mama4zach

Hello everyone, Have a question that my dr can not seem to understand. Up until my lc spread to the bones did I have such a problem. But why can't she just take my word for it. Morphine is very good pain medicine but, it makes me so sick that I can't eat and I can afford to lose anymore weight. She says that it is the best med for me and will not even think about trying anything else. I asked for the duragesic pain patch and she said no that there are too many of those failing and releasing meds at too fast a rate and killing people. If any of you have any advice, please let me know because I need something for pain but I can not lay around sick at my stomach either. Thanks so much, Nancy

I do not know how each of you feel, but I do not think it is good to tell someone they only have months to live. No one knows that but God and I know what it has done to me mentally. I think it would be best to tell a person that they have done all they can do but don't say 2 months or 3 months. It is enough to drive you crazy. How can you even think positive if you are told that. Please let me know how you feel. Also, I will be starting a clinical trial on Tuesday at Johns Hopkins. Please remember me in your prayers. Thanks, Nancy

thanks for info thus far but my dr has told me no radiation on mets. I had 30 treatments of radiation with my lc and 15 pci treatments so i don't know why no radiation. They say bone mets are so painful. Lord help me. God Bless Nancy

Hi to everyone, I go back to my sclc onc tomo to discuss my bone mets and what can be done. I have one at the base of skull in neck, one in shoulder, one in pelvis, one in hip, one on tail bone, one in the upper thigh and one on my butt. When I first spoke with her she made me feel like not much could be done. She said i had 2 options, nothing at all or chemo with will consist on irinotecan and carboplatin. It will be given once a week. She also mentioned a trial. I really don't know much about mets to bones except it hurts bad. But I thought they could be treated. I was dx with sclc limited in January of 2005. I received cisplatin and etoposide and radiation until the end of April. I also had PCI treatments. I go to Johns Hopkins and would think they would know what could or could not be done. I understood her to say even with chemo I only had about a year. I know no one knows how long anyone has to live except our Lord up above, but it is really scarey when you have a 3 year old to think about. If anyone has had this treatment would you please let me know how it did both with the cancer and physically. But like I said before I was in shock when I talked to her and maybe I misunderstood. Please help me if you can. Thanks, Nancy

Hi guys, Please if anyone knows where i can find any information on sclc mets to bones, please let me know. I have heard and read some things that scare me to death. The dr says only months left without a new trial treatment. How could it work so fast to kill you?????? I have always said I wanna go to heaven but not yet. I have a 3yr old to raise. any info will be appreciated Thanks, Nancy

Hi to all of you, I thought I would let you know I got my results today and they were not good. I have multiple bone mets from neck, shoulder, hip, pelvis to the thigh. I did not get to talk to dr and won't get to till monday but I was wondering is there anything they can do for the bone mets??? Since I had the sclc, I did not think they could do surgery. Is there any chemo to help??? If anyone knows please post it. I am almost crazy. Thanks, Nancy

Hello to all, I have not posted here in awhile but I have kepted up with everyone. I would log on and read every other day and some of the ones I had orginally met and talked with had gone to be with the Lord. I don't know why but I felt like why should I bother anyone with my complaining when everyone seemed to be grieving. It has bothered me very much to have lost so many so close together. I am so sorry for each loss. I was actually dx with sclc 1/31/05 and had chemo and radiation and pci. My last treatment was 6/30/05. But I was actually just starting to feel a little better. I had my 3 month scan yesterday and my mediastinal lymph was enlarged. I am scheduled for a pet scan Thursday. This lymph node was involved from the beginning. So I was dx with sclc limited. I am 51 years old and have been a smoker forat least 35 years. I have fought for a year and as you all know it is a tuff fight. I went from a size 12 to a size 4. I think the pci treatment was harder on me than chemo. Like I said my last treatment was 6/30/05 and the next 6 months I had no appetite and just all kinds of aches and pains. I have my appetite back now Praise the Lord but am still not gaining any wt. I am scared and I wanted to see if anyone else had this happen and if so what treatment was used. I have a 3 year old if you can remember, he is my grandson. He lost his mother, my daughter when he was 4 months old. I am really depressed and just can't seem to find any peace about any of this. I know I have to die like everyone else but for Zachary, I feel like I am losing it. Sorry this has been so long but maybe someone might be able to say something to help me. Thank you for listening. Nancy

Cindy, thoughts and prayers will be going up for you. I believe in the power of prayer. I know how you feel because i have been there. May God be with you tomorrow. Thoughts and Prayers Nancy

Prayers for you going thru this awful diease of cancer and then the awful diease of depression. I have been there. It is bad but God can really help you. You just have to trust him. I sure hope things start going right for you real soon. Thoughts and Prayers Nancy

I am with Katie where there is life there is hope and when there is hope miracles can happen. We are serving a BIG GOD. My hopes and prayers will be for Alex to be as comfortable as possible. Thoughts and Prayers, Nancy

Hi Everybody, I have been doing a little better. I just have a question for any of you that had PCI treatment. After chemo I had enough hair to call it a buzz. After the PCI which the last one was 6/29/05 I still have no hair. Any suggestions????????? Thoughts are Prayers, Nancy

Joanie, I know exactly how you feel. I try to keep reminding myself that if it is I will deal with it and if it is not I will be happy. All we can do is just pray and hope for the best. I will be praying for you. Thoughts and Prayers, Nancy

Cindy, So happy for you. I praise God for the good report too. I am scheduled for my 3 month checkup August 15th and I am really scared. I hope your mri goes well also. Prayers Coming Your Way. Nancy

I forgot to mention that I live in WV and I see a dr in Baltimore MD at Johns Hopkins and my pcp has been very involved in my treatment. I don't know if this matters or not but thought I should let u know. Thanks, nancy

Hi Everyone, I have a question for anyone that ever experienced this kind of pain that I am having. I don't know how to put my history on here like you guys have it solong story short, i was dx with sclc limited in dec 2004. I am 50 yrs old and am raising my grandson. He is 3 yrs old and his mother, my daughter passed away when he was 4 months old. The last 4 yrs of my life has really been tough. I almost feel like Job in the Bible. Anyways, I keep fighting because of my grandson. I had my last chemo treatment the last week of April, cisplatin and etoposide. Had the last of 10 pci treatment june 29. Lost all hair again not like a had much but at least it was a short buzz. I don't think I have had one day since my first treatment of chemo of not being nauseaed. I take zofran and prilosec 2 times a day. I also take pain meds as needed. Well I felt like I was getting better more energy and strength before the pci. And just this week starting having alot of pain in my back and stomach. I called my doctor and told me to contact my family dr and have a test for ulcer. They also moved my appointment date up and told me to take the pain meds on schedule till I get it under control or if I didn't it was hard to control. Anyhow, has anyone else had this pain afterwards? Or do u think I could have the cancer again???? Would everyone on this board please pray that is not the case. I feel like I just can't take much more. I am still fighting but I feel like I am the one getting beat up. Any information you can give me will be much appreciated. Sometimes I think I just get so scared and maybe that makes it worse but I am really worried. Have I had enough time to be boucing back or is it still early????? Thank you all for everything. Love and Prayers For All, Nancy

HI, I was just wondering if your wife is taking and procrit for low red blood count. I had to take it for several weeks and my legs almost killed me. My doctor said it was from the procrit. Just thought I would share that with you. Hope she soon finds out because it is miserable. Nancy

Hello Everybody, It is me again complaining as usual but if I cannot vent here what do I do. As of 6/29/05 I completed the PCI treatments. Since then I have been going downhill again. I had just started feeling a little bit normal when I had to make the decision of PCI treatment or not. I just thought well at least if I have them I won't feel quilty if I should get a brain tumor, but these side effects are bad. I think they are as bad as chemo. I have no appetite, very nauseous, weak, shaky. I am really have a rough time. I had about 1/4 inch of hair it is all gone and I have burned places on my head and behind my ears. I have fought thru these last 7 months with all I had in me. When does this stop? Anyone who has had this and side effects please reply and tell me it is gonna get better. I know we all have rough battles and rocky roads ahead but I am just so sick. Please reply. Thanks, Nancy

Donna, I just finished the PCI treatments which is a preventative type of radiation. It makes you tired and I had some nausea with it. Everyone is different. I did not lose any hair altho I don't have much anyhow because it had just started growing back because I had my last chemo treatment the last of April. Other than headache, off balance and the other side effects I mentioned, it has proven to work so I just pray that it does. I hope all comes out good for you. You will be in my prayers. Love and Prayers, Nancy

Hi Everyone, What time is chat tonight??? Please let me know so I can join. Thanks, Nancy

Karen, I didn't get to know Dave but he must have been a wonderful man. I really don't know what to say expect I am so sorry and know that you and Faith will be in my prayers. Love and Prayers, Nancy

Hello Everyone, Hope everyone is as good as can be in the situation that we are all in. As you guys might know I have finished my chemo of cisplatin and V-16 and have gone for my 1 month scan after chemo and radiation treatment. I was dx with sclc in Jan 2005. Had a mediastinoscopy and found a tumor in lung with mets to lymph nodes. So my dx was limited. When I went for my one month scans, my oncologist recommended that I have the PCI treatments as a preventative measure but the more I read on the board the more I don't want to do this. I am on my way back to normal and to think of being down and out again i just can't even think about what it might do to what good cells i have left. The radiation they did on my lung almost burned my esphogas out. I have lost 20 lbs and I have a 3 year old grandson I am raising. Please someone give me your advise on the treatments...Would you do it again or not if you have had the PCI????? I am anxiously waiting for some responses. I am just so confused and frightened at this time. Please help. Love and Prayers, Nancy (Mama4zach)

Went for my 1 month check up after last round of chemo and radiation. My tumor has decreased to about 1/4" size. The original was 5. Anyhow my onc wants me to have preventative brain radiation. I think she called it PCI. If you have had it please let me know if you would do it again or not. I hear it is bad. Thank you for anything you can share with me. Thanks, Nancy

Well I was dx with sclc in January 2005. I had 30 treatments of radiation twice a day and took my last round of v-16 and cisplatin 3 weeks ago. Upon doing all the scans they found out I had deteriorating disc in my upper back and neck. I have RA. Also the radiation burned my esophagas and I feel like I have something stuck all the time. I go for my scans Monday to see where I am with the tumor. I pray that it is gone. But I just didn't know how long all this pain would last. I take percocet for pain and if I take it it helps my pain. So I just wanted to explain myself more throughly. So I guess my question is how many of you still have pain and have to take meds for it. Thanks Nancy

Hi Everyone, Going Monday to get my scans. I finished my chemo 3 weeks ago and have had alot of problems with my blood counts and feel so tired but I am just worried over what Monday has to hold for me. I also wanted to ask how long is it before the pain goes away and you can stop taking pain meds. I try not to take them but i wait as long as I can then I have to take one. Please let me know how long do you usually take them. Hope all is going good with everyone. Thanks, Nancy

Hello Everyone, I just got home from the the hospital on Tuesday and just getting around to checking in on everything on computer. I have finished my radiation and have 2 more rounds of chemo to go. It has been a tough road. I had my last round of chemo March 15, 2005 and by the following Thursday I was very sick. I had to have a blood transfusion and my blood counts all dropped to nearly nothing. I was in the hospital for 6 days. So I have an appointment with my onc on Monday to see if my dose needs changed or ?????????? I am taking cisplatin and etopiside. But I thank God I am still here. I did not know it but they said I was very lucky to have come thru such an ordeal. Also, where they did the radiation my esophagas was burned and I am having problems with swallowing. My taste and smell are all messed up. Sounds like alot of complaining but I am just giving you guys an update. Hope to be able to talk to you again soon but don't know what Monday holds so keep praying and I think of you guys often. Love, Nancy