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neuroendocrine small cell carcenoma

AlisaD's picture
AlisaD
Posts: 2
Joined: Nov 2007

I am just looking for any survivors of this cancer out there or anyone else dealing with this cancer. Mine presented with a tumor on my cervix. We removed it along with a full hysterectomy and 50 lymph nodes, two of which had cancer. I am now undergoing 6 rounds of chemo (3 days on, 18 days off, 6 times) then I will do radiation. I am also following an organic, mostly raw foods diet along with supplements and herbs provided by an herbalist to help my body tolerate the chemo. I have a young son and am desperate to survive this. I know I am doing all I need to be doing. I am just looking for others out there dealing with this.

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

Last time I had got some bad results from the CT and I was not in a good mood. The Dr. put me true X-ray in November/December as a try to get read of one tumor next to the hearth. So for the first time I got a PET/CT scan in January and since PET/CT is a much better instrument than only CT I thought I would see everything they havent seen before.... scary! The results was fantastic and the tumors are in the moment growing very slowly with very low activity ( Ki 67 was more than 70% orginally from the beginning) and the rest was with 0 activity (three tumors with very, very low activity, the rest is 0 activity - endosed?/closed the tumors for cancer activity). So tell that lovely RN next time that nothing is impossible/incurable.... even not small cells. I am not read of the cancer but atleast it give me a break...... It will be a new PET/CT in the beginning of March and I also know very well about the prognosis... , but you never know what tomorrow brings ;-)

 

Here is the photo from skiing in Oslo ( without co-ordination, balance, numbs under the feet and in addition rheumatism in my knees ( blood poisoning gave me that, but they think it will disappear ), but it was "VERY FUNNY!". I also got some toothache and problems with the eyes, but this thing is easy to fix (not funny, but anyhow curable).

 

' I was scared during last summer and thoughts like this is my last dance and this is my last that, was difficult. You cried in one moment and laught in the next. Life is here today and try to take it back! Love to both of you!

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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.

 

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

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AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

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)!

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

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)!

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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!

joann p
Posts: 50
Joined: Apr 2012

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

Selina1selina
Posts: 1
Joined: Sep 2013

So sorry to have read about your husband.. 

Be strong love and carry on.. 

Take care 

And good luck to everyone else out there fighting cancer.. 

 

My best friend ha been diagnosed with small cell cervical cancer and is currently undergoing chemo..  3 days chemo 14 days off..

Hoor she fights it.. 

Xx

mjordan417
Posts: 1
Joined: Feb 2013

Hello. I just read ur post about ur rare cancer. My dad and uncle have the same cancer. How r doing?

Coledee
Posts: 2
Joined: Mar 2013

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.

Coledee
Posts: 2
Joined: Mar 2013

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.

hereformygirls
Posts: 2
Joined: May 2013

Coledee,

 

I'd like to know more about your niece, can you e-mail me? blackleather834@gmail.com

hereformygirls
Posts: 2
Joined: May 2013

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.

jhtesq's picture
jhtesq
Posts: 9
Joined: Mar 2013

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.

 

 

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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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.

jhtesq's picture
jhtesq
Posts: 9
Joined: Mar 2013

My Net was a small cell carcinoma too.  I wish you and Michael good luck in the future.

jhtesq's picture
jhtesq
Posts: 9
Joined: Mar 2013

Scope on Sept 18.

Pet Scan Oct 7

Dr vist Oct 14

Anxiety !

Kbanks735
Posts: 1
Joined: Aug 2013

My husband's diagnosis is very similar to yours.  He has been through 2 rounds of chemo (carbo and etopocide).  Recent scans have shown no change, so his oncologist is considering other options.  May I ask what your treatment regimen has been?

 

Many thanks.

jhtesq's picture
jhtesq
Posts: 9
Joined: Mar 2013

Hang in there.  I received 4 rounds of carbo and etopside the last two with 28 daily dosages of radiation.

I did well on the carbo and etoposide and had encouraging results after two rounds !

Perhaps your husband will find better results as the treatment continues.

Other oncologist I saw considered cisplatin with etoposide but cisplatin is very toxic and from what my treating oncologist advised should be avoided.

Where is your husband being treated ?

You may contact me at jhtesq@yahoo.com if you would like to.

 

tgarrett
Posts: 4
Joined: Oct 2014

I was diagnosed with this in March 2012.  Mayo operaten three days latter and removed my Cecum, Apendex, 18 inches of my large intestine, 1inch of my small intestine and 24 lymph nodes which 4 were cancerious, . After that I went thru 6 months of cemo.  My alternative treatments are;  Rick Simpson Cannabis oil and Citric acid infusions.

As of today 2 years and 7 mo. after the operation I feel great. (Knock on wood)

Anybody know if anyone has beat this?

 

 

 

 

survivingsu's picture
survivingsu
Posts: 74
Joined: Apr 2013

Hi there,

I had undifferentiated small cell carcinoma of the uterus back in July, 2009.  I went through both chemo and radiation simultaneously, then surgery, then follow-up chemo.  I went back to work in March, 2010, and have been doing fine since.

My very best to you,

Susan

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Michael passed today very peacefully.  He gave it a good fight and I am very proud of this brave husband of mine. 

northa914
Posts: 98
Joined: Mar 2011

I'm so sorry to read about Michael's passing.  Your posts were and still are an inspiration to us to keep fighting.  Take care, you are in my thoughts and prayers.

jhtesq's picture
jhtesq
Posts: 9
Joined: Mar 2013

Sooze,

 

I have no words to ease your unhappiness.  I won' try to make them up.  I feel awful but will remember his courage daily.

 

JT

 

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