Jenny G.

Ronna, Welcome to the group. It sounds like you've had a rough year. Hope things will be looking better for you now. Please tell us more of your history and keep us updated. We're here for you. Jenny

Hi Debbie, Welcome to the group. I was told the radiation keeps working for a couple of months after treatment ends. I'm still waiting to have my tests for results. I'm thinking that if the results aren't everything we hope for they will probably try another type of chemo. It does sound like there has been good progress in your mother's case. Please keep us posted, try not to worry, and take one day at a time. Jenny

Hi Steve, Welcome to the group. We are all going through this together. I'm a little confused about your diagnosis. Do you have small cell lung cancer? It is usually staged as limited or extensive though some still use the other staging method. Have you had brain MRI or scans to check for other locations such as bone, liver, etc? It sounds like it is only in your lung and mediastinal lymph nodes? Is that correct? Chemo can do wonders and there is lots of hope, so don't despair. Please let us hear more from you. Jenny

Welcome Bob, I'm glad you have joined the group, this is a great place for comfort and sharing. It sounds like you have been through an awful lot these past couple of years, hope things continue to go well for you and look forward to hearing more of your story. Jenny

Oh Cherry, I'm so happy for you, what a great story. I know just how you felt. I couldn't get through the first brain MRI and had to reschedule a week later, it was agony. Then when they told me the results it was such an emotional experience, an unbelievable relief. So glad to hear you will be starting treatment right away. Hang in there. Jenny

Shannon, This approach just makes so much sense. I wish it could be like that for everyone. I'm just sorry you have to travel to get it. I hope that you can look at it as a vacation and some time away from other distractions. Can't wait to hear more details. Jenny

I'm a little surprised that they would even check for results that soon. Is your dad feeling better or worse? I would agree that no change is probably good at this point. Remember this cancer doubles every 30 days so no change could actually be a big response. Try not to worry, I am using this same treatment and it seems to be doing very well for me. I also have the same diagnosis as your dad. The SCLC is usually very responsive to treatment. Keep us posted on how things go. Jenny

Article from today's news: Spirituality, which is broadly defined as an understanding of the meaning and purpose of life, protects us against end-of-life despair, depression, and hopelessness. Researchers from Fordham University determined that no matter what their religion, terminally ill people who had been given less than three months to live but had a sense of spiritual well-being, were less likely to spend those last months in a state of despair. They were also less likely than non-spiritual people to feel hopeless, want to die, or consider suicide. Previous research has shown time and again that spirituality can greatly ease the mental and emotional anguish that accompany a host of medical ailments or the loss of a loved one. In this study that involved interviews with 160 terminally ill people, spirituality was measured in two ways: Inner peace and the comfort and strength they got from their religious faith. When someone is terminally ill, it is quite common to feel despair in the final days of life. But Reuters reports that even when patients were depressed, they only tended to want to die if they had a low sense of spiritual well-being. Spiritual people who were depressed by their illness did not wish for a hastened death. "Spiritual well-being is a really crucial, central aspect of how you cope with death," study author Dr. Barry Rosenfeld of Fordham University in New York told Reuters. What's the takeaway? Developing our spirituality now may help us enormously later in life. And for those who are already ill, "meaning-centered" therapy could provide a critical boost during the last months of life. "It may be more important as you get older and closer to death, and have a more reflective perspective on life," Rosenfeld said, noting that even those with just a few months to live can benefit from trying to find the meaning and value in their lives. He insists it's never too late. "I think you can gain something up until the very end," Rosenfeld said. The study was published in the medical journal The Lancet.

Hi Cherry, I know I had seen something on the site about this. I went to the top of the page and did a search on laetril and came up blank, but when I put in B17 I found the information that Rick Brown had posted earlier. I'm still learning how to use all the features of this site and there are a lot of good ones. Anyway, you can use the search or look under alternative therapies for the B17 posting. Hope this helps. Jenny

Hi David, Welcome to the group. It sounds like you are doing well and have a good attitude. There's no reason to think you can't beat this. I'm glad you posted the picture of your family, it makes it so much more personal. I wish everyone would do this (hint, hint). Not long ago, I never would have dared, but cancer changes a lot of things. This is such a wonderful group, it's hard not to feel welcome and relaxed here. It really is the best medicine. Look forward to more of your posts and hope you continue to do well. Jenny

mainecoon, Your wife is on the same chemo that I am. I was told I would loose my hair in about 2 weeks after the first treatment. I got my hair cut short first. It took a little longer before it started coming out a handful at a time when I combed. I had bought a wide tooth comb. It never was a problem in the shower or on my pillow case (satin). I now think I was a little premature at buzzing it off with the electric clippers. I never did loose all my stubble, but I could tell I would have had some pretty thin spots. I never lost any other body hair either although many do. I still have to shave my legs, so I didn't get a break there. Some people don't seem to be uncomfortabe with their baldness, but I'm not a very attractive bald person and it still shocks me everytime I look in the mirror. My son is not comfortable seeing me bald and prefers the wig. When I'm at home I wear a simple soft turban cap. I'm discovering a lot of interesting things you can do with scarves and having fun experimenting with different wrap styles. Long narrow scarves can be wrapped around your head twice and tied in the back. Some are actually quite elegant. The wig doesn't bother me, but I am glad to get it off at the end of the day. I will be staring my 4th round of chemo on Tuesday and I'm already seeing new hair growth. I've heard it often comes back curly when it was previously straight and may be a different color, but I think it eventually gets back to normal. It will be a good chance for me to experiment with different styles. (Always try to look for the positive.) I hope that your wife will find benefit from the chemo as I have and not have too many of the bad side effects. I'll be thinking of you both and wishing you the best of luck. Bart, I had my xray on March 5, the ct on March 6, and on March 10 the pulmonologist told me it was small cell from looking at the ct. So I guess that was my official diagnosis day too. He did the broncoscopy the next day. My first visit to the oncologist was March 13, first chemo March 18 because I have it Tues, Wed. & Thurs. I just found out that I will have 6 rounds too. On my last vist doc said I was doing great, they thought I would be doing much worse so I'm feeling pretty good right now. He told me he didn't see any reason I couldn't be one of the ones that make it 5 years. I'm jealous of your legs! I'm glad we both found this place too, I check here everyday and it has helped me so much to stay positive and not all alone in this. Be sure to keep us updated on how things are going. I'm looking into info on vaccines now, but it looks like a long shot. Jenny

Hi Cherry, You are so right to focus on the positive. It sounds encouraging that surgery is a possibility down the road. What you are going through now, to me was the worst. I was so anxious over the brain MRI. I asked the technician to please tell me if he saw anything, but he wouldn't. Then when we were finished he was real nice to me, so I was convinced that it was bad news. The doctor that found the mass on my xray was really nice to me too so I was sure it was a bad sign. You can really drive yourself crazy. Waiting for those results was the hardest, but it was good news and I hope it will be for you too. Once I actually started treatment I felt so much better that something was finally being done. In the beginning I felt like researching and learning about my condition was a full time job and it really takes an emotional toll. Finding this group and all the wonderful people here has helped me so much. Things do start to calm down and get into a routine, then just take it a day at a time. You have a good attitude and that is so important. Keep coming here for comfort and support and keep us posted with your progress. We're all in this together. Jenny

I think this is an excellent idea. It would be nice if an existing established organization would go in this direction. We definitely need research, but funds directed in this area could do a lot of good. I was fortunate to have insurance too, but that insurance wouldn't even pay for a wellness chest xray and we know how expensive CT scans are. Also more people might be willing to try to quit smoking if the aids were more affordable. Wouldn't it be great to see lung cancer screening get up there with breast cancer and mammograms. They're really getting the word out and making these services available to everyone. Maybe we could choose an organization and lobby them to help. This would also be an excellent use of tobacco co. funds, maybe we should start there by lobbying our representatives. I like the way you think. Jenny

Hi hopeful2, It was neulasta that I got. I'm glad they decided on that rather than the neuprogen. I'll find out Thursday how it's going. Someone told me that one shot costs $700. I'm so thankful I have insurance and was able to get this. I see that you have finished treatments, how are you feeling these days? Does a clear scan actually mean no sign of tumors? You're where I hope to be soon. I've just finished the 3rd chemo and radiation and feel worse than ever, did it get worse for you with each treatment? Did you notice any side effects from the neulasta? Did they use it everytime from the beginning or just because you had a problem? It's hard to tell what's causing what, I guess a combination of everything. Did you have a lot of scar tissue from radiation or any other long term effects? How did the PCI go for you? Hope you don't mind all the questions, but I'd love to hear more of your story if you don't mind sharing. You are an inspiration and I'm glad you are here. Jenny

Michelle, The waiting is just the worst. I think it always feels better to finally be doing something and it sounds like the ball is finally rolling. Keep your positive attitude, there is a lot that can be done. Jenny

Thank you all for your support! To Jonathan and everybody, First I want to thank you for your concern. I am so glad someone with your background has joined our group. We need all the support we can get around here. I live in a very small rural town with 1 stop light. I drive about 20 miles to the next town for treatment. We have 1 group of 4 medical oncologists who treat all the cancer for the surrounding counties. I feel so grateful to have them here. My doctor is the newest member, very young, and came to us from a teaching hospital in Florida. It is my hope and belief that I can obtain the latest treatments from him, but I know that I have to take charge, research, and stay on top of things to be sure that he is providing me with the best treatment available anywhere. I have already asked him about a vaccine and he agrees that is a possibility for me. Many people around here go to Atlanta for treatment (Emory). I made my decision based on my need to work, be there for my son, limited resources and energy, finances, etc. Also the fact that I was quickly directed into treatment and things moved very fast after I was first diagnosed. I have found that Dekalb Medical Center in Atlanta offers a multidsiciplinary 2nd opinion and that is my next step. I should find out in a few weeks how this first line of attack has gone. The radiation and medical oncologists do work together and practice at the same hospital. I was very impressed with the facilities here and the alternative would have been to live in Atlanta for 3 weeks. The way I'm feeling right now, weak with no energy, I would hate to face that 1 1/2 hour drive each way. Both docs think things are going very well. It is scary for me to put my life in their hands, but I do feel good about them, except for the slip up on my blood counts. I received a shot of neutrolast (sp?) after my last round of chemo and have another appointment scheduled to be checked. I am actually feeling good except for this new kind of fatigue. I just feel like a zombie, haven't been going to work and am doing absolutely nothing. I guess it's the combination of all the treatments and hope it lets up soon. Please let me know your recommendation for treatment facilities, I may go there for a 2nd opinion, but prefer to continue receiving treatment here unless I find something they can't or won't do. I also unfortunately suspect that insurance may have an effect on how often people are tested and possibly other preventative treatments they receive. That brings me to another issue. The internist that I had been seeing for routine care, physicals, etc. was not very proactive in my care. During my last physical I asked for a chest xray. She said she didn't think it was necessary unless I was having a problem and that insurance wouldn't cover it. (This with me being a 35 year smoker and using an inhaler.) Now, in hind sight, I should have insisted, even if I had to pay for it myself or come up with a complaint. We know that chest xrays don't always find this, but I feel that it very likely would have shown up then, since that's how it was eventually diagnosed thanks to an excellent doctor at an after hours care facility. This board has been such a help in keeping up with treatment and developments. All information and advise is always appreciated! Jenny

This is hopeful information. I too, would like to know more about the Boston Globe article if anyone can find the archived link or post a summary of the article it would be appreciated. Jenny

Thanks Spanky, This is the kind of information I like to find. Will be checking into this more and sharing with my doc. Jenny

Hi, I have not personally read this book, but it was recommended to me and I plan to get it. Would like to hear from anyone who has read it. Beating Cancer With Nutrition (newly revised edition) by Patrick Quillin (a widely acclaimed nutritionist with Cancer Treatment Centers of America). This book gives therapies that can be used in addition to conventional means (chemo and radiation). Jenny

Well, Friday should have been my last radiaiton treatments, but will now finish up on Monday. I've got 29 behind me and things are looking great. They feel the Amifostine did it's job and they will probably be using it more often now. I can eat anything with very little problem. The downside of this medication is of course the injections, I didn't have too much trouble with that, but they are giving this to another man now and he is very needle shy which makes it more difficult. Also, I found out that it is even more nausiating than the chemo, but that has been controlled with anti-nausea meds (pretty much). Of course, we don't know how I would have done without this, but they think I would have been having a lot more difficulty with my esophogus. The carafate probably helped this too. I'll update again with any long term effects and hope this has been of some help. I am, at this point, glad I had the 2x day treatments. Besides the hopefully added survival benefits, it went by very quickly. One of the main reasons this is not used more is transportation issues. I was the only one in this practice receiving 2x daily at this point so it still isn't commonly done here. Wishing you all the best! Jenny

Thank you all for your support. I do have a CBC done before each treatment and had another between the 1st and 2nd treatment, but for some reason they didn't do one between the 2nd and 3rd. I'm sure they will now. I was still a little shaky last weekend after getting out of the hospital, but went back to work between radiation on Monday (it's almost easier than driving back and forth home). I started freeling nausaus and vomited and got a slight chill so left a little early for my radiaion treatment and ask them to take my temperature. It was 102, they decided to go ahead with the radiaiton and then sent me to med onc. who put me on intravenous antibiotics in the office where I got sick again. They gave me Zofran to disolve on my tongue and that took care of that. They sent me home with a perscription of antibiotics, a HUGE pill, bigger than all my others put together. My WBC was up to 7. I was supposed to start 3rd round chemo on Tuesday, but they wanted to delay until I had been without fever for a few days. We started 3rd round on Thursday and will finish on Monday. I'm feeling much better as has oddly been the case when having the chemo. Also haven't been to work in a few days. I think my nausea may be caused from the Amifostine injections I'm getting for the radiaiton. I was told it's worse than the chemo in that respect. I will also be getting an injection on the day following my chemo for the WBC. Feeling glad to be back on track. Bless you all. Jenny

Excellent post Cary, thanks! That's the kind of information we need.

Hi Donna, I'm so glad you joined. I feel as if I already know you and you definitely have a wonderful daughter who is able to lend her support to a lot of us here. You have been an inspiratoin for me in my treatment and have given me hope. So glad to finally meet you. Jenny

Laurie, Don't be so hard on yourself. Just because someone else has it worse doesn't make your problems invalid. I can honestly say that my divorce caused me just as much angish as this cancer has and I know what it's like to deal with financial problems on top of everything else. It sounds like you've had it pretty rough. I hope you have support where you are, I too am far from family. You have been so supportive for me and I want you to know how much I appreciate it. I don't know how you pulled off winning this trip, but that is so fantastic! Sounds like a dream and just what you need. I hope you can put everything behind you for awhile and really enjoy this - you deserve it! Jenny

The American Cancer Society in my town offers this. Anyone interested might check with their local office to see if it is available.