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Papillary Thyroid Cancer unresponsive to I 131

Mommyofone
Posts: 3
Joined: Jul 2006

I really need some help! I just found out two years after my thyroidectomy (and recent bilateral neck disection) that I am unresponsive to 1 131!!! They are telling me that their is no chemotherapy, radiation is my last resort other than a clinical trial with Dectabine. In order to qualify I must have a tumor (which I hope I don't have because I just had radical neck surgery!). I am hopeless and helpless!!!!! Please anyone with advise.

Rustifox's picture
Rustifox
Posts: 131
Joined: Mar 2005

I'm sorry you are going through this, and send a big hug your way. Please know that there are others who have been through your situation, and who can help you through with your next steps. Many of the members have participated in some of the clinical trials, and may be able to recommend doctors and facilities for you.

Sign up for this group - it is free - and the members there can help you with suggestions, ideas, and their experiences:
http://health.groups.yahoo.com/group/adv-thyca/

This group is the advanced support arm of this organization:
http://www.thyca.org/support.htm

Please do consider joining the advanced support group. You may also want to try contacting the nearest group facilitator - they may have a member in the area who can work with you by telephone, or person to person visits:
http://www.thyca.org/sg/local.htm

There is hope! Please consider talking to the above folks - I'm certain you will find comfort, as well as others with similar situations who are seeing positive results from their treatments if you do. All the very best to you.

times3
Posts: 5
Joined: Jun 2006

I am in my third time with thyroid ca. and awaiting the scan results. Please don't be hopeless!!!!!!!! You are not helpless because you are not alone! Keep talking to people online.

Mommyofone
Posts: 3
Joined: Jul 2006

Thank you and am sorry you are in the waiting zone also. The unknown is a hard place to be. Just having a bad week.

JsGrl38's picture
JsGrl38
Posts: 2
Joined: Aug 2006

I am in the same boat that you are. I also had my entire thyroid removed and have had a total of 3 surgeries. I had two rounds of radioactive iodine treatment and was told 2 weeks ago that my cancer doesn't respond to this treatment either. I was told that chemo was an option and that "spot on" radiation, (the kind used for breast cancer patients) was an alternative. If you don't feel comfortable with decisions that are being made or just need more info, don't be afraid to get a second opinion!

jmclutch
Posts: 5
Joined: Dec 2009

Same thing happened to me. Thank God I found M D Anderson Cancer Cntr in Houston. Been going there since 2006 (had total thyroidectomy in KS in 2004 was stage IV and in lymph nodes but after 2 rounds of HIGH doses of I-131 no luck in control. Anderson Drs did a bilateral disedtion and removed another 117 lymph nodes in Dec 2006 - had yet another diseciton on the left side in 2008 - and no cancer since Feb this year. Now having mood swings and Hives since August of this year EVERY DAY. However, God has a plan and I do think it could be worse. I still have a voice - never lost it in spite of the odds. It is lower (I say Sexier tee hee) and I still am able to see my 6 grandkids and love my family and serve my God. I quit working in Aug last year to reduce stress as that seems to be a trigger for the mood swings for me?? Anderson was ready to move me to a clinical trial and I was ALL OVER that - but then the scan in Feb & again in Aug shows no cancer so I'm holding until re-vist in Aug of 2010 - FINALLY graduated to the one yr plan. I strongly suggest you get to M D Anderson as they are 5 years ahead of other hospital since the ONLY do cancer and see 10,000 patients daily! WOW! it is an awsome place and we're here for you. Don't give up - you can beat this thing.

lilmonkeyshine
Posts: 10
Joined: Oct 2006

I am in the same boat I was told 2 yrs ago i am not responsive to treatment and was told to live with my cancer i had a neck dissection 32 nodes removed half were cancer for something that is so curable how is it so many are unresponsive to treatment ? im stage III papillary thyroid

miladyx
Posts: 85
Joined: May 2009

Did ur neck dissection bring tg down?

lilmonkeyshine
Posts: 10
Joined: Oct 2006

my last tg my dr said held hope i have since found a new lymph node we will see where it goes

nevergiveup51
Posts: 40
Joined: Jan 2010

Hi JMclutch: What an inspirational story with a lot of hope. I also know of someone that went to this hospital having lukembia and lived another 20 years. I live in Connecticut. How would someone that lives so far away do this? Who do they call? Also, who was your doctor their? Just remebering about an article I read that the airlines have programs that will bring cancer patients back and forth. I have the number if anyone needs it.

Thank you,
Debby

lilmonkeyshine
Posts: 10
Joined: Oct 2006

i am reading on a amino acid therapy i was told 2 yrs ago to live with my thyroid cancer as i am non responsive as well i found this site and i am going to look into this diet farther
http://www.apjohncancerinstitute.org/cancer/thyroid.htm anything is worth a shot its using amino acids to kill cancer cells

sunnyaz
Posts: 582
Joined: Oct 2010

Wow! I am reading and rereading this article. It's a bit confusing, but I am determined to fully understand this concept. Looks like I have a project. Thanks for sharing the site.
Julie-SunnyAZ

grateful1
Posts: 81
Joined: Jun 2010

I PRaY THEY COME UP WITH SOMETHING--I BELIEVE THEY WILL. MY TUMOR WAS INOPERABLE AND AGRESSIVE. SO I UNDERSTAND THE LET DOWN SOMEWHAT. I AM ABOUT TO START THE LOW IODINE DIET AND SUTENT. BUT I ALSO TAKE SUPPLEMENTS. I BOUGHT SUZANNE SOMERS' BOoK KNOCKOUT WHEN I WAS DIAGNOSED IN FEB. I BOUGHT AND TAKE EVERY SUPPLEMENT IN THEre RECOMMENDED BY THREE INTEGRATIVE ONCOLOGISTS. LO AND BEHOLD WHEN THEY DID MY NEXT BIOPSY, THE SURGEON WAS SCRATCHING HIS HEAD THE BIOPSY CAME BACK NORMAL. ALSO THEY THOUGHT I Had anaplastic, but i would have lost my vocal cord use by now. so maybe it is helping.
i am still trying any traditional medicine offered me for sure--but i have turned to alternative too. good luck and God bless.

nevergiveup51
Posts: 40
Joined: Jan 2010

I also bought that book and I recommend it highly. Especially when it states: You must increase the oxygen supply to the cells. It makes a lot of sense. On top of following some of the things in this book with supervision of an NP Doctor, I go the the gym on a regular basis and I also use the sauna. Basically, the more you sweat, the more toxins you get rid of - killing cancer cells.

This book is good, everyone has to get it in my opinion.

Debby

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Debby,
Is the book called "Knock-Out"? Can you tell me who wrote it and where you might have found it?
Thanks,
Julie-SunnyAZ

nevergiveup51
Posts: 40
Joined: Jan 2010

I'm glad you asked. Knockout by Suzanne Somers. You can get it in any book store even the library. You will really enjoy reading it especially when she interviews Dr. Michael Galitzer, MD. Enjoy

Debby

Abuenin
Posts: 2
Joined: Mar 2003

I too have just received a non responsive diagnosis from the last PET scan that I had a week ago. I received the I131 in June and had to wait 6 months because of the Right neck dissection that eliminated 28 more lymph nodes 8 of then cancerous. I will the the radiation oncologist on Thursday to see what he is recommending and the I will ask for a referral to MD Anderson. I was originally diagnosed with Papillary Carcinoma of the Thyroid back in 2003. I was cancer free until last December when I had a biopsy on en enlarged lymph node. (Silly me I had done the Happy dance and celebrated that I was cancer free after five years.
What was MD Anderson like, how long did it take to get your appointment and who was your doctor or doctor?

Would greatly appreciated any info that you could Share with me. I too am a grandma of 2 sets of twins (3 girls 1 boy).

sunnyaz
Posts: 582
Joined: Oct 2010

Back in 2003 they did not know about the B-RAF Mutation Gene. You may need to have tissue tested to see if you are positive. About 45% of people have it. This may be why you are unresponsive. It makes your Thyroid Cancer more aggressive and less responsive to treatment. I tested positive this June and I am going into surgery for the third time to remove more Lymph nodes in about two weeks. I had RAI in September and I was able to uptake but it didn't really take care of all of the cells nor the microscopic cancer cells in the Lymph nodes. I have been advised that this will be a lifelong venture of scans and constantly staying on top of it. I hope this helps.
SunnyAZ-Julie

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

I asked my hometown Endo to make a referral for me, though I believe I could have done it myself. I requested to meet with Dr. Steven Sherman since so many on this and other boards have mentioned him. My endo was also familiar with him. It did not take long to get the appointment - I think it was within 2 or three weeks of me asking my doc to contact his office. I also see docs at Mayo for my complicated pap thyca case, and, as it turned out, Dr. Sherman was much in agreement with their plan for me and thought highly of my team there, so I am sticking with Mayo as my primary care center. MD Anderson seemed a well run place and Dr. Sherman was very easy to talk to and very informative. I like to get multiple opinions from the experts so I made the trip to see him.

poweredbythree
Posts: 1
Joined: Jun 2011

I see that this was written in 2006 and it is now 2012, I am going through the same thing and wonder what to expect? I had a total thyroidectmoy in may 2011 and in August of 2012 had a radical neck dissecton on both sides.. Now I am told I am not responcive to radiocative iodine treatments:( Im 27 and have 3 kids and I am pretty nervous.

tazbeau
Posts: 6
Joined: Sep 2012

At this point I have no clue what the truth is, but when I asked my endo what is done if a cancer is not Iodine avid, she told me that there are some good Chemo-therapies available now. My husband concurs that this is what the docotor said. I don't want to give you misinformation. I didn't specify nor did she offer as to whether this chemo was in or out of clinical trials. I didn't think to ask because I haven't done RAI yet. I know the Mayo Clinic has good doctors for almost any disease, or know where to find them, I woudl think.

I totally understand being nervous. I hope you get more specific answers than I could provide.

Renee4666's picture
Renee4666
Posts: 2
Joined: Oct 2012

Please check out this blog. This lady is on the thyca.com.

http://dj-thyroidcancer.blogspot.com/2012/11/ethanol-ablation-round-1.html

I just saw this today!!!
Here is what on the mayo clinic website that i found about this:

Alcohol ablation.
Mayo Clinic doctors pioneered ultrasound-guided alcohol ablation treatment for recurring thyroid cancers. Alcohol ablation involves injecting small recurrent cancers with alcohol using imaging such as ultrasound to ensure precise placement. This treatment may kill recurrent tumor cells in regions that are difficult to reach surgically. Your doctor may recommend this treatment if you have recurrent thyroid cancer limited to small areas in your neck.

Hope this helps!

smerth
Posts: 2
Joined: Nov 2012

Oddly enough, I too just read this article today! The caveat here is that it indicates that it is limited to small areas in your neck. My Hurthle cell carcinoma has spread to many other areas of my body so I don't think they would do this procedure in those places.

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