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Synovial Sarcoma - Online Support Group

Is there anybody with SS in the neck/throat region?


#21

Dear Marie,

I am so pleased that we have found eachother on this site.... i would realy want to meet you in person and give you a big hug......... its a pitty that we live so far apart.

I get so scared sometimes when i feel tired and my head hurts... luckely a have a direct line to the pediatrician here in Almelo and she has a direct line to my oncologist in Groningen.

I can go there each day if i want to get reasureance and comfort by giving me the extra care that i need. She can give me a MRI within one week.

The after effects of radiation and chemo ( ifo/doxo) are beginning to show i don't know how to deal with them..... but i am still living one day to the next.

Groetjes Max.

beechreader said:

Max ,Dont feel alone. I am here.I had the same thing in the same area.really wierd you showed up..I was online seeing if they have new cures...treatments and found this site. I dont think it was a coencidense...same scar...same side of neck...I live with loss of saliva ,my tongue is sore 16 yrs later,But nothing serious...Life is good.My doctor was dr,richard hayden.look him up online,he is now in scottsdale arizona. he was at unn of penn, in philladelphia.His skills saved my life.Please let me know if you got this message,I know how you are feeling and taling to me will give you the faith and hope you need,


#22

Max,I still have pains in my head so dont worry. the after affects from radiation..I think. I have had so many after affects.my tongue is sore everyday.slices are not visable anymore but I cant have mustard or any food with spices.sometimes the pains in my head are so bad i just have to have a good cry....It isnt that often though..im sooooo thirsty all the time from glands taken out.My hearing went also in one ear its bad.I have hearing aids /but im 50.I was always healthy until this at 33. I had really bad head aches. My docs down here did not take it seriously..Had really bad sore throat for a year ,yes a year...docs put me on steroids for swelling. Went to speciaist DR Papperone.ear doc..he said Im not doing an mri you have tmj......i got braces and for 3 yrs still had migraines..went to philly and in less than 1 week they found tumor....

I know your scared I was too. I ran to the library 2 hours after I found out to look it up. to my surprise 1 small paragraph....In 1995 very rare.I was determined not to give up or give in...My faith is what saved me......You have to find your peace in this...Pray to who or what ever you believe in everyday.It will calm you and calm your mind.In turn your body will feel the peace...mind controls body.....Eat well,sleep well..Love and not anger.....I did find a correlation with our cancer. People in the 70s who were treated with sun lamps for acne got it....I was always in tanning bed at hair salon i worked in. we got mega tanning bed in 1989. I got an awful burn one day.same place my tumor was ,i had bubbles and vein showing.....I often think i CAUSED THIS MY SELF BY THAT...But only God knows...Because every doc says they dont know....

Im glad I found you. I felt good when I met cancer survivors while going through treatment...

YOU CAN SURVIVE THIS......I AM LIVING PROOF. ANYTIME U NEED TO ASK A QUESTION OR TALK ..I AM HERE....ANY WAY I CAN HELP....I KNOW IT IS AWFUL..,I KNOW HOW SCARED YOU ARE I HAVE BEEN THERE....I HAVE FELT EVERYTHING YOU ARE GOING THROUGH PROBABLY.....

I will pray everyday for you.I dont think it was by chance I was looking up info on my cancer and found this site....I feel it was meant for us to meet and talk...

The cancer happened ,you were treated , and now you are going to survive....

Life is good.....Marie


#23

Hi Marie,

I also feel that is was meant for us to meet......

Did you know that SS is a defect in your dna? If the tumor contents ephitheel tissue you were simply born with it.....

It involves sx 18 chromosome if you studdy hard you may find out how your chances are in the future....


#24

where do you live?


#25

Where did you see that info ? how can i find out?


#26

I live in Almelo.. the Netherlands,

beechreader said:

where do you live?


#27

I google synovia sarcoma , it takes a long time but its worth it.

beechreader said:

Where did you see that info ? how can i find out?


#28

Hi my names chad. I’m 22 years old and 4 months ago I noticed a lump in my neck, turned out it was synovial sarcoma. I know exactly how you feel. Let me know if I can help at all


#29

I had SS to metastasizeto the lymph nodes in the left side of my neck. It was horrific. The tumors got so big they started protruding out of my neck...very visible. I underwent 18 rounds of radiation. It literally saved my life! The side effects from the radiation included not being able to swallow. I had to take pain pills to eat. I completed that in December 2011. So far, so good. I get a new scan on Monday to see where things are. I'm a little nervous, however, because I have some unexplained pain near that region, so I'm going to the Dr. today. Yes, I do understand what you are feeling. It's a very scary place to be in. You are not alone. If I can answer anymore questions, please don't hesitate to contact me. I have wonderful radiation oncologists at Stanford Hospital, Ca. They have done 5 of my radiations which includes 2 cyberknifes and I'm doing good so far. Keep the hope and faith. Sometimes we have to take the risk!

Gina


#30

Hallo Marie,

I just read your reply and it moved me to tears. Thank you so much for sharing your story!

I hope you are still doing fine.

Max's Mam,Sandra.

Max said:

Dear Marie,

I am so pleased that we have found eachother on this site.... i would realy want to meet you in person and give you a big hug......... its a pitty that we live so far apart.

I get so scared sometimes when i feel tired and my head hurts... luckely a have a direct line to the pediatrician here in Almelo and she has a direct line to my oncologist in Groningen.

I can go there each day if i want to get reasureance and comfort by giving me the extra care that i need. She can give me a MRI within one week.

The after effects of radiation and chemo ( ifo/doxo) are beginning to show i don't know how to deal with them..... but i am still living one day to the next.

Groetjes Max.

beechreader said:

Max ,Dont feel alone. I am here.I had the same thing in the same area.really wierd you showed up..I was online seeing if they have new cures...treatments and found this site. I dont think it was a coencidense...same scar...same side of neck...I live with loss of saliva ,my tongue is sore 16 yrs later,But nothing serious...Life is good.My doctor was dr,richard hayden.look him up online,he is now in scottsdale arizona. he was at unn of penn, in philladelphia.His skills saved my life.Please let me know if you got this message,I know how you are feeling and taling to me will give you the faith and hope you need,