neuroendocrine small cell carcenoma

joann p

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!

Thank You
Thank You so much for the information. My e-mail is nrz83@aol.com
jo-Ann

Sooze3821

joann p said:

Thank You
Thank You so much for the information. My e-mail is nrz83@aol.com
jo-Ann

Thanks!
My email is msyezall@gmail.com

Another experience to report: We applied for SS Disability and the supplemental insurance income. Let me explain a little for those who don't know. SSA Disability, once you are approved, is available after a wait of 5 months. You can apply for SSI which gives you an income until the SSA takes effect. I "thought" I had applied for both.

1. We received an award letter for SSA. Great! I called to find out about SSI.
2. I was told I checked a box that said I didn't want SSI. I find that hard to believe.
3. They said I could get an appointment or take my chances by walking in the office. Since the available appointments were 2 months out, we went to the office. There is no way to apply online or find out if you qualify.
4.After sitting for 2 hours we were called, only to be told in 10 minutes that our income was $8.00 over the allowable amount to get SSI.

There is something wrong with that system!

I only put this here because I think others might value the info. There are many organizations out there that are helpful. I think we should share them.

Sooze3821

joann p said:

Thank You
Thank You so much for the information. My e-mail is nrz83@aol.com
jo-Ann

Thanks!
My email is msyezall@gmail.com

Another experience to report: We applied for SS Disability and the supplemental insurance income. Let me explain a little for those who don't know. SSA Disability, once you are approved, is available after a wait of 5 months. You can apply for SSI which gives you an income until the SSA takes effect. I "thought" I had applied for both.

1. We received an award letter for SSA. Great! I called to find out about SSI.
2. I was told I checked a box that said I didn't want SSI. I find that hard to believe.
3. They said I could get an appointment or take my chances by walking in the office. Since the available appointments were 2 months out, we went to the office. There is no way to apply online or find out if you qualify.
4.After sitting for 2 hours we were called, only to be told in 10 minutes that our income was $8.00 over the allowable amount to get SSI.

There is something wrong with that system!

I only put this here because I think others might value the info. There are many organizations out there that are helpful. I think we should share them.

Sooze3821

joann p said:

Thank You
Thank You so much for the information. My e-mail is nrz83@aol.com
jo-Ann

Thanks!
My email is msyezall@gmail.com

Another experience to report: We applied for SS Disability and the supplemental insurance income. Let me explain a little for those who don't know. SSA Disability, once you are approved, is available after a wait of 5 months. You can apply for SSI which gives you an income until the SSA takes effect. I "thought" I had applied for both.

1. We received an award letter for SSA. Great! I called to find out about SSI.
2. I was told I checked a box that said I didn't want SSI. I find that hard to believe.
3. They said I could get an appointment or take my chances by walking in the office. Since the available appointments were 2 months out, we went to the office. There is no way to apply online or find out if you qualify.
4.After sitting for 2 hours we were called, only to be told in 10 minutes that our income was $8.00 over the allowable amount to get SSI.

There is something wrong with that system!

I only put this here because I think others might value the info. There are many organizations out there that are helpful. I think we should share them.

Sooze3821

joann p said:

Thank You
Thank You so much for the information. My e-mail is nrz83@aol.com
jo-Ann

Thanks!
My email is msyezall@gmail.com

Another experience to report: We applied for SS Disability and the supplemental insurance income. Let me explain a little for those who don't know. SSA Disability, once you are approved, is available after a wait of 5 months. You can apply for SSI which gives you an income until the SSA takes effect. I "thought" I had applied for both.

1. We received an award letter for SSA. Great! I called to find out about SSI.
2. I was told I checked a box that said I didn't want SSI. I find that hard to believe.
3. They said I could get an appointment or take my chances by walking in the office. Since the available appointments were 2 months out, we went to the office. There is no way to apply online or find out if you qualify.
4.After sitting for 2 hours we were called, only to be told in 10 minutes that our income was $8.00 over the allowable amount to get SSI.

There is something wrong with that system!

I only put this here because I think others might value the info. There are many organizations out there that are helpful. I think we should share them.

Sooze3821

Sooze3821 said:

Thanks!
My email is msyezall@gmail.com

Another experience to report: We applied for SS Disability and the supplemental insurance income. Let me explain a little for those who don't know. SSA Disability, once you are approved, is available after a wait of 5 months. You can apply for SSI which gives you an income until the SSA takes effect. I "thought" I had applied for both.

1. We received an award letter for SSA. Great! I called to find out about SSI.
2. I was told I checked a box that said I didn't want SSI. I find that hard to believe.
3. They said I could get an appointment or take my chances by walking in the office. Since the available appointments were 2 months out, we went to the office. There is no way to apply online or find out if you qualify.
4.After sitting for 2 hours we were called, only to be told in 10 minutes that our income was $8.00 over the allowable amount to get SSI.

There is something wrong with that system!

I only put this here because I think others might value the info. There are many organizations out there that are helpful. I think we should share them.

Sorry for the multiple posts
I have no idea how to delete them. My computer was having a problem.

Sooze3821

Sooze3821 said:

Sorry for the multiple posts
I have no idea how to delete them. My computer was having a problem.

CT Scan Results after 2 rounds of Chemo
Doctor's office just called and said there was a "Marked Improvement" in the tumors!! What once was 3cm is down to 1cm and there is NO I repeat NO progression! We are very excited! Michael's main complaint now is fatigue, he reports he feels about 70% back to normal. Some bone pain from Neulasta, and his white count remains high. Red count is down some so time to get some steaks!

Next week is 3rd. Chemo week and I know it will take it's toll on him. Considering everything I'm hoping it won't be as bad.

Sooze3821

Sooze3821 said:

CT Scan Results after 2 rounds of Chemo
Doctor's office just called and said there was a "Marked Improvement" in the tumors!! What once was 3cm is down to 1cm and there is NO I repeat NO progression! We are very excited! Michael's main complaint now is fatigue, he reports he feels about 70% back to normal. Some bone pain from Neulasta, and his white count remains high. Red count is down some so time to get some steaks!

Next week is 3rd. Chemo week and I know it will take it's toll on him. Considering everything I'm hoping it won't be as bad.

3rd week of Chemo
We call Monday our LONG day. That is the day he gets both Cisplatin and VP16 (Etoposide) It takes about 5 hours. I see a huge improvement in his tolerance of the drugs. He is bouncing back much quicker and his appetite is less effected. The fatigue is still an issue but its improving as well. His white blood cell count has stayed consistent so they are taking him off Neulasta for the moment. It will be replaced by antibiotics. He has started to gain weight again and just in the last couple weeks has added back 10 pounds!

The next two days he gets just the VP16 and then we get to relax for another two weeks. I'll be back if there is anything to report.

AnneLene

sparky3489 said:

Hi Selehka, I am new to this site, but read your post with having NSC lung cancer and found it very interesting. My brother was diagnosed with Lung Cancer the day after Thanksgiving and it took his oncologist nearly a month to determine what type he had. They told him that it is non small cell with neuroendocrine features. He is at stage 4 and the doc gave him 12-16 months to live and with 4 cycles of chemo, they gave him an additional 2 months longer. He has no symptoms, no loss of weight, no loss of appetite or anything like that, only after 2 cycles of chemo, he's lost all of his hair. We are desperately looking for someone that can guide us to the right things to eat in order to completely change his eating habits hoping it will stop the growth and spread of his cancer. It has met to 2 lesions on the liver and to one lymph node on the corina. We have read in many places about how bad sugar is to his body by feeding the cancer tumors, and would like to know what kinds of fruits and vegetables he should be eating now since his oncologist is against any type of natural supplements and remedies altogether. He is frantic, scared to death and wants to fight for his life!!! Any suggestions would be GREATLY appreciated!!!!

Did you find any treatment for your brother?
Hi, I am in the same situation as your brother and with the same diagnose. They have given me app. the same amount of time as your brother got.

I dont have any pain, loss of weight, or any other sign of illness in the moment and the chemo work fine on me. So I also feel a little bit frustrated about my future.....

So I undred did you find any treatment for your brother, and if did it work?

mr steve

AnneLene said:

Did you find any treatment for your brother?
Hi, I am in the same situation as your brother and with the same diagnose. They have given me app. the same amount of time as your brother got.

I dont have any pain, loss of weight, or any other sign of illness in the moment and the chemo work fine on me. So I also feel a little bit frustrated about my future.....

So I undred did you find any treatment for your brother, and if did it work?

treatment options
AnneLene

Have you see anyother Onc's about this type cancer. there are several new drug out and treatment options.

Steve

AnneLene

mr steve said:

treatment options
AnneLene

Have you see anyother Onc's about this type cancer. there are several new drug out and treatment options.

Steve

Treatment options
No, the system here I live is not open for that or may little more correct.... I doesnt had the time before I start tratment, caused of a vena cava syndrome. Anyhow I doesnt think I had an option in the beginning. I am treated at Oslo University hospital in an Cancer center with the best knowlegde with aggressive NET in my area of the country (Norway).

We start with chemo (2 different types - one for 3 dayse and one for 2 days in 24 h) and it?s look like it work fine on me as a first line treatment. In July before the 3. treatment I will have a new CT how can give us much more information.

AnneLene

Sooze3821 said:

3rd week of Chemo
We call Monday our LONG day. That is the day he gets both Cisplatin and VP16 (Etoposide) It takes about 5 hours. I see a huge improvement in his tolerance of the drugs. He is bouncing back much quicker and his appetite is less effected. The fatigue is still an issue but its improving as well. His white blood cell count has stayed consistent so they are taking him off Neulasta for the moment. It will be replaced by antibiotics. He has started to gain weight again and just in the last couple weeks has added back 10 pounds!

The next two days he gets just the VP16 and then we get to relax for another two weeks. I'll be back if there is anything to report.

Treatment
Hi, I was diagnosed the 4. of June and was for my first chemo the 5. of June (i got a vena cava syndrome, so thats the reason for the time scedule -fast).

I living in Norway and are treated at Oslo University hospital in a Cancer center. As a first line treatment they have started with Cisplatin and Etoposide (Cist. for 2 days and Etopside for 3 days - 24 h. treatment) and I was finished with my second treatment of totally four, yesterday.

I am treated at the hospital in Oslo and get chemo for 24 h. for 3 days ( a`24 h) once every 4 weeks ( I got treatment 2 one week before, but normally it is one treatment in every 4 weeks).

In the moment I dont have symptoms of sicknes as loss of weight, fatigue, paint or any other effects of the cancer ore the chemo. The doctors said at for me it is only talked about time, but they dont know if it takes 3 months or 1 year....

I gess your husbond and me are in the same time scedule when it comes to treatment, and time for diagnose.

joann p

Sooze3821 said:

3rd week of Chemo
We call Monday our LONG day. That is the day he gets both Cisplatin and VP16 (Etoposide) It takes about 5 hours. I see a huge improvement in his tolerance of the drugs. He is bouncing back much quicker and his appetite is less effected. The fatigue is still an issue but its improving as well. His white blood cell count has stayed consistent so they are taking him off Neulasta for the moment. It will be replaced by antibiotics. He has started to gain weight again and just in the last couple weeks has added back 10 pounds!

The next two days he gets just the VP16 and then we get to relax for another two weeks. I'll be back if there is anything to report.

Great
Sorry I haven't written for awhile, but between 2 jobs and chemo, well, where does my time go???? Frank finished session 3 last week, his WBC was 1.4 so he needed a Neulasta shot and the long day was even longer because he needed 1 extra hour of post hydration. He tolerated all 3 sessions amazingly. Repeat CT is July the 10th and our NP feels it will be good news.. he has gained 7 lbs since the start of his treatment. Also, there is another patient at our oncologist who is being treated for the same thing as my husband with the same treatment, who is doing so well, he is having a 3 month reprieve!!!! I hope that could be use someday!!!!! Have a great Fourth of July!!!!! It feels so much better to talk to somebody who can understand what I am going through!!!!!
Jo-Ann

joann p

Sooze3821 said:

3rd week of Chemo
We call Monday our LONG day. That is the day he gets both Cisplatin and VP16 (Etoposide) It takes about 5 hours. I see a huge improvement in his tolerance of the drugs. He is bouncing back much quicker and his appetite is less effected. The fatigue is still an issue but its improving as well. His white blood cell count has stayed consistent so they are taking him off Neulasta for the moment. It will be replaced by antibiotics. He has started to gain weight again and just in the last couple weeks has added back 10 pounds!

The next two days he gets just the VP16 and then we get to relax for another two weeks. I'll be back if there is anything to report.

Great
Sorry I haven't written for awhile, but between 2 jobs and chemo, well, where does my time go???? Frank finished session 3 last week, his WBC was 1.4 so he needed a Neulasta shot and the long day was even longer because he needed 1 extra hour of post hydration. He tolerated all 3 sessions amazingly. Repeat CT is July the 10th and our NP feels it will be good news.. he has gained 7 lbs since the start of his treatment. Also, there is another patient at our oncologist who is being treated for the same thing as my husband with the same treatment, who is doing so well, he is having a 3 month reprieve!!!! I hope that could be use someday!!!!! Have a great Fourth of July!!!!! It feels so much better to talk to somebody who can understand what I am going through!!!!!
Jo-Ann

Sooze3821

joann p said:

Great
Sorry I haven't written for awhile, but between 2 jobs and chemo, well, where does my time go???? Frank finished session 3 last week, his WBC was 1.4 so he needed a Neulasta shot and the long day was even longer because he needed 1 extra hour of post hydration. He tolerated all 3 sessions amazingly. Repeat CT is July the 10th and our NP feels it will be good news.. he has gained 7 lbs since the start of his treatment. Also, there is another patient at our oncologist who is being treated for the same thing as my husband with the same treatment, who is doing so well, he is having a 3 month reprieve!!!! I hope that could be use someday!!!!! Have a great Fourth of July!!!!! It feels so much better to talk to somebody who can understand what I am going through!!!!!
Jo-Ann

Progress
Good to see people posting here. Hi Joann and AnneLene!
Anne it sounds like you are getting the same treatments. So far I haven't heard any negative results. This is awesome! We may have some really good news here!
Joann, Michael has gained weight as well. Michael no longer has to take Neulasta but he does have to be on antibiotics. The hydration has become an issue. AT LEAST 2 LITERS IN 24 HOURS!!! He's floating LOL. We were told after 6 treatments he would be in remission. For how long? No one knows.

So this other man who got the "reprieve" how many treatments did he go through? Good luck with the CT!!! Be sure and let us know!

Thanks for the support its very comforting to know we're not alone!

AnneLene

Sooze3821 said:

Progress
Good to see people posting here. Hi Joann and AnneLene!
Anne it sounds like you are getting the same treatments. So far I haven't heard any negative results. This is awesome! We may have some really good news here!
Joann, Michael has gained weight as well. Michael no longer has to take Neulasta but he does have to be on antibiotics. The hydration has become an issue. AT LEAST 2 LITERS IN 24 HOURS!!! He's floating LOL. We were told after 6 treatments he would be in remission. For how long? No one knows.

So this other man who got the "reprieve" how many treatments did he go through? Good luck with the CT!!! Be sure and let us know!

Thanks for the support its very comforting to know we're not alone!

Treatment - 1`st line
I belive the treatment this time will be good for all of us, but I will ask more question about the treatment in line two and look into different possebilities... I am told from different Doctors that the time I have left is from 3 to app. max 16 months, depending on the results from this treatment. I still dont have any symptoms from the cancer, either got any bieffects of the chemo and I find it rare/odd/strange what ever.... 3 months is already in August so Wow...

In the moment I am checking out different possebilities, and I gess I will have an interesting conversation after the next CT scan.

Sooze3821

AnneLene said:

Treatment - 1`st line
I belive the treatment this time will be good for all of us, but I will ask more question about the treatment in line two and look into different possebilities... I am told from different Doctors that the time I have left is from 3 to app. max 16 months, depending on the results from this treatment. I still dont have any symptoms from the cancer, either got any bieffects of the chemo and I find it rare/odd/strange what ever.... 3 months is already in August so Wow...

In the moment I am checking out different possebilities, and I gess I will have an interesting conversation after the next CT scan.

I understand the doctor's want to be realistic but...
I think to tell you things like that is detrimental. There is hope for people with this type of cancer! I don't know all the details of your case but please stay positive and don't give up. They are coming up with new stuff all the time. With the meds you are on being the same as what my husband is taking and our doctors are saying they don't know what will actually happen is quite different. They said they love it when their patients beat the odds. I think we will!!!

Michael is doing really well this week, next week starts 4th week of chemo. He has gained more weight and we have been walking in the park and going to festivals! I hope he bounces back quick after the chemo next week. See you then!

AnneLene

Sooze3821 said:

I understand the doctor's want to be realistic but...
I think to tell you things like that is detrimental. There is hope for people with this type of cancer! I don't know all the details of your case but please stay positive and don't give up. They are coming up with new stuff all the time. With the meds you are on being the same as what my husband is taking and our doctors are saying they don't know what will actually happen is quite different. They said they love it when their patients beat the odds. I think we will!!!

Michael is doing really well this week, next week starts 4th week of chemo. He has gained more weight and we have been walking in the park and going to festivals! I hope he bounces back quick after the chemo next week. See you then!

I believe in miracles!
Dont worry I am always positive, and in addition this time I am also angry and that can bee a good combination in this case. I also ask one of the doctors if you find miracles and yes, they do (not many, but you find them). Every person react different on chemo so also that is supposed to be taken in to consideration in the end.

I have two chemo left of totally four and the next one start the 23. of July.... then is four days in the hospital were you get the chemo, 24 houers every day... One week after the chemo your immunesystem are in the botten and then your body start to build up again.

Then we are ready for some great fun, before next chemo start ;-)

joann p

Sooze3821 said:

Progress
Good to see people posting here. Hi Joann and AnneLene!
Anne it sounds like you are getting the same treatments. So far I haven't heard any negative results. This is awesome! We may have some really good news here!
Joann, Michael has gained weight as well. Michael no longer has to take Neulasta but he does have to be on antibiotics. The hydration has become an issue. AT LEAST 2 LITERS IN 24 HOURS!!! He's floating LOL. We were told after 6 treatments he would be in remission. For how long? No one knows.

So this other man who got the "reprieve" how many treatments did he go through? Good luck with the CT!!! Be sure and let us know!

Thanks for the support its very comforting to know we're not alone!

Good News Bad News
So today, Frank had a repeat CT scan and here are the results: after 3 rounds of chemo, he has responded well and the tumors have shrunk, the set back is that is had blood clots in both lungs and is presently in the hosptial,being placed on anti-coagulants... but that's ok, it's just 1 hicup in this roller coaster ride!!! Hosp all is well with you!!!
Jo

Sooze3821

joann p said:

Good News Bad News
So today, Frank had a repeat CT scan and here are the results: after 3 rounds of chemo, he has responded well and the tumors have shrunk, the set back is that is had blood clots in both lungs and is presently in the hosptial,being placed on anti-coagulants... but that's ok, it's just 1 hicup in this roller coaster ride!!! Hosp all is well with you!!!
Jo

Good to hear!
That's wonderful news about the CT scan. Are the blood clots a related thing or is it just as you said a hiccup? How long does he have to stay in the hospital?

We are coasting along until next week and the 4th round.

Anna, be sure and let us know about your ct scan!