I am looking for people with extensive small cell lung cancer that
would share the chemo drugs they have been on, along with the success or non-success of these drugs. My husband was just diagnosed late September 2006.
He is currently doing chemo with Carboplatin and Epotoside. How long did your drugs work and how long before your cancer reappeared?

Thank you,
Robin

Robin-
My husband was also diagnosed with SCLC in late October. He was found to already have brain metastases, and started whole brain radiation in early December. We see the oncologist in early January and will learn what they propose for chemo. They'll probably wait another couple of weeks to start that regimen. My husband also had a successful heart transplant 11 years ago, and they'll have to markedly reduce the antirejections drugs before they put chemo into the mix. He had an upper body CT today, so we also are waiting to hear if there are other sites of mets.

How is your husband doing on the chemo you mentioned? Any sense yet of how it's working? How about side effects, and how are the two of you managing them?

I have just come to this site, and will check in reguarly now that I know it's here.

Best wishes to you both,
Karen

Karen Wrote:
-------------------------------------------------------
> Robin-
> My husband was also diagnosed with SCLC in late
> October. He was found to already have brain
> metastases, and started whole brain radiation in
> early December. We see the oncologist in early
> January and will learn what they propose for
> chemo. They'll probably wait another couple of
> weeks to start that regimen. My husband also had
> a successful heart transplant 11 years ago, and
> they'll have to markedly reduce the antirejections
> drugs before they put chemo into the mix. He had
> an upper body CT today, so we also are waiting to
> hear if there are other sites of mets.
>
> How is your husband doing on the chemo you
> mentioned? Any sense yet of how it's working?
> How about side effects, and how are the two of you
> managing them?
>
> I have just come to this site, and will check in
> reguarly now that I know it's here.
>
> Best wishes to you both,
> Karen

My dad was diagnosed with extensive SCLC in March of 2006. He did 9 rounds of chemo, which consisted of Cisplatin and Epotoside. The first round was the worse but each one got easier. In November he developed the side effect of peripheral neuropathy and his doctor said, no more chemo. It was amazing how much better he felt in Nov. & Dec. without the "dragging down of the chemo". We had scans on Jan.9th, All cancer was gone in the liver and brain but had grown 1/2 inch in the lung. We are now trying the epotoside pill. The plan is to do 2 rounds of the pill, then redo scans and see what the cancer is doing.
When we first started, his doctor said I can give you 6, 7, 8 months and it has now almost been a year. A WONDERFUL year!!!!! My advice is take the chemo as long as your husband tolerates it without compromising his quality of life.
Don't waste a minute. Enjoy the time together.

Robin,

I was diagnosed in March w/small lung cancer. I'm currently doing chemo too! I have 4 rounds of chemo to do and than a CT scan will check on the development of the tumor.

Have faith and everything will be fine with your husband. Please keep me in touch with his development on his treatments.

my mom is 71 and was diagnosed w/ small cell lung cancer on nov 1st,2007.they did chemo right away because we were already in the hospital. it seems that the tumor (which was 5inches) was taking away her sodium and that made her very weak and lethargic. prior to that she went to the doc cause she was coughing and shortness of breath. they thought is was allergies. finally in the hospital the did a chest x-ray and found the cancer. she was doing cisplat and vp16. but we ended up in the hospital every week because of the sodium level so the doc switched to carboplat and vp16 and that seemed to work. because of the sodium she can only have 1000cc of fluid a day. we finished her 6 round of chemo@the end of feb. my sister and i did not tell our mom that this is not curable and that she has limited time. she has lived w/ my sister and really has no loose ends to take care of. 3 weeks after her last chemo we went on vacation and have been enjoying the time that we have. she did ask the doc last visit what do we do now, i really don't want to take a break i'd rather get this over with. he did tell her this is not curable. it was like a ton of bricks hit her. but she still did not understand completely cause when the nurse was taking her blood she looked at her and said, "becky do you know that i'm going to have to do this the rest of my life" my sister and i (we are in our 30s) have always been so close to our mom she is so young even though she is 71 people always think she is in her 50s. i think once you hit 70 doctors don't attack the cancer as hard because of the age. so now we wait. if anyone knows what will happen next or their story is similar please let me know. my heart goes out to each and every person dealing with this.

Michelle,
I can definitely understand where you are coming from. My father (age 65) was diagnosed with SCLC in December 2006. The cancer maetatisized to his media sternum,liver and brain. After whole brain radiation to attempt to rid the over 40 mets in his brain, chemo began. This treatment made him so weak. We found that when he could eat, Scandi shakes (600 calorie weight gain shakes) helped him keep on a little weight. With the chemo., the masses in his body shrank enormously, which raised our hopes. We then received the news only 2 weeks ago that his aggressive cancer is back and he is uncurable. I know the pain you and your sister must feel. We all go through the roller coaster of emotions. Please know that there are people out there like your family and mine. It is such a struggle, but reminds us to never take a single day for granted. Best wishes to you and your family.
Heather

Michelle,
I can definitely understand where you are coming from. My father (age 65) was diagnosed with SCLC in December 2006. The cancer maetatisized to his media sternum,liver and brain. After whole brain radiation to attempt to rid the over 40 mets in his brain, chemo began. This treatment made him so weak. We found that when he could eat, Scandi shakes (600 calorie weight gain shakes) helped him keep on a little weight. With the chemo., the masses in his body shrank enormously, which raised our hopes. We then received the news only 2 weeks ago that his aggressive cancer is back and he is uncurable. I know the pain you and your sister must feel. We all go through the roller coaster of emotions. Please know that there are people out there like your family and mine. It is such a struggle, but reminds us to never take a single day for granted. Best wishes to you and your family.
Heather

My mom was diagnosed with small cell lung cancer September '06. She went through 6 cycles of chemo, cistplatin and etoposide. The side effects were horrific. She ended up wheelchair bound, she's 50 with no past medical history. She did smoke since she was a teenager. Today she got tatood for radiation. She is walking around fine, but feel extremely tired ALL THE TIME, and has not been eating much lately. The chemotherapy was the toughest part. I have to say she is outliving what the statistics say about this disease. Her tumor was 10 centimeters upper left lung. Chemo shrunk it to 2.5. She starts radiation May 30. Anyway that is my story.

Hi-my Mom was diagnosed in Sept/2006 with Ext Small Cell in liver and adrenal. She did 6 rounds of Carbo/Etoposide-shrunk 90%-started Concurrent radiation 3 weeks-then one brain met found-she is now doing WBR-whole brain radiation. We are hoping that goes away with this treatment. They were very aggressive with my Mom. She is 61-60 when diagnosed and was the picture of health.
Anyone who wants to email me please feel free-I would love to speak to others with going through this.
Dar

My 55 year old husband was diagnosed with Ext/small cell lung cancer in March of 2006. He was put on Cistplatin/Irinotecan for 6 rounds. The tumors shrunk enough they did radiation, and after that he did 6 rounds of Topotecan. The tumors began to grow again after the last round of Topotecan. This past week they have put him on Carbo/Etoposide, and we were told that if this does not work there is nothing else. My husband has never smoked in his life, so it was a shock for us when he was diagnosed with Small cell lung cancer. But we are grateful he doing quite well,it has been 15 months since he was diagnosed with this terrible disease. I understand the roller coaster ride of emotions.
I would be happy to talk with anyone who is also facing this with a loved one.
Linda

My mom was diagnosed late April 2007 with limited (lungs and lymph nodes) small cell lung cancer. She is currently in her second (of 6) cycle of chemo and raditation treatments. The chemo has been very difficult for her. The doctors said that they will not know if the treatments are working until the after the last cycle, which isn't until the end of September.

I am having an extremely difficult time handling all of this. I recently moved away from my family for a new job, and the guilt is overwhelming. I feel helpless being so far away (I'm in TN and my mom is in CT). Thankfully, my entire family is in CT, so my mom has an amazing support system and my father has been extremely strong.

This disease is unforgiving and I truly pray for anyone who has to endure any type of cancer and the treatments that go along with it.

My Dad was diagnosed on Halloween Night 2006 with small cell lung cancer, and that was after he suddenly could not walk and needed immediate surgery because of a tumor found on his spine. After the surgery, he needed to learn how to walk again, as well as try to learn basic movements again. He was making some progress until the chemo started.

The first round of chemo was Carbo/Etoposide, the second round was Gemcitabine, and now we are trying Taxol. The first two rounds were very difficult. But the result was that the tumor was only stabilized. It did not shrink. He went for a more aggressive treatment, and he has been so very sick these last 2 weeks. Only able to get out of bed for a couple hours on some days. Can't eat at all, or drink. He is starting to move around with a walker, but not very well.

His feet and hands are all but numb.

After the 2nd round of chemo, he went to an acupuncturist and actually started getting the feeling back in his feet, but the chemo wiped out any progress.

The cancer is not in his heart, brain or liver.

My question to all of you is, what pain relief are you using? My dad is up to 12 Vicodine in a 24 hour period, and is still having problems.

As with all of you, I too am frantic trying to figure this disease out, since the doctors are so coy with information. Nobody seems to tell us much of anything. Are you having this problem too?

My very best to all of you. I am not ready to say good bye to my dad, and I know you feel the same towards yours.

Chris

My father was diagnosed with extensive SCLC and went for chemotherapy. He did not have many side effects except mouth sores. He took eminen as a drug to prevent side effects. He was diagnosed in Nov. 2006. He went for 5 cycles of the chemo and then in March he was in remission. On Memorial day weekend, he had two seizures and was rushed to the hospital. He had two brain mets that were pretty small about half the size of a pinky nail. Drs. recommended WBR instead of stereotactic radiotherapy because he may have other cells in there that are microscopic. He did 15 days of the radiation. He was fine until the second week and then he started to get tired. He is now finished with all radiation and is very tired. For a 78 year old man he used to be very active and now he is just exhausted after showering and getting dressed. His appetite has diminished and is depressed. Its been two weeks since radiation. I am hoping he will snap out of this in a few weeks because it stinks to see him like this. Iwill keep everyone updated

it is so sad that there are people going through this. my mom is in her 9th month since diagnosed with extensive small cell lung cancer. her hair is growing back and she is pretty active. i feel like we are just waiting for the time when she gets bad. i have heard that it comes on really fast and that is so scary. i feel like the last 3 months of not doing any type of treatment is just a waste. she did ok with chemo and it did shrink the tumor(not all gone but it did shrink) why don't they keep trying? i know my mom is 71 years old but she is so strong and healthy other than her cancer. i feel like the doctor is just giving up. it makes me so made but he says it really won't do anything.

Yeah we are in our 8th month of extensive small lung cancer, on the third month he was in remission and then at six months it went to the brain. I guess when its in the extensive stage it can go in other spots. My father has to go for a CAT scan on Wednesday to see if it went to his liver. He is experiencing some discomfort on his right abdomen. We are hoping that the brain mets are gone we wont know that for another two weeks. They like to wait about a month after radiation because the radiation is still working. Does anyone else before know someone who had WBR, how long are they fatigue for? My dad will be going in his third week on monday and has had itchy skin with hives all over for two weeks now. We have tried every remedy possible. He is going to a neurologist tomorrow to see if its the Keppra or Dilantin that he is taking to prevent seizures is the cause of his hives. Does anyone have any feedback about WBR and brain mets.

Its been a month since WBR and we will redo the MRI. However we did another cat scan and its growing again in his lungs. We are now trying Taxol once a week? I hear the side effects are numbing in feet and hands. Anyone know how effective it is? Does it just prevent it from growing?

I pray your husband fights hard. My Daddy was diagnosed, aged 69, this January, 2007. He has not done well. It is no longer in his chest but moved to his neck area, cervical spine #6. We irradiated it and got it out of there. then 2 weeks later it went to his spinal cord. It is a terrible and aggressive tumor. Right now I am mad mad mad that we cannot get him just 6 weeks or a year to enjoy time with his 6 daughters and son and my mom. I want him to go on a cruise or a trip with my mom. He lost the use of his legs/bladder, so now it has even attacked his dignity. I hate cancer.
God bless everyone of us and our loved ones.

Esther

I pray your husband fights hard. My Daddy was diagnosed, aged 69, this January, 2007. He has not done well. It is no longer in his chest but moved to his neck area, cervical spine #6. We irradiated it and got it out of there. then 2 weeks later it went to his spinal cord. It is a terrible and aggressive tumor. Right now I am mad mad mad that we cannot get him just 6 weeks or a year to enjoy time with his 6 daughters and son and my mom. I want him to go on a cruise or a trip with my mom. He lost the use of his legs/bladder, so now it has even attacked his dignity. I hate cancer.
God bless everyone of us and our loved ones.

Esther

My 57 yr old Mother has recently been diagnosed with Ext Small Cell in her lungs and liver. The Docs have started her on Chemo. She is very Nauseous. The Nausea meds sometimes work. My question is, What will her quality of life be like while on the Chemo and once she leaves the hospital? How can I help her? What will she need?

They don't want to tell her that it's incurable even though it isn't. When she asks me "Do you know something I don't" I reply "no".