olfactory neuroblastoma

olivia46 · September 2011

Skiffin16 said:
SuperThread...
Welcome Olivia...LOL, if you hit that post button more than once because it's slow, you'll end up with four posts... we've all done it.

Here is a link to Sweetblood (Dawn's) accumulation of links and information you might find very helpful.

SuperThread

Best,
John

Thank you
Hi John:

Thank you very much for the link.

Olivia46

SIRENAF42 · September 2011

olivia46 said:
Just diagnosed with olfactory neuroblastoma
Hi Sirenaf42 and all:

I was just diagosed with olfactory neuroblastoma. I'm going to see a radiation oncologist and a neurosurgeon soon. The operation will be within 6 weeks. Just wonder what to prepare for questions and what to expect of the operation. I was seeking 2nd opion and came to u penn hospital in Phili.

I'm glad to find this support group, however, not familiar with the site yet.

Thanks,

Olivia46

Hi Olivia46
You will be glad you found this support group... many times I just needed to know someone understood me.. and there many here that do!

You can email me at sirenaf44@yahoo.com and you can ask me anything. My cancer was in my ethmoid sinus, oralfactory nerve and nasopharnyx. Surgery was endoscopic followed by 6 weeks of IMRT radiation to sinus area, both left and right also including my right neck lymphnodes. I am 3 years cancer free

Look forward to getting to know you.

Sirena

Hondo · September 2011

olivia46 said:
Just diagnosed with olfactory neuroblastoma
Hi Sirenaf42 and all:

I was just diagosed with olfactory neuroblastoma. I'm going to see a radiation oncologist and a neurosurgeon soon. The operation will be within 6 weeks. Just wonder what to prepare for questions and what to expect of the operation. I was seeking 2nd opion and came to u penn hospital in Phili.

I'm glad to find this support group, however, not familiar with the site yet.

Thanks,

Olivia46

Hi Olivia
I too welcome you to the faimly here on CSN, there is a lot of help and infomation that you can get right here from others who have been there.

Wishing you all the best
Hondo

olivia46 · September 2011

Hondo said:
Hi Olivia
I too welcome you to the faimly here on CSN, there is a lot of help and infomation that you can get right here from others who have been there.

Wishing you all the best
Hondo

Thank you
Hi Hondo:

I'm still trying to know how to navigate in the support site. It seems I can only create mails by replying to other people's mail? Need to spend more time to be familiar with the site.

Thanks,

olivia46

olivia46 · September 2011

SIRENAF42 said:
Hi Olivia46
You will be glad you found this support group... many times I just needed to know someone understood me.. and there many here that do!

You can email me at sirenaf44@yahoo.com and you can ask me anything. My cancer was in my ethmoid sinus, oralfactory nerve and nasopharnyx. Surgery was endoscopic followed by 6 weeks of IMRT radiation to sinus area, both left and right also including my right neck lymphnodes. I am 3 years cancer free

Look forward to getting to know you.

Sirena

Radiation and chemo threapies
Hi!

My cancer is on the left sphenoid sinus. The radiation oncologist told me that I will need 6.5 weeks, 5d/week, radiation threapy after my surgery. He mentioned damage of my vision. I need to find out more about what he meant. Am I going to be blind on one side or both sides? I have his e mail address, I'm going to send him questions. Also I need to see a medical oncologist for chemo. My ENT was away, I guess we are going to discuss this.

Thanks for listening.

Olivia

olivia46 · December 2011

olivia46 said:
Radiation and chemo threapies
Hi!

My cancer is on the left sphenoid sinus. The radiation oncologist told me that I will need 6.5 weeks, 5d/week, radiation threapy after my surgery. He mentioned damage of my vision. I need to find out more about what he meant. Am I going to be blind on one side or both sides? I have his e mail address, I'm going to send him questions. Also I need to see a medical oncologist for chemo. My ENT was away, I guess we are going to discuss this.

Thanks for listening.

Olivia

IMRT treatment
Hi!

I am still not familiar with steering the site. I checked the "olfactory neuroblasatoma"(ON) as the favorite site by copying "ON" address before login. After login,I went to "ON" favorite site to get here. I'll check the help desk again. I asked before but did not get the response.

I had a long surgery in October by two doctors. I was told the tumor was removed completely. However, for preventive care,it is wiser to have radiation therapy. I'm going to have mask preparation next week. We need to drive ~ 1.5 hr to the hospital. Should we stay nearby the hospital? Could anyone please advise me how bad the side effects are going to be and how to deal with them? I knew that eating is going to be a problem, I should have Ensure handy; dry mouth could be eased a bit by mouth wash; some local hair loss.... Some mentioned the mask was awful..... Is the treatment could result in any memory loss or peosonality change? I'm just very nervous. I'll ask these questions next week too. Any advice will be greatly appreciated.

Thank you for listening.

olivia

longtermsurvivor · December 2011

olivia46 said:
IMRT treatment
Hi!

I am still not familiar with steering the site. I checked the "olfactory neuroblasatoma"(ON) as the favorite site by copying "ON" address before login. After login,I went to "ON" favorite site to get here. I'll check the help desk again. I asked before but did not get the response.

I had a long surgery in October by two doctors. I was told the tumor was removed completely. However, for preventive care,it is wiser to have radiation therapy. I'm going to have mask preparation next week. We need to drive ~ 1.5 hr to the hospital. Should we stay nearby the hospital? Could anyone please advise me how bad the side effects are going to be and how to deal with them? I knew that eating is going to be a problem, I should have Ensure handy; dry mouth could be eased a bit by mouth wash; some local hair loss.... Some mentioned the mask was awful..... Is the treatment could result in any memory loss or peosonality change? I'm just very nervous. I'll ask these questions next week too. Any advice will be greatly appreciated.

Thank you for listening.

olivia

Hi Olivia
Don't be afraid to start another thread so you get more answers to your questions. I had radiaiton therapy in 1998, and am preparing to go through it again starting in January. I did't find it to be that bad the first time. I worked every day throughout, had no significant pain or other side effects to prohibit ordinary activities. I drove, housekept, recreated, and slept. Actually i slept a lot because I was pretty tired.

If you are not clausterphobicc the mask isn't bad. The individual sessions only take a handful of minutes to do. So the longest thing you've got going will be the drive.

Since I couldn't get IMRT where I live, I have moved to a city about 375 miles from home for the duration of my radiation therapy. If I lived an hour and a half away from the hospital, I'd probably tough it out and drive every day. But that's pushing it.

Best to you.

Pat

Hondo · December 2011

olivia46 said:
IMRT treatment
Hi!

I am still not familiar with steering the site. I checked the "olfactory neuroblasatoma"(ON) as the favorite site by copying "ON" address before login. After login,I went to "ON" favorite site to get here. I'll check the help desk again. I asked before but did not get the response.

I had a long surgery in October by two doctors. I was told the tumor was removed completely. However, for preventive care,it is wiser to have radiation therapy. I'm going to have mask preparation next week. We need to drive ~ 1.5 hr to the hospital. Should we stay nearby the hospital? Could anyone please advise me how bad the side effects are going to be and how to deal with them? I knew that eating is going to be a problem, I should have Ensure handy; dry mouth could be eased a bit by mouth wash; some local hair loss.... Some mentioned the mask was awful..... Is the treatment could result in any memory loss or peosonality change? I'm just very nervous. I'll ask these questions next week too. Any advice will be greatly appreciated.

Thank you for listening.

olivia

Hi Olivia
Sorry that you had so much trouble getting to this site. Normally when you first log in click on “Discussion Boards” and it will bring you into the site where there are a lot of “Cancer Specific” sites scroll down to “Head and Neck Cancer” that is where we are. Just click on it. Then like Pat was telling you open a new post by clicking on the “Post New Discussion Topic” and there post your question and a lot of other will do their best to give you answers.

Wishing you well in your treatment
Hondo

olivia46 · December 2011

longtermsurvivor said:
Hi Olivia
Don't be afraid to start another thread so you get more answers to your questions. I had radiaiton therapy in 1998, and am preparing to go through it again starting in January. I did't find it to be that bad the first time. I worked every day throughout, had no significant pain or other side effects to prohibit ordinary activities. I drove, housekept, recreated, and slept. Actually i slept a lot because I was pretty tired.

If you are not clausterphobicc the mask isn't bad. The individual sessions only take a handful of minutes to do. So the longest thing you've got going will be the drive.

Since I couldn't get IMRT where I live, I have moved to a city about 375 miles from home for the duration of my radiation therapy. If I lived an hour and a half away from the hospital, I'd probably tough it out and drive every day. But that's pushing it.

Best to you.

Pat

Thank you very much
Hi, Pat:

Thank you so much. I have some ideea about the housing facility near the hospital. Will see how it goes to make decision accordingly.

olivia

olivia46 · December 2011

longtermsurvivor said:
Hi Olivia
Don't be afraid to start another thread so you get more answers to your questions. I had radiaiton therapy in 1998, and am preparing to go through it again starting in January. I did't find it to be that bad the first time. I worked every day throughout, had no significant pain or other side effects to prohibit ordinary activities. I drove, housekept, recreated, and slept. Actually i slept a lot because I was pretty tired.

If you are not clausterphobicc the mask isn't bad. The individual sessions only take a handful of minutes to do. So the longest thing you've got going will be the drive.

Since I couldn't get IMRT where I live, I have moved to a city about 375 miles from home for the duration of my radiation therapy. If I lived an hour and a half away from the hospital, I'd probably tough it out and drive every day. But that's pushing it.

Best to you.

Pat

Thank you very much
Hi, Pat:

Thank you so much. I have some ideea about the housing facility near the hospital. Will see how it goes to make decision accordingly.

olivia

olivia46 · December 2011

longtermsurvivor said:
Hi Olivia
Don't be afraid to start another thread so you get more answers to your questions. I had radiaiton therapy in 1998, and am preparing to go through it again starting in January. I did't find it to be that bad the first time. I worked every day throughout, had no significant pain or other side effects to prohibit ordinary activities. I drove, housekept, recreated, and slept. Actually i slept a lot because I was pretty tired.

If you are not clausterphobicc the mask isn't bad. The individual sessions only take a handful of minutes to do. So the longest thing you've got going will be the drive.

Since I couldn't get IMRT where I live, I have moved to a city about 375 miles from home for the duration of my radiation therapy. If I lived an hour and a half away from the hospital, I'd probably tough it out and drive every day. But that's pushing it.

Best to you.

Pat

Thank you very much
Hi, Pat:

Thank you so much. I have some ideea about the housing facility near the hospital. Will see how it goes to make decision accordingly.

olivia

olivia46 · December 2011

Hondo said:
Hi Olivia
Sorry that you had so much trouble getting to this site. Normally when you first log in click on “Discussion Boards” and it will bring you into the site where there are a lot of “Cancer Specific” sites scroll down to “Head and Neck Cancer” that is where we are. Just click on it. Then like Pat was telling you open a new post by clicking on the “Post New Discussion Topic” and there post your question and a lot of other will do their best to give you answers.

Wishing you well in your treatment
Hondo

Thanks a lot
Hi, Hondo:

Will give a try. I guess there must be a specific catagory that questions for olfactory neuroblastoma will be lumped together.

Thanks a lot.

olivia

mdsamoa · June 2013

Best Treatment options for Olfactory Neuroblastoma

I am writing for my 62 year old brother who lives on the Island of American Samoa. He has recurring Olfactory Neuroblastoma. He has had two surgeries in Manila Philippines. He had his last surgery in December 2012 and it appears to not have been successful. The reoccurrence of the cancer is near or in his optic nerve. He has lost most of his sight in both eyes, therefore the reason I am writing for him. Knowing this is a rare form of cancer can anyone recommend a hospital in the US. He has relatives he can stay with near Cleveland OH, San Diego, CA and Greenville South Carolina. My brother does not have insurance or many funds to pay for surgery so we are looking at options that will work with him on a payment schedule for the costs of surgery and treatment. Does anyone know of any organizations that I can reach out to for assistance.

olfactory neuroblastoma

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