bart ziggie ( Greg )

Thanks everyone for the kind words and help. My docs nurse just called and i am going to go ahead and go to hospital. I think i will be on a pulminary floor im not sure. I hope they can get me breathing better. I will meet with doc/docs this afternoon to discuss the plan. I will post again asap. I also am definately be looking at clinical trials. I dont know if my age will help me through this any better or not but i am confident at being one of the ones that achieve a total response to a second line drug like cpt-11 or topotecan after such a quick recurrence. I am ready to take this thing on !!! See you all soon.

Hello everyone i havent posted here in quite some time. I have been reading post everyday but havent had the courage to post or reply for some reason. As i indicate on my info i went fri and ct scan shows new tumor growth in same site as primary was. Fri. docs wanted to admit me to hosp. but i refused. I go this morning and will let them admit me. I am having difficulty breathing. I think from the tumor. I am scared this morning my symptoms have got alot worse since fri. and i can FEEL the cancer moving. I also realize i am now in the fight of my life because of how soon i have had this recurrance. The pain is unreal already and gotten much worse since fri. I did alot of homework last night thanks to the archives here in regards to recurrent small cell. I do know my options are limited as far as treatments go. I know what meds are available also. I truly hadnt or wasnt prepared for this happening this quick. If there is anyone who can add anything that might help me before i go this morning i will certainly appreciate it. I do know that Topotecan and cpt - 11 are 2 of the second line chemo meds being used for recurrance. I also know that only being 2 months out from initialy being NED is not good. At any rate i will do the best i can to make the best choices i can. I am not going to decide anything today ! The pulminary unit will get me breathing better i know that. I have to be honest i am scared and im not even sure till i have more scans if i have any mets. I am almost positive at the very least its in my ribs. Im also not convinced that i truly was NED for the last 2 months. I dont think the original treatments worked. I have remained symptomatic the whole time. I fired my oncologist sept 1 and got a great doc now at a local university. I am in good hands with the best of everything. I dont mean to ramble but this is really setting in and its like a bomb has been dropped. I will check back here before i leave any help or input concerning recurrance will be great. I will prove all these stats wrong ! I will take the ball and run with it the best i can. I just need to know exactly what im dealing with. Greg

Hello everyone its been a while since i have been here or posted anything. I have been mired in a big funk in a whole bunch of ways. I have missed this board alot. I no longer have a pc here at home and it may be the single biggest thing i look back on to regret. I have started daily radiation and have completed 11 treatments with 22 to go. I have just completed my fourth round of chemo with 2 rounds to go. Heres whats been happening...... I seem to have somehow gotten down in the dumps and depressed since i havent been around here. I have been experiencing some other things as well. My treatments are going fairly well however i have started to experience alot of side effects that i thought i was somehow immune to having. I have changed nausea meds from compazine to kytril and it has been a wonder drug. I started having alot of nausea and some vomiting before my fourth round of treatments. I also have pain back again. I went over 8 weeks with little to no pain and in the last 3 weeks i have had break thru pain. I talked to radiation oncologist finally about it today and he is at a loss as to what it is cuased by. I am taking percoset for pain and until about 3 weks ago it had totally done the job. It is getting back to not being able to think or communicate because of this constant nagging pain. I have some pleural activity also. Pleurisy i think its called. They put me back on prednisone ( 40 mg) per day. It sure has helped my breathing alot but not the pain. Has anyone else been on percoset and doing good with treatment and all and then all of a sudden developed breakthru pain ? i am taking the 5 mg dose now. I cannnot and dont want to deal with this pain . It seems like i cant even think right. I kinda feel like i am having all these new symptoms and i am retrogressing. Is this all just part of anxiety ? GOD i miss this board ! I really need some input here. I really thought i had a handle on this crap and my emotions but i fear it is wearing on me badly. This along with all the other everyday things we all deal with. I will be visiting the local library to keep up with the board from now on. I feel like crap for not being here and talking with everyone. Am i overreacting to all this ? I am so frusterated with everything ! My financial situation thru work offers me very little short term disability and i have had one heck of a time collecting it regularily. I have gave it alot of thought ot tell my Dr. that i have got to make an attempt to return to work after my radiation and chemo. This would mean we would wait on PCI has anyone delayed getting PCI ? I really feel like the weight of the world is sitting on me. I never thought id picture myself ramling on like this. I have always been the " tough guy " this just isnt the case now. God Bless and ill see you alll soon. Greg

Johnathan, great question ! My oncologist has a rep as an very un emotional Dr. Heres my take on it. I like my Dr. he is very very real. He does not sugar coat anything and i respect that very much. He also has been very responsive to any and all of my questions and always takes his time when i see him. He is NEVER in a hurry and i like that. I think it depends on a patient by patient basis with some folks they may interpret this as a Dr. that doesnt care but i know this isnt the case. I truly respect my Drs. professional approach to and with his patients and for me he is the right fit. Thanks for bringing this up i will be wayching for other posts regarding this. Greg

Melissa, has your father had a biopsy performed ? Has he been referred to an oncologist ? I was diagnosed with Small Cell in the limited stage ( meaning it was contained to one lung ) this was determined only after several test that included an mri of the brain,bone scan,and ct scan of the abdomine and pelvic area. This is tough news and i am sorry you have to be here. However you have found the best place in the world for survivors and family,friends of survivors.Please update us and keep us posted. There is alot of knowledge and support here and im quite sure you will get plenty of responses to your posting that will lead you in the right direction. Again, hello and welcome to our family. Greg

Johnathan, i am terrible at giving these type of directions but if you post this in the tech forum Rick or someone will be able to help you for sure.

Excellent Ray ! I just left my Docs office a while ago with info on the Relay For Life here in my area. I will participate and be a part of this as it sounds like a very positive thing to do. I do have a story to relate to you about this that really touched me. I have been divorced for 3 years. I have 2 children. I have a 14 yo daughter and a 12 yo son. I have an excellent relationship with my ex wife and my kids. I try my best to stay involved and updated on all their activities but there is something that my daughter has been involved in the last 2 years that i dint know about. Her along with my ex sister in law have had a team in the relay for life and have raised several thousand dollars over the last 2 years. I didnt find this out until last week ! I am so proud of her. I telephoned her earlier today when i got back with all the info and i am going to be part of her team along with my son and some other close family. This means ALOT to me and im welling up with tears as i type this. I am starting to believe the old saying that coincidences are Gods way of remaining anonymous. I will proudly walk the lead lap with other survivors. I will also tell my daughter how proud i am of her. This is a special kid i have and i will cherish every minute of time i spend with her. Greg

Rosanne, since coming to this board i have learned alot about caregivers, husbands,wives,daughters,sons, and all others who have a cancer survivor in their life. You are all amazing people. Had god seen it fit for me to be the one to be on that end i dont know if i could have handled it. I am not saying it is easier for the one who has got the cancer but i will say that it takes special people to do what you all do who have a loved one affected by this disease. It blew me away to learn how many people are affected by a diagnosis like this. I have had a spiritual awakening as the result of this diagnosis. I really cant explain it nor do i question it. I just know i feel real feelings now that i have never felt in my life and it is feelings for others like yourself and Gianni. I also have been prescribed a med. for anxiety ( not depression ) i havent ever taken anything like this but i take xanax three times a day and it helps calm my fears and anxieties to a point where i can face the day without an overwhelming sense of the weight of the world being on my shoulders. Keep us posted and God bless the two of you Rosanne. Greg

Johnathan, You have done the right thing by passing this along. My prayers do go out to Fran and her family. I recently messaged Fran right after her re- occurance and she messaged me back to say things were not well. From what i know you are exactly right Johnathan this is a remarkable woman. This stupid disease. I hate it ! This brings to mind my case in particular. I have acted as my own advocate since my diagnosis however, i have made arrangments for a life long friend of mine to post here in case i have to be hospitalized or if anything " bad " might occur in the future. It is truly amazing that i feel the way that i feel about this group without ever meeting a single person here. I truly feel the love here. As i have said in past posts i have not always lived such a perfect life prior to my diagnosis and emotion is something i rarely shared before my diagnosis. This news you have passed on touches me and im sure it will touch others as well. This re inforces exactly what i have come to learn in the last few months. Try to enjoy every single moment and to live my life the best i can today. Greg

Sam, i too am sorry the news turned out as you expected. I think you summed it up in your last sentence my friend about preparing for the battle. That is exactly what i know you will do. Sam as i said you are an inspiration to many of us here and you are a tremendous wealth of knowledge to pass on. Keep us posted and i will be praying hard for you. Greg

Hello everyone ! I am so mad i could spit nails. I have been off work since the begining of March. My employer has a short term disability plan thru American General- US Life. It runs for 26 weeks. I am supposed to recieve a check weekly.However, they seem to think it is neccesary to re- evaluate my status at least once a month. This causes delays in my checks.I did not recieve a check last week and will not recieve one next week either. I contacted them on Fri. and the claim rep told me they needed to send another attending physician statement to me so i can give it to my Dr. this is ridiculous ! Does anyone have any info on any consumer advocacy groups or anyone who might be able to help me ? I scrolled down and got all the other info off this forum that i could but i need all i can get. This is totally bullcrap.I know of several others with my company who have alot less signifigant illnesses and they havent had any trouble getting their payments on a regular basis.Im not trying to overplay the " cancer card " here i just expect to recieve my std payments as well as everyyone else. If anyone can help i wouls appreciate it. Greg

Hang in there Sam, I too am praying for you. I know you have helped me alot with the few questions i have had. You are a tremendous asset to this board and its members. Greg

Donna that is fabulous and it is also gives alot of hope to folks like myself just starting my journey. It is always good to hear stories like yours. You are a tremendous asset to the board here. I am very much looking forward to the day i am a five year survivor. Greg

Welcome len, A diagnosis of lung cancer is not what a person of your age expects i know. I am 34 and was diagnosed with sclc in march. The single biggest thing i have done to benefit my recovery is to find this forum here. You will find alot of love here. Truly not a better group of people anywhere in the world.

Rocco Thanks and its stories like yours that inspire me to fight hard and keep positive despite anything........... Greg

Terrie, Prayers and good vibes are on the way ! Good luck and let us know. Greg

Fantastic news Don ! Wishing you and Lucie all the best in her recovery. I am always inspired by reading your posts and replies,your great people ! Greg

Alrighty Kathy thats great news ! I have my appt. Friday with the SSA here. Hopefully they will decide on my case and i will recieve a dose of good news as well. I currently have enough short term disability payments from work to carry me thru this Sept. after that i am worried. Hopefully i will be able to return to work after my treatments and all however the type of work i have always done will probably be out of the question. Greg

Yes great info thank you candy !

Is there anyone here that may be able to shed some light on a few things ? I have decided to apply for Disability for now given the fact that i have been out of work since jan. and could be facing the possibility of being off for one full year.I am not sure i will ever be able to return to my former job or not...... I operate heavy equipment and work in a very labor intensive type job ! I have an appt. scheduled for May 23 with social security. Has anyone else with limited stage sclc applied for benefits from SSA ? I think i meet the criteria but i dunno. I do know that the whole time i am off the bills keep coming and the child support to my ex wife has got to still be paid. I may eventually be able to go back to work i dont know. I am not going to rush back before im ready i do know that. I still have several months of treatment left and then i will see how things are then.Any help or info here would be appreciated....... Greg

Hello Lee Anne,I have been battling severe weight loss as well since my diagnosis.The biggest thing is my appetite.I dont have one now it seems and the teaste of some foods and smells are nauseating to be quite honest.I found the answer to my problem right here.Katie metioned Megace and that is what i asked my Dr. for.Wow just as Katie said i have never felt like eating like this in my life even when i was healthy.The stuff really works great for me.I would reccomend anyone who is having these problems to give it a try. Greg

Jenny,We could duplicate your story and it would also tell mine down to the tee with 1 exception.I was diagnosed on 3/10/03.Otherwise my story thus far is exactly the same.I just finished my third round of meds.I also felt great after my first round..... better than i had in years actually!About the third week after my first round i started experiencing hair loss also.I can just imagine it is awfully tough for a woman to go thru this and you have my utmost regards.Rather than risk embarassment i shaved my head completely.I dont want to seperate sexes here but the difference is clear when it comes to hair loss.The single biggest things that bothered me about this is facial hair.I have always wore a mustache.Now i dont have one but it is ok.I also dont have to shave daily and when i do shave it is simple now.I knida loike that aspect!One more thing that i wasnt too fond of is losing the hair on my legs.I dont wear shorts now just because i am not chosing to.Is this a sign of embarrasment ? I dunno ! Well anyway i am glad you have found this forum as well as myself and others.This board is awesome and i check here daily just like i take my meds i feel this an essential part of my recovery.Hope to see you soon and often ! Greg

Congrats Marie that is GREAT NEWS !!!!!!

Welcome to the board David,you have found the best thing here next to sliced bread.I am so thankful that i managed to find this place and meet everyone.Great scource of experience and knowledge here.It sound like your diagnosis is similar to mine.I also went from diagnosis to chemo in a flash.I have just finished my third round of cispaltin and vp - 16.I start my radiation next thurs.I also have two youngters ages 12 and 14.I hope to see my 12 year old gradute high school is my goal.I want this more than anything in the world and to me this is realistic.Again david welcome to the board and keep us posted. Greg

Mainecoon,Thank you for your frankness.I totally respect your views in regards to the topic.I have been a realist my whole life.I have always been a positive thinker and tried to be a positive influence in others lifes.With my diagnosis i immediately wanted to know what the" hard numbers were " the statistics.Although i may not like looking at the numbers for me it was important.I know that as of todays date there is no cure available for my disease.However,i do hold out hope for a new and improve type of drug or regimen that may provide some future hope for all cancer patients.Here is my two cents worth....... I lost my father to sclc over 25 years ago and in many ways it shaped and molded my thinking over the years and at times i have looked at my own mortality prior to my diagnosis.Since my diagnosis i have again looked at my own mortality and the time i may have left here on earth.Not an easy thing to do for some but for me it was essential in dealing with my diagnosis and getting my self and others prepared for the worst case scenario wich to be quite honest is death.I am not scared of death and i have taken the neccesary steps in pre planning everything while im still here and able to do it ie; funeral arrangements,burial plot,etc... I have also taken the proper steps to ensure the following #1 no advanced life support,No resucitation,No brain surgery if i cant make the descision,along with a few other things.I have learned in the last few months that many of the descisions that have to be made are very selfish in their nature but there is no way around this.I continue to amaze my friends and family with my sense of humor and the way i poke fun at myself but hey thats just me and my way of dealing with things.I do know for sure the day i walked out of the Drs. office after my diagnosis something super natural came over me and alot of my life long conceptions and ideas have vanished and been replaced by an almost morbid like realization that i will be facing emminet death.... regardless of how positive i may be about things.If this is harsh sounding i appologize.If anyone takes offense to my views please have an open mind and realize that i think we all deal with this in different ways and that it is ok.I feel a togetherness and a common bond here on this board irregardless of our thoughts on this matter.It is our life struggles with this disease that has brought us all here together.Hopefully none of us will have to deal with this any time soon however when the time comes i will be able to rest and take comfort in the fact that i have dealt with this in the best way that i am capable of.I just hope my family will look at this in the same way.Again Mainecoon thank you very much... Greg