neuroendocrine small cell carcenoma

Rich94061

sknutson said:

Neuroendocrine Small Cell Cancer
AlisaD,
In June, 2009 my doctor removed what he thought was a small fibroid tumor on the outside of my cervix. Two day later he called and told me that the tumor was malignant and immediately referred me to the City of Hope. In July, I had a radical hysterectomy and lymph nodes removed. There were no traces of the cancer in any of the pathology. I too underwent 6 rounds of chemo(3 days on 18 days off, 6x with cysplatin and etopiside). In January the CT scan showed very small nodules in my lungs. In April, the nodules had growth and multiplied (metastasized). Now I am consulting with the City of Hope again, waiting on a biopsy and a treatment plan. I too have 2 young boys (13 & 8). I am determined to survive this through have faith in God and my doctors. I would love to hear how you are doing and what treatments you have gone through. I am very interested in hearing from you. Sincerely, Shawn Knutson, Yorba Linda, CA

Small cell
I just joined this site and was glad to find your post. I've listed all my treatments in my profile but I'm not sure if you can view it. Your experience sounds close to mine. I was first diagnosed with a very rare, incurable, form of prostate cancer and went through robotic surgery, two months of radiation and 6 months of hormone treatment. A week later I was told I had small cell cancer in most every organ and bone in my body. They said they would try a couple types of chemo but didn't have much hope. The first chemo did not work. I took 5 days off to say goodbye to my adult children ( I'm 66. Hrs old) and during this time I developed 1 to 2 tumors per DAY. My oncologist then tried etopiside and within a week the tumors disappeared. I'm now on my 7th series of chemo and just got the news that my markers more than doubled when I thought they would continue dropping to the point of remission. I was told if the etopiside had not worked I would have died within 1 to 2 Weeks.
I'd love to talk to you as I don't understand the impact of my marker rise. Is this normal. I have to retest next week to see if it was a lab error.
Thanks for listening.
Rich94061

Rich94061

sknutson said:

Neuroendocrine Small Cell Cancer
AlisaD,
In June, 2009 my doctor removed what he thought was a small fibroid tumor on the outside of my cervix. Two day later he called and told me that the tumor was malignant and immediately referred me to the City of Hope. In July, I had a radical hysterectomy and lymph nodes removed. There were no traces of the cancer in any of the pathology. I too underwent 6 rounds of chemo(3 days on 18 days off, 6x with cysplatin and etopiside). In January the CT scan showed very small nodules in my lungs. In April, the nodules had growth and multiplied (metastasized). Now I am consulting with the City of Hope again, waiting on a biopsy and a treatment plan. I too have 2 young boys (13 & 8). I am determined to survive this through have faith in God and my doctors. I would love to hear how you are doing and what treatments you have gone through. I am very interested in hearing from you. Sincerely, Shawn Knutson, Yorba Linda, CA

Small cell and sknutson
Shawn
I hope you saw my 1st reply but thought the following might give you a little more info.
Regards
Rich Panelli, redwood city, California

About Rich94061

Joined on
November 13 2010
Most Recent Activity
Sunday 11 14 2010
My cancers
Prostate
My relationship to cancer
I am currently in treatment for cancer
Gender
male
Age Range
60-69
How and when did you learn about your cancer?
I had an annual physical and my primary doctor noticed my psa had risen to 2.7 over 5 years and she referred me to a urologist. The urologist said I had no symptoms of prostate cancer bur to be sure he said he'd do a 14 sample biopsy. The 14 sample all came back malignant, highly aggressive and fast growing. This is extremely rare for prostate cancer. I had robotic surgery on 2/27/2010, followed by 2 months of daily radiation and 6 months of hormone treatment. A week after completing the above the oncologist called me to say I had "small cell" cancer in almost every organ of my body and in my bones. I've had CAT, MRI and PET scans to confirm this diagnosis. I was told this is extremely rare and they only had 2 types of chemo to try. The first chemo did not work and in the following five days I developed 1 to 2 tumors per DAY. The 2nd chemo worked and the tumors disappeared within a week. I asked what would have happened if this 2nd chemo had not worked and was told I would have been dead within one to two weeks. I've now had 6 chemo series and am scheduled for a 7th series after thanksgiving . My series consists of 3 chemo sessions (one 5 HR and two 3 HR sessions).

Does anyone out there have this rare prostate cancer AND small cell cancer?
See the above paragraph. Recently my cancer markers ROSE from 14.7 to 37. My oncologist wants me to retake the test to see if it was a lab error. I have no idea if this is normal or not. I was praying it would go down below 10 because it had been dropping with each chemo treatment. I'm worried the cancer is getting worse although I don't feel bad or feel any tumors.
I've been told my cancer probably started as small cell and mutated to prostate cancer but they aren't positive that was the case.

jports1049

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.

klisesr

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.

It sounds like your mom has
It sounds like your mom has been diagnosed with an aggressive neuroendocrine cancer, and hopefully she is seeing the right specialists. I have a less aggressive form of neuroendocrine cancer - nonetheless, not all physicians are equally skilled at the treatment. I would suggest you visit http://carcinoid.org/ and seek a specialist from the list of physicians provided on their website. Another website is caringforcarcinoid.com.

Best wishes - just being there to support your mom in her journey will mean more than you could ever know.

suzie21

Rich94061 said:

Small cell and sknutson
Shawn
I hope you saw my 1st reply but thought the following might give you a little more info.
Regards
Rich Panelli, redwood city, California

About Rich94061

Joined on
November 13 2010
Most Recent Activity
Sunday 11 14 2010
My cancers
Prostate
My relationship to cancer
I am currently in treatment for cancer
Gender
male
Age Range
60-69
How and when did you learn about your cancer?
I had an annual physical and my primary doctor noticed my psa had risen to 2.7 over 5 years and she referred me to a urologist. The urologist said I had no symptoms of prostate cancer bur to be sure he said he'd do a 14 sample biopsy. The 14 sample all came back malignant, highly aggressive and fast growing. This is extremely rare for prostate cancer. I had robotic surgery on 2/27/2010, followed by 2 months of daily radiation and 6 months of hormone treatment. A week after completing the above the oncologist called me to say I had "small cell" cancer in almost every organ of my body and in my bones. I've had CAT, MRI and PET scans to confirm this diagnosis. I was told this is extremely rare and they only had 2 types of chemo to try. The first chemo did not work and in the following five days I developed 1 to 2 tumors per DAY. The 2nd chemo worked and the tumors disappeared within a week. I asked what would have happened if this 2nd chemo had not worked and was told I would have been dead within one to two weeks. I've now had 6 chemo series and am scheduled for a 7th series after thanksgiving . My series consists of 3 chemo sessions (one 5 HR and two 3 HR sessions).

Does anyone out there have this rare prostate cancer AND small cell cancer?
See the above paragraph. Recently my cancer markers ROSE from 14.7 to 37. My oncologist wants me to retake the test to see if it was a lab error. I have no idea if this is normal or not. I was praying it would go down below 10 because it had been dropping with each chemo treatment. I'm worried the cancer is getting worse although I don't feel bad or feel any tumors.
I've been told my cancer probably started as small cell and mutated to prostate cancer but they aren't positive that was the case.

2nd chemo
Hi Rich,
My dad was diagnosed with small cell of the prostate this past Nov. Unfortunately, his tumor did not respond to first line chemo. The response rates for refractory small cell are usually very poor. What was your 2nd chemo? Its amazing that you had a good response to 2nd line therapy. We're also going to look into low dose temodar--its being used for a phase 2 trial at MSKCC. Ive heard it has minimal side effects from an oncologist there.

CKaye

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.

small cell poorly diff neuroendocrine cancer of pancreas
My son was diagnosed February 2011 with a poorly differentiated, small cell, non-functioning neuroendocrine cancer of the pancreas with spread to liver and supraclavicular lymph nodes. Tumor affected adrenal gland and bowel - inoperable. Treated with etoposide and cisplatin and had remarkable response with over 50% reduction in tumor size. Still has mass in liver and pancreas. Progression free for 6 months after chemo. Was off all pain meds, but is starting to have some pain again. The lack of information is particularly difficult for this rare type of cancer, so I understand your situation.

His oncologist has communicated with Johns Hopkins oncologists. Not sure what we will do when it starts progressing again. Choices seem to be slim. David is on and off Medicaid, which also makes it difficult.

Just trying to take one day at a time and be thankful for that day.

mr steve

CKaye said:

small cell poorly diff neuroendocrine cancer of pancreas
My son was diagnosed February 2011 with a poorly differentiated, small cell, non-functioning neuroendocrine cancer of the pancreas with spread to liver and supraclavicular lymph nodes. Tumor affected adrenal gland and bowel - inoperable. Treated with etoposide and cisplatin and had remarkable response with over 50% reduction in tumor size. Still has mass in liver and pancreas. Progression free for 6 months after chemo. Was off all pain meds, but is starting to have some pain again. The lack of information is particularly difficult for this rare type of cancer, so I understand your situation.

His oncologist has communicated with Johns Hopkins oncologists. Not sure what we will do when it starts progressing again. Choices seem to be slim. David is on and off Medicaid, which also makes it difficult.

Just trying to take one day at a time and be thankful for that day.

C
We have been fighting for 4 years now. good luck

edward 71

My Husband has the same cancer you are talking About
We saw that there was a Rich94061 making comments. Can you please post so we can ask you some questions? Your situation looked so similar to ours. Or anyone else out there that can give us information. My husband was just diagnosed and started chemo this past Monday, March 5, 2012. He has Neuroendocrine small cell cancer with prostate being the primary site, he has it in 4 places in the bone and lymph nodes. He also has an aggressive prostate cancer as well. He is being treated with Etoposide and Carboplatin.3 days on 18 days off of chemo. Thanks!

PamSchroeder

edward 71 said:

My Husband has the same cancer you are talking About
We saw that there was a Rich94061 making comments. Can you please post so we can ask you some questions? Your situation looked so similar to ours. Or anyone else out there that can give us information. My husband was just diagnosed and started chemo this past Monday, March 5, 2012. He has Neuroendocrine small cell cancer with prostate being the primary site, he has it in 4 places in the bone and lymph nodes. He also has an aggressive prostate cancer as well. He is being treated with Etoposide and Carboplatin.3 days on 18 days off of chemo. Thanks!

my husband also has NE prostate cancer
Please email me or message me if possible. My husband is 49 and was diagnosed almost one year ago. he is receiving tx in Houston and we actually go for scans on monday. I have been searching for a year to find another NEProstate cancer patient. My email is bobpamtay@suddenlink.net and would love to talk to you. Thanks
Pam

joann p

CKaye said:

small cell poorly diff neuroendocrine cancer of pancreas
My son was diagnosed February 2011 with a poorly differentiated, small cell, non-functioning neuroendocrine cancer of the pancreas with spread to liver and supraclavicular lymph nodes. Tumor affected adrenal gland and bowel - inoperable. Treated with etoposide and cisplatin and had remarkable response with over 50% reduction in tumor size. Still has mass in liver and pancreas. Progression free for 6 months after chemo. Was off all pain meds, but is starting to have some pain again. The lack of information is particularly difficult for this rare type of cancer, so I understand your situation.

His oncologist has communicated with Johns Hopkins oncologists. Not sure what we will do when it starts progressing again. Choices seem to be slim. David is on and off Medicaid, which also makes it difficult.

Just trying to take one day at a time and be thankful for that day.

Husband Newly Diagnoised
CKaye,
My husband was recently diagnoised with the same thing, but I am not sure it is non-functioning. He went for a follow up colonoscopy and they found a tumore. Got the path report and it was neuroendocrine, small cell, poorly differentiated. So far, it is in his liver and lymph nodes. Last yead he had prostate cancer, and was treated with 44 sessons of intense radiation. We haven't gone to the oncologist yet, that is scehduled for Wed. Any and all inout you have would be of great healp!!!!

joann p

joann p said:

Husband Newly Diagnoised
CKaye,
My husband was recently diagnoised with the same thing, but I am not sure it is non-functioning. He went for a follow up colonoscopy and they found a tumore. Got the path report and it was neuroendocrine, small cell, poorly differentiated. So far, it is in his liver and lymph nodes. Last yead he had prostate cancer, and was treated with 44 sessons of intense radiation. We haven't gone to the oncologist yet, that is scehduled for Wed. Any and all inout you have would be of great healp!!!!

My Husband Also Has NET
Hi all,
My husband, in 2010 had left sided colon cncer, had surgery for same, it was an adneocarcinoma and all the path reports came back negitive. Out oncologist sent his tissue sample out and the Oxytype said that the chance of reoccurence wa 17%. In 2011, he was diagnosed with Prostate CA, had 44 rounds of radiation. PSA level went down. Last week, April 11th, he went for a follow up colonoscpy and was told yet again, he had cancer, but in the cecum. The path report was Neuroendocrine Cancer, small cell, poorly differential. He had a resect last week, removed 2 nodes on his liver. Our surgeon told us that it is in the liver and lymp nodes. I haven't seen the full path report yet. We have had it sent to out oncologist for review. Has anyone elese had this same issue!!!!! Needless to say, I am devestated. he has no sympomt's,never did....all input would be greatly appreciated!!!! God Bless you all!!!

PatrickInNJ

CKaye said:

small cell poorly diff neuroendocrine cancer of pancreas
My son was diagnosed February 2011 with a poorly differentiated, small cell, non-functioning neuroendocrine cancer of the pancreas with spread to liver and supraclavicular lymph nodes. Tumor affected adrenal gland and bowel - inoperable. Treated with etoposide and cisplatin and had remarkable response with over 50% reduction in tumor size. Still has mass in liver and pancreas. Progression free for 6 months after chemo. Was off all pain meds, but is starting to have some pain again. The lack of information is particularly difficult for this rare type of cancer, so I understand your situation.

His oncologist has communicated with Johns Hopkins oncologists. Not sure what we will do when it starts progressing again. Choices seem to be slim. David is on and off Medicaid, which also makes it difficult.

Just trying to take one day at a time and be thankful for that day.

Small Cell Neuroendocrine of the Pancreas
Hi, CKaye. My wife was diagnosed just a month ago with exactly the type of malignancy that your son has. Small cell neuroendocrine cancer ANYWHERE in the body is rare. For the pancreas, it's almost non-existent. I wanted to see how your son was doing.

My wife has had one round of chemo so far....etoposide/carboplatin....it has definitely helped her. I think, without chemo, she would have been gone a few weeks ago. She will be doing round 2 this week.

I know the future looks bleak, but I did manage to find some survivor stories online. I also think she will do well if we can get her own immunity functioning as strongly as possible, once the chemo is over. Nothing will stop a cancer faster than a person's own natural killer cells.

I wish everyone good luck and NEVER,NEVER,GIVE IN!!

edward 71

PamSchroeder said:

my husband also has NE prostate cancer
Please email me or message me if possible. My husband is 49 and was diagnosed almost one year ago. he is receiving tx in Houston and we actually go for scans on monday. I have been searching for a year to find another NEProstate cancer patient. My email is bobpamtay@suddenlink.net and would love to talk to you. Thanks
Pam

Neuroendocrine small cell prostate cancer
My husband is currently going through chemno (carboplatin/etopside)3 days on 18 off, with hormone shots. He has had 4 rounds, and will be getting a CT scan at the end of May. A decision will be made after the results of this test. He has tolerated the treatment with no problems. Please tell me what process your husband is currently going through. I know there are trials going on regarding small cell! Thanks, Kay

joann p

mr steve said:

C
We have been fighting for 4 years now. good luck

Husband with NET
Good Day,
My name is Jo-Ann and first and foremost I want to say God Bless you and your family for dealing with this unGodly disease. my husband was recently DX with Neuroendocrine Stage VI with primary site in Colon, tumor removed, 2 lymph nodes involved but met's to the liver with 5 to 6 tumors. We started on VP-16 and Cisplatin this past week. Just need to have some support. I am an ED nurse and recently more and more of my patients have had cancer, and everytime I hear this word, I cry... I just need someone to talk, vent and reassure me there is help!!!

aahkansas

AmyShan said:

Neuroendocrine
Shawn,
I was dx'ed in March 2010 with a neuroendocrine carcinoid lung tumor. I am currently on a treatment of cysplatin and etoposide along with daily radiation (M-F) for 6 weeks. I cannot seem to locate anyone to confir with on this type of cancer. I am a 37 yr old single Mom with 2 children (13 & 8). My tumor is 3.8 cm and has spread to the lymphnodes in my thorasic cavity, mainly the ones along my esophogus. Was your cancer derived from Neuroendocrine cells as well? How did the chemo affect you? I hope you don't mind the questions. Thanks!
Amy

amyshan
Im new here. My boyfriend was just dx on May 23 rd with NET.. Were still waiting on 2nd opinions and the waiting is taking a toll on us. The local cancer center wants to give the same exact treatment you mentioned above.plus They want to do chemo and radiation. did it work for you? They keep telling us they dont know nothing about NET so how the heck can they suggest a treatment? hope you find your way back to this board.connie hope all is well with you

Sooze3821

edward 71 said:

Neuroendocrine small cell prostate cancer
My husband is currently going through chemno (carboplatin/etopside)3 days on 18 off, with hormone shots. He has had 4 rounds, and will be getting a CT scan at the end of May. A decision will be made after the results of this test. He has tolerated the treatment with no problems. Please tell me what process your husband is currently going through. I know there are trials going on regarding small cell! Thanks, Kay

Neuroendocrine Carcenoma (and more?)
Hi Everyone!

Those of us who are going through rare cancers need to post...a lot! There is no information to be had and we only have each other to depend on. My husband was diagnosed at the beginning of May with Gastric cancer (One doctor said stage 3 another said stage 4) that had metastasized to the liver with "numerous" tumors. It has also been referred to as Small Cell cancer and Neuroendocrine Carcenoma. No wonder we are confused! When I ask if these are all the same I get various answers.

After two chemo rounds he appears to be responding to treatment. Not that it's been easy. He has had profound nausea and dizziness. His treatment is: one week consisting of Mon. Cisplaton & VP16(Etoposide), Tues. & Weds. just VP16, Thurs. a shot of Neulasta. He also takes 4 MG of Dexamethasone Thurs-Sat. 2 times a day. Then 2 weeks off with just labs and CT Scans once each week.

This is what I have learned on my own: NO ONE has an expiration day stamped on them! The statistics you find on the internet is YEARS old. They have come a long way in just the last year. Our doctor told us what he is using this year isn't what he used last year. There are no statistics for these drugs. There is no way they can know how these will work, only that they do. Everyday brings a new day a research to light, they will find a cure I'm sure of it.

Until my husband is in remission, I will fight tooth and nail for his life by staying informed and above all, staying positive! I am keeping a journal of this so I can see the improvements just by looking back a few pages. They may be small improvements but it's a battle won as far as I am concerned. Move forward, love unconditionally, love deeply, smile, have a life, make each day count, none of us no how long we have left.

I intend to post often and offer our experience to anyone who wants to read it. Please feel free to chat with me.

joann p

Sooze3821 said:

Neuroendocrine Carcenoma (and more?)
Hi Everyone!

Those of us who are going through rare cancers need to post...a lot! There is no information to be had and we only have each other to depend on. My husband was diagnosed at the beginning of May with Gastric cancer (One doctor said stage 3 another said stage 4) that had metastasized to the liver with "numerous" tumors. It has also been referred to as Small Cell cancer and Neuroendocrine Carcenoma. No wonder we are confused! When I ask if these are all the same I get various answers.

After two chemo rounds he appears to be responding to treatment. Not that it's been easy. He has had profound nausea and dizziness. His treatment is: one week consisting of Mon. Cisplaton & VP16(Etoposide), Tues. & Weds. just VP16, Thurs. a shot of Neulasta. He also takes 4 MG of Dexamethasone Thurs-Sat. 2 times a day. Then 2 weeks off with just labs and CT Scans once each week.

This is what I have learned on my own: NO ONE has an expiration day stamped on them! The statistics you find on the internet is YEARS old. They have come a long way in just the last year. Our doctor told us what he is using this year isn't what he used last year. There are no statistics for these drugs. There is no way they can know how these will work, only that they do. Everyday brings a new day a research to light, they will find a cure I'm sure of it.

Until my husband is in remission, I will fight tooth and nail for his life by staying informed and above all, staying positive! I am keeping a journal of this so I can see the improvements just by looking back a few pages. They may be small improvements but it's a battle won as far as I am concerned. Move forward, love unconditionally, love deeply, smile, have a life, make each day count, none of us no how long we have left.

I intend to post often and offer our experience to anyone who wants to read it. Please feel free to chat with me.

Same diagnosis
Sooze,
I read your story and I see my plight in it... My name Is Jo-Ann and in April, my husband, who had left sided adenocarcinoma of the colon in 2010, went for a repeat colonoscopy and low and behold, a tumor was found... no symtpoms, just called an incidental finding..with a node on the liver removed....the path report was neuroendocrine stage IV A. The PET/CT scan show's 5 to 6 lessions on the liver with several lymph nodes involved.... On May 14th, he also started on VP 16, he had 1 8 hour session that consists of 2 hours pre-hydration, decodran, Zofran, VP-16 for 90 minutes,Manitol, Cisplatin for 2 hours followed by another 3 hours of hydration, then 2 sessions with just the decadron, Zofran and VP-16. he has had 2 sessions thur far. He doesn't take any extra steroids during the week. He only needed 1 shot of neulasta after the first session that brought his WBC count to 28,000...he had lab work after the first session.. the numbers were good so he didn't need repeat labs.... he has 3 weeks off then repeats the sessions, he will have 6 sessions total, then CT scans every 2 months there after.. Our oncologist is VERY optomistic with this course of treatment.. he has been tolaerating the treatments very well, only feels fatigue on the 3rd day after treatment, but bounces back...no nausea, no vomiting, very mild diarrhea for 1 day only... I know what you are feeling... I have read all the death sentence articles.. I am an ER nurse and it seems that almost every ther pateint i care for has cancer, Im never able to forget about it for 1 second....there is hope, recently my friend took care of a man who has had the same illness as our husbands and he is 10 years living... and a good quality life...I wish you the best.. please keeep in touch....

Sooze3821

joann p said:

Same diagnosis
Sooze,
I read your story and I see my plight in it... My name Is Jo-Ann and in April, my husband, who had left sided adenocarcinoma of the colon in 2010, went for a repeat colonoscopy and low and behold, a tumor was found... no symtpoms, just called an incidental finding..with a node on the liver removed....the path report was neuroendocrine stage IV A. The PET/CT scan show's 5 to 6 lessions on the liver with several lymph nodes involved.... On May 14th, he also started on VP 16, he had 1 8 hour session that consists of 2 hours pre-hydration, decodran, Zofran, VP-16 for 90 minutes,Manitol, Cisplatin for 2 hours followed by another 3 hours of hydration, then 2 sessions with just the decadron, Zofran and VP-16. he has had 2 sessions thur far. He doesn't take any extra steroids during the week. He only needed 1 shot of neulasta after the first session that brought his WBC count to 28,000...he had lab work after the first session.. the numbers were good so he didn't need repeat labs.... he has 3 weeks off then repeats the sessions, he will have 6 sessions total, then CT scans every 2 months there after.. Our oncologist is VERY optomistic with this course of treatment.. he has been tolaerating the treatments very well, only feels fatigue on the 3rd day after treatment, but bounces back...no nausea, no vomiting, very mild diarrhea for 1 day only... I know what you are feeling... I have read all the death sentence articles.. I am an ER nurse and it seems that almost every ther pateint i care for has cancer, Im never able to forget about it for 1 second....there is hope, recently my friend took care of a man who has had the same illness as our husbands and he is 10 years living... and a good quality life...I wish you the best.. please keeep in touch....

Thanks for the reply Jo-Ann!
You entry is a little more detailed than mine and I see I left out the anti nausea drugs and steroids that my husband also gets. My husband (Michael) had a lab yesterday and everything came back normal. Liver function is good, etc. His white blood cell count is elevated, we couldn't be happier. He will have a CT scan next Monday to see how much the tumors have shrunk.
Today he has told me so far the dizziness has left him, even thought the weakness remains. He is worried about the weight loss, (About 23 pounds since first of May)and the muscle loss. He is anxious to get walking and mild exercise so his muscles don't atrophy.
We have a lot of hope, I believe if you fight this terror you have a much better chance of surviving it. We are in it for the long haul. I know what you mean about not being able to forget about it. You have it worse being a nurse, but it seems every TV show , every commercial, has to do with cancer. It's like when you are pregnant all you see is pregnant women.
I hope other join this thread and bring hope and success stories here. The future looks brighter already!

joann p

Sooze3821 said:

Thanks for the reply Jo-Ann!
You entry is a little more detailed than mine and I see I left out the anti nausea drugs and steroids that my husband also gets. My husband (Michael) had a lab yesterday and everything came back normal. Liver function is good, etc. His white blood cell count is elevated, we couldn't be happier. He will have a CT scan next Monday to see how much the tumors have shrunk.
Today he has told me so far the dizziness has left him, even thought the weakness remains. He is worried about the weight loss, (About 23 pounds since first of May)and the muscle loss. He is anxious to get walking and mild exercise so his muscles don't atrophy.
We have a lot of hope, I believe if you fight this terror you have a much better chance of surviving it. We are in it for the long haul. I know what you mean about not being able to forget about it. You have it worse being a nurse, but it seems every TV show , every commercial, has to do with cancer. It's like when you are pregnant all you see is pregnant women.
I hope other join this thread and bring hope and success stories here. The future looks brighter already!

Weight Loss
Sooze,
My husband actually gained 3 lbs between his sessions. I give him Boost, Carnation Instant Breakfsat drink ice cream floats daily... he enjoys these very much...I am so glad to have someone who is going thru the same ordeal as I and my husband...let's keep in touch...
Jo-Ann

Sooze3821

joann p said:

Weight Loss
Sooze,
My husband actually gained 3 lbs between his sessions. I give him Boost, Carnation Instant Breakfsat drink ice cream floats daily... he enjoys these very much...I am so glad to have someone who is going thru the same ordeal as I and my husband...let's keep in touch...
Jo-Ann

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!