no fun to be in the hospital. Try to rest and do some things for yourself. I know you'll miss each other and I hope they get this under control and get her back home soon. Jenny

Hi Janis, I guess I know what you're talking about. I was also diagnosed in early March with SCLC. I had 6 chemo sessions of 3 days each and 31 radiation treatments. I just had a PET scan that confirmed that my cancer is gone in my body and am now waiting for an MRI which will be done next Tues. to check the status of my brain. Then I will begin PCI. I understand the depression, but have been feeling better lately to get this encouraging news and to have the chemo behind me. You know they wouldn't be considering PCI if you weren't in remission, so you can feel good about that. I just now have a full head of fuzz and dread the radiation causing me to lose it again. I'm so tired of not having any hair and hiding my head all the time. It is so easy to get depressed, I often wonder why everyone isn't and how they do it. Anti-depressants have helped me. I'm getting pretty good at taking it a day at a time. The people on this board are amazing and seem to find just the right things to say. I'm not so good at that, but want you to know that you're not alone and I do understand. We can go through the PCI together. I've been reading up on the mental side effects and based on the latest thinking, I'm not worried about that anymore. I am just starting to feel back to normal and dread the fatigue more than anything. Come back often and let us know how you're doing. I should have my MRI results on Wed. Let me know how yours come out. Jenny

Dear Ada, I just want you to know that I am thinking of you as you go through these treatments. I hope that you can find some relief from the pain. You have already endured so much. Jenny

Thanks, I loved it! I sent it immediately to my mom and sister with the subject line: THIS IS ME!

Please tell us all about it.

I was recently searching for financial information from the viewpoint of terminal illness and found a wonderful resource at http://www.gaymoney.com See publications: HIV and serious illness. If anyone is considering using their life insurance to get money now - go to this site first. He also mentions benefits specific to NY. I found this site so informative and applicable to my situation that I think I'll post a new topic about it. I have also heard about reverse mortgages and this may be something you could look into. I am so sorry that you have to deal with this additional burden. Jenny