donnatu9122

Donna,
I am following your journey and sending hope for your healing..
I was wondering what happened that caused you to have to have
so much radiation therapy...I too hate it when someone says I'm
lucky. To have thyroid cancer...really...I am on my low iodine diet set for my RAI therapy May 12...I'm concerned just because no one else seems to be...nodules were found during an cervical MRI
I had to ask my primary to send me for an ultrasound...then I was told it was probably nothing...4 nodules the largest 4cm...after FNA was told all were benign...but since I was having throat symptoms I elected to gave it removed...Thankfully my Surgeon sent it to a spe uallist in PA...3 weeks latter...all were mallignant...so now I don't know who or what to believe...sorry I really didn't mean to unload like this...my best to you on your journey...Boni

The weird taste from the chocolate will fade and will return to normal. When I could not taste salt, I would try a potato chip each morning. So keep trying that chocolate every day! So glad to read that your lungs are now clear-that was a scary situation. I pray that all your scans will continue to be good scans. Please let me know how it goes with your next tests in Boston. Hopefully, you will have good weather for travel.

Thank you for following me; I am honored. I have read more of your posts today, and see a very brave woman through it all! My ovarian cancer has been more "threatening" to my life if I have to compare the two (which I apparently do, since I keep getting re-dos...at least of the ovarian). I had complications from the thyroid which will probably never resolve. It is hard, having one vocal cord paralyzed. I can never raise my voice enough for someone far enough away to hear me, and when I get out of breath, I get stridor and it sounds like I'm wheezing (I have asthma, and I know the difference; it's not wheezing) - it startles people around me, and I walk slowly, now.

I am dealing more at the moment with the horrible side effects of Carboplatin for the ovarian cancer. But the everyday damage from the thyroid cancer is there 24-7. I am just grateful that I no longer have the "straw" (tracheostomy) sticking out of my throat. That was very hard to deal with.

You, however, have been dealing with a lot of thyroid issues. I am VERY excited for you that the nodules have disappeared! It is wonderful to get a good result from your MRI and CT scan! Celebrate that!!

I've got so many cancer "anniversaries" and my ovarian is now considered chronic, so I will get repeat chemo on and on. My celebration anniversary, I realize this season especially, is Christmas, which I celebrate. I am already decorating, even though it's physically hard. My thought is, "I made it to another Christmas!!" and I want to do it up as big as I can!

I'm happy for your good result! Keep fighting, Cancer Warrior, Cancer Survivor! You have a friend! Lots of them!!

Linda

Hi, I am still here. It looks like you got a very high dose of RAI, I cannot even imagine putting 200 mci into my body. I thought that 151.7 was ridiculously high. I was fine for awhile and drove myself, the short distance, home, Then I went into isolation and slept most of the day. I would wake up every few hours drink and use the bathroom. After sleeping all day, I was still able to sleep at night. I woke up the next morning and looked like I had the mumps on both sides of my neck and face. It was painful and I could hear my blood pounding in my ears with each heartbeat.
I was not very hungry, but I asked my son to make me a tuna salad sandwich later that day. I could taste it just fine. It wasn't until the fourth day after RAI, that things started to taste strange. My swelling had gone down, but almost everything that I put in my mouth tasted bitter. After that, it got worse. I lost all sense of taste. Sour, bitter, sweet, and sour were gone. I also was left with practically no saliva. Eating a piece of bread was excruciatingly difficult and everything would just stick to my mouth and teeth.
On September 5th, I tasted sweet again! On September 14th, and tasted salt! Although I can taste these things now, my taste is not right. Everything still leaves me with a bittersweet aftertaste that I cannot shake. My mouth continues to be dry. I do believe it will return to normal, but my Endo said that if the dryness continues much longer, I should see an ENT to surgically open the ducts.
I cannot imagine working and I feel so tired all the time. I am doing everyday cleaning and cooking, but I need to rest in between activities, We are strong. We swallowed poison (RAI) and continue to fight this cancer. We will fight this and we will win!
What is the plan to deal with the spot on your lung?

Oh, just saw the notes below, you have tall cell. A friend of mine on the thyCa.org support boards has that and is being treated at Sloan Kettering

Hi, I have PTCFV. Is that the cancer type that you have? Sounds like u have really been through a lot!

Hi. Thanks for your sharing on my post. I am sorry about the loss of your mom. I lost mine when I was 22 to breast cancer. I know this is a sad time for you...especially as you battle cancer. I will pray for you.

I had a tracheostomy for about 6-7 weeks. During that time, my daughter got married. Dressmaker made a collar to match my gown. I had planned to sing at her wedding. I was able to...not what I had wanted, because my vocal cord is paralyzed. But something. It was good. I will work with a vocal coach to get my voice back.

Fight on! Don't give in to despair! We can beat this! God bless!

Happy birthday!!! Sometimes this game is a hurry up and wait game. Some doctors are now also taking the wait and see approach with TC. As a TC patient and survivor since 1997, I do not know if I like that approach. When are you having your treatment? Please feel free to message me if you have any questions. You may find my story and lots of helpful info on my bog www.papillarythyroidcancerguide.com
Elaine

Hi again,-- It is really nice to be able to chat with someone my age that understands the difficultness of this crazy variant. Wow, you have to travel some distance to get to your treatments in Boston. What is that, about a 3 hour trip? I guess I am lucky to be living so close to a major medical center here in Pittsburgh PA. I am only 3 miles away and they are amazingly good here.

I am a bit confused about why you had both the internal and external radiation. I guess that every treatment center has their own ways. I was not told anything about any external radiation , Why did they do that to you? Also, I was told to stay on the iodine-free diet for only 10 days and to stay on my Levothyroxine 125mcg. They will be giving me the Thyroxine injections instead of medication withdrawal.

So you have to do this for a second time and they send you home too. I wish they would let the treatment patients stay in a lead-lined hospital room until they are a bit safer to others. I will be given the radioactive iodine and sent home too. My children are all grown, but I will have one son and my husband in the house with me. I plan on placing a folding bed in a separate room off our bedroom that has a connected bathroom. There is another bathroom for everyone else to use.

I am dreading the whole body scan. I am so afraid that this aggressive cancer has spread to other parts of my body. I believe they will determine how high a dose of RAI I receive by what the body scan shows. Did you have any side effects from your last RAI? I hope our doctors know what they are doing. God help us. Please keep in touch.

Hello there. I have been reading your information and updates. You are not alone in your journey. I, too, like gwenm, wonder why you were on the Low Iodine Diet for so long. Why the external beam radiation? I also had metastasis. A 2nd opinion is always good. I, too, went for a 2nd opinion. That was the best move forward I could have made for myself. Thank you for being on here and sharing your story. I drove 8 hours for my 2nd opinion. So well worth it. My care path has not been nearly as extreme as what my original endo prescribed. Please ask questions. How many thyroid cancer patients is your doctor following? Have your visited www.thyca.org? I was diagnosed at Stage III 8 years ago and doing wonderfully well now. I will say it wasn't easy due to my age and my female hormones were also out of whack as well. Check out this link. http://www.thyca.org/pap-fol/ - hopefully this link will assist you in understanding more if you have not already been there. I would also recommend finding the closest thyroid cancer support group meeting you can find to attend. There is also on-line support or phone support per your request on thyca.org. As I always say, Knowledge Is POWER. The specialists in our field of diagnosis will tell us that as well. Warmest regards.

Hello and welcome, we are glad you found us. Your experience as a survivor is valuable to those who are just starting their journey, please look through the questions to see if you can help and also Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/thyroid-cancer

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

You may also find our "Beginner's Guide To Cancer" page helpful Click Here for that=> http://bit.ly/10BQKCi

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GregP
3X Survivor
Team WhatNext Community Mgr.

Sending prayers of healing your way and glad you found
this site, Your input about you and your journey with
Cancer will make every person who follows you on
What Next better and more informed about this
dreaded disease
Blessings CELLKIKKER

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter