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

jmevans

nicholesmom said:

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

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

nicholesmom

mandee33 said:

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

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

AuthorUnknown

AJL said:

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

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

jmevans

nicholesmom said:

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

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!

nicholesmom

AJL said:

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

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.

joniwriter

Looking for positive news about Small Cell Lung Cancer Treatment

My husband Brian went through 6 rounds of Chemotherapy and 30 days - 2X day of Radiation to

the lungs between 9/16 and 1/17.  He was feeling better and doing well until early April when

the cancer returned and spread to his pancreas.  He just started immunotherapy 3 weeks ago

but a new Cat-Scan now shows the cancer has spread even further to his stomach and lymph nodes.

Don't know whether to continue with Immunotherapy or some other treatment or clinical trial.

Look for some hope or alternative treatments.  I'm discouraged to see the last posts here were in 2004.

 

MyJourneywithCancer

joniwriter said:

Looking for positive news about Small Cell Lung Cancer Treatment

My husband Brian went through 6 rounds of Chemotherapy and 30 days - 2X day of Radiation to

the lungs between 9/16 and 1/17.  He was feeling better and doing well until early April when

the cancer returned and spread to his pancreas.  He just started immunotherapy 3 weeks ago

but a new Cat-Scan now shows the cancer has spread even further to his stomach and lymph nodes.

Don't know whether to continue with Immunotherapy or some other treatment or clinical trial.

Look for some hope or alternative treatments.  I'm discouraged to see the last posts here were in 2004.

 

Hello
Hello joniwriter,
I am so sorry to hear about Brian.
Since this thread is inactive for long time, I would post in a new thread.
Has any genetic profiling from biopsy samples done? Alternative treatments could be targeted therapies that are available for mutations in EGFR, ALk, ROS genes, for example, in lung cancer. The mutation load can also throw some light on efficacy of immunotherapy. Best wishes.

Reneeisabella

joniwriter said:

Looking for positive news about Small Cell Lung Cancer Treatment

My husband Brian went through 6 rounds of Chemotherapy and 30 days - 2X day of Radiation to

the lungs between 9/16 and 1/17.  He was feeling better and doing well until early April when

the cancer returned and spread to his pancreas.  He just started immunotherapy 3 weeks ago

but a new Cat-Scan now shows the cancer has spread even further to his stomach and lymph nodes.

Don't know whether to continue with Immunotherapy or some other treatment or clinical trial.

Look for some hope or alternative treatments.  I'm discouraged to see the last posts here were in 2004.

 

I know how you feel....

My fiancee Rick age 58 was diagnosed (small cell lung cancer stage 4) April 24th after having puemonia and all the antibiotics did not get rid of it. Right lung 8cm tumor with two lymph nodes involved and some noted subcarinal. Literally the week next having a PET scan and broncoscopy and being told he has one year to live at most..... I watched the color drain from his face. May 31st he finished his day three of three chemo sessions... now we wait to see if he has the dreaded side effects... and have a follow up June 16th.

I don't know what to expect with all of this ..... how have things been for Brian?

 

How is it currently?

Julez

Reneeisabella said:

I know how you feel....

My fiancee Rick age 58 was diagnosed (small cell lung cancer stage 4) April 24th after having puemonia and all the antibiotics did not get rid of it. Right lung 8cm tumor with two lymph nodes involved and some noted subcarinal. Literally the week next having a PET scan and broncoscopy and being told he has one year to live at most..... I watched the color drain from his face. May 31st he finished his day three of three chemo sessions... now we wait to see if he has the dreaded side effects... and have a follow up June 16th.

I don't know what to expect with all of this ..... how have things been for Brian?

 

How is it currently?

Reneeisbealla I hope you got good news in his folow up my hsband was recently diagoised with small cell its just horrible I feel helpless 

Julez

Reneeisabella said:

I know how you feel....

My fiancee Rick age 58 was diagnosed (small cell lung cancer stage 4) April 24th after having puemonia and all the antibiotics did not get rid of it. Right lung 8cm tumor with two lymph nodes involved and some noted subcarinal. Literally the week next having a PET scan and broncoscopy and being told he has one year to live at most..... I watched the color drain from his face. May 31st he finished his day three of three chemo sessions... now we wait to see if he has the dreaded side effects... and have a follow up June 16th.

I don't know what to expect with all of this ..... how have things been for Brian?

 

How is it currently?

Reneeisbealla I hope you got good news in his folow up my hsband was recently diagoised with small cell its just horrible I feel helpless 

AnnieNMichael

I want to connect with other small cell patients and caregivers.

Hi folks, I just started a new thread for patients and caregivers dealing with small cell lung cancer. 

There are so many questions and I'm hoping we can help each other. The thread is simply called Small Cell Lung Cancer. Since there is precious little information in general and this thread is very old, I thought it would be nice to hopefully get some fresh ideasm thoughts and questions. 

My name is Anne, my husband is Michael and we hope you'll reach out to us. 

Thanks. 

Pampjp

Friend diagnosed recently

Hello, I'm posting to get as much information as I can regarding Stage IV small cell lung cancer and to hear survivor stories.  I have a friend in Maryland that was recently diagnosed and she is very scared.  She is starting chemotherapy this week and I'm conducting research for any ideas and feedback from other patients and survivors.

 

Chuchy

Extensive Small Cell Lung Cancer

Hello! I'm new to this chat.  My mother has recently been dignosed with Extensive Small Cell Lung Cancer! The course of treatment is two rounds of Chemo (3 days straight and the 4th a booster shot.) and wait 21 days and again repeat. she starts second round next week  I've done a whole lot of research about nutrition, alternative medicine and everything else in between.  At first I just couldn't understand why my mother if she was by far the most amazing person (daughter, wife, friend and mother) there was, WHY, WHY?? I felt completely hopeless and visited a few church around town for internal peace. I was falling apart and my mom took the bull by the horn and with a smile said, I got this.  she is so strong.  She started her chemo with out any side effects, only side effect she got was when they gave her the immune shot (her skin was very sensitive and her body ached beyond measure, but that was it.)  I'm hopeful that the second round will be the same.  Things we did to aid her and believe it help her with all the symtoms she never experienced.  Completely chaged her diet, NO SUGAR (sugar feeds cancer) Switched her to all Organics, cut back on dairy and red meat.  We do loads of Salmon, Chicken and some red meat, not much. We've incorporated morning  shakes (Kale, Spinach, Celary, Garlic, Ginger, Turnmeric, Beets, Carrots, green apple, pineapples, Chia seeds, Flaxseed and Moringa powder.  She drinks green tee, ginger tea, and turnmeric tea as well.  Not only did we change her diet, we also went to altermative medicine, she is taking these pills (Transfer factor, 4 pills 4 times a day, these pills boost her immune system by 400% 

https://transferfactor-4-life.com/?utm_source=bing&utm_medium=cpc&utm_campaign=RSL - 4 Life Transfer Factor&utm_term=transfer factor&utm_content=Transfer Factor

And also coming from a Cuban family, in Cuba there is this Scorpion Venum that people travel from all around the world to obtain it, it's said to cure, or debilate Cancer  

https://escozul-cuba.com/

 

My husband's family is from the city where the labs are located and his aunt having brain cancer was also under that treatment (in 21 days her brain cancer went from 5 tumors to just 1 with this venum.) so with out hesitation, we put all her results together and sent over to Cuba, had my aunt translate to spanish, and they took  rsults to the lab to study her case and personalize her venum.  They send it to you directly (all the info is on the website) it has to be refrigerated and they send the specific way to prepare it (has to be deluted with distiled water and always stored in refrigierator.

 

And of course God being the pilot of this journey my mom feel great, has not lost any hair, weight, of taste all her test are perfect till now and continues to thrive and repeat that she will beat this horrible desease.  I really would like to read testimonies of people with this horrible desease and their amazing stories. Also, i will continue to post my mother's journey through this website.

 

God bless.

Chuchy

AnnieNMichael said:

I want to connect with other small cell patients and caregivers.

Hi folks, I just started a new thread for patients and caregivers dealing with small cell lung cancer. 

There are so many questions and I'm hoping we can help each other. The thread is simply called Small Cell Lung Cancer. Since there is precious little information in general and this thread is very old, I thought it would be nice to hopefully get some fresh ideasm thoughts and questions. 

My name is Anne, my husband is Michael and we hope you'll reach out to us. 

Thanks. 

Hi Anne:

Hi Anne:

 

How are you? how is your husband doing?

 

Thanks,

misspolly

stage 4 small cell lung cancer - chemo brain

hi my name is pat, my husband has stage 4 small cell lung cancer, he has gone through 1 year of chemo treatments. i noticed after he started his treatment he started to pull away from me and our family.  he was diagnoised in march of 2017. in november of 2017 i found out that he had been talking to a nurse on line, it turns out she used to be his first girlfriend. she had hunted him down on facebook, and started talking about his cancer.  he started pulling more away and acting weird.  i found out that the nurse specialized in cancer patients, one thing led to another and the next thing i know she shows up to see my husband.  my husband and i did not know about chemo brain, we were told that he could have some depression, which he was, plus his blood pressure had gone way up for him.  he is in the military, he was really strong and had a lot of dignity, and pride. i kept telling the doctor and nurses that something was wrong that we should get off the chemo that it had stopped working for him.  the doctor put him on opdivo, he states he was in a fog and couldn't make discisions correctly, and that he was ashamed of all the lies and deceit. but my problem with the nurse is that she should have known what he was going through and it didn't matter to her, as long as she got what she wanted from him. he seems to be better now, and we are hoping that this drug works. please let me know if anyone else has expierenced any of this strange behaviors. he says he can't remeber everything that he said or did. plus he says he was having trouble making the right decisions. please let me know. thank you

amoore12

There is hope! Mom just celebrated 11 years ALIVE with SSLC

My mom was diagnosed with small-cell lung cancer 11 years ago and she is still alive.  She was given chemo, radiation and prophalactic radiation to the brain back then and nothing since.  The two things that I believe that helped her are, she quit smoking immediately at her diagnosis and we did not let her go without eating, so that she did not lose weight.  I mean we fed her very well.  We kept her away from places with sick people and children for quite a while too.  Since the year after her diagnosis though, she has lived a pretty normal life; not the same life as she had prior to her diagnosis, but normal for her.  

I just wanted to give those with small-cell lung cancer and their families and loved ones a bit of hope because I know when we found out about my mom, we were desparate for something positive.  

ClaCla

misspolly said:

stage 4 small cell lung cancer - chemo brain

hi my name is pat, my husband has stage 4 small cell lung cancer, he has gone through 1 year of chemo treatments. i noticed after he started his treatment he started to pull away from me and our family.  he was diagnoised in march of 2017. in november of 2017 i found out that he had been talking to a nurse on line, it turns out she used to be his first girlfriend. she had hunted him down on facebook, and started talking about his cancer.  he started pulling more away and acting weird.  i found out that the nurse specialized in cancer patients, one thing led to another and the next thing i know she shows up to see my husband.  my husband and i did not know about chemo brain, we were told that he could have some depression, which he was, plus his blood pressure had gone way up for him.  he is in the military, he was really strong and had a lot of dignity, and pride. i kept telling the doctor and nurses that something was wrong that we should get off the chemo that it had stopped working for him.  the doctor put him on opdivo, he states he was in a fog and couldn't make discisions correctly, and that he was ashamed of all the lies and deceit. but my problem with the nurse is that she should have known what he was going through and it didn't matter to her, as long as she got what she wanted from him. he seems to be better now, and we are hoping that this drug works. please let me know if anyone else has expierenced any of this strange behaviors. he says he can't remeber everything that he said or did. plus he says he was having trouble making the right decisions. please let me know. thank you

Misspolly

Misspolly, sorry that happened to you on top of everything else.  Yes chemo brain and even more-so the fear of dying could affect someone's judgment.  The relationship with the ex-girlfriend nurse gave him a diversion, information and support.  but certainly it was very hurtful and confusing to you.  Don't deny your feelings, i.e. don't stuff them like they don't exist.  Get them out on paper; punch pillows; talk to someone.  But don't waste whatever time you have left with him to focus on stupid human inappropriateness and selfishiness.  This is the time to be making plans for what you and your family can be doing together now.  Is he well enough to go on some mini-vacations?  It is a lot easier to walk through cancer when one is focusing on living the best possible today.  God bless.  Wishing you the best.

Rcv1

mandee33 said:

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

My partner was diagnosed with Stage 4 small cell

Ha mandee33, 

I know it's been over a decade since you posted but was wondering if you could give me more information? My partner was diagnosed just abt 2 weeks ago and the Drs. said there's nothing they can do for him. Can I ask where it is your mother was treated and what treatment she received. They give him a few months at most

Anyone who can help. PLEASE 

kristin167

Looking for hope

Hello, my father was diagnosed with extensive stage small cell lung cancer on Sept. 11th. It had spread to his lymph nodes, with a few small tumors near his esophagus. He started chemo and completed 4 cycles (3 rounds each) in Dec. Following a PET scan they said he would need to do radiation on the only spot that didn't shrink (it grew) but other than that everything else had shrunk significantly. It was found no where else in his body (organs, blood, bones, brain, etc.). He was having trouble breathing, very short of breath, and admitted to the hospital. We were told that the tumor was pressing against his esophagus causing him breathing issues. He had to be intubated, and has been in the ICU for 2 weeks. Finally got him up, extubated, and started radiation this week. He's fighting for his life, he's giving it all he has. They will not tell us how much time but they have said he's not going to be cured, which is just awful. They want to start immunotherapy but the hospital will not do it, has to be done on outpatient. Has anyone had any similar story with actual survival? I'm trying to keep hope alive for a bit more time as I'm only 33 and he's only 70 I want more time with my Dad. Thank you for any advice you can offer.