neuroendocrine small cell carcenoma
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My deepest condolence Jo-Annjoann p said:Lost the Battle
It is with the deepest of regret's that I announce the passing of my husband, Frank Schumell, who lost his 11 month battle with Extrapulmonary Small Cell Poorly Differentiated Neuroendocrine Carconid. He went peacefully, at home with my children holding his hands, my cheek next to his, and his puppies by his side!!! He did not suffer, no pain at all!!! To all of you I say, FIGHT ON!!!!
God Bless,
Jo-Ann
I am so sorry to hear that Frank lost the battle with this monster. I have from the start of my diagnose with this cancer disease followed you and Soozes battles with and for your husbonds and I am so sorry for your lost.
God Bless you and hugs, good wishes and warm toughts from Oslo.
Anne Lene
I will fight on and will try to come in here in this page app. once a mounth in the future (so you know I am alive or not).
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STILL FIGHTING!! CT Results!Sooze3821 said:I am sad
When we went to the doctor for our 2 treatment of the new medicine they told us his WBC and platelets were too low. They sent him home with me after getting magnesium and iron. He is weak because of the low WBC, but they gave him pednizone (?) and it has given him some energy. He is unable to lay down flat because of where the pain is, it makes it worse. He has been sleeping on the couch, proped up. They have him on pain patches Fentanyl 50 and if he does anything, like walking very far he has to take a Norco as well. He hopes to go back to work on Tuesday, we'll see.
What makes me sad is when we see the RN, as opposed to the Onocolgist, she always reminds us that small cell is incurable. Last time she said we might want to start thinking about Hospice. I'm sorry but is she F'n NUTS!! We intend to fight until there is nothing left! I don't want to see her anymore, she has been a complete downer from the beginning. Almost everytime we see her she makes some remark.
We have ordered some Graviola and we will see if it has any effect.
Please keep us posted about Frank. Don't worry until you have good reason. I pray that his pain is not related to cancer. I'm sorry to hear about his toothache, I had one like that several years ago, it was so bad my face sagged.
Love and prayers for us all, please stop this monster...
We discussed the situation with our Doctor and his nurse. There will be no more talk of giving up! Michael's problem with cancer is complicated with a destroyed disk in his back. Strangly enough the pain patches and Norco has no effect on that pain. The pain is severe and causes shortness of breath if he walks very far. Fatigue is a whole other issue. Some is caused by the pain, some is caused by the drugs. He was recently put on Ritalin and no longer nods off during the day. He has expresssed to me that he feels more like doing things. I recently went back to work and my hours are horrible. This causes problems because I am not available to Michael when he should be walking. Excercise is crucial! We are considering buying a treadmill so he can keep moving.
After being on Gemzar for 6 weeks, Michael had a CT on Tuesday. They called today to tell us the tumors has shrunk by 50%!!!! Don't forget, Michael is also taking Graviola. We don't know if it was the Gemzar of the Graviola, or maybe a combination of the two, but we aren't changing anything for the time beng. We are very happy with the results!!! It has been 10 months since the diagnosis, and we are postive and hopeful.
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Joann Pjoann p said:Lost the Battle
It is with the deepest of regret's that I announce the passing of my husband, Frank Schumell, who lost his 11 month battle with Extrapulmonary Small Cell Poorly Differentiated Neuroendocrine Carconid. He went peacefully, at home with my children holding his hands, my cheek next to his, and his puppies by his side!!! He did not suffer, no pain at all!!! To all of you I say, FIGHT ON!!!!
God Bless,
Jo-Ann
Please accept my deepest sympathy. I just saw your post. You and your family are in my prayers. Your husband was so lucky to have a wife like you to fight with him. God Bless You, always.
Mary0 -
Good and keep going in that directionSooze3821 said:STILL FIGHTING!! CT Results!
We discussed the situation with our Doctor and his nurse. There will be no more talk of giving up! Michael's problem with cancer is complicated with a destroyed disk in his back. Strangly enough the pain patches and Norco has no effect on that pain. The pain is severe and causes shortness of breath if he walks very far. Fatigue is a whole other issue. Some is caused by the pain, some is caused by the drugs. He was recently put on Ritalin and no longer nods off during the day. He has expresssed to me that he feels more like doing things. I recently went back to work and my hours are horrible. This causes problems because I am not available to Michael when he should be walking. Excercise is crucial! We are considering buying a treadmill so he can keep moving.
After being on Gemzar for 6 weeks, Michael had a CT on Tuesday. They called today to tell us the tumors has shrunk by 50%!!!! Don't forget, Michael is also taking Graviola. We don't know if it was the Gemzar of the Graviola, or maybe a combination of the two, but we aren't changing anything for the time beng. We are very happy with the results!!! It has been 10 months since the diagnosis, and we are postive and hopeful.
Hi Sooze Keep going in that direction ;-) I shall have a new PET/CT scan at Wedensday this week and the results will arrive next week. I went to my private Dr. today and she couldt not belive my results from January.
I actually does not knew how many tumors I had before today, but the chemo has made 13 of 16 tumors endclosed and the three others left is with minimal activity. So in the moment the doctors dont know what is going to happend. In the moment I will have a new PET/CT app. every 8 weeks to following the situation.
And tumors scrunk by 50% is a good signal, and as I said before when it is comes to cancer nobody know for shore ;-) My doctor said today that she would never after seeing my results ever come up with a prognosis for any patient of her.... In my case she have never done, but the first local hospital did (they had wrong)!
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Good and keep going in that directionSooze3821 said:STILL FIGHTING!! CT Results!
We discussed the situation with our Doctor and his nurse. There will be no more talk of giving up! Michael's problem with cancer is complicated with a destroyed disk in his back. Strangly enough the pain patches and Norco has no effect on that pain. The pain is severe and causes shortness of breath if he walks very far. Fatigue is a whole other issue. Some is caused by the pain, some is caused by the drugs. He was recently put on Ritalin and no longer nods off during the day. He has expresssed to me that he feels more like doing things. I recently went back to work and my hours are horrible. This causes problems because I am not available to Michael when he should be walking. Excercise is crucial! We are considering buying a treadmill so he can keep moving.
After being on Gemzar for 6 weeks, Michael had a CT on Tuesday. They called today to tell us the tumors has shrunk by 50%!!!! Don't forget, Michael is also taking Graviola. We don't know if it was the Gemzar of the Graviola, or maybe a combination of the two, but we aren't changing anything for the time beng. We are very happy with the results!!! It has been 10 months since the diagnosis, and we are postive and hopeful.
Hi Sooze Keep going in that direction ;-) I shall have a new PET/CT scan at Wedensday this week and the results will arrive next week. I went to my private Dr. today and she couldt not belive my results from January.
I actually does not knew how many tumors I had before today, but the chemo has made 13 of 16 tumors endclosed and the three others left is with minimal activity. So in the moment the doctors dont know what is going to happend. In the moment I will have a new PET/CT app. every 8 weeks to following the situation.
And tumors scrunk by 50% is a good signal, and as I said before when it is comes to cancer nobody know for shore ;-) My doctor said today that she would never after seeing my results ever come up with a prognosis for any patient of her.... In my case she have never done, but the first local hospital did (they had wrong)!
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\Sooze3821 said:STILL FIGHTING!! CT Results!
We discussed the situation with our Doctor and his nurse. There will be no more talk of giving up! Michael's problem with cancer is complicated with a destroyed disk in his back. Strangly enough the pain patches and Norco has no effect on that pain. The pain is severe and causes shortness of breath if he walks very far. Fatigue is a whole other issue. Some is caused by the pain, some is caused by the drugs. He was recently put on Ritalin and no longer nods off during the day. He has expresssed to me that he feels more like doing things. I recently went back to work and my hours are horrible. This causes problems because I am not available to Michael when he should be walking. Excercise is crucial! We are considering buying a treadmill so he can keep moving.
After being on Gemzar for 6 weeks, Michael had a CT on Tuesday. They called today to tell us the tumors has shrunk by 50%!!!! Don't forget, Michael is also taking Graviola. We don't know if it was the Gemzar of the Graviola, or maybe a combination of the two, but we aren't changing anything for the time beng. We are very happy with the results!!! It has been 10 months since the diagnosis, and we are postive and hopeful.
\
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I see you are a fighter too!AnneLene said:Good and keep going in that direction
Hi Sooze Keep going in that direction ;-) I shall have a new PET/CT scan at Wedensday this week and the results will arrive next week. I went to my private Dr. today and she couldt not belive my results from January.
I actually does not knew how many tumors I had before today, but the chemo has made 13 of 16 tumors endclosed and the three others left is with minimal activity. So in the moment the doctors dont know what is going to happend. In the moment I will have a new PET/CT app. every 8 weeks to following the situation.
And tumors scrunk by 50% is a good signal, and as I said before when it is comes to cancer nobody know for shore ;-) My doctor said today that she would never after seeing my results ever come up with a prognosis for any patient of her.... In my case she have never done, but the first local hospital did (they had wrong)!
I think your news is fantastic! Please let us know the results of your new Pet/CT scan! We are still hopeful and positive and you should be too!
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Hello
Dear Alisa, I am writting to to let you know that my niece was just diagnosed with this Neuroendocrine Small cell carcenoma an large cell, she is only 13 yrs old. We are still trying to learn all we can about this type of cancer. She is going in for her second surgery the 18th of March. They found her tumor on her right ovary an removed most of it, they found the large cell on her other ovary an just removed the two small tumors they found. On the 18th they plan on doing a complete hysterectomy on her, also to remove her lymph nodes an take biopsy of her liver an kidneys, I hope an pray for you an your family that you beat this awful cancer, It is so rare that its so hard to find anyone else with this type, I just wanted you know that you are not alone an my little niece is going to be fighting this as well. She has a long road ahead of her.
Remain positive an be strong you can win this fight.
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Hello
Dear Alisa, I am writting to to let you know that my niece was just diagnosed with this Neuroendocrine Small cell carcenoma an large cell, she is only 13 yrs old. We are still trying to learn all we can about this type of cancer. She is going in for her second surgery the 18th of March. They found her tumor on her right ovary an removed most of it, they found the large cell on her other ovary an just removed the two small tumors they found. On the 18th they plan on doing a complete hysterectomy on her, also to remove her lymph nodes an take biopsy of her liver an kidneys, I hope an pray for you an your family that you beat this awful cancer, It is so rare that its so hard to find anyone else with this type, I just wanted you know that you are not alone an my little niece is going to be fighting this as well. She has a long road ahead of her.
Remain positive an be strong you can win this fight.
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HiAnneLene said:Good and keep going in that direction
Hi Sooze Keep going in that direction ;-) I shall have a new PET/CT scan at Wedensday this week and the results will arrive next week. I went to my private Dr. today and she couldt not belive my results from January.
I actually does not knew how many tumors I had before today, but the chemo has made 13 of 16 tumors endclosed and the three others left is with minimal activity. So in the moment the doctors dont know what is going to happend. In the moment I will have a new PET/CT app. every 8 weeks to following the situation.
And tumors scrunk by 50% is a good signal, and as I said before when it is comes to cancer nobody know for shore ;-) My doctor said today that she would never after seeing my results ever come up with a prognosis for any patient of her.... In my case she have never done, but the first local hospital did (they had wrong)!
I just wanted to say hi and hope that all is well!!! I am coping, day by day, with the passingof Frank as best as I can, some day's are harder than other's, but I know that he is in a better play and keeping an eye on us!!! Continue to fight on, along with Michael, sooze and others in frank's memory!!!
Love to you,
Jo
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Small Cell Carcinoma in liver, gall bladder, bones and brainSooze3821 said:Hi Mary!
One thing I have learned is that there are almost no two cases alike. They can be similar. The differences in treatment amazes me. I find it hard to believe they are saying there is no chemo treatment for you. I would get a second opinion.
Michael was not involved in a trial, it was common treatment for his type of cancer. The grant was for a limited amount of services but everything helps. I don't have this information at my finger tips but I will look it up and get back to you. As for SSI, we were denied because I made $8.00 too much for the program. Can you believe it? Michael will start receiving SSA next month. This will help a lot. All you can do is apply and fill out the mounds of paper worth and hope for the best. It's been a few months since I did it, but I believe I started the process online. The nice part is Michael is allowed to work at the same time. (As long as he feels like it)
Insurance is the biggest issue. I am unemployed at the moment, so I don't have insurance. Michael is continuing to work as much as he can to save his insurance until we figure something else out. Even if you are on SSA, you are not eligible for Medicaid for two years. What they expect you to do for two years , I have no idea...
I hope this information helps. I have started a FaceBook page
https://www.facebook.com/groups/461366300575473/
I started it for us to save information on but I think we could all benefit if we added information we found. You are welcome to join.
I have you all in my prayers!I think we have similar cancers. I have read some of yout entries. I have done etoposide, carboplaten, whole brain radiation (with dexo) and not Topotecan. I am a 49 year old guy in pretty dood shape but I also had incredible nausea. They gave me two nausea meds until I asked for appetite medicine (because I was losing so much weight)and it has made a world of difference. The drug is Megase.
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Not sure if you were speaking to me.tpalmer64 said:Small Cell Carcinoma in liver, gall bladder, bones and brain
I think we have similar cancers. I have read some of yout entries. I have done etoposide, carboplaten, whole brain radiation (with dexo) and not Topotecan. I am a 49 year old guy in pretty dood shape but I also had incredible nausea. They gave me two nausea meds until I asked for appetite medicine (because I was losing so much weight)and it has made a world of difference. The drug is Megase.
About your appetite, on the days when you can't keep down anything else, you should try Boost or Carnation Instant Breakfast. My hubby would rather do that than take the medicine to increase appetite. LOL The steroids were giving him incredible hiccups so he tried not taking them and the nausea came on with a vengence! The vomiting caused his pain level to rise because it increased the infammation where the liver tumors are. Now he is sorry he didn't take the steroid.
This May it will be a year since he was diagnosed. He is heavily fatigued from the meds, and the pain is controlled most of the time. He still enjoys life as much as possible. Short walks, dinner out occasionally, a few days of work here and there. We are staying positive, and cherish each day we are given, I won't waste it with worry!
Please feel to join our Face Book Page: https://www.facebook.com/groups/461366300575473/
There is a lot of good information!0 -
Neuroendocrine Small Cell Cervical Cancer
Hello all!! I just wanted to write and give a little bit of hope. I was diagnosed back in September 2010 with this cancer and am still here!! I go for my 2 1/2 year scan in June and am so very nervous!!! But I have hope all will be okay.
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Coledee,Coledee said:Hello
Dear Alisa, I am writting to to let you know that my niece was just diagnosed with this Neuroendocrine Small cell carcenoma an large cell, she is only 13 yrs old. We are still trying to learn all we can about this type of cancer. She is going in for her second surgery the 18th of March. They found her tumor on her right ovary an removed most of it, they found the large cell on her other ovary an just removed the two small tumors they found. On the 18th they plan on doing a complete hysterectomy on her, also to remove her lymph nodes an take biopsy of her liver an kidneys, I hope an pray for you an your family that you beat this awful cancer, It is so rare that its so hard to find anyone else with this type, I just wanted you know that you are not alone an my little niece is going to be fighting this as well. She has a long road ahead of her.
Remain positive an be strong you can win this fight.
I'd like to knowColedee,
I'd like to know more about your niece, can you e-mail me? blackleather834@gmail.com
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Hope here too! I washereformygirls said:Neuroendocrine Small Cell Cervical Cancer
Hello all!! I just wanted to write and give a little bit of hope. I was diagnosed back in September 2010 with this cancer and am still here!! I go for my 2 1/2 year scan in June and am so very nervous!!! But I have hope all will be okay.
Hope here too! I was diagnosed with a NET attached to the junction of my stomach and esophagus in June 2012. I was treated at MSKCC by Dr. Ilson (0ncologist) and Dr. Wu (radiation expert). I am cancer free now for today. I cant say enough good things abot the entire staff at MSKCC. I wish everyone good luck and doing the best I can to spreasd mine around.
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Update?Rich94061 said:Small call
I just joined this cancer site yesterday and saw your 2007 post under rare cancers. I'm not sure if you can see my profile but if you can I've listed the treatments vie taken for this rare cancers. I have a rare form of prostate cancer which they believe was a mutation of small cell cancer which I have in almost every organ of my body and bones. I'm currently on my 7th chemo series ( 3 times in one week followed by 2 weeks off).
I pray you are still a survivor. At one point I was told I only had one or two weeks to live if the chemo did not work.....fortunately it worked and my tumors went away within a week. I'm told I'll always have this cancer and will have good and bad times.
I wish you the very best and pray this emai finds you .......healthy
Regards
Rich94061My mother has been told the same thing from her doctors. She has neuroendocrine carcinoma from an Unknown primary metastized in her liver. She has been told although they are treating her with chemo, it will never go away. I was looking for some hope.
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Help?tamil said:I have small cell neuroendocrine
They aren't sure where the primary is anymore, they used to say primary colon, my octreoscan came back faint positive but dr has now pulled me off of sandostatin since i have progression. My cancer is in my liver and my omentum. Right nowI am frustrated as they are telling me no to sirspheres. They have me on gemzar chemo now after progressing after 5 months on carboplatinum/etoposide. I am going to ask about nexavar. I am not sure where to look for answers. Have looked at carcinoid.org found a specialist but still feel I am not being treated correctly and all I can do is pray that I am. Since this is so rare, its hard to shop for another drHi, my mother has neuroendocrine carcinoma metas tied in her liver. She has had 8 series of carboplatin and etoposide so Farr and not what they are doing next. Said surgery is not an option. Any one else's stories would be helpful.
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Any updates?jports1049 said:Here for my mom
Hi everybody, My mother was recently diagnosed with small cell neuroendocrine cancer that primarily showed up in her colon. It has spread throughout her liver and there are two lesions on her lung as well. She is starting Chemo today. She has had the original tumor in her colon removed - it was 8 inches! The liver is inoperable, according to our doctor. She is currently seeing a doctor at the Leever Center in waterbury, ct, but we are also getting a second opinion through Dana Farber in Boston. We also will be working with a nutritionist too.
I am wondering if anybody knows of any educational resources about this type of cancer. I am having a hard time finding a lot of information on it. I would like to do my research to make sure we have all of our bases covered. Any advice would be great. Also any advice on how I can help my mom stay positive and keep going is very much appreciated.My mother has the tumor in her lungs as Well, said to be inoperable. Wanted to see what your second opiniDadaism. She has done 8 rounds of chemo Thus far.
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Any updates for 2013?Sooze3821 said:I'll be an email away
Jo-Ann,
Michael prefers Muscle Milk, but he eats like a horse, his appetite is good! He is eating all the stuff he felt guilty about before, I'm a little jealous.
He still is losing weight though.
I have a number for Co-Pay Relief Program, for anyone who is taking Neulasta. If you call this number and tell them your husband has Chemo Induced Neutropenia,(Weakness from Neulasta) they will do an application to award him $2000.00. The program is yearly and it ends in July so after July you can apply for another $2000.00. The number is 866-512-3861. They are in Virginia and they open 8:30 Eastern time. Best to call first thing in the morning. I'm about to call.
Sooze
Update: I called and they told me to fill out the application online at www.copays.org. and look for online services, when I submit the form it goes directly to them for consideration. Good Luck!My mother has stage 4 neuroendocrine carcinoma. It is from an unknown primary but metastized in her liver. 8 rounds of chemo so far, after 4 rounds the tumor had decreased front 24 cm to 8cm. We are waiting for the next pcars can but have been told not to NBC too hopeful kit will disappear. Any info will help.
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Update for Michael
To give a quick summary:
Michael was diagnosed with extra pulmonary small cell cancer in May of 2012. This cancer acts similar to lung cancer, and is treated with many lung cancer drugs. Michael’s cancer started in his stomach and metastasized to his liver. The first round of drugs cleared the stomach of cancer and it never returned. (Cisplatin and etoposide) The liver cancer was almost destroyed about November of 2012 and then came back with a vengeance. (Gemzar) This keep him stable for a few months then, although the cancer stayed in the liver exclusively it grew and they switched him to (Topotecan). When the cancer started to grow again, our doctor suggested clinical trials. Michael had to be free of chemo for a month and we waited for the insurance company to decide whether they would pay for treatments. They didn’t and Michael’s liver was starting to fail. (Taxol) After the first CT Scan on this drug it had “mixed” results. Some bigger some smaller. They said the larger ones could be swelling and not growth. This is where we are now. He is “stable” and after 15 months since diagnosis his biggest complaints are weakness and some issues with the Fentanyl pain patches, they discontinued the ones that worked the best. He still goes to work occasionally and we enjoy going out to dinner or a movie when possible. The liver is still the only organ that has cancer and even though it hasn’t moved to another area in his body in all this time, there is no chance of a liver transplant. We are hoping at some point they will take a biopsy of the liver. In the beginning they only took a sample from the stomach. We aren’t convinced it’s the same type of cancer. We continue to receive chemo and also back it up with smart diet choices and a supplement named Graviola. There is already a plan in place to switch to Taxotere if need be after the next CT scan at the end of this month.
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