The THYROID Thread

Well I have spoken to the endo and met the new radiation oncologist. As always it was enlightening. I think I will call it the good bad news

The best news is that the PET scan showed the cancer is confined in the one lymph node but the scan also showed some issues with my heart and gastro stuff. Hmm, ok another day and another dr but cancer is on the top right now

Loved or greatly liked the new rad onc. He did some medical school at Sloan Kettering. He said my case is very different and dh liked his new saying that his professor taught him - no tumor follows the textbook!! lol

He said some interesting things
Yes he agrees my cancer is so rare and they only get one or two pts. a year with it.
Its even more troublesome that my tsh did not rise in the blood work, so in the future determining the cancer by a blood test will not be a reliable source of checking the cancer marker numbers, sigh. He said only one of his professors at Sloan Kettering ever had a case like this that he mentioned and he learned of in his career so far, gheesh.
He didnt say this so much but the oncology nurse said - since I have had a really high dose of rai and it didnt do its job, the rai then its more probable that I will test out as non avid with the scan.

If I am non avid there was some mention of possible external beam radiation or just watching it, sigh

He said if I am avid then the rai dose will have to be high at least 150 and more than likely closer to 200. 6oo is the lifetime maximum dose and he agreed with me about my concerns of a secondary leukemia cancer, sigh.

He will confer with the endo on things.
The nurse and surgeon both mentioned Dr. S. the surgeon who almost killed me. I said, sorry there is no way I am going back to that guy who almost killed me. Nurse mentioned another dr. I called him Doogie Howser,.
They did exactly what the endo said they would - play politics and try to get me to have the surgery there. I said I will just take it one day at a time and do this testing first, The onc. nurse then mentioned another dr. and she said, oh but he is near the city. I didnt mention him, she did and I played dumb because its the exact dr. I am thinking of, the one who had a fellowship at MD Anderson, so that seems to me that they do regard him as capable for patients,,

My head is spinning. I will do another post of the lid, that is more head spinning.

I start the lid on monday. Keep praying.
 
LMP you are always in my prayers

I'm sorry this is all happening to you


God will never fail you

Hugs
 
LMP, I hopped over here and I am sorry to read your diagnosis. I hope you get what you need from the docs. I understand the frustration. Sometimes it is maddening.

Gentle HUGS!
 


Well here is my LID post

I actually started it yest and all I can say is I am glad I had the food in the house I was looking over my papers and noticed all the dates were wrong.
Well Nurse Mess Up (wanted to say something else but I dont think its allowed) calls and says oh I must have been looking at a wrong calendar or something, so start the diet asap, tomm, at the latest, So yest. I started the diet, so now I have one less day of it, 13 instead of 14.

They seemed to have changed things and I asked her the rationale behind this. She said they follow the thyroid imagining national something guidelines. She said dont read anything on line.

I am still going to do the stricter stuff I used to do. Also some of their info seems to contradict itself, since she gave me a packet of stuff. One paper says dried fruit is ok llike raisins and then another says no dried fruit sigh,

The big thing was of course I can only have distilled water since we have an aquifier as our source here. They now no longer limit the meat to 3-4 ounces at least for this survey. She said eat as much as you want, wth??? I am only doing about approx 4. I have to psych myself out when I look at the salad and I say "Be The Bunny!!!" loll!

I will go shopping tomm for more stuff.

Great news is that dh found out that he is being able to keep his job for at least this new fiscal year which starts Oct. lst. That is a blessing because we really need the health ins. now for sure. They had a big meeting of course when dh was with me in the hosp. He sent someone to represent his interests and that guy told him only 4 things were approved and everyone else is not getting funded so its a gift from God for sure that we so need.

Well ds3 just saw Aladdin on Broadway and said it was good,
 
LMP, don't worry too much on the length of time for the diet. One year when I went to a thyroid cancer conference and heard Dr. Ain speak (he is a specialist on aggressive/rare thyroid cancers), he talked about the LID and said that they always tell patients to do it for 2 weeks, but it really only takes one week to decrease the iodine in your body. He said that so many patients mess up the diet in the first week and they are "good" at it by the second week, which is what counts. He said if you get really good with the diet, you would only have to do it for one week. But the published guidelines all will say 2 weeks.

There seems to be some conflicting info on the dried fruit because some are preserved with sulfur dioxide and it has been confused with the sulfur used in molasses. I think they may have that wrong, but I think if you could find some dried fruit that didn't use that (maybe Trader Joe's) you'd be fine with as much as you want. But you know what to do!!!

That's great news on your husband's job and, hopefully, as time goes on, some of this "governmental" confusion will settle down. It's been a mess for everyone.
 
Well I am soldiering on with the diet. Almost wanted to give it to ds3 today when he was cooking bacon and eggs, sigh.
Also found out what a package direction means when it says watch carefully. A nice explosion of oatmeal greeted me in the microwave and I found out again, I really dont like oatmeal, I am glad that there was less than a quarter of it left in the bowl. I had to drown it with cinnamon, pure maple sugar pecans and bananas.

Dh nice 3000k tooth is a mess again as the cap fell off. He is going back to the dentist tomm. I just dont know how much more to keep pouring into this thing. I dont think it should fall off.

We are going to get a lawn service. Ds1 is lazy, ds2 is always with the gf and ds3 works every other week end, so we will just divide it and charge it on their rent. The guy is giving us an estimate later today. He cuts the grass next door, well his son was and dh just went up to him and asked him while he made a quick lunch break home.

I lost it emotionally in church yest. Our pastors wife texted me today and I explained everything to her. She is sweet but younger than us for sure. I alternate between holding it together and falling apart and of course praying alot.

Waiting for the endos office to call me back with a followup appt so we can discuss surgeons.
 


Peanut butter on matzoh, walnuts, a clementine, blackberries and apple slices with cinnamon, yup that was lunch today.

I was doing a little on line research so I can be informed when I talk to the rad. onc. again. Honestly I did not like what I read at all, Particularly if I turn out to be non avid. I did read they are working on two drugs and since he was at MSK it will be nice to hear what he thinks.

The endos office never called back. You have to go to the hosp. central scheduling number anyway. I called again, said I left a message friday, no one called me back so she said ok, you can come in August, I said no, She said what are you being treated for. I said cancer and this is urgent because we have to discuss surgeons. So I am now going to see her May 9th. Yup, advocating for myself.

Also this diet is really messing up my body. I am getting so many leg, rib cramps etc. So I have to eat alot of bananas and that helps it alot.
 
Well whats new - hmm yest. I had a call via dh that the rad onc. called and said I had to call our ins. comp. I call them up and they say - oh you have to authorize us to send the thyrogen to the dr etc. I then had to answer a million gazillion questions since this is a specialty pharmacy the ins. company uses. She said ok I will have it there tues. I said, um no what. I think the test is scheduled earlier in the week. I was just saying that as I wanted it there asap. So she said I will mail it out tomm. I said ok. Then she says well we take credits cards and you owe $50, lol. I am just loving our new ins, not!!!

Then today I called the rad. onc,. just to make sure everything was ok and she said they told her that it would arrive there today, ok.

Next later on today dh proceeds to tell me the rad. onc. nurse called him, I dont know why they are not calling him. I will check this out when I get there. He says I have bad news from the nurse you dont like, lol. I freak out and ask what it is. He said they are changing all your test dates. I start to cry. Thinking I will have to be on this terrible diet even more. Dh is not the best communicator,. I like to cut right to the chase with just facts. He says they are switching your dates to a day earlier, so now I have thyrogen on Mond. thyrogen on tues. and scan on wed. because they said the nuclear med. room will not be available I did see them doing construction when we were there. So one less day on the diet for me, yippee. I feel like I am hitting the wall with the food.
 
LMP - Just catching up from being away visiting DD.... I'm praying that God leads you to the perfect doctors and hospital to care for you!
 
Well today was a poop show as ds 3 would say. What was to be about 30 min turned into 1 hour and 45 min.Dh advocated for me twice. Nurse Ratchett ignored me and finally the sweet male nurse who's English was hard for me to understand and apologized for the delay. I think the onc didn't sign the med release order.He said this won't happen Tomm. I feel queasy and light is bothering me
 
singing mom - glad you had a great time seeing your dd. What Disney places did you eat at? I love to hear other peoples opinions on places.

Well peeps, channel your inner Annie and sing a long with me, tomorrow, tomorrow I love you tomm. you're only a day away. The light at the end of the tunnel. Praise God.

Last night was rough. Nausea, and craziness. My body is rebelling against this for sure.

I dont know what my first real meal will be as my stomach is queasy every time I eat lately.

Say prayers.
 
LMP, it's almost over and I can't wait to hear your "relief" post tomorrow. Good luck with everything and I will be thinking of you all day tomorrow. I know how stressful it is.
 
singing mom - glad you had a great time seeing your dd. What Disney places did you eat at? I love to hear other peoples opinions on places.

.

Say prayers.
DD and I ate a few local spots this time - Bonefish Grill in Winter Garden, Caprino's in Windermere, and then our favorites:
Brown Derby Outdoor Lounge in HS, The Wave at Contemporary, Kona Café at Poly, Grand Floridian Café, Blaze in Disney Springs, California Grill Lounge at Contemporary, and our ultimate favorite Tutto Gusto Wine Cellar in Epcot. We tend to enjoy cocktails and appetizers. It was a very pleasant visit - we shopped, visited with some friends, I took care of "mom" things for DD. We will see her in a few weeks when she meets us here to start our Spain Adventure! Then she returns to Fantasyland Attractions - she's looking forward to returning to Magic Kingdom to work!

I will be praying for your health. Be strong! God is good.
 
I just saw this printed out mostly in caps sorry just too tired to fix it all.
Well the thy carcinoma study is done. It was hell. Nothing like the pet scan and best was that the guy who did my pet scan was doing some of this scan too. He is such a nice guy. Never got his name. He said - you look familiar - did I do a pet scan on you. I said yes I think you did, then he pulled down his mask and I knew it was him. Knew his voice too.

Well the day started off in rad. onc. because I was asking about this blood test on the instructions. They never gave me a script for it. The rad. onc. is sitting there staring at his computer and ignoring me, gheesh. Then I verify with the onc. nurse, who has now earned the name Nurse Ratchett from me and said I am having an appt. with the onc. on May 9th in the afternoon, I said for what. She said to discuss the results. I said - do you mean to tell me you are going to make me wait until then to get the results. I said THAT IS TORTUROUS. She SAYS THE TESTS WILL BE OVER TODAY AFTER THE DR. GOES HOME. i sAID LOUD WELL CANT HE CALL ME AT HOME AND JUST SAY GOOD OR BAD ETC. so THEY AGREE HE WILL CALL ME.

THE TEST WAS TORTUROUS MOSTLY DUE TO ALL MY BACK SURGERY,. tHEY DID PAUSE AND TRY TO REPOSTION ME. my r HIP HAD PAIN SEARING THROUGH IT THEN LATER MY l LOWER BACK HAD THE PAIN SEARING THROUGH IT FROM LAYING ON THE HARD PLASTIC TABLE. aND PAIN WAS SEARING ACROSS THE BAck OF MY SKULL BETWEEN MY EARS SO THEY PUT A TINY PILLOWCASE IN BACK, GHEESH. i STARTED HAVING PAIN SPASMS AND WAS MOANING BUT i GOT THrOUGH IT. aFTER IT WAS OVER i WAS SHAKING IN PAIN AND HAD A GIANT STOMACH ACHE. mORE ON THAT LATER.

wELL NO SOONER THAN THEY WHEEL ME IN THE WHEELCHAiR TO THE WAITING ROOM THEN i SEE DH ON THE PHONE WITH THE ONC. mAYBE BECAUSE i SAID LOUDLY WHAT A BUNCH OF messups WHEN i LEFT RADIATION ONC. EARLIER IN THE DAY??? i DIDNT CARE AT THIS POINT,. i HAD IT, OH DID i SAY i HAD TO WAIT 1 1.2 HOURS FOR MY FIRST THYROGEN SHOT BECAUSE THE RAD. ONC,. DIDNT SIGN ThE RIGHT ORDERS.

wELL AS EXPECTED HE SAID i AM NON AVID. tHE TUMOR TOOK UP NONE OF THE IODINE, SO HE SAID JUST GO GET A SURGEON AND i AM CANCELLING YOUR NEXT APPT. BECAUSE THERE IS NOTHING i CAN DO TO HELP YOU,. i SAID WELL WHAT ABOUT EXTERNAL BEAm,. hE SAID i DONT WANT TO USE THAT NOW. so THERE yOU, GO, sEEmS LIKE HE JUST CHANGED MY HOPEFuL TO HOPELESS.

So now tues. we are speaking to the endo about surgeons. Oh and the stomach ache. Yup that caused me to have 3 rounds of explosive diarrhea. I told dh I thought it was from the radiation, He said no. It woudlnt do that. Oh well

So there is my cancer world and welcome to it. Thanks for the whine and such is life. All I know is I am so glad I have my faith right now.

Oh and if that was not enough, last night dh work took a bad problem and now he is afraid they will get rid of him again, oh gosh.
 
So now tues. we are speaking to the endo about surgeons. Oh and the stomach ache. Yup that caused me to have 3 rounds of explosive diarrhea. I told dh I thought it was from the radiation, He said no. It woudlnt do that. Oh well

So there is my cancer world and welcome to it. Thanks for the whine and such is life. All I know is I am so glad I have my faith right now.

Oh and if that was not enough, last night dh work took a bad problem and now he is afraid they will get rid of him again, oh gosh.

I am so sorry things were so unpleasant for you. And I disagree with your husband - I think the radiation CAN be the reason for the explosive diarrhea. Keep that faith - it is what gets us through. HE knows what we are going through. Put it in HIS hands - I pray for our dear Lord to give you strength and courage to get through this.
 
LMP sorry you are going through all this. I don't know where you live but if you are near NYC try a hospital there. MSKCC saved my Dad and my SIL just had successful surgery there. Not thyroid but pancreatic and ovarian. Don't feel hopeless there are other doctors out there, I pray you find an excellent surgeon.
 
LMP, I'm so sorry you had such an AWFUL day. That sound horrible. I am sorry also that you were non-avid but, to be honest, if they can visualize the offending lymph node, surgery is the best option for getting rid of it. Do they do alcohol ablations anymore? My coworker had that done often because she is non-avid. Again, I'm sorry this wasn't better news for you but I don't think it's too out of the ordinary for distant nodes to become non-avid. There are protocols in place for that so hopefully your endocrinologist knows which direction to take next.
 

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