Does anybody here familiar with anaplastic thyroid cancer?

we have been informed already that my mother only have 2 weeks (or 1 to the worst) left. That thing that grows in her neck is really getting larger every day. Is there something that we could do at least to make it smaller?
there is also some blood that comes out of the tube on her neck..it really makes her terrible. :(

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If you got to the THYCA.org website, there should be a link for an email group that is for anaplastic cancer.
I am so sorry your mom has this, but perhaps they can offer you some personal experience.
Have they got a breathing tube in her?
Yes this is a horrible thing, and I pray they can make her as comfortable as possible.

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Hello. I am sorry for your mom, as anaplastic is the most aggressive there is. I heard a speaker at a ThyCa Conference acouple years ago who had been a police officer when she was diagnosed with it and was well years later, but I don't believe that's the norm. The best advice I can give you is to call one of the experts in poorly differentiated or undifferentiated thyroid cancer and get the latest and most expert advice. There are VERY few experts and you can't fool around with someone who doesn't treat this every day. Here are three experts, and you can call ThyCa for more:

Dr Julie Ann Sosa at the Duke Medical Center in NC,
Dr. Mimi Hu or Dr Steve Sherman at MD Anderson in Houston
Dr Tuttle at Sloan Kettering in NYC.

Good luck

Bill& Galina

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Thank you so much for your response redbird53 and macbythesea.
Yes she had that breathing tube in her already for a week now.
I'll try to look for the doctors you said and seek medical advice.
Thanks again and Godbless.

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I am so sorry your mother is so ill. This is the page mentioned above by redbird. http://www.thyca.org/atc/ the link at the bottom of the page will take you to the anaplastic support group. You are all in my prayers.

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I appreciate it you. May God be with you and your family.

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I met a man in the MD Anderson waiting room that had anaplastic and was given 4 mths by his other doctor. He received treatment at MD Anderson and it has changed his prognosis and attitude. It's now been 9mths... his last CAT scan was clear... no sign of cancer!!!

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I have sent an email to MD Anderson and addressed it to Doctor Sherman. I have not received response yet as of today. But I am still hoping for it though.

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Good. You may want to consider a phone call, too, as email sometimes is flaky. Nobody minds if you are insistent, in fact they sort of expect it.

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It is tough. My dad is going through anaplastic thyrois cancer also. He just had a trake put in last week for a "precaution" as the last cat scan showed a mass growing back from where they took the tumor out in August. I will keep you in my prayers.

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God will surely listen to all of our for my mother.
Thank you so much.

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Feels like giving up :(

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Have you heard from MD Anderson or Dr.
Sherman?

I am praying the Drs. can make your Mom
It just is so scary when we want to fix
everything and we feel helpless. I am
sure there were times your Mom
felt the same, we so want to protect each
other. She knows how much you all
love her!

Your Faith must be your lifeline, God
be with all of you!

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It was supposed to say, I hope the
Drs. can somehow make her more
comfortable. You are in the US, at
this time?

She must be very proud to have
raised such caring children. I think
that is what makes you so strong.
Love is a bond which can never be
broken.

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gramma4,

no,im in the Philippines. I live here. I tried to send an email to MD Anderson to reach Dr. Sherman but I failed to receive a response from them.It is so sad.

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Hi,

I was diagnosed with ATC in April of 2011. Went to the Mayo Clinic in Jacksonville, Fl. I had 7weeks of Radiation & Chemo + Surgery. Had a feeding tube for three months! I am happy to report that I am still here!!! There are survivors out here, please try to hang on! They told me pretty much no one really makes it past nine months! If you have any other questions, just ask! Prayers, luck & strength to your family!

xoxoxo Stacey

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Stacey,

For those of us with less experience with
ATC, I wondered if there are any statistics
of age groups most often diagnosed with
this form of Thyca?

How long ago were you diagnosed?
How advanced was it when you began
the chemo and radiation?

I am sure you bring much encouragement
to the patients and families who are
affected by ATC,
Do they stage this as done with papillary,
follicular, medullary and other
types of Thyca?

How often do you have followup tests etc.
I hope you continue to respond. What were
your first symptoms?

Are there %s that have complete remissions?
I am sure you are grateful for all the medical
strides made in Thyca in the last 10
years. New techniques are always
on the horizon, the best reason to keep
fighting and belief in miracles,

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Susan,
How is your Dad this week? He did have
an appt. with the surgeon recently, right.

Does the trach tube have to remain in?
Are you taking any time off right now?

I pray for your Dad is comfortable
and your family will be together this
Thanksgiving.

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Hi Gramma4,
I was diagnosed in April of 2011. One morning I was having a hard time swallowing my vitamins. Went to several Dr.'s and they just thought it was a goiter! My primary did a cat scan then a biopsy and knew time was at the essence for ATC and sent me to the Mayo Clinic. No they do not stage it because it is so aggressive? I get tested every three months and by the grace of god I am still here! Only 300 pp a year get this! The statistics are very poor for survival but there are miracles! That why I am here :D I would be happy to help anyone get through this!
xoxoxo Stacey

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Stacey,
Thank you for the info. Thankfully, it sounds as if your primary
Dr. was really on the ball to order a scan. I bet most people
also would have ignored those symptoms for awhile.
I am sure your story will help, we also
have to listen to our instincts and the
body speaks if we pay attention.

Do you hear if there seems to be an
age group that is most often affected?
You did not mention your age, but the
patients whose families post here are
perhaps in their 50s?

Being informed does always make me
feel like I am doing what I can, but
ATC has to be very overwhelming.

I am "Thankful" that we have this site
and so many caring people with whom
we can both receive and give
encouragement.

Prayers make a difference and stay
strong, it is a rough battle!

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Stacey, Thankyou for this post. I had surgery on November 27 to remove a large nodules. Today I was told that it was Anaplastic . Did you have radiation, and what were the side effects if you did?
Virginia

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