Octreotide and Esthesioneurblastoma
Plan is endoscopic surgical removal on 8 Feb with a short inpatient stay (unless they do create a CSF leak and have to do that repair). Once healed, I will have approx 6 weeks of daily radiation.
I read someone's post that they just took things one at a time. I think that is how I am compartmentalizing it as well. Got through the CT w/contrast and meeting Neurosurg, Rad/Onc, and Hem/Onc. The next day had my head and neck MRI. Boy did I greatly underestimate how long that would take! But made it through, and results appear good thus far. Am feeling postive about all that I am hearing, and greatly appreciate being able to read your posts regarding your experiences, etc.
The neurosurgeon has also orderd an octreotide scan which I will do next week. Does anyone have experience with this? I have a few articles I've downloaded, and it sort of sounds like this test will show if there are micro levels of tumor cells else where? I guess octreotide is also a chemo med that can be used adjunctively?
Just curious what others have experienced with this. Thank you!
Comments
-
radiolabeled somatostatin
Your tumor is a tad differen than most of us on this board. But there are more similarities than differences. Those of us with Squamous Cell Carcinoma get PET scans (positron emission tomography) using radiolabeled glucose. This scan works for us becaue the glucose is rapidly taken up by our cancer cells and the radiolabeling highlights the primary tumor, and any metastatic areas.
Your tumor behaves differnt metabolically. Octreotide can be radiolabeled in your case, and a PET scan will show uptake by your tumor and metastatic areas. So the end result is the same. What they are looking for is the same, though, limits of your primary tumor and mets.
There is a decent wickipedia explanation if you google octreotide.
So far what they've found is very good for you! It is pretty overwhelming getting ramped up to fight these things. Keep coming back to talk.
Pat0 -
"Our" Cancer Cells.....~ PET Scanslongtermsurvivor said:radiolabeled somatostatin
Your tumor is a tad differen than most of us on this board. But there are more similarities than differences. Those of us with Squamous Cell Carcinoma get PET scans (positron emission tomography) using radiolabeled glucose. This scan works for us becaue the glucose is rapidly taken up by our cancer cells and the radiolabeling highlights the primary tumor, and any metastatic areas.
Your tumor behaves differnt metabolically. Octreotide can be radiolabeled in your case, and a PET scan will show uptake by your tumor and metastatic areas. So the end result is the same. What they are looking for is the same, though, limits of your primary tumor and mets.
There is a decent wickipedia explanation if you google octreotide.
So far what they've found is very good for you! It is pretty overwhelming getting ramped up to fight these things. Keep coming back to talk.
Pat
Not sure about you, but as far know I don't have any cancer cells showing up on my PET scans....hopefully I won't have any stick around in the future either...LOL.
JG0 -
radiolabeled somatostatinlongtermsurvivor said:radiolabeled somatostatin
Your tumor is a tad differen than most of us on this board. But there are more similarities than differences. Those of us with Squamous Cell Carcinoma get PET scans (positron emission tomography) using radiolabeled glucose. This scan works for us becaue the glucose is rapidly taken up by our cancer cells and the radiolabeling highlights the primary tumor, and any metastatic areas.
Your tumor behaves differnt metabolically. Octreotide can be radiolabeled in your case, and a PET scan will show uptake by your tumor and metastatic areas. So the end result is the same. What they are looking for is the same, though, limits of your primary tumor and mets.
There is a decent wickipedia explanation if you google octreotide.
So far what they've found is very good for you! It is pretty overwhelming getting ramped up to fight these things. Keep coming back to talk.
Pat
Thank you Pat! For about a day, I couldn't even say octreotide...it was octa-something-tide...ha, ha! It helps me when the information is related to other things I am more familiar with, so what you wrote is very helpful. Thanks so much!
Valerie0 -
Esthesionueroblastoma SurvivorValerieMo said:radiolabeled somatostatin
Thank you Pat! For about a day, I couldn't even say octreotide...it was octa-something-tide...ha, ha! It helps me when the information is related to other things I am more familiar with, so what you wrote is very helpful. Thanks so much!
Valerie
Hi Valorie, I was diagnosed with ENB in June 2008. I am now almost 4 years cancer free
You can read my profile of my history, treatments.. etc.
I always say the best medicine is to allow yourself time to cry, scream, throw things, but then stop.... accept the diagnosis and laugh your way through the treatments. A postive attitude and calm spirit wil be your best friend as you go down this road.
Please feel free to email me anytime should you just need to talk or have questions, sirenaf44@yahoo.com.
Sirena0 -
Sirena.....SIRENAF42 said:Esthesionueroblastoma Survivor
Hi Valorie, I was diagnosed with ENB in June 2008. I am now almost 4 years cancer free You can read my profile of my history, treatments.. etc.
I always say the best medicine is to allow yourself time to cry, scream, throw things, but then stop.... accept the diagnosis and laugh your way through the treatments. A postive attitude and calm spirit wil be your best friend as you go down this road.
Please feel free to email me anytime should you just need to talk or have questions, sirenaf44@yahoo.com.
Sirena
Just wanted to say Hello, and glad you are doing well...
Hugs,
John0 -
Radiation following surgerySIRENAF42 said:Esthesionueroblastoma Survivor
Hi Valorie, I was diagnosed with ENB in June 2008. I am now almost 4 years cancer free You can read my profile of my history, treatments.. etc.
I always say the best medicine is to allow yourself time to cry, scream, throw things, but then stop.... accept the diagnosis and laugh your way through the treatments. A postive attitude and calm spirit wil be your best friend as you go down this road.
Please feel free to email me anytime should you just need to talk or have questions, sirenaf44@yahoo.com.
Sirena
Hi Sirena,
Thank you for your reply! It is two days before my surgery. I am scared for sure, but feeling really good that they will get it all out (by MRI/CT, it is contained in the sinus with no spread).
Right now the treatment plan is calling for follow-on radiation treatment. Did you have clear margins and had the radiation anyway? Seems like I've heard both - radiation and no radiation. I guess this is a rare enough cancer that there is no proven protocol.
Reading the posts, it sounds as though I've had the average discussion of the radiation which is to come...a few listings of side effects, an explaination of the process, etc. Now that I've read more and looked over the SUPERTHREAD, I will be much more prepared to discuss the radiation treatments with the doctor following the surgery.
Hmmm...lots to think about (freaking me out a little, too)...but don't want to think too hard right now. Just got to get through the surgery first.
Thank you for your email! I know I will have more questions as I go forth.
God bless!
Valerie0 -
You are rightValerieMo said:Radiation following surgery
Hi Sirena,
Thank you for your reply! It is two days before my surgery. I am scared for sure, but feeling really good that they will get it all out (by MRI/CT, it is contained in the sinus with no spread).
Right now the treatment plan is calling for follow-on radiation treatment. Did you have clear margins and had the radiation anyway? Seems like I've heard both - radiation and no radiation. I guess this is a rare enough cancer that there is no proven protocol.
Reading the posts, it sounds as though I've had the average discussion of the radiation which is to come...a few listings of side effects, an explaination of the process, etc. Now that I've read more and looked over the SUPERTHREAD, I will be much more prepared to discuss the radiation treatments with the doctor following the surgery.
Hmmm...lots to think about (freaking me out a little, too)...but don't want to think too hard right now. Just got to get through the surgery first.
Thank you for your email! I know I will have more questions as I go forth.
God bless!
Valerie
the take it one step at a time approach keeps us from completely going off our nut. The smart move is to concentrate on doing the surgery, then getting the path report, then recovery. You will have plenty of time to talk about radiation afterwards. There's no way they will start it for several weeks after surgery. And the to-the-point question will be to quote you statistics with and without radiation added to your surgical treatment. But any definitive statement about margins, as you know, will have to be made after surgery.
You're going to do fine.0 -
Radiation...ValerieMo said:Radiation following surgery
Hi Sirena,
Thank you for your reply! It is two days before my surgery. I am scared for sure, but feeling really good that they will get it all out (by MRI/CT, it is contained in the sinus with no spread).
Right now the treatment plan is calling for follow-on radiation treatment. Did you have clear margins and had the radiation anyway? Seems like I've heard both - radiation and no radiation. I guess this is a rare enough cancer that there is no proven protocol.
Reading the posts, it sounds as though I've had the average discussion of the radiation which is to come...a few listings of side effects, an explaination of the process, etc. Now that I've read more and looked over the SUPERTHREAD, I will be much more prepared to discuss the radiation treatments with the doctor following the surgery.
Hmmm...lots to think about (freaking me out a little, too)...but don't want to think too hard right now. Just got to get through the surgery first.
Thank you for your email! I know I will have more questions as I go forth.
God bless!
Valerie
Hi Valerie....
STGIII SCC HPV+ Tonsils and a single lymphnode....
As you know I had three cycles of chemo (cisplatin, taxoter and 5FU), then seven weeks of weekly carboplatin concurrent with 35 daily rads sessions.
They initially took the tonsils out, then started the cycles of chemo a few weeks later. After the second cycle, the tumor was nearly unfelt or seen. After the third round it was completely gone, confirmed with a CT.
My ENT really stressed the importance of continuing with the additional concurrent seven weeks of chemo and daily rads.
He said there have been others that have discontinued at that point, but not his recommendation. From my understanding they have survived, but I chose to continue.
Anyways, my story and what my ENT thought best....
Best,
John0 -
Radiation after clean marginsValerieMo said:Radiation following surgery
Hi Sirena,
Thank you for your reply! It is two days before my surgery. I am scared for sure, but feeling really good that they will get it all out (by MRI/CT, it is contained in the sinus with no spread).
Right now the treatment plan is calling for follow-on radiation treatment. Did you have clear margins and had the radiation anyway? Seems like I've heard both - radiation and no radiation. I guess this is a rare enough cancer that there is no proven protocol.
Reading the posts, it sounds as though I've had the average discussion of the radiation which is to come...a few listings of side effects, an explaination of the process, etc. Now that I've read more and looked over the SUPERTHREAD, I will be much more prepared to discuss the radiation treatments with the doctor following the surgery.
Hmmm...lots to think about (freaking me out a little, too)...but don't want to think too hard right now. Just got to get through the surgery first.
Thank you for your email! I know I will have more questions as I go forth.
God bless!
Valerie
My ENT felt he got all the tumor out, they did a PET scan and said I had clear margins. My oncologist stated that Esthesio is so rare, but what history they do have shows that is is at higer rish of reoccurence when surgery was not followed with additional treatments. He strongly urged me to undergo IMRT, so I did.
I know of about 7 of us with our type cancer. All of us had surgery followed by IMRT, except for one. He is the only one that has had reoccurence, he has actually had 2 reocurrences in a 5 year span. The first at the 2 year mark (in which afterwards he did have radiation and most recently as he began his 5th year it was in his lymphnodes and he is now undergoing chemo.
I didnt have this type information, and I followed my Drs guidelines and I do not regret it one bit. The short and long term side effects... well they suck, but I guess it is better than the alternative.
Hang in there and let me know how you are doing after the surgery.
S0 -
Surgery today!SIRENAF42 said:Radiation after clean margins
My ENT felt he got all the tumor out, they did a PET scan and said I had clear margins. My oncologist stated that Esthesio is so rare, but what history they do have shows that is is at higer rish of reoccurence when surgery was not followed with additional treatments. He strongly urged me to undergo IMRT, so I did.
I know of about 7 of us with our type cancer. All of us had surgery followed by IMRT, except for one. He is the only one that has had reoccurence, he has actually had 2 reocurrences in a 5 year span. The first at the 2 year mark (in which afterwards he did have radiation and most recently as he began his 5th year it was in his lymphnodes and he is now undergoing chemo.
I didnt have this type information, and I followed my Drs guidelines and I do not regret it one bit. The short and long term side effects... well they suck, but I guess it is better than the alternative.
Hang in there and let me know how you are doing after the surgery.
S
Thank you again for the information! So helpful! I report today at 9:30am. They said to be NPO after midnight, so I made sure to have my morning coffee at 10pm last night...lol!
Take care everyone!
Val0 -
AM coffee is not the sameValerieMo said:Surgery today!
Thank you again for the information! So helpful! I report today at 9:30am. They said to be NPO after midnight, so I made sure to have my morning coffee at 10pm last night...lol!
Take care everyone!
Val
When it is had before about 4AM. Best of luck today. And welome back, I suppose:)0 -
ValGirl....ValerieMo said:Surgery today!
Thank you again for the information! So helpful! I report today at 9:30am. They said to be NPO after midnight, so I made sure to have my morning coffee at 10pm last night...lol!
Take care everyone!
Val
Love the T-Shirt, where di you get it.....
Also, hoping for the very best on your ordeal today.
John0 -
Surgery over and I'm homeValerieMo said:Surgery today!
Thank you again for the information! So helpful! I report today at 9:30am. They said to be NPO after midnight, so I made sure to have my morning coffee at 10pm last night...lol!
Take care everyone!
Val
So glad I hurried up to be at the APU by 0930! They didn't even take me back to the PACU until 1230...geez!
I let a med student start my IV...man, I'm such a good teaching case. A nurse letting a medical student start an IV...probably the scariest part of the surgery. Ha, ha, ha! He got it in the first attempt.
They put the mask on me and said, "Breathe deeply..." then I woke up in the PACU.
So here is the totally great news...the surgery turned out to be like an outpatient sinus surgery. The tumor was attached at the superior turbinate. They got clear margins all around. Took a small bone shaving too.
No real pain...taking Tylenol. Actually whatever anesthesia did to the tip of my tongue hurts worse than anywhere else on my head. I have a little bruising to the side of my right eye, but otherwise okay.
So no packing up my nose, and oh my goodness, I can BREATHE through my nose like I haven't done in 5 years. Amazing!
Now on con-leave through the 27th, when I f/u in ENT. I'll most likely see the Rad Onc Doc then too to discuss beginning the radiation.
They were willing to release me same day, but that PACU nurse knocked me up on fentynl IV, and I couldn't even see straight. She said "Your sats are 100%"...but if you have to remind me to BREATHE, I do not need to be at my house...geez oh man. So they kept me overnight, and I discharged the next AM.
Now just trying to get some rest with 2 kids running around like chickens with their heads cut off. Can't wait for Monday, when they return to school. Ha!
Thank you all for your amazing words of wisdom and support!
Don't laugh-but I actually got the t-shirt from a Mary Kay event I attended once. But, it is sooooo me! I wanted to motivate my surgical team. Ha!
More soon!
Val0 -
I needed to hear a good story todayValerieMo said:Surgery over and I'm home
So glad I hurried up to be at the APU by 0930! They didn't even take me back to the PACU until 1230...geez!
I let a med student start my IV...man, I'm such a good teaching case. A nurse letting a medical student start an IV...probably the scariest part of the surgery. Ha, ha, ha! He got it in the first attempt.
They put the mask on me and said, "Breathe deeply..." then I woke up in the PACU.
So here is the totally great news...the surgery turned out to be like an outpatient sinus surgery. The tumor was attached at the superior turbinate. They got clear margins all around. Took a small bone shaving too.
No real pain...taking Tylenol. Actually whatever anesthesia did to the tip of my tongue hurts worse than anywhere else on my head. I have a little bruising to the side of my right eye, but otherwise okay.
So no packing up my nose, and oh my goodness, I can BREATHE through my nose like I haven't done in 5 years. Amazing!
Now on con-leave through the 27th, when I f/u in ENT. I'll most likely see the Rad Onc Doc then too to discuss beginning the radiation.
They were willing to release me same day, but that PACU nurse knocked me up on fentynl IV, and I couldn't even see straight. She said "Your sats are 100%"...but if you have to remind me to BREATHE, I do not need to be at my house...geez oh man. So they kept me overnight, and I discharged the next AM.
Now just trying to get some rest with 2 kids running around like chickens with their heads cut off. Can't wait for Monday, when they return to school. Ha!
Thank you all for your amazing words of wisdom and support!
Don't laugh-but I actually got the t-shirt from a Mary Kay event I attended once. But, it is sooooo me! I wanted to motivate my surgical team. Ha!
More soon!
Val
go get em Val.0 -
T-Shirt....ValerieMo said:Surgery over and I'm home
So glad I hurried up to be at the APU by 0930! They didn't even take me back to the PACU until 1230...geez!
I let a med student start my IV...man, I'm such a good teaching case. A nurse letting a medical student start an IV...probably the scariest part of the surgery. Ha, ha, ha! He got it in the first attempt.
They put the mask on me and said, "Breathe deeply..." then I woke up in the PACU.
So here is the totally great news...the surgery turned out to be like an outpatient sinus surgery. The tumor was attached at the superior turbinate. They got clear margins all around. Took a small bone shaving too.
No real pain...taking Tylenol. Actually whatever anesthesia did to the tip of my tongue hurts worse than anywhere else on my head. I have a little bruising to the side of my right eye, but otherwise okay.
So no packing up my nose, and oh my goodness, I can BREATHE through my nose like I haven't done in 5 years. Amazing!
Now on con-leave through the 27th, when I f/u in ENT. I'll most likely see the Rad Onc Doc then too to discuss beginning the radiation.
They were willing to release me same day, but that PACU nurse knocked me up on fentynl IV, and I couldn't even see straight. She said "Your sats are 100%"...but if you have to remind me to BREATHE, I do not need to be at my house...geez oh man. So they kept me overnight, and I discharged the next AM.
Now just trying to get some rest with 2 kids running around like chickens with their heads cut off. Can't wait for Monday, when they return to school. Ha!
Thank you all for your amazing words of wisdom and support!
Don't laugh-but I actually got the t-shirt from a Mary Kay event I attended once. But, it is sooooo me! I wanted to motivate my surgical team. Ha!
More soon!
Val
LOL, and I was thinking it was a cancer survivor shirt....but I guess it really is a "Cancer Survivor's Shirt"...
JG0 -
On the 12 march I was told I
On the 12 march I was told I also had olfactory neuroblastoma as yourself.
On the 16 march I also found out I had breast cancer....
Mon 16 April I underwent surgery to remove the olfactory tumor today I go
In to hear the results of that. They had to remove the bone between my sinus
And brain and they cause a cf leak they took fat from my stomach to block the hole.
I have to take care for another 3 weeks as it can still get another cf leak.
On the 9 th of may I go in for a mastectomy with a reconstruction.
Four weeks after that I will start radiation treatment for the olfactory and have not yet heard
About chemo did you get it? My way if thinking at this stage is I want chemo....
With having two cancers I just think its a good idea as what else might be in my system!!!
How are you now
Regards
Debbie0
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