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Small Cell lung cancer extensive stage SURVIVORS needed!!!!

JaneEllen
Posts: 6
Joined: Dec 2003

Hello! My mother Sherry, age 55, was just diagnosed with small cell lung cancer extensive stage. Everything has happend so quickly from living a normal healthy life to finding out my mom has cancer and starting treatment and then being hospitalized fighting for her life all in a matter of 3 weeks. I am her daughter Jane age 31 and I am so close to my mom. We live a mile away from one another and I have to see or talk to her on the phone 3 or 4 times a day. She has 4 grandkids a 3 mo, 6 mo, 2 yrs and a 3 year old that she wants to see grow up. They origianally thought there was a pinched nerve but the MRI done on 12-4-03 confirmed tumors on her spine. It wasn't diagnosed as small cell lung cancer as the primary until 12-16-03 (almost 2 weeks later) She started chemo 12-18 using Cisplatin and Camptosar. It has hit her pretty hard. She was hospitalized 3 days later on 12-21 with chronic diarrhea, occasional vomitting, her stomach is so tender and sore she hasn't eaten solid food for over a week and she is still in the hospital today. It has all happened so fast she was living a normal life with nothing wrong until December 2003 and within 2 weeks she went down hill so fast it is unbelievable. They gave her radiation to the spine for a total of 10 days. They did radiation on the spine before they even knew it was small cell lung cancer. With CT scans and MRI's and bone scans they found that the cancer began in the lower left lung lobe and has metastasized to the adrenal glands, hip bone, tail bone, left eye, and small spot on breast not sure it is cancer or a benign cyst. I believe she is or was close to death from the chemo. I need to know what I should expect, is this normal to get this bad from only one dose of chemo and what does anyone suggest for further treatment that has been successful? I want to help my mom and make sure we are doing everything we can to beat this. I have read that some people are going on 2 and 3 years of remission with small cell lung cancer and that is wonderful news. The doctor's prognosis is not good and was given in months, but I will not accept that. Please let me know that there are survivors. I would love to learn all I can to help my mom. thanks, Jane Ellen

schuyler
Posts: 32
Joined: Nov 2002

Dear JaneEllen, I have been undergoing lung cancer treatments for over 3 years now. They are being very agressive with Your mother's treatments and chemo because of the advanced stage. It's devastating to the body, as you well know. You can really help your mom most by keeping in close touch with her doctors and understanding why and how her treatments are being done. In other words, try to be pro-active, as your Mom is not able to right now. We all deal differently with crises in our lives. Be there for her emotional support and take your cues from her on how she wants to face this challenge. That is the best way you can help her. Very best of luck to you both.

michaelcie
Posts: 133
Joined: Nov 2001

hi, I am mike and a small cell lung cancer survivor, I was given a 5% chance of survival and received cisplatnum, taxol, vp-16 and also carboplatnum. I was also hospitalized over sickness due to chemo. I also had six and a half weeks of rads to chest , side and back. Yes is normal for sickness and vomiting , some are worse than others. Just be very active with her doctors and treatment. Support her , because she needs positive influence and support. God bless and hugssss mike

jmevans
Posts: 13
Joined: Apr 2004

Hi Mike - I am glad to hear that you are doing so well. My mom has small cell and was diagnosed as limited, but it has returned after 1 year in two other spots. Now of course they say that it is incurable. However, she is otherwise in great mental and physical condition and insists that she will beat this and doctors be "darned". My question to you is were you extensive stage when diagnosed? DId it ever return prior to being free? Thanks so much for your help and God Bless! Jennifer

nicholesmom
Posts: 17
Joined: Jan 2004

Jennifer,
My Mother was also diagnosed as limited and they say now that she is cancer free. Did they say that about yours too? She was scheduled to go to Sloan Kettering for a trial vacine, but when she went today they said that they would not do it because it has caused problems and her balance is off now so they could not do it.
When they say incurable what do they mean, that this time they cannot get rid of it or that it may keep coming and coming. My Father is the one who deals with the Doctors and he keeps everything a secret.
Any advise is appreciated. I will add your Mother to my list of prayers.
Kim

thank y

jmevans
Posts: 13
Joined: Apr 2004

Hi Kim,
My mom was originally diagnosed in nov 2002. She underwent chemo and radiation as well as the profolactic brain radiation. She was announced "free" of cancer at her catscan in May 2003. Her next catscan in Aug 2003 revealed what they called a residual/persisant spot in the lung. They removed the spot as part of the biopsy and she underwent both chemo and radiation again. Her Nov 2003 and Jan 2004 catscan were both "free" of cancer. A few weeks ago she had some pain in her back - at the time she was undergoing physical therapy for arthritis in the spine. So the doctors attributed the pain to a pinched sciatic nerve. Well on this past Thursday she tried to get out of bed and collasped - she had no strengh in her legs. We took her to the emergency room where they said that she had 4 compressed vertebrae and a bulging disc - as a result of two very small tumors on the spinal cord.

They (drs) will not do a biopsy of the tumors they assume cancer because of her history. Anyway - I know that I am rambling but all of this just happened yesterday so is a bit raw and way too fresh! She had her regularly scheduled 3 mth catscan on Monday 4/12 and her visit with her oncologist yesterday 4/14. They told us that she has the two spots on her spine and a small spot on her adrenal gland as well. And as we know once it comes back it is now considered incurrable and we can expect that she has approximately 6 mths - due to the typical rapid growth progression of this disease.

With all of that being said - if you looked at my mom, she is 48 years old and in excellant health otherwise. You would never in a million years know that she was/is ill. She says to heck with the doctors - she has too much to live for and knows that she will beat this. She says that God has given her peace and let her know that she has a rough road but will be fine. So I believe her and feel the same way. I am now looking for clinical trials that may make sense and trying to work more with her on nutrtion - she like sweets and diet pepsi too much for my liking.

As for your mom, keep the faith and encourage you parents to let you go to the doctors with them - if this is not possible read everything that you can on this disease, but do not get hung up on the statistics. They are just numbers and there are people to the left and to the right of the numbers that conveniently get forgotten by the doctors. I believe that each person is different and cannot always get lumped into the numbers/same mold as everyone else. I believe that mentally and spiritually wellness are huge factors in getting better!!

Does anyone know of any good clinical trials thay have heard about rearding this disease?

Jennifer

nicholesmom
Posts: 17
Joined: Jan 2004

Jennifer,

I am so sorry to hear about your Mom, I have included her in my prayers. I don't understand why they say that it is incurrable. They are not even going to try to see if it reacts to chemo or radiation? If that is the case, call another doctor and see what they have to say. My Mother went to try a clinical trial at Sloan Kettering but was not taken because she has some balance issues and the particular drug they were going to try on her sometimes causes neurological problems, and they could not do it. I was very disappointed because of so many of the return cases you hear of, but my Mother wasn't because she was afraid to try it.

I don't think that I could take the 6 months news, I give you a lot of credit. I am so sorry for you and your family. Please contact me if you need anything.

Kim

jmevans
Posts: 13
Joined: Apr 2004

Kim and Mandee33-

Thanks so much for your responses to my e-mails. My mom sounds a lot like your mom Mandee33. She has a great outlook and she said that nothing is stopping here from dancing at my daughters (her granddaughter - only grandchild, so far) wedding. My mom loves to dance and my daughter is only 11 mths old.....

I also beleiev that she will beat this. Her doctor and i have spent the last two weeks identifying clinical trials that would be possible for my mom - we actually meet tomorrow afternoon to determine the next steps. We had to wait unil she finished the radiation to her spine - which ended last week.

Your messages came at a good time for me as I was just second guessing myself on whether or not I'm doing the right thing here with starting a clinical trial. SO thank you very much and feel free to contact me at 716.440.8103 if you need to talk, words of encouragement etc. I'm praying for your mom Kim and hope that she is doing well and Mandee33, I am thankful for your mom!

Jennifer

mandee33
Posts: 2
Joined: May 2004

To Kim, JMEvans & Jennifer:

I am new to this board, so decided to respond to the latest posts on above subject. My mother was diagnosed in November 1994. After surgery to remove 2/3 of one lung, radiation and 3 different types of chemo, she is still a survivor (10 years)! The last round was around 1996 and during this treatment she became so weakened she was admitted to the hospital. They told us at that time that her cancer had spread to her throat and there was nothing they could do. Little did they know. When a visiting clergy asked her if she had a living will, she replied "I'm not ready to check out yet", and she meant it. She was literally "out of it" for an entire month of her life. She did not remember anything that took place during that time. She is now 76 years old. God bless you all and certainly don't give up. She had the determination to make it and we believe that was a big part of her survival.

mandee33

nicholesmom
Posts: 17
Joined: Jan 2004

Hi Mandee33 & Jennifer:

Mandee33 you really do have quite a story - what an amazing woman!! Jennifer how is your Mother doing, are you holding up ok? I am happy to tell you that we made my mother get up and move, of course she is still weak, and very skinny but you would be amazed at the turn-around. Two weeks ago, she needed help to get the bathroom and now she is moving all by herself. I really forsee good things, I guess the key is to keep the faith even when they have lost it.

Take care everyone and hope to hear from you soon.

Love and Affection.

Kim

jmevans
Posts: 13
Joined: Apr 2004

Kim,

I'm glad that your mom is up and moving around. I believe that you are absoluetly correct in saying that we must keep the faith. Without faith we would have no hope! I hope that your mom continues to improve, stay strong and keep your faith. I still have mine even though my mom was just diagnosed with 3 "small" tumors in the brain and yse she did have the profilactic brain radiation. We go in tomorrow where her doctors will be starting gamma knife radiation - anyone have it before ? Any side effects?

So keep the faith and I will continue to pray for you and your mom.
Jennifer - By the way my mom is still in good spirits and calls these little setbacks to the road to recoverey.

Please ignore my incorrect spelling - I am completely dependant on spellcheck!

jmevans
Posts: 13
Joined: Apr 2004

Hi Kim,
My mom was originally diagnosed in nov 2002. She underwent chemo and radiation as well as the profolactic brain radiation. She was announced "free" of cancer at her catscan in May 2003. Her next catscan in Aug 2003 revealed what they called a residual/persisant spot in the lung. They removed the spot as part of the biopsy and she underwent both chemo and radiation again. Her Nov 2003 and Jan 2004 catscan were both "free" of cancer. A few weeks ago she had some pain in her back - at the time she was undergoing physical therapy for arthritus in the spine. So the doctors attributed the pain to pinched sciatic nerve. Well on this past Thursday she tried to get out of bed and collasped we took her to the emergency room where they said that she had 4 compressed vertebrae and a bulging disc - as a result of two very small tumors on the spinal cord. Now, they will not do a biopsy of the tumors they assume cancer because of her history. Anyway - I know that I am rambling but all of this just happedned yesterday so it is stilla bit raw and way too fresh! She had her regularly scheduled 3 mth catscan on MOnday 4/12 and her visit with her oncologist yesterday 4/14. They told us that she has the two spots on her spine and a small spot on her adrenal gland and as we know once it comes back it is now considered incurrable and we can expect that she has approximately 6 mths - due to rapid growth progression of this disease.

With all of that being said - if you looked at my mom, she is 48 years old and in excellant health otherwise. You would never in a million years know that she was/is ill. She says to heck with the doctors - she has too much to live for and knows that she will beat this. She says that God has given her peace and let her know that she has a rough road but will be fine. So I believe her and feel the same way. I am now looking for clinical trials that may make sense and trying to work more with her on nutrtion - she like sweets and diet pepsi too much for my liking.

As for your mom, keep the faith and encourage you parents to let you go to the doctors with them - if this is not possible read everything that you can on this disease, but do not get hung up on the statistics. They are just numbers and there are people to the lfet and to the right of the numbers that conveniently get forgotten by the doctors.

WHat was the trial vaccination that they were going to use and do you know why your moms balance is off? Is it a result of the cancer, treatments or something else?

Jennifer

towanda
Posts: 19
Joined: Mar 2002

Hey! My name is Cindy and I was diagnosed with small cell lung cancer ext. 2 years ago and have been in complete remission for a year and a half! I know that the world seems to have turned upside down and everything is gloom. I remember waking up in the morning and for a split second thinking it was all just a bad dream but then reality would kick in as I would again realize the nightmare was just beginning for the day. Please don't give up hope. My first round of chemo wasn't pleasant either. I suffered a grandma seizure and I hallucinated too. Everything smelled terrible and I also had aggressive radiation to my lungs and throat. I couldn't even swallow anything for 2 weeks. Including my own spit. I had an 8 cm tumor in my left lung and a baseball size tumor in my lymph nodes in my neck. What's important to remember is that it is very possible to survive this. And I don't know if you're interested in this yet, but I'll tell ya, I've got a great physician. His name is Jesus Christ and he has turned my life around. I'm here to tell you, your mother can do this. She CAN live through this. I remember being so bitter when I found out that i had lung cancer. I remember laying on my back at the hospital with tubes of chemicals pouring through my veins cursing God. "Why did you do this to me?" And now I know that sometimes we have to be lying down in order to be able to look up. I would really love to talk to you more about this and if you would like to talk to me, please do so. My number is 13043661204. May God bless you and your mother. Both of you will be in my daily prayers. Good luck. "TOWANDA"

quazter3
Posts: 4
Joined: Jan 2004

Hello, my name is Tony,I also have small cell cancer I was told in July of last year. I have been doing chemo,and also learning herbal medicine,is anyone else out there using herbs? I am very glad to know someone who is still living after two years.

AJL
Posts: 13
Joined: Feb 2004

Hi Tony,
My name is Andy, I also have small cell lung cancer. I was diagnosis with limited small cell lung cancer in the fall of 2001. My tumor was 8cm long and 4cm wide. After the first round of chemo and radiation, my tumor grew back within 4 month. Now I'm told that my cancer is incureable in 2002. For round 2 my Doctor recommend I try a stage 2 clinical trial drug call Vincristine sulfate for 6 months with a ct scan every 2 months. The drug responded to the tumor. With every 2 month of ct scan, my tumor shrunk. Now my tumor is stablilized and I go for a ct scan every 6 months with the last one in January 2004.
I drink green tea and eat a variety of fruit and vegetable every day. I cut out sugar as much as I can, as sugar feed the tumor. I also reduced my intake of meat, fried food, and junk food
Having a positive attitude and having the lord by my side keep me going. Now I'm entering my 3th year with this cancer and I'm still going strong. I'm a runner and I'm back running 30 plus mile a week.
Hope this help you Tony. You are not alone in figthing this disease.
Andy

jannie
Posts: 1
Joined: Feb 2004

Hi, my name is Jannie and I also have small cell extensive, diagnosed in Oct 2003. I underwent chemo for 4 out of 6 scheduled rounds. After the 4 rounds PET scan and bone marrow biopsy show no signs of cancer. My doctor is suggesting profylactic cranial radiation. Anyone familiar with this?

nicholesmom
Posts: 17
Joined: Jan 2004

Jannie did you have the cranial radiation? My mother had it and I am curious to see if your side effects were the same.

Take care!
Kim

nicholesmom
Posts: 17
Joined: Jan 2004

Hi Andy,

Your story is amazing. The tumor is still there and this drug keeps it from spreading is that right? Thank God for you!!! My Mother has small cell cancer and has completed the treatments but does not get up and move, she does a few exercises here and there, (my Dad says everyday) but I am afraid that if she doesn't get up and move, she will not be strong enought to fight this off if it tries to come back. She cannot eat because her throat is messed up they are going to strech it again next week. I am really afraid that if she doesn't eat (real food - not ensure) and force herself to move, that she will not be able to fight it off anymore and it will take over. My Father says every day that "oh mom isn't doing well today," I go crazy and say then take her to the doctor do something and he then gets mad at me saying that he doesn't know what I want to hear. I want to hear that she is better or something, my Father has babied her to the point that she could not fight a fly and we are supposed to rest assured that she will fight cancer.

Anyway, please tell me of your story, did you get the point that you didn't want to move? Do you think that your diet and that exercise help? Has your doctor told you those things?

Thank you.

Kim

AuthorUnknown
Posts: 1564
Joined: May 2006

Hi Andy,
I also have an 8cm by 7cm right lung tumor diagnosed 3/03. I started with gemzar cisplatin hemo, and had the lung collapse. After six weeks restarted chemo and finished 6 sessions then caught pneumonia with effusion? in the lung. Required visits to remove fluid from the lung because of the difficulty breathing. When better, went on Taxol carboplatin for 8 sessions, just finished. I am interested in where you found out about the clinical trial for the vincristine sulfate. Also where did you get your diet information. I was stage as IIIA, and the tumor is resilient so I would like to try a new approach.
Hope you continue on your great recovery.
Bill

nicholesmom
Posts: 17
Joined: Jan 2004

Hi Andy!!!

I remembered your story and how remarkable it was so when my Mother was told last week that the cancer had returned I went searching for you. How are you doing? I am going to show this to my Mother's doctor. If you have time, could you please tell me more?

Thank you very much.

nicholesmom
Posts: 17
Joined: Jan 2004

Hi, my name is Kim and my Mother was diagnosed in September with Small Cell Lung Cancer and underwent both Chemo and radition. I am happy to say today that she is cancer free. However, she is very skinny, cannot swallow and sometimes is very confused. My father claims that it is the brain radition and that it will go away, I am curios did any of you have this problem?

She is going to rehabilitation because she has lost all most all muscle mass, she cannot walk from the chair to the couch by herself. Is this from a lack of trying? I want to be sympothetic but sometimes I wonder is it because we are not pushing her hard enough? It seems to me that she is giving up - she doesn't want to try - and my Father doesn't seem to want her to. Has anyone suffered from the weakness, and lack of desire? Please advise, and thank you for listening.

twheeler
Posts: 5
Joined: Apr 2004

Boy was I relieved to read your message. My mother is very weak. The doctors say she has LEMS disease (LAM Eaton Myasthenic Syndrome). This is associated with small cell lung cancer. We battle with my father continuosly about not pushing her. She has completed Chemo, which we didn't even think should would make it through. Now we're working on building her stength back and confidence. I've watched an independent woman become so depended on others, it scares me if she'll ever get back to her old self. My father does everything for her. After 2 months she can now walk with a walker, but cannot be by herself. My mom was sick for a year before they determined she had small cell lung cancer and LEMS. I'm looking for others who may have LEMS. It won't help to nag your mother, but don't be too sympatheic also. Give her the choice to work or not. If she thinks it's too hard, tell her it is, but everyday it'll get a little easier.

nicholesmom
Posts: 17
Joined: Jan 2004

Jane Ellen,

My Mother also 55 was diagnosed this year with small cell lung cancer. We were originally told that it was Lupus and during the course of checking for any damage Lupus may have done, it was determined that it was lung cancer. When she was originally diagnosed they told us it would be approximately nine months. Since then she has undergone 5 months of treatment and has literally had the life beat out of her. Today, her cancer is gone and is trying to get better. I firmly believe that if your Mother and her family keep the faith and don't give up something good will come out of it. We did not let my Mother get discouraged and would not let her give up. I began soliciting prayers from anyplace I could get them. I had prayer meetings in my house I did everything I could think of to get any help I could get. My family thought I was losing my mind. I really didn't have a choice I had to try, my Mother was and always will be my best friend and I am eternally grateful that we have reached this point because without her I am not sure who or what I am.

Keep your hopes up and keep her strong, it can only help in the long run.

nicholesmom
Posts: 17
Joined: Jan 2004

Jane Ellen,

My Mother also 55 was diagnosed this year with small cell lung cancer. We were originally told that it was Lupus and during the course of checking for any damage Lupus may have done, it was determined that it was lung cancer. When she was originally diagnosed they told us it would be approximately nine months. Since then she has undergone 5 months of treatment and has literally had the life beat out of her. Today, her cancer is gone and is trying to get better. I firmly believe that if your Mother and her family keep the faith and don't give up something good will come out of it. We did not let my Mother get discouraged and would not let her give up. I began soliciting prayers from anyplace I could get them. I had prayer meetings in my house I did everything I could think of to get any help I could get. My family thought I was losing my mind. I really didn't have a choice I had to try, my Mother was and always will be my best friend and I am eternally grateful that we have reached this point because without her I am not sure who or what I am.

Keep your hopes up and keep her strong, it can only help in the long run.

CDietrich
Posts: 1
Joined: Mar 2004

Hello! My husband is 55 years old. And in June of 2003 we were told that he has small cell lung cancer also. We have been through all the treatments that his doctors wanted him to go through. He still has to go ever now and then for CT Scans and to talk to the doctors. We are just trying to live one day at a time. The doctors are not sure at this time how much longer he will live. I am afraid of what may happen to him each and everyday. But I love him more and more everyday that he is here with me. And I chearish each and everyday that we have together.I would like to have someone the talk to at times. Here is my e-mail address: CarolDietrich_208@hotmail.com E-mail me and we will talk sometimes. That is if you would like. I hope to hear from you or anyone else in the near future. Thanks.

nicholesmom
Posts: 17
Joined: Jan 2004

Hi Carol, my name is Kim, it was determined in Sept of 2003 that my Mother had small cell cancer. Were your Husband's treatments successful? I know it is hard to look at, because I have a hard time with that myself, and to never know from day to day, it seems that feeling doesn't go away, but it sounds like you are doing the right thing. Take care and let me know what happens. kaallen123@aol.com or Kaallen123@yahoo.com.

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