In the middle of the storm

chark

Thanks to whoever is reading this. Any words on the subjects are appreciated.

Olfactory Neuroblastoma diagnosed June 2010 after sinus surgery, sent to Dana Farber, 2nd surgery to remove more cancer Aug 20, 2010, healing now and waiting for Proton Radiation starting Oct 5, 2010. I have a few questions and I am looking for wisdom.

1. Anyone else out there have Proton Radiation to the sinuses and if so what were your side effects like. I hear they tend to be milder.

2. Concern: I have to have my treatment 2.5 hours away from home, however I am blessed that the ACS has a hope lodge I will be able to reside in. My awesome in laws are moving into my home to care for my 10 year old son and 6 year old daughter. I am hoping to come home on weekends. The children are having a hard time with this - we are very close and I will miss them so much.

3. Long term effects of radiation, especially eyes and teeth. I am only 36.

4. Nutrition for during radiation.

And anything else that I am not thinking of. My faith is strong and docs are very convincing that all will be fine.

Thanks! Christy

Noellesmom

welcome
Christy,

I am a caregiver to my husband who has just completed treatments for hypopharyngeal and base of tongue cancer so I don't have experience with your particular type. However, I am happy to hear your doctors believe things will be good after all treatments.

Others who know more about this cancer will be chiming in shortly - just hang on!

You are definitely in the company of good, kind and knowledgeable individuals.

Hugs to you.

Skiffin16

Christy
Hi Christy, an welcome aboard....

I don't have experience with your specific cancer or radiation either. I did have IMRT though 35 days to the throat and tonsil area (Right tonsil, SCC STG III, HPV+ and a lyhmp node). Nine weeks of chemo, then seven weeks chemo/rads.

As for my eyes, I am older, 56 to be exact, my prescription for glasses hasn't change at all, so I'd say that isn't an issue of concern.

Long term effects are the great possibility of less taste, an saliva production. Especially initially and for several months. At first you more than likely won't have any taste (other than bad, even water tastes bad)...your mouth and throat will be dry, you'll need water with you always, each bite of food will require a sip of water.

More than likely with time, this will improve...I'm 14 months out and have around 80% of both my taste and saliva back. But that being said, improvements aren't measured in days or even weeks, it's more like months.

Just stay focused, believe that your treatment is working, and be patient. It's a very slow process, but we've all been there or are going through it as well...you'll make it also.

There's a very good thread going on now for teeth and fluoride, check it out.

Good Luck, and Go Bless,
John

uvm1978

Radiation
Hi Christy,
I just had a neck dissection due to mets from the forehead to the lymph node. I will be starting radiation soon. I went to the rad consult yesterday with my dentist (who is a friend) and my daughter also just started dental school, so I am a little over-focused on dental issues. What I have learned is that it is really important to take very good care of your teeth before, during and after radiation. Also, my dentist is making fluoride trays for me and she says I should use them permanently. You should ask your dentist about it. Where are you located? I just had surgery at MA Eye and Ear in Boston and am also 2 hours away. I just found out it's ok for me to do radiation locally. I am in Somers, CT just over the MA border near Springfield. Deb

PattyNC

uvm1978 said:

Radiation
Hi Christy,
I just had a neck dissection due to mets from the forehead to the lymph node. I will be starting radiation soon. I went to the rad consult yesterday with my dentist (who is a friend) and my daughter also just started dental school, so I am a little over-focused on dental issues. What I have learned is that it is really important to take very good care of your teeth before, during and after radiation. Also, my dentist is making fluoride trays for me and she says I should use them permanently. You should ask your dentist about it. Where are you located? I just had surgery at MA Eye and Ear in Boston and am also 2 hours away. I just found out it's ok for me to do radiation locally. I am in Somers, CT just over the MA border near Springfield. Deb

Strong faith is good elixir & this site will be a big help too
I'm a caregiver to my younger brother who had modified radical neck in May 2006. Others will be able to answer your questions & concerns ... I'm just sending emotional support. You will find this site is full of caring & knowledgeable surivors & caregivers. Glad your doc's tell you prognosis is good & we all pray it stays that way!

Best wishes

chark

PattyNC said:

Strong faith is good elixir & this site will be a big help too
I'm a caregiver to my younger brother who had modified radical neck in May 2006. Others will be able to answer your questions & concerns ... I'm just sending emotional support. You will find this site is full of caring & knowledgeable surivors & caregivers. Glad your doc's tell you prognosis is good & we all pray it stays that way!

Best wishes

Olfactory Neuroblastoma
Thanks for the replies.

John, My cancer is under my eye in the check sinus, in my nasal cavity, and up to my skull on the right side of my nose. That puts radiation extremely close to my eye, with a very small percent chance of blindness. I know I will have dry eye during the radiaton, but I am curious if anyone else who has had radiation near the eye had long term side effects.

Deb, I am in southern Maine. My family and I have been here less than a year; we moved here from Texas. I found a dentist who I think will fit my needs. My cousin in law is a breast cancer survivor and she also works at a dental office so she started my search for good dental care. I had my surgery with an oncologist at Dana Farber, but I have to go to Mass General for the Proton Beam radiation. They have not given me much info at all. Most facts I know have come through my own research. I visited with a cancer center closer to home, however due to the placement of my cancer everyone told me Proton Beam was the best I could get. Proton Beam causes less damage to surrounding tissue and since my eyes, brain, etc are right there this is important. So, we are going with faith that once we are in there daily I will feel more comfortable with them. I start Oct 5. Let me know if you will be in Boston around that time.

To the caregivers. You are so awesome. I don't know what I would do without my husband. He is my rock and I could tell him constantly how much I appreciate him and it would never be enough. Thank you for all you do!

I continue to pray for everyone on this forum and hope all continues to go well with you.
Christy

Hondo

Hi Christy


I did not do the Proton rad but sometime wish I did, I hear a lot of good about it and that it will not give you all the bad side affects that normal rad gives you. I have been radiated twice and my Oclo is looking to Proton as my next option incase it comes back again.

All the best to you.

chark

Hondo said:

Hi Christy


I did not do the Proton rad but sometime wish I did, I hear a lot of good about it and that it will not give you all the bad side affects that normal rad gives you. I have been radiated twice and my Oclo is looking to Proton as my next option incase it comes back again.

All the best to you.

Proton Radiation
Hondo,

I will let you know what I think of it when I get started, but yes I have heard very good things about it. How much radiation can you have. I worry about what will happen next if the cancer returns. I guess most of us live with that fear and for some they live through it.

Be blessed.
Christy

Hondo

chark said:

Proton Radiation
Hondo,

I will let you know what I think of it when I get started, but yes I have heard very good things about it. How much radiation can you have. I worry about what will happen next if the cancer returns. I guess most of us live with that fear and for some they live through it.

Be blessed.
Christy

Hi Christy


Hope you do well and please keep posting, I will keep you in my prayer

All the best to you.

sunney

chark said:

Olfactory Neuroblastoma
Thanks for the replies.

John, My cancer is under my eye in the check sinus, in my nasal cavity, and up to my skull on the right side of my nose. That puts radiation extremely close to my eye, with a very small percent chance of blindness. I know I will have dry eye during the radiaton, but I am curious if anyone else who has had radiation near the eye had long term side effects.

Deb, I am in southern Maine. My family and I have been here less than a year; we moved here from Texas. I found a dentist who I think will fit my needs. My cousin in law is a breast cancer survivor and she also works at a dental office so she started my search for good dental care. I had my surgery with an oncologist at Dana Farber, but I have to go to Mass General for the Proton Beam radiation. They have not given me much info at all. Most facts I know have come through my own research. I visited with a cancer center closer to home, however due to the placement of my cancer everyone told me Proton Beam was the best I could get. Proton Beam causes less damage to surrounding tissue and since my eyes, brain, etc are right there this is important. So, we are going with faith that once we are in there daily I will feel more comfortable with them. I start Oct 5. Let me know if you will be in Boston around that time.

To the caregivers. You are so awesome. I don't know what I would do without my husband. He is my rock and I could tell him constantly how much I appreciate him and it would never be enough. Thank you for all you do!

I continue to pray for everyone on this forum and hope all continues to go well with you.
Christy

Hello
Hi Christy,

First time on this site. I have stayed away from the computer since my husband got diagnosed 3 months ago. His name is Eric. My husband cancer is also in eye area (optic Nerve) and it is also sitting on his brain canal. It has deteriated his nose and bottom of one eye. They said he has had it for atleast 5 years. They staged it as a class C.

He is being seen at the mayo hospital in Rochester, MN. They started him on ChemO (first type didn't work) now he is on his second type. They are trying to shrink it before radiation. After this they will start radiation. They too are nervous because of the eye and the area it is in.

You are the first person that I have read that has similarities to my husband. How did it go for you?

I truly hope your doing okay and feeling well. I will pray for a fast recovery for you.

Thank you so much for any info,

Tracy

sunney

chark said:

Olfactory Neuroblastoma
Thanks for the replies.

John, My cancer is under my eye in the check sinus, in my nasal cavity, and up to my skull on the right side of my nose. That puts radiation extremely close to my eye, with a very small percent chance of blindness. I know I will have dry eye during the radiaton, but I am curious if anyone else who has had radiation near the eye had long term side effects.

Deb, I am in southern Maine. My family and I have been here less than a year; we moved here from Texas. I found a dentist who I think will fit my needs. My cousin in law is a breast cancer survivor and she also works at a dental office so she started my search for good dental care. I had my surgery with an oncologist at Dana Farber, but I have to go to Mass General for the Proton Beam radiation. They have not given me much info at all. Most facts I know have come through my own research. I visited with a cancer center closer to home, however due to the placement of my cancer everyone told me Proton Beam was the best I could get. Proton Beam causes less damage to surrounding tissue and since my eyes, brain, etc are right there this is important. So, we are going with faith that once we are in there daily I will feel more comfortable with them. I start Oct 5. Let me know if you will be in Boston around that time.

To the caregivers. You are so awesome. I don't know what I would do without my husband. He is my rock and I could tell him constantly how much I appreciate him and it would never be enough. Thank you for all you do!

I continue to pray for everyone on this forum and hope all continues to go well with you.
Christy

I've been checking daily to
I've been checking daily to see if you have any updates. Curious to see how everything went with you Christy. I pray it went well. My husband has the same cancer as you and it is in all the same areas. Looking forward to a update and hope your feeling well.