still there

txpipeliner

well after finishing my 35 treatments of rad, i was in so much pain my dr. had me get a pet scan early than she likes. sure enough some more cancer showed up. so went to diffrent dr. for a mri. he want to make the hole in palate 3times the size it is now, plus more jaw bone to be removed and some of my cheek bone. he plans on takeing skin off my wrist to patch the hole. has anyone had that done to them? will you be able to talk with the hole being larger? i didnt think to ask dr. while is was there i just sat there so overcome. all i could thinkto say was ok do what ever it takes.

debbiejeanne

i have no info for you but

i have no info for you but wanted to say i'm so damn sorry its back and you have to fight again.  i will put you in my prayers.  i hope the docs are able to fix everything and that tx won't be too rough on you this time.  you've won before and I'm sure you can do it again.  we will be here to cheer you on.

God bless you,

dj

polystone2014

so sorry to hear this

i am so sorry you come back here. Although I have no idea for your questions, i will pray for you to beat the cancer. Here is a big family to fight against cancer. Hope somebody else can provide useful information to you. God bless you!

katenorwood

thoughts and prayers

txpipeliner,

I myself have not had this done.  But I have heard from others that it is a rough road.  Yes, others have had this done and are doing well.  The one's I know of have ACC H/N.  I'm not sure of your dx ?  I checked your bio and didn't see it listed.  Please remember you can ALWAYS call your onc's back and get all the questions you need answered.  Write down any and all you have, and even have someone else listening with you so that you're hearing everything.  It is very overwhelming.  Will be thinking only positives for you !   Katie

Anonymous7/6/2023

Radial Free Forearm Flap?

Hello,

first of all, I am so sorry you have had this difficult news. I truly hope things go well for you with the treatment that's planned.

I think (think), that you might be having an RFFF. A radial free forearm flap. That's what I had.

 

A section of tissue, plus a vein and an artery is taken from your arm/wrist. In my case, the tissue was used to rebuild my tongue. But this technique is used for lots of different facial procedures where a graft is needed.

 

Then I had skin removed from my stomach to cover the 'defect' - the missing skin on your arm.

 

It healed very well indeed, and it gives me no trouble at all. You get a scar in the shape of a computer mouse! I was given silicone gel to put on it to reduce the scar, but to be honest, it's messy this gel so I don't bother with it, I just moisturise.

 

After I left hospital I had the District Nurses come in each day, then every other day, then twice a week, then stop. They changed the dressings for me, but as I say it healed well. I also did not get much pain with it.

 

If you visit this link, it will show you a picture. It's not a gory photograph, just a simple diagram that isn't gruesome   But it shows it better than I can explain it!
 http://www.microsurgeon.org/images/rff4.4.jpg

 

I hope this is helpful to you.  xx x x

patricke

STILL THERE

I'm so sorry to hear that you have to go through more beast wars.  I haven't had any experience with the procedures that you are about to go through.  My heart goes out to you.  Hang in there, and beat the beast!

PATRICK 

KTeacher

Graft

I have had the skin graft from the wrist area.  The first week it was wrapped up and a cast was placed

 on it when I left the hospital.  My graft was for my eye area, not the mouth.  I know we have some that have had that done.

Mine has healed well, I do use cream on it.  I have quite a scar.

longtermsurvivor

I also have had a RFFF

and honestly, it was one of the easier things done to me.  They used the tissue obtained to rebuild the floor of my mouth after resection of a cancer located adjacent to my tongue.  I lost quite a bit of  tongue function with the surgery as it denervated the left half off my tongue, but the surgery itself wasn't that bad.  It required the usual stuff, of course: tracheotomy, NG tube, 8 days in the hospital.   But honestly, it was a very doable surgery.

 

 

Pat

Anonymous7/6/2023

Estelle_H said:

Radial Free Forearm Flap?

Hello,

first of all, I am so sorry you have had this difficult news. I truly hope things go well for you with the treatment that's planned.

I think (think), that you might be having an RFFF. A radial free forearm flap. That's what I had.

 

A section of tissue, plus a vein and an artery is taken from your arm/wrist. In my case, the tissue was used to rebuild my tongue. But this technique is used for lots of different facial procedures where a graft is needed.

 

Then I had skin removed from my stomach to cover the 'defect' - the missing skin on your arm.

 

It healed very well indeed, and it gives me no trouble at all. You get a scar in the shape of a computer mouse! I was given silicone gel to put on it to reduce the scar, but to be honest, it's messy this gel so I don't bother with it, I just moisturise.

 

After I left hospital I had the District Nurses come in each day, then every other day, then twice a week, then stop. They changed the dressings for me, but as I say it healed well. I also did not get much pain with it.

 

If you visit this link, it will show you a picture. It's not a gory photograph, just a simple diagram that isn't gruesome   But it shows it better than I can explain it!
 http://www.microsurgeon.org/images/rff4.4.jpg

 

I hope this is helpful to you.  xx x x

My only problem with the

My only problem with the donor site, was a problem I had with ALL my surgery - I had an alllergic reaction to all my stitches. (I'm saying this coz you might see it in my profile).

I would not worry about this in your case, because my Consultant said he had never seen it before in 20 years of surgery. The stitches should never cause a reaction. But I am an 'eczema/asthma' person ('atopy') and I can react to things.

Once that issue was sorted, I had no problems at all with my wrist/arm donor site

txpipeliner

longtermsurvivor said:

I also have had a RFFF

and honestly, it was one of the easier things done to me.  They used the tissue obtained to rebuild the floor of my mouth after resection of a cancer located adjacent to my tongue.  I lost quite a bit of  tongue function with the surgery as it denervated the left half off my tongue, but the surgery itself wasn't that bad.  It required the usual stuff, of course: tracheotomy, NG tube, 8 days in the hospital.   But honestly, it was a very doable surgery.

 

 

Pat

surgery on 25th.

well the 25th is fast aproching starting to get really nervous i for got to mention the DR. said they saw 2spots on one of my lung.

txpipeliner

longtermsurvivor said:

I also have had a RFFF

and honestly, it was one of the easier things done to me.  They used the tissue obtained to rebuild the floor of my mouth after resection of a cancer located adjacent to my tongue.  I lost quite a bit of  tongue function with the surgery as it denervated the left half off my tongue, but the surgery itself wasn't that bad.  It required the usual stuff, of course: tracheotomy, NG tube, 8 days in the hospital.   But honestly, it was a very doable surgery.

 

 

Pat

 

 

Hondo

txpipeliner said:

surgery on 25th.

well the 25th is fast aproching starting to get really nervous i for got to mention the DR. said they saw 2spots on one of my lung.

Surgery

 

That is normal to get a little nervous it is something we all do but don’t let it get to you. Find something to focus on and keep a positive outlook that you are going to get through this in no time. All the best to you and will keep you in mu thoughts and prayers.

 

Tim Hondo

debbiejeanne

txpipeliner said:

 

 

i am praying for you and will

i am praying for you and will continue throughout the process.  you have a big family here and we are all pulling for you. 

God bless you,

dj