Olfactory Neuroblastoma

survivor726

Hello,

Our son has been diagnosed with an Olfactory Neuroblastoma.  He's currently living in New York and plans to be treated at Mount Sinai. Anyone possibly have any information on treatment of this type of cancer at Mount Sinai?

I see from other forums that UVA, Pittsburg and Johns Hopkins seem to be the 3 recommended hospitals that have experience with this type of cancer.

His cancer is a Kadish C.  The tumor board will be meeting Wednesday to decide whether or not to do chemo and radiation first before surgery or Surgery followed by radiation. The doctors have also mentioned the possibility of some facial reconstruction (eyes) Does anyone have any thoughts or experience with either treatment plan? 

I am a desperate and worried mother who wants the best care possible for her son.  His father and I live in Virginia and would have easy access to UVA and of course would rather him be with us during this time. 

Our son also plans to return to work a week after surgery and continue to work through radiation chemo treatments as well.  Is this possible? How much help did you need during recovery? I would greatly appreciate hearing from someone who has been down this road.

Thank you so much!

D

 

 

MissBlueEyes4Life

Hello let me first start by

Hello let me first start by saying I am sorry to hear the bad news!

I was diagnosed with this rare cancer back in march. Mine was kadish D as it had spread to lymph nodes In neck. I had a tumor in my nose that made it impossible to breathe. It had grown upwards into part of my frotal lobe. 2 noticeably large lymph nodes in my neck. Thats what made doctors do a CT scan. Then I went and had a biopsy done at an ent doc and that's when they found out it was cancerous.  Totally something a 23 year old never would thought of hearing. It was a total shock.

Plan for me was surgery, radiation and chemo. I first had neck surgery to remove infected lymph nodes, they ended up removing 50 (less than half were cancerous).  Then I had a cranial ressection(cut me ear 2 ear removed part of skull to get to tumor) done to remove the tumor from my sinuses and they went endoscopic through my nose.  

After almost 2 months I started my treatment. Chemo for me is cisplatin and etoposide, 4 rounds every 3-4 weeks. And radiation was 5 days a week for 7 weeks.

For me there was just no way, not even a small chance I could go to work. Doctors have me out until almost December this year.  Just the fatigue alone is hard to deal with, it's not a kind of tired that can be fixed with sleeping, it's as if someone just drained all your energy out. I suppose it's different for everyone but even something as simple as showering tires me out. I am in bed all day only getting up for essentials. I honestly don't know how people do this alone, but again, everyone reacts differently.  Since I'm young I still live with my parents and they take care of me, boy I couldn't love them more for that. I definitely needed the help.

I would say by far radiation has worse side effects, chemo just drains me and gives me a little nausea. Nothing compared to radiation. I would search around this forum to see what to expect. Side effects don't usually start for a few weeks into rad. For me I got terrible mucositis/thick mucus that made me gag/throw up constantly, along with a very dry tongue/roof of mouth. I lost all my sense of taste so eating wasnt an option (mouth sores/sore throat made it hard too) I also am not able to talk well because of the mucus issues. I highly suggest getting a peg tube put in. I hated the idea but realize how much of a life saver it is. Radiation makes your body work all the time so you have to pack in calories. I was losing too much weight too fast till I started using the tube now I am stable. 

I'd also recommend using a pump overnight for feedings, with my mucus/throwing up I couldn't keep it down but running my food while I sleep worked perfectly.   Also if he does become unable to eat at least drink water or something to keep those swallowing muscles moving!! 

I currently just finished 7 weeKS of rad, still have one more round of chemo to go. Still dealing with side effects but it hasn't even been a week. 

 

Anything else you want to know let me know! I hope the best for your son.

Barney1961

Hi

My wife was just diagnosed with this cancer.  I do not know what to expect.  She has not gone for treatment yet.  where we live, there is really no one that has worked with this tumor.  My question is what hospitals did everyone get treated at?

 

Viking18

Barney1961 said:

Hi

My wife was just diagnosed with this cancer.  I do not know what to expect.  She has not gone for treatment yet.  where we live, there is really no one that has worked with this tumor.  My question is what hospitals did everyone get treated at?

 

Some options to consider

Sorry to hear about your wife's diagnosis.  Keep thinking positively and remember this is a very treatable cancer.  Some places to look into for treat, if you haven't discovered already, include:

Mass Eye and Ear 

UPMC -- Dr Snyderman 

MD Anderson 

Johns Hopkins

Univ. Of North Carolina

Miami

 

Lucy626

Olfactory neuroblastoma info

My husband just got diagnosed with this and is having surgery tomorrow morning .Any info of what I can expect after this and to let me know what the next months ahead will look like . I know he is Kadish C ,I also know they plan on doing radiation and chemo Hasn’t been discussed yet . Will he have energy to do anything ,He has absolutely no sense of smell or very little taste if any.  All info is greatly appreciated . I hope that all of you are doing well and there is a road at the end of the tunnel . Thanks prayers to all ! 

 

Lucy626

Barney1961 said:

Hi

My wife was just diagnosed with this cancer.  I do not know what to expect.  She has not gone for treatment yet.  where we live, there is really no one that has worked with this tumor.  My question is what hospitals did everyone get treated at?

 

Wife with olfactory neuroblastoma

How is she doing . Any info would be helpful .Husband just got diagnosed . I have no idea what we are up against . Hope your wife is doing good . 

harleydc

esthesioneuroblastoma

I was diagnosed in February of this year.  My only complaint was central vision loss in my left eye.  After several months of seeing an opthamologist and retina specialist my PCP, thank God for her, sent me for an MRI which showed the mass.  I was referred to University of Birmingham at Alabama and saw a neurosurgeon, ENT and oncologist.  I have undergone 11 chemo treatments with cisplatin and etoposide and 6 weeks of radiation.  The tumor is not only rare but mine has calcifications which is not typical of this type tumor.  I have had 3 biopsies with molecular studies done but no real answer to what treatment will work since I have not had much reduction at all.  Surgery is not recommended due to the involvement of optic nerves.  The doctor has applied to a drug company to comp immunotherapy since insurance won't pay cause it's not a proven treatment.  I have also seen a study using PRRT that had good results on a patient at Lenox Hill Hospital in New York.  Just searchig for answers like everyone else.  

harleydc

esthesioneuroblastoma

Update - I started immunotherapy with Keytruda on October 5th and will have treatment every 3 weeks with an MRI after the third treatment.  Merck did approve me for financial assitance so the drug is not costing me anything.  

harleydc

Lucy626 said:

Olfactory neuroblastoma info

My husband just got diagnosed with this and is having surgery tomorrow morning .Any info of what I can expect after this and to let me know what the next months ahead will look like . I know he is Kadish C ,I also know they plan on doing radiation and chemo Hasn’t been discussed yet . Will he have energy to do anything ,He has absolutely no sense of smell or very little taste if any.  All info is greatly appreciated . I hope that all of you are doing well and there is a road at the end of the tunnel . Thanks prayers to all ! 

 

esthesioneuroblastoma

Just wondering how your husband is doing.  I was really sick during radiation and chemo with no energy.  My sense of smell is gone and I'm told won't return.  My taste did finally come back but not the same as before.  It took several weeks after treatment for my taste to return.  I will say that I was taking Hemp oil during my second round of chemo which was 3 days in a row and I was not nearly as nauseous or weak.