Esthesioneuroblastoma

petrovicd

Hello everybody, I am new to this forum, and I'm writing in behalf of my 23 year old cousin (which is more like a baby brother to me). Nine months ago, after losing sight in both eyes with no previous symptoms he was diagnosed with a very rare type of cancer which occurred in less than 1000 cases from 1924 to date. The tumor grew in a course of 6 months, pressing on his optical nerves, and his brain, spreading to his sinus cavity. He was immediately treated surgically which removed most of the tumor, but in case to spare his optical nerves some of it was left to be treated with radiotherapy. An orange sized tumor was removed from a lymph node from his neck too. Nearly nine moths later, his cancer was back, and he had another surgery (the surgeon considers this operation to be more successful than the previous one since he believes they removed ALL the tumorous tissue), last Saturday. He is still in intensive care recovering from the surgery, waiting for further treatment. The surgeons are not optimistic that in another case of relapse a surgery would be possible, because they removed too much of the tissue from his head, and because the tumor shows rapid growth and has a firm consistency (?!?). As soon as he recovers from surgery, he is undergoing chemotherapy, and possibly radiation. A further full body exam will be performed for possible metastasis, although the doctors are optimistic it has not spread to distant areas. The tumor is aggressive and very fast growing, something that is fairly common with Esthesioneuroblastoma. Are there any members that had similar experiences with this type of cancer? I've been finding a lot of diverse studies online, since it's a very rare type of cancer, and a lot of studies are outdated. I need help. This is about a person that means the world to me, and I would change places if I only had the chance to do it. I will sell everything I have to give him the best treatment possible. After failing the first surgery and radiation therapy, I would like to know if somebody could explain to me what can chemo do for him (I've been studying for days about chemotherapy for that case of cancer, but I am not a medical person, and I can't understand everything). He is ready to fight, and I am ready to fight right by his side. We live in a third world country, but he is treated in a private clinic which is very well equipped and have excellent doctors, but also has it's limitation. Does that mean that he could possibly be further surgically treated if needed in a better hospital abroad? Is it possible the cancer won't respond to chemo at all? I am desperate for some info, and the slightest information will be appreciated very much. I am also suffering from a severe autoimmune illness which drove me to a life on permanent chemotherapy, and is worsening by the day because of all of the stress, but I don't care... All I care is that my little brother is healthy again. Thank you very much, and I am sorry for the long post.

P.S. Just to add, if it does matter, his first surgery was endoscopic, and the second was craniotomy.

phrannie51

Welcome to this great forum, Petrovicd....

I didn't have this type of cancer, but there are 3 or 4 on here who were treated for it.  Hopefully, they will chime in and tell you their stories.

p

petrovicd

phrannie51 said:

Welcome to this great forum, Petrovicd....

I didn't have this type of cancer, but there are 3 or 4 on here who were treated for it.  Hopefully, they will chime in and tell you their stories.

p

Thank you very much for

Thank you very much for replying so fast. I am impatiently waiting to hear other people's stories and experiences. 

phrannie51

petrovicd said:

Thank you very much for

Thank you very much for replying so fast. I am impatiently waiting to hear other people's stories and experiences. 

Try sending Goyca

a private message....in order to do so, go to this link

http://csn.cancer.org/user/225322

at the bottom of the page there is a link that says "send this person a message"....sometimes that will get a faster response than someone who is just glancing through the subject lines.

p

wmc

WElcome to the H&N Group of the CSN

Olfactory neuroblastomas, also known as esthesioneuroblastomas, are very rare, malignant tumors that develop in the nose. 

 

Welcome to the H&N group. Very you need to be here for your 23 year old cousin. That is rare,but we do have some that have or had it. With that said you and your cousin have the right idea, fight. My cancer was of the larnyx and that was removed as well as 86 lymph glands. I did not have chemo or radiation so I can't commit much on it. Chemo is to stop the groth and it can kill cancer as well. Radiation shrinks and kills the tumor. When chemo and radiation are used together they often will have much better results. However, both come with side effects that can and will be hard on him. He can get through this, it is a rough road he is going down. With love and support from you [and this group] he can do it. Just remind him, just take one day at a time, and only today matters now. The tomorrows come later.

You will have many questions for your Doctors so please write them down and hand them to the doctors. If not, you will ask something and as soon as he answers you forget everything else. Also don't let him go alone. It is better if someone will also go to help with hearing what the doctor said. You both are and will be in a state of shock and not hear just right.  If you aue a religious person praying does help. First it can give you comfort, and your prayers can be answered. I prayed for the streingth to handle what ever mine was, [only five persons thought I would live through this] and my prayers were answered many times over. I never had any dought that I would come through this and be fine. A little different now, I have no voice box and breath through my neck, but I can talk with a prosthesis and I enjoy every day of the"New Me". We'll add you and your cousin to our prayer list as well.

Have Fath;

Bill

debbiejeanne

welcome petro although i'm so

welcome petro although i'm so sorry you need to be here.  your little brother is lucky to have you in his corner to fight with him.  it is wonderful that he has you to encourage him and be by his side.  my cancer was different but i want to welcome you and let you know that i will be praying for you and your brother.  this is a good place to come to for information and answers to your questions.  we will all do our best to help you and him with whatever you many need.  we will be here for you when you need to talk or vent, or ask a question or share good news!  here you are free to say whatever you are feeling as i'm sure most of us, if not have, have felt that way before.  sending postive thoughts to you and your cousin and keeping you both in my prayers.

God bless you,

dj

Meegs

Hi petrovicd

Sorry to hear about your brother. i have this type of cancer and mine has been really aggressive. I have had surgery, chemo and radiation and this cleared it from sinus and lymph nodes. It has since spread to the spinal fluid which is pretty rare - and am now taking a different chemo that was working (as at last scan anyway). The radiation was really tough but I would still recommend looking into that and chemo- I had cisplatin & etoposide first time round and now temozolomide If that helps at all. 

It it is really hard to find info and studies but try and get your doctor to do some digging!

message me if you gave any questions

Goyca

Hello petrovicd, I'm so sorry

Hello petrovicd, I'm so sorry ur cousin is going through this.

I have the same cancer, but not as aggressive. Mine is low grade.the tumor was in my left sinuses area reaching base of skull and my left nose. I had endoscopy but was useless so I had craniofacial resection and the tumor was out. Then I had mrit radiotherapy. And for now looks like all clear. I'll be having my pet scan in 2 months.

it looks like ur cousins case is more advanced as far as we know this tumor is rare but stay strong and as Megan said let the doctor so more research and tests. It's great that u r supporting ur cousin even if u feel that its not enough trust me it counts.

plz send me a msg whenever u need to discuss anything further about this.

god bless u and ur cousin may the Dr plan works great. Stay strong both of u.

marysueb

Meegs said:

Hi petrovicd

Sorry to hear about your brother. i have this type of cancer and mine has been really aggressive. I have had surgery, chemo and radiation and this cleared it from sinus and lymph nodes. It has since spread to the spinal fluid which is pretty rare - and am now taking a different chemo that was working (as at last scan anyway). The radiation was really tough but I would still recommend looking into that and chemo- I had cisplatin & etoposide first time round and now temozolomide If that helps at all. 

It it is really hard to find info and studies but try and get your doctor to do some digging!

message me if you gave any questions

Would love to connect with an ENB survivor!!

Hi, Meegs,

I'm wanting to connect with someone else who also has ENB.  My husband is an 8 year survivor.  He had a cranial resection with many complications, but he recovered and plays the drums again in local bands.  He has had both radiation, local radiation, radiosurgery, and chemo during his first few years, and is getting chemo now (Taxatere) weekly at Emory hospital in Atlanta, GA.

  Oh, he had a dropped metastasis in his lumbar region and his sacrum (in the fluid area) that was radiated 18 months ago and currently has no problems with that.  He still has one tumor in that area, but it has been stable for about a year after shrinking some from the radiation he had there.

He was first on Carboplatin and Etoposide, back in 2007, but had to stop it after two rounds.  He just got too sick.  

I would love to connect wtih another person who is fighting this as we are.  Are you able to walk?  Did you get your tumor resected in your spinal fluid area?  How are you managing?  Are you able to work?  

God bless you!  I would love to hear from you!  

Suzanne Brady 

marysueb

Goyca said:

Hello petrovicd, I'm so sorry

Hello petrovicd, I'm so sorry ur cousin is going through this.

I have the same cancer, but not as aggressive. Mine is low grade.the tumor was in my left sinuses area reaching base of skull and my left nose. I had endoscopy but was useless so I had craniofacial resection and the tumor was out. Then I had mrit radiotherapy. And for now looks like all clear. I'll be having my pet scan in 2 months.

it looks like ur cousins case is more advanced as far as we know this tumor is rare but stay strong and as Megan said let the doctor so more research and tests. It's great that u r supporting ur cousin even if u feel that its not enough trust me it counts.

plz send me a msg whenever u need to discuss anything further about this.

god bless u and ur cousin may the Dr plan works great. Stay strong both of u.

Goyca - I hope you are still doing well

Was your latest PET back in May of this year good?  How long since you were diagnosed?  My husband's ENB had involved maxillary, ethmoid and sphenoid sinuses, gone through the criboform plate, and had involved his frontal lobe before we were ever diagnosed (diagnosis took about 15 months!)  I'm glad your craniotomy went well.  I can tell you didn't have too many complications from it because you are able to communicate.  My husband had to relearn everything and was in the hospital for 2 and 1/2 months, but is much recovered from all that, after several years.  I would love to connect with you, and to gather comrades in this awful disease -- hopefully you won't ever get to the place where we currently are - I hope you get cured!!

Thanks,

Suzanne Brady

Redbow

Esthesioneuroblastoma

Hi Petrovicd,

There are a few of us out here!  I have met four others but know of six others who have it.  We all go to M.D. Anderson in Houston,TX and we all have the same Doctor, Dr. Ehab Hanna.  I highly recommend that anyone diagnosed with this should come here for treatment.  It is very rare and not many doctors know how to manage it. We all are in different stages but gave many things in common.  It is very helpful to share experiences.  Please feel free to e-mail me at to_tsu_hwa@yahoo.com.   Y name is Susan