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IF you've had Rad Treatment - Please help me here.

Clearblue
Posts: 188
Joined: Apr 2010

Hello to everyone. My wife after three neck surgeries(laryngipharynx & others (see my profile).Today we were told that surgery didnt remove all the tumor in the last surgery.ie Biopsy +ve for secondary tumor.

They are now recommending Radiation against all previous recommendations, (Four of nine Fanconi Anaemia patients didnt survive the RT itself.Chemo is considered too toxic) I know you did sweetblood !Thank Gd!!!! .

It will be left side of neck and aesophog area(which in my wifes case is close to her stomache as she had a gastric pullup after aesophogectomy removal). The Onco approach would be to do the side of the tumor and aesophog area only. Even if RAD does work there it wont cut out high probab of additional primary tumors(something characteristic of FA)

Previousely she was on Erbitux only which she stopped owing to severity and two months later a three week acceleration to 3.5 cm tumor. It is uncertain as to weather Erbitux helped or not.I cannot express how fearful we are.

On sunday we are meeting the Onco.
I know you all have talked of this many times over and each person is different, but can you please tell me:

1-What questions should we ask next week re RAD treatment.
2-Are there any recommendations re prep or post rad possible to take/do
3-What should my wife know going into this?

I would be indebted for your responses. I dont have much of a support circle.
Which we had beter news.

Sincerely
Clear

Noellesmom
Posts: 1317
Joined: Aug 2010

This has got to be very distressing for both you and your wife. I cannot imagine.

It sounds as though the radiation is the best chance right now for survival for your wife, Clear. That having been said, it isn't going to be an easy course, even it is successful; we all know that patients face the possibility of a recurrence or acceleration of their cancer once radiation loses its effectiveness post-treatment.

As to what questions you should ask: I think I would ask about best and worst case scenarios.

When you have seen the doctor, you need to let your wife absorb what you find out and then sit and talk about the best decision to make.

I am sorry you are in this tough place, Clear.

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

Hi Clear. My heart sank when I saw your post. Sending you and your wife much love and prayers.

Maybe you could check with Dr. Auerbach and Dr. Kutler about their latest findings on radiating Fanconi Anemia patients. I just talked to her and I know that they are compiling info from those of us that have had rads to better understand and treat us.

Also if she has rads make sure they monitor her blood counts at least once a week. CBC and I'm not sure what else maybe dr auerbach would know tht too. You don't want them to upset her bone marrow and cause a problem there.

Watch for infection. Thrush, or a fungal infection can be the end for us.

I forget about swallowing with your wife, I know you told me that at one point she would dialate her own esophogus. Should you consider a peg tube?

What about checking with the site that Teresa Kennedy gave us. Is it Fanconi.org? Those guys may have more insight for you. Know better questions to ask for FA patients.

I will be praying for you guys. You know you can always email me.

Hugs,

Sweet

Clearblue
Posts: 188
Joined: Apr 2010

Nollesmom,
tnx for yr contacts,
i know i havent always got back to you
i appreciate it

Sweet
CAN you send me again their emails
and
can i say that you referred me to them?

Sweet i apologise i have forgotten your family name

email me
THANKS
G_Bless you.

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