meritaylor's Cancer Blog

Hi,
I just had my RAI this morning. I have papillary carcinoma, both sides so a total removal. I was on cytomel for awhile too. I didn’t have very good results untill I was switched to synthroid about a month ago. Befoe my RAI I took 2 thyrogen injections instead of going hypo. It was awesome no side effects, a little crying which was weird. I remember after my surgery I would start crying out of the blue, my emotions were really screwed up for awhile, it kinda felt like that after my thyrogen injections again. Today I feel okay, glad to have it overwith. I hope you are doing well after your surgery. I can’t believe how hard it was to sleep and get comfortable. You went back to work early. What kind of job do u have? Take care, Val

I have papillary too- on one side. They found it also in one of the lymph nodes that they took out.

I guess you were able to continue your meds because of the thyrogen? So far I feel fine on cytomel. I started Sunday so today is day 4. I wonder if thyrogen will be an option for me…what did your doc tell you about it? Almost like being post-partum with the crying!

I was just ready to get back to my old routine. I work in an office (hr) so I do mainly computer work. Talking to people was exhausting. Only stayed for a few hours only then I felt like I hit a wall of tired then went home! Felt fine yesterday and today though.

Glad to hear that you have had your RAI and hopefully you can get on with your life soon :)

Posted on February 3, 2010 at 1:43:01 PM by meritaylor

Hi Meri,
Hi Meri—Welcome! Unfortunately,I’m not able to paint a rosy picture of being hypothyroid but I will spare the details unless you want them. Some doctors will give you Thyrogen injections when you are stage 1 so you can avoid the hypo. Mayo probably has its own protocol, but Thyrogen is worth asking about. How much lymph node involvement did you have? (I had extensive mets; no Thyrogen for me). You are back to work quickly! I’m impressed with your speedy recovery.
Best,
Andrea

Posted on February 3, 2010 at 2:07:00 PM by andreaj

Hi Meri – Welcome to the blog. . . I’m curious as to which part you are thinking is the bad experience. . . The Cancer? The Surgery? The Treatment? The Daily Meds Forever?

You’ve got the surgery behind you. . . so that’s a huge step. I too went back to work – the 8th day post-op. I too was given Cytomel. My Endo said that thyrogen injections were not the best thing to do after post-op, that the best cure rate comes from becoming naturally hypo-thyroid without the injections. He wanted me to be completely hypo before the treatment to make sure I got the best benefit from the RAI. He did say that IF I ever have to have additional treatment that he will not make me do the diet again – I will get to have the injections. I guess once you are stable on thyroid meds and they know what your new “normal” is then they can do the injections to know how to get your numbers back down.

The Lo-Iodine Diet. . . yes it sucks, yes it is hard – but it is doable. . . and I actually got to where I liked the food I prepared. I lost my appetite and could not eat large quantities – but I did look forward to each meal. In preparing for the RAI treatment and then waiting for the body scan 7 days later I was on the diet for a total of 20 days. I was so looking forward to REAL food – only to discover that the RAI killed all sense of taste. It did come back. . . a little at a time and that was like coming back to life. To take a small bite of something to see if it had taste – and when it did it was really exciting. This side affect does not happen to everyone, but it’s one that I wish I would have been told about. . . so that I would be prepared.

When your doctor puts you on the diet – please contact me – I have some tips for preparing your food. . . and what to have on hand after you have your treatment.

In Florida, do they let you go home after your treatment or are you confined to the hospital? This is very important to find out ahead of time. Again, when you find this out please post – or email me so that I can help you be prepared.

The treatment – other than being extremely hypo – so having NO energy. . . the 3 days of seclusion went by ok – I went back to work 5 days after mine. My co-workers were to freaked out to be near me any sooner. I had my treatment on Thursday afternoon – he said I could go back to work Monday morning, but I waited until the following Wednesday.

The highlight – having my full body scan the following Friday and during the conversation with the tech she provided a geiger counter – which went crazy when she passed it over me. I hadn’t laughed so hard in ages.

My Endo started me on a very high dose of Synthroid – to get me out of being hypo as fast as possible. I went back for a blood test after 6 weeks – he decreased the dosage. . . I go every 3 months for a checkup – and each time the dosage has decreased. I am completely over all of the hypo symptoms that I had for eight years. . . and during that time when I had my thyroid tested my results were always within the normal range. So, I finally “feel” normal. So this is not bad, this is good.

I still have a side effect from the RAI treatment, that is for another time. . . but you MUST keep positive. . . and as I’m sure you have been told. IF you HAVE to have cancer, thyroid cancer is the best. . . IF you HAVE to have thyroid cancer, papillary is the best of the 4 types. It is treatable/curable. . . but you have to do your part. . . and stay positive.

As far as the crying. . . I still have my moments, that for no apparent reason the tears start flowing. . . and I remember what my Mom used to tell me, “And this too shall pass.”

My next followup visit is tomorrow. . . so we shall see what this next appointment will bring.

I hope you continue to recover well. . . I’m almost 9 months post-surgery and my scar is almost gone. People who don’t know that I had surgery don’t notice it unless it comes up in conversation. As soon as you are able – rub the scar area with lotion as often as you can. My surgeon also told me to massage the whole neck area several times a day. . . like when you are driving – or sitting at your desk. The more you do this the faster the scar tissue will break down and not be lumpy. One thing that I have never seen posted anywhere. . . it takes a long time for the feeling to come back in your neck. Since the nerves were disturbed it takes months for the sleeping sensation to go away. It was 7 months after surgery that my neck started having severe shooting pains. . . it was everything finally coming back to life. . . the massaging helped that too.

Anyway, enough of a ramble for tonight. We are here for you. Please ask any questions – remember, all of us are different and will experience different things, but having the knowledge of what might/could happen is a powerful thing.

Prayers coming your way,

-Kathy

Posted on February 3, 2010 at 5:16:40 PM by garlandkat

Andrea-thanks for offering details…but after giving it some thought, I think I’d rather just experience being hypo instead of knowing what it was like for others. (placebo effect?) They found metastasis in one of the four lymph nodes they took and the right thyroid lobe was clean…

Kathy- thank you for your story and all of your support. I will definitely be in touch soon. I go back to the endo today to find out what lies ahead for me. I’m not too worried about the Low Iodine diet. Kind of looking forward to it. It sounds like a very healthy way to eat…almost nothing processed, etc. Maybe I can drop a few lbs? Wishful thinking probably! My wish is that I can start feeling as normal as possible as soon as possible. I want to feel good enough at the end of March to take my son to Disney for his 3rd birthday. I really feel like attitude is everything so I am staying positive and determined!

Thanks to you both :)

Posted on February 4, 2010 at 5:23:52 AM by meritaylor

Hi Meri,
No problem re: life as hypo. Your doc will give you a “what to expect” list.
The LI diet was sometimes inconvenient, but the diet itself was not a big deal. I missed ice cream but I found coconut milk ice cream equivalent at my local natural foods store. There is a free cookbook at www.thyca.com. Preparing in advance was helpful. I made bread and some soups, and put them in the freezer for the duration. I was on the LI diet for 3.5 weeks.
Kathy is a few months ahead of me. I had surgery at the end of October. I am amazed at how well my neck has healed.I have a 6” incision and it is smooth already.
You’ll need to be away from your child for a period of time after RAI, so that will something to plan. Find out what the protocol is at Mayo. You’ll also have to separate from your husband for a few days.
You are doing great. Crying is okay, and part of the deal. I’m sure the Mayo docs have said that your prognosis is fine.
We are a good group here in the thyroid section of this blog. Ask any questions that come up.
Andrea

Posted on February 4, 2010 at 3:42:47 PM by andreaj

Thanks everyone-
Met with Endo yesterday for post-op and what to expect for the future. In the next few weeks I’ll meeting with the radiology oncologist to discuss RAI. The dose will be approx 100 of I-131. Off Cytomel and on the Low Iodine diet for a total of 3 weeks before starting Synthroid. Then back at 6 and 12 weeks for labs. Then 6 and 12 months for neck ultrasound.

I’m fully prepared to tackle this head on and get it over with. I cannot find it in me to be upset or resentful about the unpleasantries that lie ahead for me. It is a small price to pay for having a cancer that is curable when so many others are destined to experience much worse having to be treated with chemo and radiation or even death. I am grateful that this will not claim my life and that I can watch my son grow up to be a man. So in regards to having to be hypo for a few weeks…bring it.

Posted on February 5, 2010 at 6:38:49 AM by meritaylor

You need to have a lot of patience , this wont be easy and the worst is the waiting. Myself got diagnostic with thyroid cancer (papillary) 2 years ago and I’m currently a patient at Mayo Clinic in Jacksonville , Florida were I was transfered around 8 months ago after 700mlc of radiation (3 doses in 3 different times of Iodine pill)failed. My case was transferred by my doctor to Mayo Clinic because he couldnt get rid of my cancer with the radiation pills.
My scans are not showing anything bad, after a ultrasound they noticed some lymp nodes on my neck (left and right side) and they performed a biopsie that come back negative (thanks God!).
The problem that I have is my blood results. It still shows a 2.9 level of TH that the DR said it should be 0.1 the most.. there is nothing they can do so far except wait for the cancer to develop or either just check it every 6 months as they are doing now. The wait and the desire to know whats next is the worst thing that can happen to me, but I dont have a choice except wait. The doctor at Mayo said there is people who live years like me and they only have to check every 6 months to see what happens. They cant find the remaining cells to do something. So I decided just to get over and move on with my life and try to dont think about it, although I cant deny there are days that I want to give up but I only have to see my kids around me to forget about it and keep it up.
I really hope you feel better, just be ready and dont expect results soon, this is a long way to go and you will need all your strenght to fight cancer.
Hope the best for you and your family :)

Marie, I do hope that the doctors can figure out what’s going on. Mayo is a great place to be. It must be terribly frustrating to have had to got through 3 different RAI treatments and still have the blood tests come back and be off. It’s a relief to not have found cancer in the lymph nodes as I believe it would spread there first?

I try to enjoy each day to the fullest knowing that any of us could die in a car crash tomorrow- then all of the worry about cancer would be for nothing.

I do not take it lightly- I am in fight mode and, like you, my main motivator is my son. I just try to have to have the best attitude possible because I believe that is a major part of getting through anything.

My best to you. ~Meri

Posted on March 3, 2010 at 5:27:14 AM by meritaylor